Intersections
Chapter 10
-2003-
New Life in Wisconsin, by Billie
Mum still lives with me and my retired husband. Our retirement picture has changed somewhat, my mother being smack dab in the middle of it. We carefully anticipated our retirements and thought we were more prepared than most. I’m working one more year so I can retire with my full benefits. But we hadn’t planned on a boarder, a widowed aging parent with a slowly progressing degenerative brain disease. And even if we had planned for that possibility, we would not have been prepared for its many ramifications.
Night time at our house—quite an adventure. Everything but a good night’s sleep. Knocks on our bedroom door, Mum wanting to “go home,” trying to fry an egg in the kitchen at 3 a.m., putting on her coat and mittens, grabbing her suitcase.
“Where are you going, Mum?"
“I don’t know."
A thud. Mum has fallen again. Miraculously, no major injuries, but lots of X-rays.
The worst—panic attacks continued. Medication didn’t completely control these. A sudden perception of being alone in the house might set off a panic attack. Then she would find the phone and call someone, just compulsive dialing. Breathless, too. Sometimes she couldn’t stay in her bedroom at night, confused about where she was. She’d open my door. Where is Ian? But more frequently, Where is my mother?
She refused to go to respite care, day care for elderly with Alzheimer’s. We were wearing out. When Mum first set foot in Wisconsin after what I call Operation Rescue, 2001-2002, people wanted to help. That was over a year ago. Visitor volume and reinforcements are dwindling now. Some friends and family have moved on. I had thought, prior to Mum’s Alzheimer’s diagnosis, moving on happened after a period of grieving following the death of a loved one. But Mum is very much still alive and experiences a full range of emotions. If she were a child and her father or mother moved on, that would be called abandonment. No one would condone it. It might be litigated, too. But for the unfortunate Alzheimer’s victim, moving on can begin when the task of advocacy becomes inconvenient, unpleasant or gets, like the afflicted senior, old. The slow progression of this disease stretches and strains; it’s an endurance marathon, and that is why the task of caretaking very commonly falls into the laps of a very few or even just one relative.
We didn’t want to wait for a crisis we couldn’t handle, so we looked into assisted living in the area: costs are staggering. No coverage by Medicare and no financial preparation on my mother’s part. Alzheimer’s Association recommended a family meeting and everyone chipping in. I couldn’t even get my relatives to chip in their time, much less thousands of dollars of their money. Most of my mother’s English and Scottish relatives whom I barely know still lived in England and Scotland. I wished I’d had 8 or 9 financially independent and generous siblings, or maybe a kindly aunt with Oprah Winfrey’s bank account. Ian claimed Mum had given him some money to invest for him. When we brought her to Wisconsin, he said he’d send us a check. I don’t know if the amount was $40 or $40,000, but he didn’t send the check, said he decided he had earned it taking care of Mum. The financial issues are bad enough, but there is more.
The inevitable crisis came. My cousin Margaret had come for a visit and left a bottle of aspirin in a drawer of the guest bathroom. Mum probably thought she had a headache or one of her funny feelings, must have come across that aspirin during one of her wanderings. I discovered the bottle in her room.
“Where did this aspirin come from, Mum?”
“I don’t know. Isn’t it yours?”
“Did you take some?”
“I don’t know.”
She used to take aspirin by the handfuls, she once confessed. I think this time she probably ingested a whole lot more.
That night she knocked on my bedroom door. Whenever I hear that knock, I bolt upright. My skin tingles. Then I get up and open the door. Feels like peeking into a nightmare. This time, “What’s the matter, Mum?”
“It’s hard to explain.” Breathless. The breathless part is anxiety. She said something about the toilet.
I helped her shuffle back to her bathroom and looked into the toilet bowl. Full of blood. I gulped back a scream. My husband and I drove her to a hospital. There, her heart stopped beating twice. Doctors suspected heart disease and considered a pacemaker. But consultations with more doctors at a medical college determined that Mum was in hematologic shock. They sent her by ambulance to a bigger hospital. There she continued to bleed for six days. The head of surgery told us that six days is their gold standard; if they can’t stop internal bleeding by that time, they have to do something. In Mum’s case, it was remove the entire colon. He warned us that my mother’s physical condition and her age were factors not in her favor, but that this surgery would end her bleeding. Her small intestine would be attached to her rectum and she would not require a bag. She just wouldn’t produce the fluffy brown stool the rest of us enjoy.
We gave permission for the surgery. What else could we do?
