Episode One: Caring for Philma

Wayne MacPhail: Hello, and welcome to the first podcast in our Talk from Memories series. I'm your host, Wayne MacPhail. In this series, I'll be interviewing people living with Alzheimer's disease and related disorders and their caregivers across Ontario. Geoff Dean knows the impact of Alzheimer's disease first hand. Geoff, who's 65, is a former book publisher. He had to give up his career to care for his wife, Philma. They were married 42 years ago when they were both University of Toronto students, but in the '90s Philma showed the first signs of dementia that gradually worsened. Their two children live in other cities. Geoff and Philma's sisters trade off assisting her day-to-day. I spoke with Geoff in the Toronto offices of the Alzheimer Society of Ontario. I started by asking him how he first met Philma.

Geoff Dean: That was delightful. We were both students at the University of Toronto and met through a mutual friend. And I was rather intrigued by this vivacious, very attractive young lady from Trinidad, and was curious and got to know her a little better, and things went on from there.

Wayne: And what year was that?

Geoff: We met, I think, in 1960.

Wayne: Now, you're white, she was black from Trinidad. So this was 1960, that must have been sort of an interesting time for that to happen.

Geoff: It was an interesting time. They were the days of Martin Luther King Jr. and TV coverage of the riots in Alabama, and all that sort of thing at the time. It was disturbing to watch that, but the international students at the University of Toronto were an elite group and very bright and fun to be with, and at first I didn't think about it. As time went on and our relationship got more serious, people started to ask if I was sure that I wanted to proceed with this, and might there not be additional problems to the regular problems that life brings anyway. And I did a lot of soul searching about the depth of my feelings for Philma, and I think frankly that any relationship would benefit from the kinds of challenges and soul searching that I did before deciding to proceed. And that this was a relationship that I felt I really wanted to get into for my life, and my feelings haven't changed ever since.

Wayne: And what was it about Philma that attracted you?

Geoff: Well, she was certainly attractive physically. She was vivacious. She was a lot of fun to be with. She was always positive. Never had any lack of self-confidence or unwillingness to try something new, and she was bright and just attracted a lot of people around her.

Wayne: And once you got married, what did, how did you spend your time, apart from teaching and running a book publishing company?

Geoff: We got involved in a number of different things. I was very involved in the trade association and book publishing. We also started curling. Had children after about - the first child after about four years, and of course, the two children took a good deal of time. Especially on Philma's part. She was a teacher and did take some time off with the two children. Her hobbies varied from time to time. She was always an excellent cook. Later on in life, she got really involved in knitting, and then in the last few years, she turned to quilting and made some fabulous quilts. That's a very exacting craft that really requires a lot of discipline and patience, but she, as with everything, she just entered the world of quilt making enthusiastically and became very good at it - and now unfortunately can't even operate a toaster.

Wayne: Now tell me how that changed, and when that started changing for her and for you.

Geoff: There were some changes in her behaviour and moods in the mid '90s, and every relationship goes through its challenges. So I was trying to figure that out, and I guess she was too, and just deal with whatever was happening. But I got an assignment to go to the Philippines and had five lengthy trips in the late '90s, and on the last one in January 1997 when I called home, she kept asking me the same questions over and over again and the alarm bells went off. And when I came home after that trip, I started to log what was happening that was unusual in her behaviour or what she was saying. And then finally went to the family doctor and asked him what the symptoms suggested. And his reply was, "They're pretty classic symptoms. I think perhaps you should prepare for the worst. But we'll have to go through a lot of tests just to find out what really is the problem."

Wayne: And when he said "prepare for the worst," what did he mean exactly?

Geoff: I think he was suggesting that it looked like it could be Alzheimer and was expecting that that would be the diagnosis. And that is, in fact, how it worked out.

Wayne: And how were you feeling at this time?

Geoff: It was very upsetting. There were periods where I got depressed. In fact, I did go through a period of depression requiring some medication and close monitoring by my family physician. It was hard to deal with in every respect. I had always been very proud of our relationship, and here it seemed as if it was just being torn apart by forces that we weren't familiar with and didn't know how to deal with. And it was very upsetting.

Wayne: And how did your children react?

Geoff: She was particularly close to our son, and he's had a lot of difficulty with this. I think that their relationship was so close that he's just had a great deal of difficulty facing it. He lives in another city so that we don't see him very often, and I suppose that's some sort of comfort to him. But the lack of communication from him is telling in terms of signaling how much difficulty he's having in dealing with it. Our daughter was the same way, but very early on she said to me, "Dad, I feel that I've lost my mother now. She's there in body but certainly the person that guided me all these years is no longer there. And so now I'm worried about you and want to make sure that you're all right." That was comforting.

Wayne: Were they concerned about what was going to happen to them in the future?

Geoff: I did get some admission from each of them independently that in the back of their mind they do have a worry, "Might I get it too?" This, again, is something that points up the value of the Alzheimer Society services, because through the literature and information sessions and counselling, I've learned that the disease is random - that the chances of them getting it are very small. And have tried to reassure them of that and send them appropriate literature and refer them to local counsellors in the cities in which they live. But it is something that becomes extremely important to deal with and to, I think, be open about with any family that might be involved and might have a concern.

