Daughter Track

I Spent the Night Shopping with Mom

2007-03-27T08:20:00.000-07:00

After Mom had her heart attack three years ago, her doctors would always ask her, "Are you still smoking?"
She would smile and reply, "Only in my dreams."
Mom smoked for so long and probably missed it so much that she told me she often dreamed of having a cigarette. "And that's good enough," she would say when I would ask if the dreams made her want to light up again.
I've dreamed of my mother often since her passing. Often, I cannot remember the dreams, but sometimes, as I did this morning, I can.
Mom and I were shopping at J.C. Penney at Indian Springs (for those of you who don't live in K.C. Indian Springs mall barely still exists and J.C. Penney is long gone) as we had many times when I was a child into young adulthood.
We were looking at a whole new wardrobe for Mom as we had spent the time before going to the mall throwing out all of her old clothes that were drab, worn and old. Still, Mom chose the exact same wardrobe, only the clothes were new and bright. As we did in life, we had a fabulous time picking out this whole new closet of clothes for her for an important trip she was taking.
We all interpret dreams differently. Some people don't believe they're anything but our minds remixing events of the past few days. This could be the explanation for this dream as the other day at another mall, I was shopping for clothes while missing my mother terribly.
But Mom believed dreams have meaning for us. For example, another dream I remember since her death involved us driving to our house in the Ozark Mountains. We had planned on moving there this year and taking Mom with us. In the dream, I'm taking Mom there for the first time and we encounter an avalanche of snow. We weren't frightened and it didn't hurt us, but we were in awe of its beauty. In my Dreamer's Dictionary, a book my mother gave me to help interpret symbols in dreams, snow avalanches means that you will embark on a beautiful journey, but in a different way than anticipated.
Exactly the way I see my journey with my husband to our new home this year - we're still going, only without my mother's physcial presence. My mother is also on a journey we didn't anticipate, but that doesn't mean we're not still together.
I couldn't come up with a meaningful explanation of my dream last night in my book, but my intuition tells me that the clothes represents her old life in her physical body and her new clothes her new life in her spiritual one. The mall represents the past that we can still visit and draw on our good memories.
And like Mom with her cigarettes, as long as I can still be with her in my dreams, I will take that as comfort.

The Unsinkable

2007-03-26T06:20:00.000-07:00

I attended a writing workshop on Saturday and three of the seven members had essays and/or chapters they intend on turning into a book about giving care to an elderly family member. In discussing our work, others chimed in about their own experiences.
That did not surprise me, as many baby boomers are dealing with this issue. What I did learn was that anyone who’s given care to an elderly family member usually has something that reminds them of the helplessness of both their loved one and themselves – and the memories aren’t good ones.
For a couple of women, it was a talking clock that signaled their loved ones were up. For others, it was bells on a walker or bells their loved ones could ring when they needed help.
During the three days my mother was here with us, we had to have her in our downstairs family room for several reasons. That’s where the satellite television is, where she could watch her beloved CNN and it is also the only level in the house where we could get her in a wheelchair – and she was also right next to the restroom.
However, Mom and I both didn’t trust that she was strong enough to even take the 4-5 steps to the restroom without falling, so I needed something as a signal. I searched high and low for a small bell or even something she could bang and the only thing I could come up with was a replica of the bell on the ship Titanic that she had once given me as a Christmas gift to go with the lighthouse/ocean ship décor of our master bedroom.
The bell was heavy, but Mom said it would be ok and during those three nights, the ding-dong awoke me several times as a signal Mom needed to get up.
Sometime after Mom passed, my husband picked up the bell while moving it out of the family room floor near the chair where Mom sat helpless for those three days.
Ding-dong.
He rang it as a joke.
“I don’t think I ever want to see that thing again,” I told him. The look on my face told him it wasn’t funny and the look on his face told me that he too realized the irony in the word “Titanic” etched into the brass.
He put it away so I don’t have to look at it – at least for awhile.

Shades of Jade

2007-03-13T06:28:00.000-07:00

I’ve never had a green thumb as my mother did. When she was younger and able, spring and summer was for planting and pruning the mix of perennials and annuals in her many gardens in the yard of our home.
Although I can plant and keep potted annuals on my deck (which I have received compliments on), I don’t have an eye for landscaping, and with three dogs, our yard is a disaster.
When Mom moved to her apartment this time last year I inherited three hanging indoor baskets from her. It was only supposed to be temporary while we waited for a maintenance man to come and hang some hooks from the ceiling in her living room. When he finally made it, she decided it would look too crowded with the plants and she told me to keep them.
The reluctant gardner that I am told her I would do my best. And I’m happy to report that I’ve kept these plants alive for an entire year.
Cacti are my thing. I think they’re pretty and best of all, you can ignore them for months and they will stay alive.
I’ve had a jade plant that my mother in law gave to me some years ago. Each summer when I place the plant outside, it thrives – even losing half of its plant during a sudden hailstorm several years ago didn’t kill it. Each winter, when I bring it inside, it start to lose some of its little green leaves and always looks a bit under the weather by the time I can put it back outside (usually after fear of frost around May 1).
This year, however, has been different. Like the turn of events that took my mother, the jade plant became sick fast this winter and I’ve fought to keep it alive.
I’ve talked to it and told it to “hang in there,” my aunt even talked to it while she was here. But it seemed, the more attention I paid to it, the sicker it became.
And although I’ve inherited even more plants (I already killed one of the sister plants Mom gave me to one of hers a couple of years ago), saving my jade has become a never-ending quest.
I even dreamed that my mother told me to water it more – something I now realized probably did it more harm than good.
The weather has finally turned warm enough this week to put it outside and I will be able to keep it out probably now through the end of the week.
But I have to wonder, if like humans, plants may not have a lifespan too. Do they grow old and week and tired, despite our best efforts to keep them with us?
Only time will tell now if my jade will perk up with the warmer spring temperatures or if its time has too come.

The Unexpected

2007-03-08T05:15:00.000-08:00

It's the unexpected things that I've come to expect.
The other day my husband and I went to the grocery store for the first time in weeks. My mother had been a part of this outing with me for 20 years - most of my adult life. Because she has lived near me and didn't drive, we always went together. And although she hadn't been able to go to the store with me for about a year and a half, I still shopped for her.
My coupon book contained old lists in her handwriting, scratch off lottery tickets to be cashed in and her coupons. I eliminated all and laid the paper on the dashboard. My husband gave me a questioning look.
"I don't want to have a meltdown in the store," I told him.
As I set out on the produce aisle, I listened to the Musak blaring and pushed thoughts of my recent loss from my head, concentrating on what I needed to make a week's worth of dinners.
On the second aisle, as I put the canned fruit into the cart, I realized I was still arranging the goods into "Ours" and "Hers."
I teared up. Grabbing for a tissue, which was under my purse and also under the cloth bags Mom and I bought together to help save the planet, I realized it will be the unexpected things I will have to come to expect that will work me up.
There is no way to purge the bits of memories from my mind or my life until they change from painful to comforting.
I finally gained my composure and realized 3 of the 5 recipes I had in my hand came from my mother.
I chose them because they are a combination of my favorites and my husbands.
Comfort foods

What is Normal?

2007-03-07T06:37:00.000-08:00

When I emailed my list serve the morning I announced my mother's passing, I told them that my journey on the daughter track had ended.
What I should have realized even then was that it had only changed. Mom might be gone, but her bills, her apartment, her utilities and remnants of her life remained.
I had in effect, put on hold the daily routines of our lives when it was apparent that Mom wouldn't beat this latest health crisis as the others had been whipped. My husband and I ate fast food and from the hospital cafeteria, only coffee cups and a few spoons littered our kitchen sink. My dogs lay patiently by the windows waiting for some type of normal routine to take over again. The bills that were due got paid, the rest hung in our bill board, a crafty creation Mom made. Laundry piled high in our spare bedroom and the light on the phone indicating messages continuously blinked and were left unreturned.
When Mom left this world 12 days ago, a soup bowl sat in her kitchen sink, her last pot of coffee aged in her table-side thermos, neglected plants sat wilting and mail that didn't need immediate attention littered her sofa table. All reminders that five weeks before I had talked her into going to see the doctor and from there, he talked her into the hospital.
Remnants of both of our lives lie waiting for us to return in our respective homes.
It took us five days to clear Mom's apartment of her life. My aunt pitched the soup bowl and its fowl water. I took home and stored quite a bit, not yet able to rid my life of some of the things she loved. I distributed what she had on a list according to her wishes in her will.
We sold the rest.
Since Monday, I've been trying now to restore some type of order - some sense of normal - to our own house. Some things were easy. The dogs made some things simple, like our morning feeding and treat routines. Some have taken me days - that pile of laundry never did wash itself. Others I still haven't had the courage to face such as the mounting pile of bills (it's hard when you haven't been working full time for more than 4 weeks to open those envelopes). And we continue to work on other things. We're still eating what we have cooked or warmed up here on paper plates a friend brought when he brought some food over. We finally went to the grocery store yesterday and I planned a week's worth of meals at home. Other things involve getting used to what I won't be doing anymore: calling my mom every morning at 10:30 to make sure she was ok and ready for another day; taking her dinner over to her apartment, greeting familiar faces in the lobby and then chatting about her day and the day's news (yesterdays Libby trial would have been a biggie) or watching "24" with her, or calling her after the show if I wasn't there.
These are the first words I've written since her obituary. I took one writing assignment this week, maybe just to prove to myself I could.
Getting back to routine when something so out of routine has occured is not easy.

Betty B. Fivecoat, December 21, 1924-February 23, 2007

2007-02-23T13:45:00.000-08:00

Betty B. Fivecoat, 82, of Crosslines Retirement Center in Kansas City, Kansas passed away on Friday, February 23 at Providence Medical Center.
Funeral services will be held at 11 a.m. Tuesday, February 27 at Maple Hill Funeral Home, 3300 Shawnee Drive KCK. Visitation will be held at the funeral home from
6-8 p.m. on Monday, February 26. Burial Ft. Leavenworth National Cemetery, Fort Leavenworth, KS. In lieu of flowers, the family suggests contributions in her name to the Humane Society of Greater Kansas City, 5445 Parallel Parkway, Kansas City, KS 66104 or Immanuel Lutheran Church, 3232 Metropolitan Kansas City, KS 66106, where she was a member.
Betty was born on December 21, 1924 in Chicago, Illinois to Frank and Mildred Wagner. After only six weeks of dating on April 12, 1945, she married Frank Fivecoat, an Army sergeant, before he returned to his post in Alaska. Their marriage lasted 36 years before he passed away in 1981.
In 1980, Betty co-founded Sara N. Dipity Country Store, with her daughter, Linda. It was one of the first craft consignment shops in the Kansas City area. She later worked in Kerri’s business, Sunflower Sue’s Krafts. Betty retired from Treasury Drug in Shawnee, Kansas in 1995.
Betty is being greeted in heaven by her parents; her husband; her son, Steven; her brother, Frank (Bud) Wagner; her Maltese Muffin, Baby and Tinker; her extended family of grandparents, aunts and cousins and all of her good friends from Turner who she referred to as “the old gang.”
She is survived by daughters and sons-in-law Linda and Steve Bakken, Melbourne, FL; Kerri and Dale Campbell, Kansas City, KS; daughter Janet Fivecoat, Sioux Falls, SD; sister-in-law Kathy Munsell, Yellville, AR; five grandsons, Keith Boyd, Kirk Campainha, Steven “Shane” Bakken, Kory Bakken and Shawn Boyd; two exchange granddaughters, Stephanie Poerschmann and Meg-Ann Joss-Barwick; five great-grandchildren; cousins; her friends at Crosslines Retirement Center and Kerri’s dogs, who she called her ‘grand-doggies.’
We would like to thank Mom’s doctors and the nurses at Providence Medical Center for your compassionate care, especially Dr. Appl, Joan and Dr. Rodriguez.
My mom and I never left each other or hung up the phone without saying, “I love you.”
Mom, you know I always will.

