Episode Six: Humour in Dark Places

Wayne MacPhail: Talk for Memories, podcast number six. Hello, and welcome to the sixth podcast in our Talk for Memories series. I'm your host, Wayne MacPhail. In this series, I have been interviewing people living with Alzheimer's disease and related disorders and their caregivers across Ontario. Susan Ormiston is a veteran Canadian broadcaster who's done outstanding work for both CTV and CBC. She's also been an energetic spokeswoman for Alzheimer's disease in Canada. Susan watched as her mother was wrapped in the insidious fog of the disorder in the late '90s. Her grandmother, too, was its slow victim. But Ormiston refused to be afraid of the future. Instead, she finds finding humour, even in the dark places Alzheimer's leads us, can help us cope. I started the interview there.

Wayne: Susan, I wanted to start by talking about something that you mentioned in a speech you did quite a while back about humour and Alzheimer's, which is a combination that I think a lot of people might find a bit odd. So can you explain what you see as of the value of humour when you're dealing with Alzheimer's?

Susan Ormiston: Yes, it's a bit of a contradiction, isn't it? I don't expect that anybody who is caring for somebody with Alzheimer's finds it funny at all. However, there is a macabre sense of irony, and there is humour in the experiences that you're going through, but you probably can't see it until you're through it. I certainly couldn't. Looking back, though, at my family's experience with my mother, many of the inconsistencies and the weird things that happen with people with Alzheimer's are quite amusing. And I guess I'm suggesting that if you can apply that sensibility, step back for a moment and see how ludicrous, really, some of the affectations of the disease are, then it might be one way to cope, one small way to cope with the disease. Many things that happen are funny. I told the story of a homecare worker in Kingston who told me about a woman who called frantically and told her she must come immediately, because there was a great, big bumblebee in her basement. When the homecare worker arrived at the house and looked in the basement, it wasn't a bumblebee at all -- it was a raccoon. And I found it amusing that the stripes of a bumblebee and the stripes of a raccoon were confused in the demented mind, but they made sense.

Wayne: Sure.

Susan: Funnily enough, in some way.

Wayne: And that kind of lateral thinking is very tied into humour in everybody, right?

Susan: Yes.

Wayne: It strikes me that a lot of healthcare workers -- I'm thinking of, like, emergency-room physicians and nurses and stuff -- use dark humour or black humour to get through a very stressful period. So I think it makes sense that you should think about humour in that way in terms of coping with the stress of Alzheimer's.

Susan: I think the difference, however, is that we've often heard about black humour with police officers or certainly people under stress, healthcare workers. When it's your own family, it's more difficult, I think, to find it funny at all. But, again, if you step back for a moment, certainly during the middle stages of the disease, I'll not forget my mother doing exercises, not being a particularly athletic woman in her 70s, but doing exercises in the front room, you know. My sister got her going, getting her arms revolving like a windmill, just for the endorphin advantage. And, you know, looking back on that scene, tragic though it was, it was funny. It was just funny to see her trying to, you know, go along with us, even though she was very confused.

Wayne: Right. I wanted to talk about the moment when you realized that there was a serious problem with your mother. It was in a car driving, if I recall. Can you tell me about that?

Susan: You know, someone dealing with Alzheimer's, it's so easy on the other side of it to see the signs which you miss going through it. For me, there were certainly moments of forgetfulness and confusion, but you can really wipe those aside as, "Well, you know, it's a little bit of something." But for us, it was acute anxiety that, I guess, drove home the idea that this was a disease -- this was not normal aging. It was nothing else but a disease. And I encourage people to watch for signs of acute anxiety, because the forgetfulness, while it's common and associated with Alzheimer's disease, the acute anxiety is a real telling example. For us, it was we were driving home from my sister's house an hour outside of our city in Saskatchewan with a dark, cold, wintry night on the Prairies. And we're driving along, and Mom was so worried. I mean, we couldn't sweep her anxiety away. You know, I remember her hands were clutched on the dashboard, staring -- fixating on the gas gauge. The tank was about a quarter full, lots of gas to get us home, but she was convinced -- she was possessed -- by the anxiety that we would run out of gas and be stranded in the middle of the Prairies on a cold, wintry, dry night. And this obviously was a phobia that she'd had as a well woman. But when she was sick, she couldn't let it go. Nothing, no amount of -- you know, we could have stopped at several gas stations along the way. It wouldn't have swept away that anxiety. And we saw that then, and I realized then that this was something different. We were into a new phase of dementia that wasn't going to get any better.

