When any disease is diagnosed, questions come up. What treatment is availabe? How will a particular treatment affect me? Are there alternatives? What is the prognosis? Not life-threatening, life-threatening, or fatal? If it’s fatal, how long do I have to live? How can I mitigate the pain?
Those questions are tough enough to deal with on their own when someone is dealing with a new diagnosis of illness. But with some diseases, another element enters the picture. The element of shame. Dementia is often among those. Many Alzheimer’s patients cannot admit they have the disease. Those who can, often feel they cannot tell anyone else. They try to hide the fact from everyone they know. Some are very good at discovering cover-up strategies that actually work, for a while.
Why is shame a factor in the already daunting fight dementia patients face? Because too often telling anyone puts a sudden and terrible ‘distance’ between the patient and the very people he or she needs help and understanding from. Friends might stop calling or coming around. Bosses and co-workers might begin to doubt the ability of the patient to perform any of their duties well. Family members might begin to treat the patient as if he, or she, isn’t capable of doing the simplest things for themselves. The patient is bossed around, talked down to, or not talked to at all. Long before the disease actually takes away a significant amount of the cognitive abilities of the patient, they’re treated as if they have no ideas, opinions or skills that are worth sharing with those around them.
When Bill was diagnosed, his first request of me was, “Don’t tell anyone, please!” Emphasis on ANYONE. Ignorant and confused about what might be the best course of action for us to deal with something like this, I went along with that. For a while.
At UBC, the help we’d been given consisted of Bill being put on a drug called Aricept and me being told to google a website on Alzheimer’s for information. “The website has everything you need to know on it,” the psychiatrist who had replaced Dr. Feldman said. I googled it, but what I read there seemed to repeat what we’d already been told: the disease was incurable, there would be a steady decline in Bill’s condition until he would be unable to do anything for himself. We weren’t anywhere near that kind of decline, or ready for the strategies cited to help a person with severely diminished capacity get through a day. But there was a place where Alzheimer’s Support Groups were listed and I saw there was one in Campbell River.
I decided to go to a meeting and see what it was about. One of the people attending was a nurse who had twenty-five years’ experience dealing with patients with dementia. The question of stigma did come up. Many around the table agreed it was an ugly fact that had affected their loved-one’s life, and theirs. In answer to that, the nurse said, “If we don’t put the white elephant on the table and talk about it, it will never be talked about, and the stigma attached to this disease will not go away. We have to talk about it.” That really struck a chord with me.
The very next day I sat down and talked with Bill about trying to hide the fact. What that was costing him. What it was costing me. Also, UBC had asked us for a comprehensive background concerning Bill’s family’s health. We knew some of his mother’s siblings had suffered from dementia. However, their dementia didn’t show up until they were in their late 70’s and 80’s. I’d begun noticing Bill’s struggles when he was only 55. He’d been tested annually at UBC for three years. And at 58, the definitive diagnosis was Alzheimer’s. I told Bill we needed to put the word out to all his relatives and see if there was something more about dementia in the family. Reluctantly, he agreed.
It was apparent immediately that sharing the fact of his condition was a relief for Bill. It certainly was for me. His sisters responded with sympathy, encouragement, and offers of help. Our children did the same. Then, when we began to share it with friends, many offered much warmth and comfort to us both. Workplace situations were somewhat different, and more difficult.
Bill is a social person; he was used to being a ‘boss’. He’d successfully managed facilities with a multi-million dollar budget and a large staff, as well as dealing with the public, for many years. He wanted to be involved in things. He wanted to contribute.
So, more than once he attended some meeting or other for some organization, and was elected to the board.It was only natural. The people in those organizations knew Bill’s past employment record, they believed he would be more than capable of doing whatever needed to be done. But his ability to organize–to suss out what course of action needed to be followed to complete specific tasks, to assign or designate, and to follow up, was already severely compromised. So, when I saw a picture in the local paper, and read underneath that picture that Bill was one of the organizers for a major athletic winter games, my panic button was pushed. He hadn’t even told me he was on that board.
I showed him the newspaper. “What is your role; what does it involve?” He was in charge of venues, he said. “How many venues?” I asked. He didn’t know. I googled the games. There were 17 different venues for the events, some in Campbell River, some in Courtenay/Comox. I asked him what he was supposed to do. “Co-ordinate the volunteers for the events,” he thought. I asked him how he was going to do that. He didn’t know. He thought he’d just contact each venue, and tell the staff there to make sure there were enough volunteers for each event. I had no choice. I called the chairperson of the board and explained Bill had Alzheimer’s, and that he would not be able to take charge of anything like the huge undertaking he’d volunteered to do. I said there were many things he could do though, and he did still want to be involved.
The chairman thanked me for the information and said he’d get back to me. He never did. It was the first of three times I had to step in and make sure an organization knew Bill’s condition and capacities.
It’s not easy telling people your husband cannot do something he (and they) obviously believe he can do. It’s even harder to talk to your husband about what his limitations are. There’s a fine line between giving support and causing a person to lose more confidence than they’ve already lost. Between encouraging a person to be as active and involved as they can be, and limiting their involvement because YOU don’t have enough faith. What’s more, it’s a shifting line. What an Alzheimer’s patient can, or cannot do, can change within a month, a week, a day, or even hours, depending on how tired they are or the location they’re in.
Sometimes I guess wrong, and we both pay a price. What’s important for me to remember is that it IS A SHIFTING LINE. It’s impossible to understand exactly where a person’s at all the time, or even any of the time.
The best I can do is have patience, with Bill, and with me. As I am not a patient person by nature, that part has been perhaps the biggest learning curve for me. It’s a lesson I’m continually having to relearn.