The Line is in (and has been drawn)

2007-02-23T03:58:00.000-08:00

Wednesday was a more stressful day than any, I think.
We waited all day for them to take Mom down to surgery and all the while, in the background, the evil hospital administrator, who has been wanting Mom out for well over a week, lingered in the background, waiting to pounce like a lion.
She didn't come around, she hadn't been since our doctor requested she not be with him since her mere presence enrages me. But we got the message through both of Mom's doctors that they would try to move her to the accute care wing of another hospital as soon as her feeding pick was put into place.
As the hours ticked away and a 2 p.m. surgery moved to 5:30, I became more worried about their moving her when she was still under the effects of drugs.
The stress I felt came to a head about 7 p.m., immediately following Mom's surgery. Mom's nurse came into her room and announced,
"We have transport ready whenever you're ready to move with her."
I lost it. We had just been told by one of her doctors she was too unstable to move, yet here the vultures were ready to dump her on the nearest hospital that would take her.
I yelled and cursed and threatened a lawsuit.
After walking off my anger in the hallway, I came back and apologized to her nurse.
"I understand," she said. "I would feel the same if it were my mother."
I think that what families in this situation can do the most for their loved ones is just be there. It is hard, I've had to put a lot of my life on the backburner (including my work) for the moment, but my presence in the hospital allows the staff to realize this is someone's mother, grandmother, sister, aunt, etc. She isn't just a number or a name in their files. And the more family that can be there, the better (I've had more here since Sunday).
This nurse, at least, recognized the human lying in the bed, if the administrator did not.
She came back later and relayed, "We got the transport cancelled, it won't be an issue tonight."
I smiled and told her it wasn't going to be an issue anyway. She smiled back.
Determining Mom wasn't yet stable enough to travel, even by ambulance yesterday, they left her alone another day.
Her feeding has started, she wakes up every once in awhile and smiles at someone or surprises us with a joke.
I told her the other night I didn't know what to do with her head because I couldn't get her comfortable. She smiled and made a motion across her throat with her finger,
"Cut it off," she whispered.
We all got a laugh out of that because her wit and humor came at such a stressful and seemingly serious moment.
She's defied the doctor who once again came in and told us she isn't strong enough to continue much longer. Our family doctor who knows her best, says he doesn't know what keeps her going.
He should know its her wit and will. But now that the

Two Doctors, Two Mothers

2007-02-21T03:40:00.000-08:00

The respite my two siblings and my nephew have provided in the afternoons allows me to come home and put the stress behind me if only for a few hours.
But yesterday while I was gone, the cardiologist came in and had a "frank discussion" with them. He told them, as he told me on Saturday when I signed the DNR papers, about her weakening condition. But he added that prompting her to eat was only prolonging the inevitable. He said something like, "I would just make her comfortable. That's what I would do if it were my mother."
My nephew was clearly upset when he called me with the day's report before I went back in. Mom hadn't been eating well again since Monday and staying with her during meals had become an almost impossible task - both mentally and physically - for both of us.
My respite yesterday really focused on if I should talk to our family doctor again about the feeding pick before her planned move this morning to a rehab hospital. After I spoke with my nephew, I set aside my feelings about the cardiologist having an inappropriate conversation with my family when he knew I wasn't present.
I got ready and headed for the hospital early - even forgetting the special soup I bought for Mom hoping to entice her to eat that evening.
It was a nice day and I couldn't decide if I should park on one side of the building by emergency or on the front side of the building. Emergency was closer, but provided a very lonely walk to the car late at night. The front of the building passed by the gift shop, was a little cheerier and would give me the opportunity to walk in the late winter warmth longer.
At the last minute, I swung toward the emergency lot. I think things happen for a reason and I realized why this decision was made when I ran into Mom's lung doctor on the way in.
We had a conversation the morning before about Mom's eating and the feeding pick. I told him then she had started eating and I didn't think it would be necessary.
But yesterday afternoon I told him what the cardiologist told us and asked him the point of sending her to a rehab hospital as was planned today if we should just make her comfortable and basically allow her to starve.
He told me he would be up in her room in a few minutes.
When he arrived, he asked her condition before she got sick. Was she living on her own? How was her quality of life?
I answered honestly, yes, and fair to good, given she was getting around on her own most days alright.
"If it were my mother, I would do the feeding pick," he said. "There's still a chance, with proper nutrtion, that she can come back from this."
Mom is a small woman, all of about 90 pounds, soaking wet on a good day. She didn't eat 1500 calories when she was well, it was unreasonable to expect her to do it when she doesn't even feel like eating. Yet extra nutrition is exactly what she needs now if she is going to have a chance.
Mom was lucid enough to agree to the minor surgery, relieving me of the talk one of my siblings was trying to have with me about her suffering, our need to accept the inevitable (I already had on Saturday by my talk with mother) and knowing where to draw the line.
The lung doctor asked Mom if she wanted to get better. She shook her head unmistakenly "yes."
I'll be with Mom on whatever path she chooses. And right now, she still wants to fight so the line is not drawn yet.

The Rollercoaster

2007-02-19T10:40:00.000-08:00

I knew things were bad when the doctor came and talked to me about a DNR order (Do Not Revive). My stomach had been in knots since Wednesday when things quickly seemed to go downhill for Mom. By Friday night, I was very worried and by Saturday, no one who saw her expected her to make it through the weekend.
I called my siblings and told them they had better come.
On Saturday night, as the sun was setting behind the Kansas Speedway, which we can see from Mom's hospital bed, I sat close to her head and stroked her hair. I told her I loved her and that I wasn't ready for her yet to go, that I never would be, but that I would understand if she was.
It was important for me to tell her that I didn't want her suffering if she was just going on because she didn't think I could handle her being gone.
"You and Dad were the best parents anyone could have hoped for. You raised me right, you prepared me to handle challenges and loss. I will miss you, but if you're too tired to fight anymore, I..and everyone will understand."
I told her again about hospice and our options.
She told me in no uncertain terms that she wants to continue the fight. I relayed that to her doctor yesterday and we started a more aggressive course that will keep her from starving (she hasn't had an appetite and malnutrition was becoming a factor in her weakening state).
She was better yesterday and even better today.
We have a long journey ahead of us but all we can do is take it one hour at a time. Then maybe we can get to one day at a time.
And whatever the outcome, we will have done it together.

Everything in its Place

2007-02-17T08:42:00.000-08:00

Mom developed a curious habit everytime she's been in the hospital.
Her bedside table must be just so, coming from the left of her bed and everything on it must be in its proper order. This just isn't her, it usually didn't matter where things were in her house as long as she could find them.
I asked her about this the other day and she motioned to me it was so she would have everything within reach.
Still, I sensed it was something more than that and last night she confirmed it when I tried to put her bedside table to her right. "No, here," she demanded mostly with her improvised sign language. She could reach it just fine from the other side, but she wanted it to be where she wanted it.
This morning I finally understood why when my own need for things to be in order hit me. I got all my writing assignments completely finished; all of the bills written out for as far ahead as the bank account would allow and started cleaning the house.
Now, any of you who know me that isn't me. I'm a fly by the seat of my pants procrastinator.
I came to the conclusion that our out of the box behavior has to do with control. She's lost control of her health and the only thing she can control is the order of her bedside table. I've lost control of helping her and the only thing I could control this morning was the order of my business and house.
But right now, we still have each other and making the most of it is something I also can control.

I Love You

2007-02-16T18:47:00.000-08:00

When I awoke from the first of several mini-naps I got in the middle of the night last night, the first thing I saw dancing in front of me was the over-sized pink and red balloon I had sent to Mom's room on Valentine's Day.
Mom and I had a rule. We never said goodbye without saying, "I love you," even if we were annoyed at each other at the time. So when I saw the balloon swaying in the furnace breeze of the gift shop I stopped and ordered it sent to her.
When I visited her on Wednesday evening, the balloon dancing and swaying in Mom's room seemed to add a little life and cheeriness to the drab and dark feeling there.
Last night I called Mom to tell her "Good night and I love you." She usually now only picks up the phone and listens because she still cannot use her voice. But this time, she did not pick up. I called the nurses station and the phone there only rang. I panicked. Several seconds later, which seemed like hours, the nurse called me back and told me Mom's blood pressure and heart rate were dropping. She thought I would want to know in case I wanted to come back up.
In the middle of the night, the balloon only added an obscene sense of movement when I knew there should be none. It wasn't dancing a happy dance, but seemed to be taunting me.
I looked over at Mom from the recliner. She sat upright in her hospital bed, her eyes closed and chin laying on her chest, her head sometimes seeming to bob with the rhythm of the balloon and the machines beeping out a complimentary tune.

All Over the Charts

2007-02-15T07:40:00.000-08:00

There hasn't been much good news these past couple of days. Yesterday, Mom's potassium level spiked for some unknown reason.
Believe me, you don't want to know what they have to do to lower that.
Because of the treatment, Mom couldn't eat, which weakened her even further. My heart sank when I saw her last night.
This morning wasn't much better news. Although the treatment worked to get her potassium levels down, her blood count was also down this morning and so they're going to have to give her some blood.
I discussed with the doctor giving her nutrients via I.V. and her lungs aren't even strong enough for that.
And so we go on with another day. Me worrying and trying to get some work done and her hopefully, continuing the fight.

Drained

2007-02-14T02:04:00.000-08:00

My husband didn't realize until yesterday why I come home from the hospital completely drained. He drove me up there because of the snow we got Monday night into yesterday morning. I usually discourage him visiting because he isn't a big one to sit around making conversation and he gets antsy sitting in one spot too long.
I think seeing anyone you love sick is draining, but trying to carry a one-sided conversation is just completely exhausting. But I somehow managed to find a lot to say in the 2 hour visit, even though my mother can't get out a full sentence.
Which brings me to the other aspect of the whole experience that reminds me our roles are really now reversed. With a stack of adult diapers next to her bedside and the way we are having to currently communicate, in short baby-like words strung together, it makes the visits even more disheartening.
Still, I maintain a happy attitude when I'm there and if I think the whole experience is getting too much, I get up and comb her hair for her or go check with the nurse to see if any new orders have come in or she's been put on any new meds so I can do my homework after I leave.
Yesterday on the way home from the hospital, we stopped at a bar b que place where we used to stop after Sunday fishing trips to the nearby lake.
I'm usually not a week-day drinker, but our meals wouldn't have seemed complete without a beer.
I was right, it was what the doctor ordered to help relieve my tension and relax me into an early sleep last night.
Sometimes I just need the escape for a little while because from the moment I wake each morning I remember the nightmare we're living each day.