Surgeons marveled at her quick physical recovery. Not aware of her catheter and not particularly patient, she climbed out of her bed in intensive care to go to the bathroom. “Tough old bird” they called her. As she recuperated, my husband and I decided we couldn’t do this anymore on our own. Mum’s doctors concurred that she should never be left alone and that a nursing home would be an appropriate placement. My sister and I began a whirlwind tour of area nursing homes; Mum would be released from the hospital in three days. With the aid of a hospital social worker, we narrowed our list of possibilities to 8. We had to rule out some we would like to have seen. At $7,000-$10,000 per month, we knew Mum would run out of funds shortly, Medicaid would take over. But some highly rated homes have long waiting lists, especially those with scarce Medicaid beds. The situation is different for residents who can self pay and who give the home an endowment. The least depressing of our options was a place called Riversite.
Unlike some others, Riversite was clean, smelled good and had spacious and cheerful dining rooms. It didn’t have a designated Alzheimer’s wing, but we had seen some of those units in other homes and the advanced stage those patients were in was just too frightening. We thought Mum was higher functioning than that population. Riversite had its own pool of nurses from which to draw when shortages of staff occurred, but it was a huge facility and some wings seemed chaotic as one shift ended and another began, confusion and noise as staff were given assignments. But still, it was the best of the 8 alternatives and in the area where I live.
After Mum’s hospital release, we took her to Riversite. Admission day. Forms, end-of-life decisions, medical power of attorney, all this legalese mumbo jumbo and in front of Mum although she was too confused to follow, I think. I met her roommate Jessie who didn’t speak to us at all, just sat in a wheelchair. We asked the aide why she didn’t already have a roommate; what had happened to her last roommate. I was concerned about her personality. The aide said she was actually a very nice lady and that the roommate Blanche had died; Blanche and Jesse had gotten on pretty well, she told us. The woman seemed like a mute to me. But then, I was new at this. While the social worker gathered together the forms, I took in the spare, dorm-like room. It seemed familiar.
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There is an image of the nursing home as a kind of billeting of sedate and feeble elderly, not the same picture that a state institution for the mentally deranged conjures up. Somewhere between the two exists the reality of a modern nursing home, and some scenarios involving senile elderly residents are not unlike those dramatized in the book/movie One Flew Over the Cuckoo’s Nest.
I had visited a local medical complex many years ago, the section that houses the—what is correct now—emotionally challenged? My ski/social club converted to a choir during the holidays and sang Christmas carols at hospitals. My group entered a locked unit. One man wore a helmet to protect his head as he banged it against the wall. I said Merry Christmas to another man and he burst into tears. Someone on the staff tried to console him but he sobbed and sobbed. I tried again and said Merry Christmas to a woman and she responded, “Merry Christmas, you monkey’s ass!” Another resident had to be stopped as he pushed a piano down the hall. I think he was trying to go with us but he wanted the piano, too.
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That admissions day, I had been in my mother’s room just twenty minutes when I heard a man’s voice in the hall, “George, get in that chair! Now you stay there!” Then I caught an obstructed view of a man pushing a wheelchair past the doorway. A few minutes later, “I told you to stay there! Don’t get up, George!” And I thought I wish George would just sit in that chair. Then, same two legs and wheelchair going by in the other direction and same demands, “Stay in that chair, George!” Finally, I walked to the door and scanned the hallway.
There was no one in the wheelchair. The resident was walking his empty chair. Cuckoo’s Nest.
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Mum would be assessed for a while. She would wear an alarm bracelet until it was established that she wouldn’t wander off the unit. If she tried to exit her floor on an elevator, an alarm would sound. Those are safety precautions, protections for the institution as well as for the resident. I had more immediate concerns. Mum and I both wanted to know where and with whom Mum would eat her meals. Someone on the staff pointed out the table and the fact that she would be dining with a resident named Dee and another woman—condition unknown. The aide explained that there had been a man at the table for four. Dee’s husband used to come daily, was quite a presence, she said, until recently. So it was three women now. I stayed with Mum through that first meal. Dee smiled once in a while and talked a little gibberish. The other woman had a scowl on her face and said nothing. Mum did eat her meal. I was offered a plate, but I don’t think I was ever less interested in food. No appetite today.
Walking out of that place that day—that was the heaviest I’ve ever been, the lowest I’ve ever felt about a decision I made. My condition gave new meaning to the expression wet noodle. Wave after wave of guilt, self-flagellation, worry and fear. But I did keep my promise I’d be back the next day and I am there almost daily, usually five times a week, alternating with my sister.
And I do believe, now that I know the operations of a nursing home, a daily advocate is something all residents should have and most don’t have, so it is my intention to keep up this pace as long as I can. Hope I stay alive.