Wayne: And it didn't get any better. And one thing that I was really struck by in your speech was, I guess it was the evening of your wedding, where you had to … when all the other guests were away and off to their beds, you had to cope with your mother's Alzheimer's on your wedding night. Can you talk about that a bit?

Susan: Yes. Bittersweet only half tells the story. Of course, you know, a marriage, lots of organizing to get a wedding off; and I was realizing going through that process that my mother, who was extremely competent at arranging lots of business affairs and lots of social engagements, could not help me arrange my wedding at all. It was breathtakingly painful. And the night of the wedding, she managed very well. As many with Alzheimer's do, they cover up their inabilities, and she did that with grace, as always. But, you know, as the evening wore on and I escorted, you know, both of them back to their hotel room, she resumed a pattern that's common to many who have dementia. She was searching through her drawers in her hotel room, convinced that someone had stolen something from her room. Anybody will know this is a common effect of dementia. I can see the image now, you know, still dressed in her mother-of the-bride suit and me in my wedding dress, trying to confront the horrible realities of dementia. It was … painful.

Wayne: And what did she say during that period? Was there a connection with you about what happened during the wedding? Was she aware that you were getting married?

Susan: Oh, yes. You know, in these middle stages, it's a fleeting thing. You can almost see it in some person's eye, especially someone you love, that they're understanding and comprehending and coping pretty well one moment, and then they're not the next. They're lost in their confusion. So absolutely, she knew what was going on and how, you know, this magnificent event was happening. However, I wasn't entirely sure what she would remember the next day, and also, you know, she had a limited ability to be the hostess that she normally would have been at such an occasion.

Wayne: Hmm…

Susan: So I had some regret about how we managed that day. I wish I had included her more in some things; but, you know, by then, it was becoming very difficult, and we were all coping with that, as well as this big event.

Wayne: So that must have been an interesting sort of fulcrum point in your life, because her life is sort of winding down and disappearing for her, and you're … you referred to yourself as a late bloomer, so your married life is just beginning. So, talk to me about how that felt for you then.

Susan: Well, I didn't know that her life was winding down, because those of us who care for loved ones who have Alzheimer's are eternally optimistic.

Wayne: Hmm…

Susan: So we never know what's on the other side. Never. You can be told. I can tell people now, "Here's what's coming." But until you go through it, you don't believe it, and you can't prepare yourself for it. You can have strategies to help yourself cope, but you don't know what's coming. So at that time, I wasn't aware that she was -- the trajectory that she was on. I knew that, you know, this was Alzheimer's and that she was changing. But I could never have predicted that six months later, she would be gone. Never. So, you know, you try to find ways to -- and I think this is hugely important -- to maintain their quality of life, to include them in whatever way you can. To, as I said, follow that confused connection in the brain which turns a bumblebee into a raccoon and try to go with them there -- try to include them in your life for as long as you can. My deepest regret, undeniably, and where I feel robbed the most, is that my mother never met my children.

Wayne: And she missed them by just months, right?

Susan: Yes. My mother died in February, and my son was born in December; so you make the connection. It's about nine-and-a-half months.

Wayne: Uh-huh. And what year was that?

Susan: 1997.

Wayne: Now, her mother, as well, had Alzheimer's, is that right?

Susan: Uh-huh. Yes. My grandmother on my mother's side, at that time it was called hardening of the arteries. That's what they assumed she had. But now, we know that it was very most likely Alzheimer's. And she also died in her 70s, which is relatively young for this disease. She had similar symptoms. And what was really interesting to me about this is when we got my mother assessed by a team of geriatrics in Saskatchewan, a specialized team, she told them then, which they did not pass on to us, that she knew she was going the way her mother was going. She had never said that to us. She had never said, "I'm afraid that I'm going to have the same disease as Grandma." To the end, she never acknowledged to us, you know, forthrightly that this was the way she was going and maybe what she feared.

Wayne: Uh-huh. Now, that brings up an obvious question. Are you afraid that you're going to go the way that your mother went?

Susan: No, I'm not afraid at all. I think fear is a useless emotion. I'm aware that I have three sisters -- there are four girls -- in my family and that quite possibly one of us will get dementia if nothing else changes in our knowledge and research of the disease. It's impossible to know whether that's true or whether – you, it will be. But it's certainly part of my motivation to try and help change the course of this disease is that. Selfishly, of course, I don't want to have to care for someone who goes through it in my family again or to be the person that does.