Another Vein Popping Day

2007-02-13T06:33:00.000-08:00

Our days didn't get on a good start, Mom's and mine.
I got up to the hospital early so I could see the doctor and talk to him about the swallow test and other things.
Along tags the woman who was with him on Friday.
While I was asking the doctor questions, she kept butting in with her own diagnosis. When I asked the doctor since the hospital didn't have any thickened water on hand if Mom could get regular water because she is continuously so thirsty, the woman replied to me,
"Well, it was evidentally determined that she couldn't have regular water due to a problem with swallowing. You don't want her to aspirate, do you?"
At this point, I'm really surprised my husband and my aunt didn't have to come see me in jail after I choked this woman so she would aspirate.
I'm tired of asking questions and getting no answers. At the same time, I'm tired of being told what my mother has to do to get well (such as going to the nursing home) by people who don't know her, or getting advice from people who aren't here living this day to day with us,
when the people who know her best (such as her doctor and me) seem powerless to do what we know is necessary.
I started shaking. I turned and looked at the woman and said,
Excuse me, but who are you, exactly?"
Doctor's eyes got wide just from my rise in voice and tone. He knows me, he's also been my doctor for over 17 years. He looked at me while still writing in his charts.
She did indeed identify herself as the evil hospital administrator who had Mom released the last time.
"Oh, and I am an RN."
I nodded my head.
"Well," I said, trying to keep my composure (my mother always taught me to try to take the high road), "This guy over here is an MD, and since I asked her doctor the question, I would like her doctor to answer it."
She didn't say another word.
Later, at the doctor's office, I smiled greeting the doc.
"I bet your day would be made if I lost my voice too. I'm sorry, but I don't like that woman."
He said he didn't like her either and we entered into another long discussion about the crappy system and how they follow him around pressuring him to release patients who are no longer covered by insurance or Medicare.
I later called a friend of mine, a former health care executive with another system. She explained to me about the reduced payments from Medicare, that doctors are feeling the heat from hosptials.
She in effect told me our doctor must be a pretty bad boy to have administrators follow him around on rounds.
Well, I've kinda always went for the bad boys.

High Anxiety

2007-02-12T03:44:00.000-08:00

Mom asked me yesterday in a combo whisper and sign language, "Do you think I can whip this thing?"
I hope she didn't see the fear in my eyes when I said, "Sure. You're a strong person. You'll beat it, just like you have everything else. Fight, remember?" I gave the clenched fist sign she had given to me the first day she was back in the hospital after our talk about hospice.
I told Mom yesterday how serious this infection is, that over - prescribing antibiotics didn't mean they had been over-prescribed to her. It's a general problem that causes infections to mutate into antibiotic resistant strands.
The one thing I cannot do is let her see my fear, because if she knows I'm giving up, she will too. The statistics aren't horrible, but they're not good. Roughly 30-40% of patients over 85 (Mom is 82) have lost to MRSA, mostly after developing pneumonia or blood infections. Mom's developed both, but tests say they are getting better.
I was surprised to learn that a cousin of mine had this infection as well. After 4 weeks of hospitalization and 2 more weeks of I.V. therapy at home, he finally beat it - twice.
Mom's been through so much, but she's beat the odds each time. The loss of my brother, a serious heart attack (of which a majority of women her age fail to live more than a year and she's made it 3) and now this.
It will be 4 weeks on Wednesday since the first onset of symptoms and only the 5th day since the dr. started her all over on I.V. therapy and se still have a ways to go. After asking me if I thought she could beat this she made the comment later, "You would think something would start to work by now."
It doesn't help that she still hasn't regained the use of her voice and the last thing I heard her say to me on the phone last night before going to bed was a very weak and raspy, "I love you."
Yesterday, I told her how serious this illness is, today I need to tell her that the fight has only begun and we both need to stay strong.
My fears need to be confined to my own mind - and they are.
I awoke this morning in the middle of a panic attack, my heart beating wildly and shortness of breath. I didn't share this with my husband, who heard me get up. But he seemed to sense there was something wrong (afterall, it was 3 a.m.) and came in and gave me a deep rub with our hand held massager.
He did much more than ease the tightened muscles in my back; he rubbed the strength back into me that I will need this morning to go in and pass it on to her.

A New Day, A New Round of Doctors

2007-02-11T08:18:00.000-08:00

"She makes me nervous. Always bad news, never good," Mom said to me of the nurse that was on the day shift yesterday.
Well, there isn't much good news to be had these days.
When I got onto the elevator, I an into Mom's cardiologist, I said, "Hello," to him and figured he was there to see someone else.
Nope. He had been called into see Mom because her EKG showed a "blip" they told me. "He doesn't think it's anything to worry about," the nurse told me. "He wants to do a sonogram on the heart just in case."
In case of what? Seems the infection could have affected her heart. And then we have the issue of her not having a voice now for a week. They're doing a swallow test on her today.
Oh, and they called in a lung specialist too.
Don't get me wrong, I'm glad they are being careful and she is having all the tests and doctors she needs (more than enough according to her), but it was just a little overwhelming yesterday.
I guess the good news is that the weekend shift isn't being so cautious about her contagious staph infection. They wore masks, but ditched the suits that made them look as if they were dealing with radioactive material.

Isolation

2007-02-10T08:37:00.000-08:00

When I walked into Mom's room early yesterday morning, I was suprised to see that her roommate had been moved. I walked to Mom's side of the room where she was busy digging ice from a cup to soothe her aching throat.
"What happened to your roommate?"
Mom's voice is still barely a whisper and I thought she said, "ICU."
I told her I didn't think her roommate looked very good the day before and wondered why they hadn't brought someone immediately in to share the room since the hospital was packed (hence the 5 hour wait in emergency for a bed the day before)
"No," she said pointing to her chest. "I-so-lation."
I furrowed my brow. "I'll be right back."
Seems this time, they're taking Mom's infection more seriously.
MRSA is a mutant staph infection that's a product of our society's overuse of antibiotics. As with the last time Mom was here (it was only 2 weeks ago, but seems like an eternity now) it can only be treated with one I.V. antibiotic. Normally not life-threatening, it is for the very young and the very old - especially those with chronic lung problems.
When I asked the nurse about "i-so-lation," she led me back to the room and pointed to a sign on the door I missed before.
"Anyone going in must wear a gown and mask," she said, handing me the i-so-lation gear. "And next time your mother comes in, we have to know because she'll always be a carrier. That's about all I know about it," she said, walking off.
I wore the Hazmat uniform until the doctor arrived and he wasn't.
He informed us Mom's x-rays were better. The pneumonia was clearning, but her labs looked terrible. Her white blood count was way low, signaling her body was trying hard to fight an infection. The swelling in her legs, which now looked much better, was caused by the poison in her blood cutting off the circulation - at least that's what I think he rattled. The swelling in her throat, the same cause.
And i-so-lation? He didn't know why she wasn't treated in i-so-lation during her stay before or why in the world they placed her in the nursing home room with another elderly woman, who was at risk for developing MRSA.
"We'll have to start all over with treatment," he said, while he wrote on his chart. "And this time, we'll get her started on physical therapy right away."
He pulled back the covers to reveal her shriveled, sore-ridden legs.
"I think I'll also have a wound care specialist come and look at this."
A woman, who looked more like a business person than a medical one, gasped a little at the sight.
I wondered if this was the hospital administrator with whom I'd argued about over Mom's release to the nursing home. I guessed it was and I wanted to say, "See? See what your stupid rules have cost my mom, me and this hospital?"
But I didn't.
Later, Mom, fed up with the whole thing, whispered as she dug another piece of ice from the cup,
"Stay. Here. Until I get well. If not, lawyer up."

Into the Hospital Again

2007-02-09T04:34:00.000-08:00

Why is it when you call an ambulance, the fire department comes to? I told them it was a non-life threatening emergency and that we just needed to get Mom out of the house and back to the hospital. Yet, the fire department are the ones who showed first - all seven of them from a huge ladder truck. And then the ambulance arrived with five more people.
It was quite a party in my small house.
After five hours of treatment in emergency, a bed finally came open in the hospital and she was admitted.
Her feet look no better and her breathing was shallow and weak.
Instead of bringing her broth for dinner, she got the regular menu, baked chicken, which she could not eat. I reminded the nurse before I left that she needed to try to get Mom some kind of protein.
I finally had to leave her in the care of the professionals and come home and get some work done myself.
Another long day and it's time to get up and start all over again.
The doctor will be there by 8 and I need to be there to talk to him and figure out the game plan. I don't want anyone calling me telling me we have four hours to prepare for a move to a nursing home. While I'm not expecting her to be released before Monday, I learned last time that although I thought I was being pretty hands on, it wasn't hands on enough.

Hospice = What, Exactly

2007-02-08T04:05:00.000-08:00

I was eager for the visiting nurse to get here yesterday given Mom still isn't eating solids because her throat is very sore.
Seems that wasn't the only thing very sore.
Mom told me her legs and feet were "getting better," a term I should know by now means, "Not so much," but I guess I'm a slow learner.
When the nurse pulled back her covers and took off her socks (which turned out to be wet with blood), I about passed out. Her legs were so swollen they had started to crack open and her feet looked like two huge blocks with tiny little nubs sticking out the ends.
I think it even freaked the nurse out too, who immediately picked up her cell, mumbling something about calling her supervisor.
When the phone was passed to me, I told her I didn't know how to take care of such wounds and that this was not the only thing that has not gotten better since her release from the nursing home.
When the nurse hung up the phone and told Mom she had to go back to the hospital, she shook her head and in the whisper (the only voice she's had since Sunday), said, "No," and used her hand to emphasize her point.
I told her it wasn't the nursing home.
And then she really upset me by pointing at me and whispering,
"She doesn't want me here."
The nurse, flustered by Mom's stubborness and my crying, tried to assure me I had done everything I could.
She then made a call and the next word I heard was HOSPICE. Telling Mom they could come to care for her and she didn't have to go back to the hospital.
Before I knew it, hospice was calling me saying they would be here at 4 to "assess your situation."
In the meantime, I had calmed myself enough to leave a message for the doctor.
When hospice came, she told me exactly what I already knew. Their services provide for people who had given up. Mom would no longer be admitted to the hospital for her breathing problems or anything other than another major problem.
Mom still didn't understand. Her lack of a voice and her failing hearing doesn't help, but I finally got her to understand what this all meant.
She wrote on a pad: "Hospital. I will go if you think best, but no #2. Please don't send me there."
#2 is the nursing home.
I told her hospice is a great service for people who no longer wanted to fight or when there was nothing left to do.
She wrote: "Didn't understand. There's more we can do. Hospital."
The doctor cemented my position. "When they called me I couldn't understand why you wanted hospice at this point, but told them 'if that's what they want, go ahead." He explained Mom's refusal to go back to the hospital and the fact she couldn't communicate well started the snowball that turned into the nightmare.
So when the ambulance comes this morning to take her back to the hospital, I will at least know that she still wants to fight and the doctor still thinks there's a chance she can get better again.
And I'll be looking for someplace other than #2 when the government once again insists she's well enough to be released because this time, I know from experience that if she can get better, she won't be able to do it in #2.

