Double Trouble
In answer to queries I sent to Bill’s relatives for the UBC doctor, I learn various uncles, aunts, or cousins have suffered from depression, bi-polar disease or dementia. Clearly there are some mental health issues in this family. But none who had dementia had shown any sign of it until they were into their 80s. So, I think, Bill is different from them. In my own research, I’ve come across studies done on deceased hockey and football players’ brains, which showed significant brain disease due to multiple concussions. As a teen, Bill played hockey and football and used his head as a battering ram. Who knew how many concussions he might have suffered. Variables are what make conclusions so hard.
Bill’s 88-year-old mother lives in a retirement home in Victoria. Bill’s dad died from lung cancer when he was 56 (we were 25) and his mom had married twice more since then. Her third husband died a year ago. For the past several years, Bill has been her mainstay and we visit her as often as we can. Since we told her about his initial diagnosis of cognitive impairment she’s wanted to rely on him more and hasn’t acknowledged there’s anything wrong with him. Then comes the kicker.
“Mom,” I say to her when we visit her after our last appointment at UBC, “Bill has been definitely diagnosed with Alzheimer’s.”
“I have Alzheimer’s too,” she says.
I am struck dumb. At 88 she still takes care of all of her own financial affairs—something Bill hasn’t been able to do for a while. She is articulate, knows what she wants when she wants it, and has no trouble going out for walks and getting back to the retirement facility by herself. She remembers every one of their large number of relatives, and though she is hard of hearing she can carry on a conversation without difficulty. In my mind, her having Alzheimer’s simply does not compute.
“What does your doctor say?” I ask.
“Nothing,” she says. “We haven’t talked about it.”
I ask her if she wants me to go with her to talk to him. Her answer is an emphatic no.
I don’t know her doctor. I wonder, would he talk to me without her? Not likely. So I ponder what on earth I can do to help her.
I note that even though Parkwood provides housekeeping and laundry for residents, her suite could use a good cleaning. Maybe if someone was coming in to help her regularly I could keep better tabs on what is actually happening with her. “Do you want me to hire some help for you?” I ask.
Another no.
I don’t press her.
When we get home, I call Bill’s two sisters and tell them what their mother has said. The elder of the two, who lives in Saskatchewan, says she’ll talk to her mom. A few weeks later, she arrives in Victoria and stays with Mary for a week. After she leaves, Mary is somewhat happier. And Bill’s and my daughter, who lives in Victoria, talks her Nana into having a caregiver come in to help her twice a day. That’s a relief.
But Bill’s mom is in a difficult place. Her family is spread out. And we are all involved in our own lives. I know that to stay in Parkwood she must be able to handle her own affairs. And if she can’t, she won’t be moving in with any of her children. She has often said she would never live with any of us. She doesn’t want to be a burden. For my part, I know I couldn’t handle having to look after her full time as well as Bill.
I think about how in the past half century, we’ve come to rely more and more on the ‘system’ to replace the concept of villages to take care of our relatives as they age. I wonder if hearing her son has Alzheimer’s has made Mary afraid that when she needs help the most she will totally be on her own. I pray the caregiver going in will give her some peace of mind.
FIVE
Managing
My first meeting at a caregiver support group is tonight. Until now, I didn’t really think I needed something like that. But there is only so much I can learn from written articles. The format is for people to introduce themselves and say what’s going on for them as caregivers of patients with dementia. No one is supposed to give advice. We’re just there to tell our stories, and listen. Listening, I think, is good. I’ll find out how others handle things.
*****
I am struck by the fact no one else here has been dealing with dementia for more than three years; yet many of their people are in far worse shape than Bill is. There are several very hard stories, with tears flowing from the tellers. I feel like I’ve had it easy compared to what they’re going through.
I am the last one to speak. I give a brief outline of how long we’ve been on this journey—five ‘official’ years now—and the doctors we’ve dealt with. “I’m doing okay,” I say, “but I have some problems dealing with some behaviors. Right now, it’s repetition that’s getting me. When he asks the same question five, six, seven times in an hour, I find it hard to keep my cool. I’m also not fond of it when he wakes up at five a.m. and tells me the cat’s meowing to get out. We don’t have a cat.”
The group laughs. It’s good to hear them laugh.
“That’s me,” I say, and the meeting winds up.
When we’re leaving, a nurse who has been dealing with dementia patients for over 25 years and is an advisor to the group comes and introduces herself to me. “You and Bill have had the best there are in Dr. M—the Gerontologist who came to our house to first assess Bill— and Dr. F. He’s tops in the field.”
“I know, but Dr. F left UBC two years ago and we’ve decided not to go back. It’s too exhausting for both of us.”
The nurse commiserates with my statement of exhaustion. “I can imagine. Thanks for lightening things up with the group.”
“Humor helps me,” I reply, “but I really don’t think I can do this for twenty years.”
She answers with, “You won’t have to. The average lifespan of someone with Alzheimer’s is seven years. Most die after five.”
That shocks me. I haven’t seen that statistic in anything I’ve read. I’ve known from the beginning there’s no cure nor even any effective treatment for the disease. But Bill has been extremely physically healthy his whole life, and he’s already lasted longer than five years. Until that moment, I didn’t really think of him as dying. But he is. His brain is dying, and in time that will cause his body to die. Alzheimer’s is a terminal disease.
“Call Home and Community Care and get a Case Manager,” the nurse says. “They can give you some home support.” That surprises me, too. I wonder why didn’t someone at UBC or our GP tell me about a case manager? When I’d told our GP we didn’t want to go back to UBC, he’d said, “That’s fine. Of my five thousand patients, you and Bill were the only ones going there. You let me do the worrying about Bill.” As if I’m not going to worry anymore. Especially if the doctor actually has 5,000 patients because how on earth could he keep track of any of us with that many.
And I begin to wonder, how much does anyone in the system actually know about what is in the system, or about managing this disease?