(This is the 1st entry in a continuing series telling the story of my experience caring for my very ill elderly mother who is attempting to recover from surgery in a healthcare center. If you would like to read the "Sunset Syndrome" story in chronological order, continue on from here to Hugs and Bones and the next 20 or so entries .)
I arrived at my mother’s apartment at “The Forum” on Thursday. I spoke to my sister Jane two days before and she told me our 80-year old mother’s recovery from bowel surgery had taken a turn for the worse when she contracted the Clostridium Difficile virus in the health care center where she is making her recovery. She had lost 8 pounds in a week and was now down to 86 pounds and not eating. Jane said to me with a crack in her voice “Things are not going well. You saw mom last fall and you had a nice visit. You should be okay.” I cancelled my knee surgery and hopped on a plane to Ohio hoping I could help my mom and Jane out. I had the feeling she was dying.
The Forum, where my mom has lived for 5 years, is like a country club except the members move in, skip the golf and tennis, and instead get dressed up in country club attire to go to the dining room where they socialize and have a good time. It’s called “independent living” and it’s not bad. Lurking in out-of-sight corners of the grounds are the other facilities like the “Alzheimers House”, the “memory center”, healthcare where my mom is, and “assisted living”. They were out of sight but not out of mind for the residents of The Forum. As my mother often reminded me with some angry fear in her voice “That’s where “they” send you when you can’t get dressed and make it down to the dining room on time.” I’d find notes in her apartment scratched in big type reminding her of the time of her dinner reservation. Once while I was visiting and dining with my mom, a man came down all dressed in a sport jacket and tie but his shirt tail was hanging out in front and the women murmured and discussed how long he was for the Forum world. Usually the individuals seemed to just disappear quietly into the woodwork without much fanfare or notice, just a quiet, quick confirmation of their fate and then a new resident would move in and life would go on, as if to deemphasize the fate they all shared. In fact, they tried to keep the depressing reminders to a minimum so wheelchairs and the like were not permitted in independent living and funerals were de-emphasized almost entirely.
Dinner was a major part of daily activity. My mother usually started getting dressed around 4:30 in order to give her enough time to pull on her stockings and other dressy things to go to dinner around 6:00. No pajama wearers allowed in this place. And the residents did look quite nice, an anachronism in this casual age, some graying men sporting bow ties, loud plaid jackets or pants with little golf bags all over them and women pushing walkers wearing elegant St.John suits. It was admirable. When we reach their age, we’ll be wearing target yoga pants and t-shirts I guess.
Like a dirty family secret, when my sister and mother first visited the Forum and wanted to inquire about living there, they would conceal the fact that she had Parkinson’s disease for fear that it would disqualify her from “independent living”. They’d schedule meetings right after my mother had her medication so she’d be at her steadiest and most clear minded. Luckily her fears were unfounded, she got a nice apartment, set it up as a kind of scaled down version of the house we grew up in, and she settled in and made friends. Once we found The Forum the move was easy, though the process had taken several years of us (her nine kids) pushing, broaching and encouraging her to make the move despite her strong resistance. Indeed, her previous life living alone in a big house with a big yard where the highlight of the day seemed to be seeing the postman drive up which prompted her daily exercise of walking out to collect the mail had gotten too isolated even for my mother. She finally gave in after she fell on the golf course one day and toppled down a hill and split her head open on a fence post causing a bloody mess and twenty stitches. In the end, she didn’t seem to mind losing her social life with her old friends; anyway it had slowly disintegrated into going to a steady stream of funerals.
My mother had never been as sick as she was now, or so I thought. I hadn’t been the daughter nearby caring for her week in and week out through thick and thin as my youngest sister had, yet it was clear my mother was in decline to all of us whether near or far. Six months earlier my mom had a stent installed in her heart when she had become faint and had severe chest pains. Since then while she had improved somewhat, her Parkinson’s seemed to be taking its toll and the number and severity of her falls were increasing. Her weight was also in steady decline and her bouts with constipation were neverending, all symptoms of parkinsons. My oldest sister sent out emails regularly talking about mom’s condition, encouraging us to visit, and expressing concern about her weight and what we could do to get her to eat more. She was stocking her fridge with Ensure and energy bars, all things my mother looked at like food for aliens and made a face of "yuck" if offered. Her digestive system just wasn’t working, and the bowel surgery was one more scarey step in this final passage.I couldn't blame her; who wants to put more in if nothing is coming out. The digestion problems combined with the falls and the increasing forgetfulness were worrisome.