Growing Up

2007-02-07T05:23:00.000-08:00

The pressure of having an ill family member had been building on me for over 2 weeks over the weekend, but beside having a vein-popping meltdown in the truck in front of my husband Saturday evening I had handled it pretty well.
A writer friend of mine who sends out daily thoughts of the day happened to send this one on Monday: "Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are." -Bernice Johnson Reagon
As I read that yesterday, after Mom was all settled in and when I was more relaxed and rested than I had been in a while, I realized that is so true. I've been reading books and articles on adult orphans - people who've lost both their parents - for three years now. Trying to prepare for the eventuality of it and I have discovered at least one thing (about myself anyway): There's no way to prepare for it.
There's only coming to terms with it and I finally learned the other day while reading an article on the Internet partly why it is so hard to deal with. The article said that when your mother dies, the person who has reared you and protected you, taught you all of your earliest lessons, you are really finally really an adult on your own in this world.
I've known my husband since I was 15 and he 18. He too, has been there for me now almost since before I can remember.
Before my father died, he accompanied us on most family vacations. It wasn't until we were at least in our mid-20's that we had even taken a trip out of town alone. We had followed his father and step mother down to thier house at the Lake of the Ozarks and at the end of the weekend, our plan was to go to Branson, Missouri for a week alone.
As we turned onto the highway before us, my husband and I looked at each other and I said, "I've never felt so alone in my life. Do you feel it?"
He nodded his head and said, "I guess this means we're really grown ups now."
The challenges surrouding my mother's advancing age and illness has made me discover more about him too, although I didn't know there was anymore I could learn after 27 years.
When I was growing up, my mother told me the story of how great my father was during my grandmother's illness before she died. How he didn't balk when Mom opened up their very small home to her mother when she became chronically ill with COPD. Mom always greatly respected him for that and to me, that was a measure of a great man. During the past three years, my husband has done the same. He's been there for me - even carrying a cell phone when he hates the things! But it's more than that. When I had my meltdown Saturday evening, he took me in his arms while we stood in the driveway and gave me a long hug, reminding me I'm not alone in this. Like that day we turned our car onto that unknown highway toward the adventure of really being on our own in a strange city for the first time, I was reminded that he'll always be there for me. And its always good to be reminded, especially if it involvs a long, strong hug on a very cold night.

The Move

2007-02-06T04:38:00.000-08:00

I called the social worker in charge of Mom's care and the nursing case manager over to her apartment early yesterday morning. The call had to be made because of an earlier, 5 a.m. call Mom made to me to come over and help her to the bathroom.
I didn't mind getting out in 13 degree temperatures yesterday morning. It was something that had to be done because of a lack of judgement that ranged all the way from the doctor and nursing home to me and Mom over the weekend that ignored the fact she couldn't care for herself.
Better me be cold than Mom to break a hip.
But that arrangement could not last. I had come to terms with it and now it was time for professionals to convince Mom as well.
When the professionals arrived, I turned down the television and wondered how in the world Mom escapes complaints by her neighbors about the noise.
The introductions were really only reacquaintence formalities as these two had worked on Mom's care before. They talked, as Mom still doesn't have a voice. When the word "rehab" was brought up, that's when Mom quit listening. She started shaking her head and writing on a tablet Stay HOME!
They told her that was not an option.
"How about your daughter's house?"
They had already asked my permission before going in, knowing full well of my mother's stubborness.
She shook her head in the affirmative.
"There's one thing though, you'll have to show us you can get up out of your chair before you go to your daughters."
For the first time since her return home, she lifted herself out of the chair. It wasn't easy, but she did it.
She's been playing me all along, I thought. I knew then the only thing to keep her moving now was the threat of going back to the nursing home.
It was an exhausting day, dealing with medical equipment suppliers, who came to the house with the three machines that assist in her breathing and to outfit the downstairs bathroom. The nurse and social worker ordered her a wheelchair for the move and put in orders for a barrage of therapists and personal care folks to come starting today.
My husband was a prince. He works nights, but was up by 8 a.m. cleaning the house and clearing the clutter while I finished an assignment already 3 days past due.
And as I fell to sleep last night with the television blaring downstairs my last thoughts were,
I wonder how far down on the waiting list she is for those hearing aids?

Angels in Human Skin

2007-02-05T04:57:00.000-08:00

In the past few years, I've really experienced how small actions can make a big difference. I've had the opportunity to meet some really good people in my life. Mavis Wold being one of thos people. After reading a story about my brother in The Fargo Forum, she sent me an email volunteering to tend to his grave, which is far from us here in Kansas City.
That was a true act of kindness from a then-stranger, but many times we don't have to look any further than our own circle of friends for help. Last spring, another writer I knew from a group came one day to help me clean my mother's house out. I didn't ask for help, but she was there.
Yesterday, my long-time friend, Priscilla, asked what she could do to help me with Mom. When I couldn't think of anything, she brought us over a homemade Italian dinner, complete with salad, bread, spaghetti and brownies for dessert. She also brought my mom some flowers, which helped brighten her day. It was delicious and a welcome break (for our stomachs and our wallets) from fast food and take out.
Pris is a good person. We met nearly 24 years ago when she hired me as a temporary summer office worker at a tool and die company. Since that time, we've been friends through both of her parent's deaths, her divorce and remarriage and two moves. She was there for me at my wedding, countless moves, my brother's death and she also helped me with my mother's move last spring.
There couldn't be a better friend and like Mavis and Bertie, she's good people.
Pris made enough food to feed at least 10 people, and I was able to share that dinner with neighbors on my mother's floor who have been looking in on her and helping her when I'm not there.
And she's needed a lot of help.
I was taken off guard by her stubborness again when she told me in the nursing home that she wanted to go home, and that she didn't need to be taken care of.
I think she was in denial. Since she's been home, she lost her voice and she hasn't been able to get up out of her chair alone, nor has she been able to use the restroom by herself. While her neighbors don't mind looking in on her or even being there to make sure she's steady as she walks around her apartment, they don't want the responsibility of lifting her - and I don't blame them. It took me 30 minutes yesterday to figure out how to lift her without injuring my own back or breaking her frail, 90-pound frame in two.
Late night runs to get her settled in and early morning jaunts in 13 degree weather to help her into the bathroom isn't helping me get rest or assisting me in getting caught up with work.
Something will have to give today, probably resulting in Mom coming here at least for a little while.

The Other

2007-02-04T08:34:00.000-08:00

The nurse was giving me instructions at the nursing home yesterday about my mother's care.
"Are you an only child?" she asked.
I nodded my head and said, "yes," without hesitation.
Although I technically am not, for the first time that admission solidified what has been building for me all of my life.
My three siblings were 11-17 years older than me. I have no memories of the two oldest ones when they were at our parent's home and only a few memories of my brother - the one closest in age - before his return from Vietnam.
My siblings' childhood experiences were different than mine, and mine from theirs. They grew up in the decade of post war exhubilation. I was born in the aftermath of Kennedy's assassination and grew up in the decade of sex, drugs and rock -n- roll.
Their parents were young and full of life, mine were older and probably wiser.
Their family was one that attended church together on Sundays, my family was one of each of us involved in our own thing on Sunday.
Their father was one that attended their sporting events, my father was a workaholic/alcoholic that suffered a heart attack before I entered junior high.
Their father attended their graduations and weddings, mine didn't live to see me do those things.
As real siblings, we never really shared anything. They viewed my childhood from the perspective of parents themselves and maybe because of that, from the perspective of outsiders looking in.
My affirmation yesterday reaffirmed for me that the dysfunction that keeps our family from working is not what has been or is said, but the messages that are sent by what is not.
I have no idea why my siblings aren't here for my mother's last years/months/days.
I don't know why they've not offered any kind of assistance (emotional or otherwise) to either me or her in this difficult (and sometimes seemingly impossible) process of her aging and advancing chronic illness.
When I blurted out my affirmation, it began to free me from that loneliness that accompanies me on each visit to my mother's apartment at the retirement center. On each late-night walk down every hallway in every hospital. In every parade I made through the nursing home, past the lonely souls in wheelchairs who watched me march by as if I were there to crown the lucky parade queen who had a visitor.
And I know that their leaving our mother to those 1-person visits and me to those solitary parades was supposed to send me a message that I was just too stupid to figure out and now too weary to try.
We didn't share the same childhoods and experiences, but we share the same DNA.
That DNA should have been enough to guide us through the one experience that united us as siblings who share more than that.
Sadly, for all of us, this journey has only cemented the fact that it is the only thing we ever will share as siblings.
With my public acknowledgement of that, maybe now I can make my path a little smoother.

Party of Five in a Room Made for One

2007-02-02T04:58:00.000-08:00

My worst fears about this "skilled nursing center" where my mother temporarily resides was the smells associated with these places, which really aren't too bad. My other was that I would come in to the place seeing people sitting parked in wheelchairs dribbling on themselves waiting for someone - anyone to help them.
When I entered Mom's tiny room that she shares with another woman last night, she was sitting in a wheelchair facing her bed. They had just brought her back from dinner and she was waiting to use the restroom before getting relaxed. Her roommate had two visitors, one of whom is my distant cousin, and his wife, who I attended school with.
These rooms, which I would estimate to be no more than 10 x 12, really weren't made for 2 beds, let alone, 2 beds, 2 wheelchairs and 3 visitors. So, I moved mom's bed table out of the way and swung her around so she could at least participate in the conversation. And although my cousin and his wife came to see their grandmother and I was there to visit my mom, our close proximity to one another made it one big party.
Mom said one of the therapists had just started at this job, located in the most economically challenged county in our state. The therapist had just left a job in Johnson County, the most econimically affluent county in our state.
"She couldn't believe it," Mom told me last night of the therapists comments. "She said over there, they all have private rooms and its a lot nicer."
I know. I've written stories at the grand openings, some of the places would rival some of the most decked-out casino-hotels I've seen in Vegas.
I laughed and asked mom, "Did you tell her you not only have to share a space no bigger than a foxhole, but you have to share a phone and there's no basic cable? I bet she would have been horrified and resigned on the spot!"
Mom just shook her head. "Our tax dollars at work."
My Dad was a WWII veteran and worked at the railroad until he dropped dead of a heart attack at age 58. There just was no time to save for their retirement and besides, my mother erraneously thought the retirement plan at the railroad would take care of her. I'm sure my mom's roommate, who was a federal government employee, thought the same.
Later, after the other guests left, I had to move her roommate's wheelchair (who, after an hour and half was still waiting for someone to help her to bed) in order to scoot Mom by so she could get into the bathroom.
But the horrifying thing just isn't about space. It's about dignity. My mother, and by extension, I, know everything about her roommate and her condition, whether we want to or not. And my roommate, and by extension, her visitors, knows everything about my mother's condition.
That little curtain separating that tiny space didn't keep us from hearing her roommate getting sick and it doesn't keep her rommate from knowing my mother's reactions to her medicines.
I thought a lot about dignity when I was moving electrical cords to get her bed table back to where she could reach her water, book and glasses.
"You know I asked someone today if she could move that over here for me, and she told me she couldn't because there were too many cords."
I looked at the two cords stretching from her medical devices beside her bed to the lone outlet in the middle of the room.
"What? They didn't learn how to pick up electrical cords in whatever schooling these people have had?" I said in frustration. It had taken me maybe 2 minutes to get my mother access to what little she has in that awful place.
My mom says we don't have to wish bad onto people. Karma usually takes care of that. But driving home last night, I really hoped that someday these people have to lose a little of their dignity, maybe even have to beg someone to give them access to their bedside table. And if I could be there to see it, I would give up a little good karma.

