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

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)

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

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

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

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

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

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

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

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

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

"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

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

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

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

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

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

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

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

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

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.