Wayne: And do your children? Your children aren't old enough to know about this disease yet, right?

Susan: Oh, yes. When our cat died, the first death in our family that my children could comprehend, they were four and six or two and four, perhaps. And when the cat went to the vet and didn't come back, I explained to my son. I said, "You know, Tigger went to the hospital, and he's not coming home." And he said, "Well, what do you mean?" And I said, "Well, he died." And William said to me, "But, Mum, Tigger didn't have Alzheimer's." So for him at that early age -- I talk about my mother enough -- he associated death with Alzheimer's. That was about it.

Wayne: Wow. Now, what advice would you give to people? You've been through the decline and death of a parent with Alzheimer's. What have you learned that you think is the most important to pass on to others?

Susan: I think there are a couple of things. One is that, don't doubt your instincts. If you instinctively feel that something is amiss, don't try to keep justifying that it's not Alzheimer's, it's not dementia, it's not this or that. Get information. If you can, which is difficult, try to get that person assessed. Try to get a geriatric specialist to assess that person. I do believe it's better to know what you're dealing with than to not know. You will waste precious, precious time trying to talk yourself out of, "There's something weird going on here."

Wayne: Hmm….

Susan: Instead, deal with that. Try to get some facts about it, and then you still have -- you may have a great deal of precious time left. You may have years where you can, you know, have a quality of life with that person and know what you're dealing with. Second from that is getting more information on strategies. Find out from other people how the disease might develop and what you can do. There are very practical things -- financial control, you know, power of attorney -- but there's more subtle things that I think actually are more important. You know, talk to people who've been through it about, "How did you deal with this, and how did you deal with that?" -- general, day-to-day coping skills. Also, bear in mind that the caregiver at some point is the most at risk. At some point, the person with Alzheimer's is far gone that they are confused, and while their physical quality of life is maintained, the wear and tear is now on the caregiver. And I still see so many examples where caregivers will not get away, will not move away from, you know, the intensity of that experience to care for themselves. And oftentimes, it means against their spouse's or partner's or mother or father's wishes, because one of the sad things about dementia for some people is that there's a stage where you don't want to let your loved one go out of the room, like you won't let them leave the house, you won't let them go grocery-shopping or go out for an evening. So it becomes a bit of a prison.

Wayne: Okay. Well, that's good advice, and I appreciate your giving it to us, because I know you're busy. And I very much appreciate the time you took to speak to us. So thank you very much, Susan.

Susan: Well, I hope it's helpful. I really think, and I have for years, that pulling back the stigma of Alzheimer's is the first big step toward dealing with it in the best way you can. It's a long goodbye, it's painful; but, you know, there are ways of grasping something, some joy from it, and it really requires you to seize it head-on and get more information about it, and support.

Wayne: Great. Thank you very much.

Susan: Okay.

Wayne: Bye-bye.

Susan: Bye-bye.

Wayne: And that's it for the sixth edition of Talk for Memories. My thanks to Susan Ormiston for taking time from a deadline-riddled day to share her story, and thanks to you for listening. Now, it's time for Word to Remember. This time out, the word is "bumblebee". You'll recall that that was what one person with Alzheimer's thought was in her basement. Keep that word in mind, and visit www.alzheimerontario.org/talkformemories to enter our Word to Remember contest. Just e-mail us the Word to Remember. You could win one of six iPod shuffles. Good luck. If you'd like to learn more about Alzheimer's disease and related disorders, please visit www.alzheimerontario.org, or call the Alzheimer Society of Ontario at 1-800-879-4226. This is the last in this series, but Talk for Memories may be back in a new guise soon. So please stay subscribed, so you'll be on top of new content. If you're using iTunes to listen to these podcasts, we've made that subscription easy. Just click on the purple iTunes button at the top right of the Talk for Memories page. You'll be taken right to the Talk for Memories section of iTunes, and you can subscribe there with one click. I'm Wayne MacPhail. Talk for Memories is an Alzheimer Society of Ontario production. Thanks for listening, and thanks for subscribing. And I hope to be sharing stories and information about Alzheimer's with you again soon. Bye for now.

This interview was conducted in February, 2006. This contest is now closed. Please learn more about Manulife Walk for Memories here.

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