A Change in Care

2007-02-01T06:53:00.000-08:00

When Mom was moved the other day to the skilled nursing facility just across the parking lot, apparently, none of her other records were moved with her. She wasn't there 10 minutes when the nurse came into ask her all of the questions the hospital had been asking for 8 days. Questions from "Do you have any allergies?" to "When was the last time you used the bathroom?" And then the questions got a little scarier - "Do you know if you were given the I.V. today?" Exasberated by this point, I asked the nurse, "Wasn't all of that included in her medical records that was just sent over here?" She shot me a dirty look, "Well, yes, but...." At dinner, they brought my mother an unappetizing looking bowl of low sodium soup and some no-sugar jello. She wanted the poke cake her roommate received. I told the nurse, "She is not on a low sugar diet." Again, the dirty look and "Well, that's not what the hospital has down." I told her to call her doctor, because I had watched her eat pudding, ice cream and even a piece of strawberry shortcake at the hospital.
Sure enough, she brought the cake in after speaking with Mom's doctor. I stayed with her until her meds were given that night. The next morning, a male nurse came in and hooked up an I.V., when he came back, my mother asked about it since they had been giving her antibiotics to her in the evening. He left the room and came back, "Oh, yes. These are the ones you're supposed to receive at night."
It is because we couldn't give these medicines to her at home that she is even still in the place, so we want to make sure she gets them on schedule and because the schedule was thrown off yesterday, I'm not sure what she got and what she didn't.
And yesterday, at breakfast, lunch and dinner, she had to continue to argue with them about her diet. Each time, having to wait 15-20 minutes for her food while they checked their records again.
This place isn't bad and this kind of thing isn't unusual when a new patient comes in. It is also why I am against the rule of Medicare deciding when a patient must be turned over to a nursing home, rather than the doctor making individual determinations based on his patient's needs. My mother, to our doctor's knowledge at this point, is not going to need long term care. She just needed 5 more days of I.V. therapy to make sure they have a staff infection under control.
All of this upheaval was created because Medicare refused to allow her to stay in the hospital for 5 more days - even though her doctor said that was best.
And the worst part of it was that Mom fell into a very dark depression yesterday. A depression that if it had happened to other elderly folks who didn't have a caring doctor with an excellent bedside manner, probably wouldn't have come out of it.
This is part of the reason why Muriel R. Gillick, MD, Hebrew Rehabilitation Center for Aged, Department of Medicine, in MA wrote in 2002 that the most elderly and frail patients shouldn't be moved from location to location:

"During a single illness episode, the sickest, frailest older patients are often treated in multiple distinct sites, including the emergency room, the intensive care unit, a general medical floor, and a skilled nursing facility. Such frequent transfers involve changes in physician, changes in nursing care, the rewriting of orders, and physical dislocation, all of which can adversely affect outcomes. This system, although efficient, increases the chance of medical errors, promotes delirium, and undermines the doctor-patient relationship. Partial solutions include a team approach to care, an electronic medical record, and substitution of home for hospital care. A more comprehensive solution is to create a geriatric hospital for treatment of the most common medical and surgical problems and for provision of rehabilitative or skilled nursing care. Designing new institutions for geriatric care will require new legislation and a new set of regulations but should be considered for the oldest and frailest patients."

My aunt said the other day that this country has a lot to answer for in the way we treat our elderly, our babies and our veterans.
Amen to that.

Ack!

2007-01-31T05:44:00.000-08:00

The things I hate most about nursing homes is the smell. And when we walked into the one where my mother is temporarily staying, the smell stopped me.
Turns out it wasn't the usual smell in these places - it was something much stronger. They were preparing kraut as part of the dinner last night.
Thank goodness that was the worst smell I encountered.
The next thing that frightens me most about nursing homes are the sounds. When my husband's grandmother was in an Alzheimer's unit, I took to wearing the earplugs he uses when he target shoots because I just couldn't stand the moans and yells.
One very loud moan. That's all I heard last night.
It probably helps that mom is in a wing where people are "too well for the hospital, but not well enough to go home."
With the exception of having to share a very small room and phone with her roommate and the lack of cable television (CNN withdrawl was already settling in), it seemed like an ok place to be. I think we can do it for 5 days.
"What's this 'we' stuff," my mother asked when I told her my observations. "You get to go home."
She's right. But it makes it far more easier for me to go sit with her if I don't have to wear earplugs or hold my breath.

The Healthcare System in This Country Sucks

2007-01-30T07:50:00.000-08:00

Warning: This is a rant. I'm not going to adhere to the rules of writing or even be philosophical. Proceed at your own risk.

I was informed this morning that they want to move my mother to a nursing home from the hospital. It's not because she is well and they want to provide her with round the clock physical therapy to help her back on her feet. It's not because she is so sick she will never be able to care for herself again.
It's not even because her doctor says so. He argued with the hospital this morning about her moving.
No, it's because Medicare says it is time for her to move someplace else where she can still get IV antibiotics so it is cheaper for them.
And why are nursing homes cheaper, particularly the ones that allow low-income patients such as my mother?
Because they staff their operations on a shoe string. They have one nurse on staff caring for 60 patients (confirmed this with a friend this morning at this particular place) and the low level of staffing affects everything about the place.
But because the government has a chart that tells them when patients have to be moved, instead of relying on a doctor, who presumably went to school to make such decisions for the care of his patients, we're now entering a new and very scary realm of care.

Oversight

2007-01-29T05:36:00.000-08:00

When we are children, our parents do everything in their power to ensure the people in our lives are there to protect us. Our teachers, the bus drivers, even the neighbors.
When our parents become old and ill, the job is the same, only in reverse. I don't know why it is in some people's nature to feel powerful over the weak and elderly. But these people exist, even among the ranks of nurses.
For those of you out there who have elderly parents in hospitals and nursing homes, I cannot stress the importance enough of making sure these places and the people who work there knows your loved one has an advocate.
I received many comments last week from people who advised me to go to the hospital at different times so the staff never knows when I'm showing up and to have different people go. The more the better, I was told. But that isn't an option for us, so I called the hospital's patient advocate - truly a great resource.
Not only did I see a vast improvement in my mother's care over the weekend, she even seemed to be enjoying the nurses yesterday.
So, caregivers who are new to the game, I suggest connecting with the patient advocate in the facility where your loved one is. At the very least, they will know your loved one has someone who cares. And it could very well improve the quality of care.

Betty's Bad Bug

2007-01-26T04:46:00.000-08:00

A little humor to end the week. Mom's doctor refuses to let her go home until they are able to name the strain of pneumonia that she has.
"Why don't we just name it. You can become famous with your own bug in the medical journal. We'll call it Betty's Bad Bug. Now, can I go home."
The doctor just smiles and shakes his head. "You're like a doll with a pull string. I come in here everyday and pull your string and you ask the same thing."
My mom likes her doctor, who does have a caring demeanor and dry wit.
She was in good spirits last night but I know my visit wore her out. I called when I got home (she worries about me driving around and being out after dark. Like many elderly, I think she believes the sheer blackness of the night might swallow me whole) and I could tell she was already groggy.
Until I arrived, she wasn't having a good day. It would be inappropriate for me to post why, but let's say I'm going to have a little chat with her doctor or the head of nursing about why it is important for the nurses to assist the elderly in maintaining their dignity.
Their family caretakers are aware of it every moment of everyday and they should be as well.

Awakenings

2007-01-25T05:09:00.000-08:00

It's not the dramatic transformation after her first hospitalization three years ago, but I think Mom is feeling better. She is griping about her nurses and lamenting the state of the union, so to speak.
After her heart attack the changes in her attitude were more dramatic. Not knowing what to expect, we took her home after three full weeks in the hospital. She was like a zombie, going through the motions, but not functioning on her own. She only left her chair to get up to use the restroom. She couldn't feed Tinker, her dog, and she didn't have an appetite either. Most times, we had to wake her to force her to eat a little.
At the end of my aunt's two week stay, we went to lunch, leaving Mom alone for the first time in nearly 5 weeks to discuss what to do. I knew if she conintued in that state she would not be able to live on her own. She could not take care of herself, much less Tinker.
After doing some research on the web, I learned about the devestating affects some medicines had on seniors. Given my mother had not taken anything stronger than over the counter medicine for headaches for years and now she had a tray full of different medications, I knew then that it could be one or a combination of medicines.
It didn't take me long to find the culprit - Toprol. A drug classified as a beta blocker, her doctors insisted that she needed it to regulate her heart. After arguing with the nurse over the phone, I paid an unannounced visit to the doctor in person. He finally conceded there might be another drug with fewer side effects that they could try.
When he removed her from the drug, she was hospitalized again because that caused a negative reaction in her breathing. But 24 hours later, she was sitting up in her hospital bed eager for me to accompany her on walks down the hall so she could start regaining her mobility. Her eyes were bright and yes, she was discussion politics again - a sure sign she was back.
I was reminded of the movie "Awakenings," where zombie-like patients returned for a brief visit to the real world.
But Mom stayed.
Now I accompany her on every doctor visit. When she's hospitalized, I insist on knowing if her medications are being changed or new ones are being introduced. I research the possible conseequences of each one.
And I wonder how many people are sitting in assisted living or nursing homes because their system couldn't cope with their medications.
This time, the turn around hasn't been as dramatic of an awakening, but I can tell she is feeling better than she was on Monday.

It's Good to be Right

2007-01-24T06:20:00.000-08:00

Sitting in her hospital bed yesterday evening, my mother finally conceded that I had been right all along about her going to the doctor.
"I DON'T FEEL LIKE GOING TO THE DOCTOR!" she had screamed at me Monday morning when I told her it was no longer an option.
Fighting back tears while wondering why everything has to be such a struggle, I told her, "Well, that's the point. People go to the doctor when they don't feel well." The fight continued at the doctor's office. "I don't want to go to the hospital," she said in more of a restrained voice to the doctor and his nurse. While doc waivered and conceded that antibiotics and bed rest at home might help, the nurse wouldn't back down. Thank God for Joan, who finally told her, "Imagine how Kerri would feel if you went home and something happened to you. Imagine how we all would feel." Joan finally reached her.
Last night, after her diagnosis of pnemonia, a day of antibiotics, fluids and breathing treatments, we were able to laugh about the previous day.
"Heart attacks and pnemonia are two things that can't be cured at home," I told her, referring to the time three years ago she waited hours before telling me of the pain that consumed her whole left side. "You know you've given me legal custody of your care. I won't wait next time."
She replied with the same amount of banter, "You aren't the boss of me."
We were smiling, but I wasn't kidding.
I'm weary.
I love my mom unconditionally and it is hard enough to accept the unevitable of her growing even more ill and weak as her chronic illness and age advances.
The fight shouldn't be between us, but against the next crisis that surely will come.

How do you Spell Relief?

2007-01-23T08:40:00.000-08:00

Pnemonia: An inflammatory disease of the lungs.

Not good, but I'll take it over the other possibility - congestive heart failure - any day.

The sun is shining again. Literally and figuratively.