One time when I was visiting she had a big black and white bruise on her thigh and I asked about it. She admitted she had fallen and pleaded with me to not tell anyone. She said “I don’t want them to put me on the other side,” meaning in assisted living. It appeared to be only a matter of time to me on my last visit in the autumn when I walked with my mother with her walker excruciatingly slowly to the diningroom. I cringed with fear as my mother had to abandon her walker with the maitre d' and navigate through the maze of tables to her assigned seat. While I held her hand, I had visions of her falling if she had to do it alone. It was clear, my mother was hanging on by her fingernails to her spot in independent living.
So here I was in April, my mother was on “the other side” in healthcare trying to make a recovery and I sat on her bed having unpacked my bags and settled into her bedroom. It felt eery. I brushed my hand across the soft cotton gold star quilt that my grandmother had made which my mother used as her bedspread. I gazed at the family pictures framed on her dresser. I smiled at her bottles of perfume, Joy, Chanel, Elisabeth Arden and others neatly arranged on a tray all of which she has had since I was a kid. The bottles were dusty and many were almost empty.
Whenever one of my mom’s friends would move on to the other places, she and others would talk about going to visit them but they’d usually come up with an excuse. It was too scary for them to see their future ahead of them and they were worried about the germs they might get over there. So it was for me as I sat in my mother’s apartment not quite believing that I hadn’t found my mother in her own apartment. I was gonna finally have to make a visit to the other side.
My sister Jane who had been caring for my mom for the past two weeks filled me in as we walked down the bright elegant Forum hallway and then pushed through the double doors into a gray dirty back hallway where we entered the bowels of the building. The smelly kitchen, laundry, and other back offices were here. This dingy hallway was the only way to the other side and it was purposefully unfriendly and designed to keep the two sides apart from each other. My mother had told me it was because people tried to escape “assisted living” and go back to The Forum where they weren’t allowed. It was enough to make me want to turn back. It seemed an interminable walk as I attempted to hold my breadth to avoid the stale air.
Jane warned me that in Healthcare they like to put the patients out in wheelchairs in the lobby by the front desk to sit for awhile after dinner and that I might find it a bit shocking. I pushed through the doors into Healthcare to see strewn about every which way ten or twenty patients in smocks or dressed in regular clothes staring with eyes that were alive but bodies stiff, with pale pink puffy faces or swollen legs filled with water, some would be mumbling or as I walked by would lift their hands and point at me or wave silently. Others would be talking loud nonsense. Others would scoot along in sock feet aimlessly or slowly down the hall navigating around the carts that dotted the hallways, sometimes getting their wheels stuck. Tney were tethered to their chair by a yellow string attached to an alarm that would sound if they fell too far forward or somehow tried to get out. None were smiling.
It took my breath away, what little breath I had, to see these folks whose eyes were alive but whose bodies and minds were leaving them. Jane hurried me by them as she greeted the few she had come to know and said kindly “Lovely day isn’t it? Are you enjoying watching the birds at the feeder?” They wouldn’t answer, they couldn’t answer, paralyzed as most were by strokes or other infirmities. And indeed I looked out the lobby window to see cardinals flitting happily at the feeder and a squirrel making a run up the pole to upset things and spill the food out.
712 was my mother’s room number and it was at the end of the hall. Jane explained that my mother had a roommate who was quite a character and was in recovering from knee replacement surgery on both knees. Instead of having an incapacitated stroke victim, my mom had a 65 year old livewire. Between Rose’s outspoken yells and demands out the hall as the staff passed by and my mom’s steady stream of visitors, 712 had become a hub of activity. Jackie said she thought Rose might speed mom’s recovery because she didn’t want to listen to her talk on the phone and watch Court TV all day long. As I walked down the hall, food smells mixed with the smell of sweat and fowl diapers emanating from the patient rooms I peered into as I walked by. Big carts rolled down the hall carrying dinner trays. Nurses stood by pill carts that they pushed up and down the hallways to displense medicine. My face soured as I pushed ahead anxious to see my mom and give her a big hug and get her out of this godforsaken place.
to be continued...
It's fascinating to hear your perspective. The faces you describe and even the sounds are so reminiscent of the hospital ward where I work. The younger, healthier, less demented patients tend to stay quietly in their rooms, so I'm sure visitors to our unit get a very similar impression. I hope the nurses were at least warm and comforting. But perhaps as I read on, I may find out. I hope your mother is comfortable and as happy as she can be during her time at The Forum.
Posted by: Mia | 05/14/2005 at 01:45 PM