The Journey: In Reverse

2007-01-23T06:21:00.000-08:00

Last night, after admitting my mother to the hospital for the third time in as many years, I began the lonely trek down the elevator from the 5th floor to the first, through the empty hospital corridors to the entrance that would lead to my truck. My husband volunteered to come and sit with us until I went home, but I told him to stay at work, there was nothing he could do there and his nature wouldn’t allow him to just sit for very long without his restlessness spreading like a virus.
Visitors use the main entrance as a general rule, but I used the side entrance earlier in the evening to admit Mom.
Now that wing of the hospital was dark and vacant. The only thing following me in these sterile corridors were the ghosts of experiences past. My journey through the hospital took me down several floors in the same elevators I used three years ago when visiting my mother when she “moved on up” from ICU to the critical care cardiac unit after her heart attack. That time, I hoped for her move up. This time, I hoped she would not be moved down.
It seemed like a lifetime ago and then it seemed like only yesterday we gathered around the screen where the cardiologist showed us the almost complete blockage of her artery. Mom would not give them permission to place the stint in the vein to unblock the clot. “What are her chances if I don’t sign these?” I asked the cardiologist. “She doesn’t have a chance,” he replied. “And if we allow it?” The wrinkled brow did not ease. “She’ll at least have a chance. I can’t say, given her age and the time she wasted getting in here.” I looked at my mother, so small on that table who was still shaking her head and mumbling, “No surgery.”
I signed the papers. I took the gamble and we won.
I entered the hallway where I once waited with a frightened and confused Mrs. Johnson (a woman whose husband had underwent heart surgery and was in ICU at the same time as my mother) until a doctor could lead her to her husband. We were two people, who didn’t even know each other’s first names, but we hugged and wished each other well as I watched her walk-run through double doors where her husband waited on a table.
What ever became of them? I wondered, as I had so many times before.
As I neared the last set of elevators, a maintenance man dragging two huge trashcans, the debris of a day where lives and families were allowed to go on – or where fate shattered them - startled me. Not wanting to be alone when I first entered the maze of corridors, I now wished I were.
I waited for the elevator to take me to the parking level, while gazing down the final hallway of my journey. At the end, a sign read “ICU.”

What to do When Mom Can't Advise Me

2007-01-22T05:12:00.000-08:00

My mother is a stubborn person and when it comes to illness, it can be maddening. She waited 4 hours into her heart attack to tell me she was in trouble. She masks pain to keep from going to the doctor like no one I've ever met.
She began feeling bad on Wednesday. I was at her apartment that day and while she said she didn't feel well, it seemed like the episodes she gets occassionally. That night, she sounded really bad on the phone, causing me worry. Thursday and Friday she assured me she was better. I was so convinced, I didn't protest when she cancelled a doctor's appointment on Friday because she said she didn't want to go into the cold.
Saturday morning, a little cause for concern when her neighbors couldn't wake her and called the weekend manager to open her apartment. She hadn't removed the ring from the door that tells the floor monitor in her building that she was ok. Knowing Mom always does this, they were a bit alarmed by 10:30, a half hour past the time she was supposed to have removed it.
Still, my mother assured me she was feeling better. I went and saw her for a little while. She did seem more alert.
On Sunday morning, she sounded better than she had in almost a week. Later that afternoon, I talked to her on the phone to ask her if she would like something to eat. Again, there seemed to be nothing to alarm me, except a bit of confusion (and this is another thing you never know to freak over or chalk up to normal aging).
When we spent an hour with her later last evening, she complained that her back was hurting a little again, but she masked her pain very well.
It wasn't an hour after we left that my sister called and said Mom was feeling so bad that she didn't even want to stay on the phone. I called her and it was a complete turn from the visit we had just hours earlier, and I had to drag it out of her what exactly is hurting and how that is affecting her overall.
The uncertainty and worry from last week follows us into this one. And the worst part about it is that my mother has always been my adviser. The irony is that I can't even trust her to tell me what's really going on inside her own body.

Mothers and Their Daughters

2007-01-19T05:31:00.001-08:00

You know the saying about not being able to pick your relatives.
Fortunately for me and my husband, we chose the route that allowed us to pick our daughters. We decided early on for many reasons that we didn't want biological children, so we decided to take on two exchange daughters for a year at a time.
I knew the first time I saw both of our daughters that they were special. I was right. Steffi is our oldest. Our German daughter from Munich is a talented artist and photographer; brilliant, especially in languages and she lights up any room when she's in it.
Meg-Ann, our Australian daughter from near Melbourne, is outgoing and fun, a talented graphic artist. She makes friends easily and when she lived with us, our house was full all of the time.
Both of our daughters have a keen sense of love and loyalty. They are both very close to their biological families and 17 and 15 years later, remain very close to their American one a half a world away.
In recent years, Steffi has went through the loss of both of her grandparents in Germany, two people with whom she shared a very special bond. Her grandparents had two daughters, Steffi's mother and aunt. Steffi and her sister were their only grandchildren.
When Steffi came to live with us, we had contact not only with her biological mother, but her grandparents as well. They were the ones who first made us realize we had a very precious person in our care.
Last year, when Steffi's grandfather was so ill, Steffi took turns with her mother and aunt going everyday to feed and care for him. Toward the end, they took turns staying the night with him, so when the time came, he would not be alone. Although he was already in a skilled nursing center, they didn't leave the care of their father and grandfather to strangers. It was stressful for Steffi, who has a high-level career in the insurance business, as it was for her mother, a teacher. But through the stress and sadness they stuck together and helped him, while they were there for each other.
My mother sometimes laments about the breakdown of the traditional family. Yet here's an example of a very "non-traditional" one (my husband is the only person Steffi's ever called Dad) and these 3 people who share more than DNA are a sterling example that sometimes it takes more than the traditional figures to create a functional family.
Meg-Ann's family in Australia are just as close. Meg and her sister are both married and her sister has two children, but their family still gets together and even vacations with one another.
Their compassion and love extend to their American family, as they often ask about their American grandmother and even send her cards and letters.
Steffi once told me that if I ever found myself alone, she would take care of me. If I can get myself to Germany, I might someday have to take her up on it. If I do, I know she will be there for me.
I can't take credit for Steffi and Meg-Ann's caring nature, that was already present when they came to us. But they have served as role models to me on how we should be caring for our elderly.
Everyone should be so lucky as to be able to choose their daughters and sons, but for those parents who did not, I think the one thing we can do for them when they can no longer do for themselves is to act as if they had.

Not a Typical Week

2007-01-18T05:01:00.000-08:00

Unfortunately for me and Mom, it hasn't been a typical week. Mom has COPD and mild congestive heart failure, along with suspected allergies. So, when all of those forces combine to make it hard to breathe, the results can be a slight infection with fever. That's how it started on Tuesday, but Mom's coughing eventually aggravated an old back injury so by last night, she not only felt horrible and was having a hard time breathing, she was in a lot of pain with her back.
And like so many times before since this journey into old age began, she did something I don't understand - she cancelled a doctor's appointment that had already been set 2 months ago. Her reasoning: she didn't want to get out in the cold.
There's some experiences in life that you truly cannot understand unless you walk in that person's shoes and I think growing old and ill is one of them. Everything that we've ever come to understand about common sense flies out the window for the people on this journey with them.
If you're not feeling well, wouldn't it make sense that's when you keep your appointments with the doctor?
Not for my mom.
And I don't know what it is that I'm expected to do. I'm not trained in medicine and I don't really believe I'm that good at comforting.
It's times like these that sometimes do give me an ounce of understanding for people who've left their loved ones in nursing homes to the complete care of others. It's times like these that sometimes makes me want to run screaming for the nearest airport.
But I don't. I usually run screaming for my favorite sushi bar with a good friend. Many people I know can't imagine eating raw fish, my mother included.
I have to admit, at one time I couldn't imagine it either.
But especially on days such as this, I order a good Japanese beer, savor my favorite dishes and enjoy the atmosphere.
It helps me gain my strength for another day.
And with it, I gain some understanding of why my mother may not want to see the doctor, especially when she is feeling so bad.

Old Friends Never Die

2007-01-15T04:32:00.000-08:00

There was a recent study that suggested we, as a society, don't make as many friends, or aren't as close to people as we were in decades past.
I have to wonder if that has to do with our aging population. As I get older, I've noticed that I don't have as many close friends, or even what I would even consider casual friends, but more mere acquaintences.
Since I was a mid-life child for my parents, I've known my mother all of my life from her 40's on and in that time, I realize I've observed the same thing with her. At first, I thought this was a by-product of her being anti-social or a bit shy around others, but now I think paring your "real friends" from "casual friends" or acquaintenances comes naturally as we age. In our teens and maybe even through our 30's, we might have dozens of people we talk on the phone with (and email now) about school, work or family. But as we grow older and our responsibilities, and life's losses grow deeper, people seem to drop away. Some of them by their choice (or ours), others may not drop completely but fade into the background.
It was perhaps this I was witnessing in my mother as I grew up. She had very few friends I would consider close and as I accumulated dozens through my childhood and early adulthood, I couldn't understand it.
I think this might come from our sharpening senses of people; who we can count on and who we can't. The True Blue.
My mother and Godmother, who had their share of 'issues' through the years (as people who care for one another do), were still close when she passed over 1 year ago. As both of them encountered more medical problems with their age, they called each other even more frequently and my Godmother even checked in on my mother when I was out of town. Perhaps it was that natuaral sense of who was True Blue that got them through the earlier rough times of their friendship.
After the last of the "old gang," as my mother calls them, passed this fall, my mother told me that for her, the worst part of getting old is not the medical problems, nor the loss of her energy or mobility, but it is being the last one alive. She couldn't even bear to attend the funeral.
When Mom moved to the senior living apartment, I first envisioned her making all sorts of new friends, maybe helping to replace the holes left by the losses that have come at a pretty steady rate for the past two decades.
What I see is her making a lot of casual friends, people who might drop a piece of cake off at her apartment or bring her the mail when she doesn't feel like walking to the lobby, but not what I would consider really close friends. No one who comes over for a full morning coffee clatch as I remember she did with the women of the old gang.
And as I speed toward my mid-40's, I understand that relunctance to trust your inner-most secrets to just anyone if they haven't made it into the old gang.

Emergency Plans

2007-01-09T05:32:00.000-08:00

It is supposed to sleet and snow here beginning on Friday and maybe last through the entire weekend.
One of my mother's former weaknesses was planning ahead. She never drove a car, but it used to drive everyone around her crazy when she would forget something at a store we had just been to the day before.
I say a former weakness because later in life when she began working as a cashier, she became much more attuned to everyone else's busy schedules. Now I ask her to give me her grocery list, check for groceries and scratch off tickets on Monday. I also have her call in her prescriptions at the beginning of the week so they're ready anytime I have a moment to run to the store or pick up the drugs.
She still sometimes forgets to give everything to me and I forget to get it and it's hard for me not to get annoyed when I think I have so much more on my mind.
But then I do know that she doesn't intentionally forget.
I did gather all the stuff I needed last night and as we were discussing the impending storm, I told her we might have to bring her to our house for a few days. Her building's electric is still powered by lines above ground and they have no generator to continue electric service if the power goes out. She not only needs her oxygen, but heat to stay warm.
So, this week, I asked her to make another list of everything she would need in case the winter storm punches us a direct hit.
It's always good to have a plan.

Thank God For a Typical Week

2007-01-05T06:06:00.000-08:00

When there's a person in your life with a chronic illness, you learn very quickly to appreciate the typical weeks. This week, thank goodness, was one of those.
Mom had her downs early in the week and didn't feel well one day, which is pretty normal. As the week went on, it was the usual routine for her of paying bills, making out her grocery list, going to the beauty salon, chatting with the housekeeper.
And a routine week for her means a routine week for me. No side trips to pick up prescriptions or doctor's visits. And no extra worry aside from the uneasy sense of waiting for the next emergency.
Thank God for routine weeks.

Ghosts of Christmas Past

2007-01-03T06:17:00.000-08:00

Anyone who saw my mother's huge assembly of Christmas decorations when I went to clean out her duplex last spring knows she is a woman who loves the holidays. It used to take her at least a day to decorate and a whole day to take it all down. Yesterday, she took down her door decoration and her stocking, 2 of the 3 things we had up. It took me another 5 minutes to bag her tiny tree and place it back in her storage area. Mom seemed a little down, she didn't allow her longing for the traditions of our past ruin her holiday spirit, but I could tell it had finally caught up with her yesterday. Everyone has that let down feeling after the holidays. They complain about the January doldrums when there's no celebrations or even much good weather. But I think for the elderly, it is especially hard. Mom's whole building was absent of the festive trees in every common area. Although I started complaining about the singing, dancing Santa that went off anytime I got on the elevator, I even missed Jolly Old St. Nick on my visit yesterday. There weren't many people chatting in the lobby when I came in and for the ones who were milling about the common areas, they looked a little more tired than usual. I only heard one excited conversation going on about the New Year's Eve bash, which had a good band and good food, in this person's opinion. And even that conversation focused on looking back, rather than forward.

The Party

2007-01-02T06:30:00.000-08:00

This is the story of our new beginning for my mother and I, the incident which took us into our current mother/daughter era. This essay was named one of the top 100 in the 2004 Writer's Digest competition, of approximately 10,000 submitted that year:

Friday night was like a party, an outlandish reunion of many different families in a single room, united by dire tragedy. Some brought children; others brought food. People smiled and hugged while waiting their turn to see their sick loved one.
The weekdays and nights were lonely in the ICU waiting room. Only one or two people of a family sat in quiet reflection while the rest of their kin took a break to go home to rest and bathe or to go back to work.
During the day, the regulars played cards in doubles or solitaire, knitted or read. Younger visitors worked on laptop computers, chatted on cell phones or watched television.
Night brought complete tranquility, except for the code blues that sent doctors into the room to awaken family members. They struggled up from their curled embryonic positions in chairs and were ushered into the diminutive waiting room across the hall. After the chaplain arrived, they would emerge sobbing.
But Friday night was different. Instead of somber reflection, it was a happy time, even for the families of the sickest patients.
My two sisters, Linda and Janet, and their husbands were part of our unit, as was my oldest nephew and his wife, who sped down from South Dakota the day before. His brother and girlfriend also joined us.
Helpless to do anything for our mother and grandmother who had suffered a severe heart attack on Wednesday, we indulged in a party platter of hot chicken wings, fried potatoes and mozzarella sticks from a nearby restaurant and traded memories.
“Steve was chasing the dog and came around the corner and slipped on the wet grass she had just watered and landed right at her feet,” my oldest sister said, recalling the first time her husband met our mother.
Mom was obviously not impressed. “Are you sure this is the right guy for you?” Linda said our mother later asked her.
We all laughed, thinking about Steve’s over 200 pound, six-foot frame landing at the foot of our 95-pound mother and offering his hand saying, “Nice to meet you.”
We found the humor in my mother’s belief she could will any illness away. I recounted the conversation I had with my mother on Wednesday night after her heart attack. “Mom, you told me you were feeling good when I talked to you this morning.”
I knew by then that the dull pain of her heart attack had already begun that morning before I called her. “Well, I wanted to feel good,” she said.
I looked up and saw one of the Johnson’s smiling at my story. We became familiar with Mrs. Johnson, a woman in her 60’s, her two sons and one of their girlfriends. The elder Mr. Johnson had survived bypass surgery the day before.
For those of us in the ICU waiting room, our identity was our patient’s surname.
When one of the two outside lines would ring and someone would answer, the person answering would call out whoever’s family they were trying to locate.
As was the case for a different family since we took residence at this place two days before, we watched the Johnson’s wait throughout a grueling 10-hour day. Once, towards evening, when I came back from spending time in my mother’s room, Janet leaned toward me when I sat down, “They just told them that he was in recovery, but he started bleeding, so they took him back in and opened him back up,” she said, nodding toward the Johnson’s.
I was glad that my mother’s own internal bleeding stopped the night before. Two hours later, when they brought him down to ICU, Mrs. Johnson hugged both of her sons good night. She turned, nodded and smiled to us as she walked out to settle into her husband’s room. The worry lines on her forehead had softened.
Most families’ presence was temporary, such as the family who came in that Friday morning. They too, were sweating out a surgery. This family also had two grown men waiting for word about their father. During the day, a hospital volunteer sat at a desk answering the waiting room telephone and taking messages for family members.
It wasn’t long before the two brothers learned that the volunteer was very meticulous about “her” waiting room. Certain lamps had to be on, the coffee pot full and the television at a certain volume. One of the brothers started turning out one lamp every time the volunteer left the room.
By noon, the antics escalated to elevating the television volume up or muting the sound and rearranging the volunteer’s pens on her desk. We all giggled like rebellious children playing a trick on the teacher as we watched her pace around while returning order to all of the items.
“You’re going to make that poor woman have a breakdown,” Janet said to one of the brothers as he turned off the lamp for the last time that afternoon.
“Now, who keeps turning off this lamp?” the volunteer nearly screamed when she returned. Her face red and her hands shaking, she said she was glad it was time to go home as she put on her coat and left, stopping only to turn the lamp back on as she went out the door. We howled with laughter after her departure. At the volunteers’ expense, we were eager for some comic relief.
When their father came out of surgery, they stayed for the Friday night waiting room festivities and then followed their loved one to another unit. “Movin’ on up?” we would ask the families, as patients on the first floor ICU were moved to the second floor rehab unit.
Other families settled in for the long term, either beginning the long journey to recovery or facing sad endings. Anna was the caregiver for a mentally disabled man who had open-heart surgery the day before my mother arrived. We immediately recognized his unique German last name. He was the relative of a neighbor in a community where we grew up.
We followed his progress for four days through Anna. She announced when he first sat up on the edge of his bed and when he shed the respirator. She heard about our mother’s first bites to eat and when the stint from her groin was removed on Friday, allowing her to once again sit up and bend her legs.
Anna was the one who warned us about the hospital food. “The soup is ok, but I wouldn’t try anything else,” she said. After a trial of one of the hospital meals during a snowstorm, whomever’s turn it was to go home had to bring back food for everyone else.
That Friday morning, an older man shuffled into the waiting room using a cane. His face was drawn and he barely looked up as he made it to a chair to rest. I wondered if his exhaustion was mental, physical or both.
I felt the pain on his face. Before dawn, a young woman and her husband were whisked to the tiny waiting room. Her father had passed. My fears for my mother clashed with the flashes of the walls closing in on me in a similar waiting room when my father died of a heart attack nearly 23 years before.
The old man looked familiar to me and I placed him somewhere in the memory of my youth.
“Excuse, me,” I said. “Did you teach high school?” I asked the man as I moved to sit next to him. His face brightened. “Yes,” he said.
“Mr. Martin.” We said his name at the same time.
“I’ve been coming here everyday for the past 29 days now,” he said slowly, looking down at his liver spotted hands. “My wife is being transferred to a long term care facility tomorrow. Flu. I got it and then she did. I was able to shake it, but we don’t think she’ll pull through.”
He gave her room number and I realized she was the woman in the ICU room next to my mother. Mrs. Martin was on a respirator and appeared to be comatose.
I wondered how anyone could handle the stress of coming to this place for 29 days straight. How many nights had he stayed waiting for his wife to wake?
My mind took me back to sophomore biology. Mr. Martin was never a cool teacher. He always moved a bit slow and seemed an easy target. His demeanor must have made us think he was slow witted as well. But he was smarter than we all realized, even once leaving a bogus test key to see who would try to cheat.
I suddenly wanted to go back in time, for Mr. and Mrs. Martin, for my mother and father and for myself. But like a long summer day at an amusement park, we try to do as much as we can until the day is spent. We have the memories of the ups and downs, but we can never get the day back.
“I’m sorry,” I said. “We’ll pray she recovers.” Mr. Martin nodded, smiled and gathered his strength to stand. A sudden blast of music from the intercom interrupted my thoughts as I watched Mr. Martin move slowly and deliberately down the hallway.
“Do you know why they keep playing Rock A Bye Baby?” I asked one of the Johnson brother’s girlfriends.
“They do it every time a baby is born,” she said. The thought of a new life made me smile.
On Saturday morning, Anna’s charge was gone. I did a mental victory dance as I realized he had moved on up. My happiness for them subsided when I saw that a cleaning lady mopping the floor was the only person remaining in Mrs. Martin’s room. She had moved on to the nursing home. As I turned to walk down the hall, the lullaby once again played over the intercom.
Later that weekend, my mother moved on up. Several days into the week, I ran into a frantic Mrs. Johnson as I got off the elevator. “They called a code blue on my husband and I just rushed back up here…I don’t know what happened, he was doing so well.”
She grabbed my hand and I waited with her until the doctor could explain Mr. Johnson’s condition and escort her to her husband. She hugged me and hurried down the hallway disappearing back into ICU.
The next evening, I poked my head into the ICU waiting room. Among the sea of new and unfamiliar faces, who quickly turned away when they realized I was not anyone they knew or anyone who could bring them good news, I saw Mr. Johnson’s eldest son. He smiled and waved.
“How is your dad?” I asked, sitting beside him, feeling almost like an intruder in the waiting room that just the week before I felt we belonged.
“Stable,” he replied. “And your mom?”
I suddenly felt guilty because she was doing so well. “She’s leaving in the morning,” I said, pointing to a bag I brought to pack her things.
Instead of a look of envy, the junior Johnson said, “Oh, that’s great. My family and I pray for her full recovery.”
I realized I had sat in the same chair Mr. Martin was sitting in when I spoke with him the week before. I knew the junior Johnson was sincere in his wishes for my mother.
“And my family all pray for your dad as well,” I said. I felt the genuine warmth of friendship as we shook hands. We didn’t even know each other’s first names, but our lives connected through our shared pain and distress.
As I left the ICU waiting room for the last time, I heard, “And that’s how me and your granddad met…” the group surrounding an older woman laughed.
It was another reunion on another Friday night.

A Phone Call Away

2006-12-28T05:42:00.000-08:00

We’re down at our cabin in Arkansas this week, some 240 miles and 6 hours away from home. When we’re out of town, I maintain the same routines with Mom every day with the exception of going to see her everyday. We talk by phone at least every morning, and sometimes twice, as I like to know when she gets back from the beauty shop, for example. But I worry, maybe not as much as I did when she really lived by herself in her duplex, but the worry is there.
I know my mother, she doesn’t like to admit illness, nor does she like to worry those around her and she sometimes goes to great pains to hide her pain.
And a lot more can be hidden by phone.
On the morning of her near fatal heart attack, I talked with her at our usual 8:30 morning call. She told me she felt fine (she had been experiencing severe shortness of breath and other symptoms we now know was the prelude, but were blamed on the COPD). But she really wasn’t fine. By the time I talked to her, she was already having shooting pains in her back. She waited 4 hours from the time the first symptoms appeared to call me and tell me something was terribly wrong. It was a wait that nearly cost her life. She later told me in the hospital, “Well, I wanted to feel fine.”
After her second fall last autumn, the nurse at her doctor’s office put a brace on her badly swollen and bruised foot. It looked pretty tight to me and I kept asking Mom about it, but she insisted in keeping it on. A sore eventually formed on her foot that I knew nothing about until gangrene had set in. It took months of visits from a home nurse to get the sore healed.
I’ve learned to read her voice pretty well, there’s not many times she can hide things from me anymore, but when we’re gone I still worry she may hide something in order to protect our time away. If it’s not worrying that she might be concealing an illness, I’m worried if something did happen, we wouldn’t be able to get back to the city in time to help her through the process of a hospital admission. After dealing with doctors, hospitals, Medicare and all of the others involved in elderly care for nearly three years, I take a very active role in Mom’s care, from knowing what goes on at each “routine” check up, to researching possible side effects for each new medication.
After her heart attack, I wouldn’t come down to the cabin for nearly 6 months afterward.
Now when I leave, I make sure our phone call times are set (we get no cell phone reception in these remote mountains), I make sure her neighbors know I’m leaving and how to reach me in case of emergency. I leave Mom with leftovers and dinners I start freezing weeks in advance.
Mom is so vulnerable. I guess I now know how she probably felt each day I walked out the door to school or anywhere when I was a child. Yet, Mom isn’t a child and (Thank God), she has her full mental capabilities. There’s a balance of respecting what she wants and can manage and where I feel I need to step in.
Yesterday, we took an unexpected trip to town and I missed our usual morning call. We forgot our cell phones, which do work in town, and it was nearly 1 p.m. before I could get a call into her. I don’t know who was more panicked, her or me. She says its worry about us, that I don’t doubt, but I also think for her, it is a little knowing I’m still only a phone call away.
I know all the experts in care giving are right. My friends are right and even my mother is right when they all tell me we do need time away from all of our daily responsibilities and worries.
But sometimes I wonder if I worry more when we’re at home or when we’re away.

Giftwrapping: No Extra Charge

2006-12-25T19:42:00.000-08:00

Mom is a creative and wrapping presents was a creative outlet for her. Not unlike many Depression era parents, our parents wanted us to have the Christmases they missed out on as children. But our packages were more than what was inside; they were lavishly decorated with package ornaments and ribbons. Gold paper with Merry Christmas in plastic cursive attached to a beautiful ribbon; Santa paper with elf ornaments dangling from the bows; blue paper with tiny silver bells. Mom’s packages were works of art.
Our home was the same way, always decorated from front to back, inside and out. We had a huge Christmas tree adorned with all the trimmings, including WWII era balls and an angel on top. The Christmas tree in my room was one of those 60s white trees trimmed in pink and when my nephews came along, they had a tree of their own – the boys tree, my mom always called it.
And Mom’s pumpkin pies….well, I still haven’t found a pie like hers.
So many of my friends lost their parents in the past two years. One of them lost her mother last year and her father this year. It seemed that one moment she was emailing me about getting her mother to an appointment and the next moment, my friend was trying to figure out new traditions for her family – how to make the holidays she shared with her parents as happy now that they were gone.
She told me recently she would give anything for just one more Christmas with her mother.
As we were leaving Mom’s apartment last night after our Christmas Eve celebration, we encountered one of her neighbors in the lobby. It was obvious she was unhappy, maybe even had been crying. I asked her what she was doing out so late, “I just have a case of the blues, you know we all get them,” she told me. I said I hoped she had a better day today, on Christmas day, and wished her well. I imagined she was dwelling on some of the old traditions she missed in her family.
Holidays seem to bring on nostalgia. But this year, I tried to keep my mind from that.
We cleared a spot for Mom’s tabletop tree in her little apartment and decorated as we could. Mom can’t make her pies, but I found a coffee shop, The Pie Lady, that does a pretty close imitation. One thing I did learn from Mom was her recipe for mashed sweet potatoes (the secret is in the marshmallows) and so we had a nice Christmas dinner last night, on Christmas Eve, as we’ve always celebrated. We united old tradition with new when I cooked and took it all over to her apartment because she wasn’t feeling up to the trip to my house.
I know our new traditions are hard for my mother. I know she would rather be spending the whole month designing beautiful packages while Bing crooned “White Christmas” on the stereo. I know she would rather be cooking a huge meal and rolling out her piecrusts. I know she wished she even felt like coming to my house last night. I wish all those things too. I wish Mom’s neighbor wasn’t so sad and lonely and I wish I could give my friend another Christmas with her mother, neatly wrapped with pretty decorations and a beautiful ribbon.
But we live in the moments we have, uniting what tradition we can, enjoying those we have with us and making new traditions along the way.
That’s the best presents we can give our loved ones and ourselves.
And I learned this year that if it is done right, it is a very pretty package.

Room in Our Minds

2006-12-23T05:24:00.000-08:00

I greeted the social worker at my mother’s door yesterday afternoon and realized this was not the same woman who visited us last year, but she quickly put my mind at ease. Like the last one, this woman was warm and knew how to talk to my mother without seeming condescending. She didn’t know Mom, but looked at her when she spoke to her, ensuring she was better understood. Unlike last year, I was more relaxed. Although I had allowed myself to fret over the visit after our big celebration Thursday night, at least I knew what to expect.
But it was more than that. Gone was the clutter between me and my mother that last year was as thick as the dust that gathered on too many of her things that surrounded us in a home she could no longer care for.
The physical clutter was absent for sure, but also gone was the mental clutter and the sense of being overwhelmed I felt this time last year. Overwhelmed at home, having just lost a beloved senior dog we dearly loved. Overwhelmed by a house I struggle to keep clean with 3 dogs, 2 cats and a husband who has a pack-rat mentality that even outdoes me and my mother’s. Overwhelmed by keeping up my writing business while marketing a book. Finally, I was overwhelmed with my mother’s care, which all of a sudden included her not being able to walk or get out of her home on her own. It was a split-level duplex and she had fallen not once, but twice last autumn. And with that clutter, came the sense of regret for backing down from an earlier move and the guilt of not being able to keep up on the chores in her home.
It was a juggling act and I felt as though I was losing control of all of the balls.
Although unspoken between us, gone from the clutter of my mother’s mind was her fears that she was going to a nursing home. The social worker last year tried to explain that she could still live independently in a clean, safe environment sans stairs. But the mental images of being placed in a nursing home and left alone without any visitors overwhelmed her. I told her she could live with me, but the social worker discouraged that because we have the same split level floor plan in our house that she had in her duplex – with less square footage – and just as much physical clutter.
If it wasn’t a nursing home or mine, she knew where she would go and the idea of living in subsidized housing made her shutter.
Also gone was the clutter of a serious physical injury that kept her off her feet for nearly 5 months last year, the clutter of losing control of your life plays terrible havoc with your mind.
Yesterday, we sat in the building subsidized by the government where many of her neighbors from our small community are her neighbors again. With the exception of having to put a ring on her door before bed and remove it in the morning to signal she is alright, she is still completely independent. She has a tidy apartment that is cleaned by a woman my mother truly enjoys visiting with once a week. Instead of being sequestered in a dark, unkempt home, she can grab her walker and head down to the lobby of her building to get her mail and visit with others when she feels those tinges of loneliness. She can get herself down to the beauty shop once a week and have her hair done for a price workable into her budget. Although she has yet to do it, she has the option of church in the building on Sundays or vespers on Thursdays. There are crafts, dances and parties.
And she is still close enough for me to bring her home-cooked meals.
Yesterday when the social worker asked her to remember words and phrases or place hands on a paper clock to test her mental faculties, she shook her head and made jokes instead of yelling. The social worker and I both had tears by the end of the session, but they were from laughter, not anger. And when the social worker asked me if I felt overwhelmed with her care, I could truly answer, “No, not at this moment.”
A new sense of place, sans the stairs and clutter.

Little Victories = Big Celebrations

2006-12-22T07:06:00.000-08:00

Yesterday was Mom’s 82nd birthday. It turned out to be a good day, unlike her past two birthdays that were marred with illness.
I called her early and she sounded like she felt ok. I made a feeble attempt to sing to her, telling her I would torture her more. She said it sounded good to her anyway. Mothers are always like that, telling you that you can do anything.
We made plans for dinner that night, at the Olive Garden. Italian is her favorite meal and her longtime local favorite Italian Gardens was long gone from the downtown Kansas City landscape.
“Call me before you come to make sure,” her voice trailed off.
When you’re 82 with congestive heart failure, COPD (the modern term for emphysema) and a very bad back, you don’t make plans too far into the future even if it is only 5 hours.
By afternoon, we were on schedule, though. I went up to her apartment in the senior high rise to give her the gifts. She’s lived here 9 months. She can get her mail and have her hair done all while never having to step into the heat or cold. She’s ok here now, but it wasn’t always this way.
I think she likes the book I bought her by Barack Obama, talking politics is one of the only hobbies she’s been able to carry with her into old age. The others being television – which I think she does just to have company - and to a lesser extent, reading. Her eyes get tired easily and her medications make it hard for her to stay awake. A book that would have taken her a couple of days to read now takes her a couple of months – at least.
The other gift, knee-high hose, was something on her wish list this year. “I don’t need anymore stuff,” and she has a storage garage full of what she couldn’t bring to her apartment and what I couldn’t sell to prove it.
She gathered her oxygen tank and coat and sat back down to catch her breath, something she has to do a lot. A 2-minute trip downstairs takes 10 minutes in between stops to rest. I could get a wheelchair as I did when she first moved here, but she doesn’t want that. The doctors told her that when she quits trying, that will be it. Her heart and lungs will no longer get the exercise they need to keep her moving and she will have to be in a wheelchair permanently.
We’ve already been through rehab – twice. The first after the heart attack was done in the hospital, three 15, then 20, then 30 minute sessions a day – until Medicare stopped paying. The second we did together this spring and summer at her apartment building. She fell twice last autumn and she needed to build her muscles and heart and lungs back up.
We measured her progress each day by the apartment doors. Next door, two doors down, three doors down, all the way to the end of the hall. Then downstairs. It took us 4 months, but by the end of July she was walking again. Now she can make it downstairs in 10 minutes.
At the restaurant, Mom ordered her favorite – spaghetti. She eats slowly these days too and she can’t eat too much, makes it hard to breathe.
The social worker from the county called in the middle of dinner. “I can’t reach your mother, and I need to come by and see her.”
She wants to come next week when I’m out of town, but I insist she come today when I can be there. I need to convince mother to have a hearing test and maybe the social worker will help me.
I shudder a little when I get off the phone, remembering the social worker’s first and last visit one year ago. My mother didn’t want the help of strangers – particularly the government, but I couldn’t live without it.
No, she didn’t want Meals on Wheels; her daughter could bring her food. No, she didn’t want free dentures. Yes, she could bathe herself. No, she didn’t need help dressing each day.
And quit acting like I’m losing my mind! Mom was rude to the woman, treating her like an intruder. I got angry; she got angry. The social worker comforted me when I broke down in the driveway. The only services Mom consented to were 2 hours of housecleaning a week. Thank God she wasn’t as stubborn about the visiting nurses or therapists the doctor ordered after her last fall.
I looked at Mom eating her spaghetti and smiling. I pushed the scene with the social worker from my mind.
Last night was for celebrating two victories, each equally as big. Her birthday and her walking out of her apartment.
I can worry about the social worker later.