Wayne: And how was Philma coping with this? There must have been sort of moments of clarity. So what would she say when she was talking to you about how she'd behaved and what she was thinking and how her world looked to her?

Geoff: In the very earliest stages only, she did have moments of clarity. The closest she would come to saying anything about it was occasionally, and in rare moments, she would say, "I don't like what's happening to me." And that told me that she was aware that she was 'losing it,' to use common jargon. And didn't like the fact that she knew something was beyond her control.

Wayne: Are you a religious man, Geoff?

Geoff: No, not really.

Wayne: How were you feeling in terms of this was unjust, that this should happen to you, or how were you coping with it in terms of fate or destiny - or anything like that?

Geoff: I never felt it was unjust. I felt that it was simply something that happened. By that time, I had learned enough about Alzheimer to know that it was random in terms of who became victims. And a good friend said something to me very early on, which just kept running through my head all the time. He said, "Geoff, you're going to go through some difficult times, and what you must always remember is that it is never Philma. It's always the disease." And so I would say to myself  I-don't-know-how-many-times-a-day, that it's not Philma, it's the disease. And those words were of some comfort in that I still have a great deal of love for Philma and would not abandon her and just felt that this was sad that in, with such a vital relationship, a great deal was lost. And there was no longer any ability to share or to travel together or to do so many of the things that we enjoyed over the years, like concerts and events and travel.

Wayne: You mentioned that your daughter was concerned about you. Are you worried about you?

Geoff: I'm worried about staying healthy, because it would be extremely difficult if I were not healthy. I'm concerned also about remaining active mentally and just keeping outside interests that will hopefully keep me fresh enough and positive enough that I can continue to deal with Philma's life, especially as things start to deteriorate.

Wayne: And how do you prevent yourself from getting angry?

Geoff: I have almost never felt really angry about this. It's something that comes in one's life that one has to deal with. I feel very sad, but I don't feel angry. And it's only once in a while when frustration reaches a level, perhaps because I can't get Philma to do something that she should do, or something of that sort, that I get angry momentarily. But it's just angry with the frustrations of the moment. It's not anger that things are the way they are. And I just, I guess that it's just the love for her that I have for her and the sadness that I feel for her and for our relationship that keeps me that way.

Wayne: So tell me what life is like with Philma now. It's been a number of years since Alzheimer took root, so give me an example of a day-to-day experience for you.

Geoff: Life now is a rather boring routine, frankly. Because we're not able to travel, we're not able to go out very much. I can no longer take her to such things as a concert or even a movie, because she'll simply start talking in the middle of it and may keep on talking without realizing that she's disturbing it for other people. So we spend most of our time at home unfortunately. In good weather we try to go out for walks, and I try to get her out once a day. In winter weather, of course, it's a little more difficult, and so we end up going to shopping centres a lot. And we used to enjoy shopping together. Fortunately now she has no interest in shopping or in what the stores have, so it's just a matter of going there for the exercise. But occasionally it's even difficult to get her across the threshold at the front door. And so the day-to-day activities are mostly a matter of monitoring her moods. Trying to make sure that everything is bright and positive. Looking on the TV guide for shows that might be of interest to her. It's interesting that she is interested in watching sports and children's shows and light comedies, and I note that she reacts rather negatively when there's a show with violence and so on. So I try to stay away from those. She became a diabetic - a type 2 diabetic - about five years ago, and that means a special emphasis on the food intake and exercise. And her sister is a very cooperative and dedicated individual who cooks all of her meals so that I just have to heat them up in the microwave. So I have to watch the time for that. She's still able to dress herself somewhat and needs some prompting to go to the bathroom. So I'm constantly watching the time for that, just to try to make sure that that routine takes place when it should. But around there house, there just is listening to music, watching TV, listening to her talk. Quite often putting her with a favourite teddy bear or some other craft piece that we have around the house and listening to her talk, sometimes endlessly, and having a very animated conversation with those things.

Wayne: What does she talk about?

Geoff: You can't really tell. Because it's nonsensical. You can't follow a train of thought. There is frequent mention of kids, and because she was a teacher, I always try to determine - is she talking about kids that she taught or kids in the neighbourhood or perhaps our kids? Most often, I just can't figure that out. And if I'm sitting with her, I just pretend that we're having a real conversation and add things or add questions from time to time, and say, "Oh that's interesting," or "Really?" or things like that, just to keep the conversation going. And she seems very happy with that. The only good thing about Alzheimer that you can note is that as the disease progresses, the individual seems to have absolutely no awareness of their state, and that's the only good thing about Alzheimer. That she's not aware of the difficulties that she has.

Wayne: Now this can't be how you imagined your life would be when you got married in 1963.

Geoff: Not at all. As I said before, I was really looking forward to growing older with Philma, enjoying a lot of events together, travelling and so on. None of that is possible now. And it just, one has to be realistic, and just say, okay that's the way life is, and we just deal with it as it presents itself.

Wayne: And how are you coping day-to-day with that? I mean, you said it's fairly boring. What else are you feeling about it?

Geoff: I think sad is the first emotion that comes to mind. Sad, because she was so vivacious. So energetic. So positive. So creative. And now just can't do anything, and it just is a great sense of loss. Loss in terms of what she can do to keep herself happy. But also a loss in terms of our relationship, and all of the things that I had looked forward to in happily growing old with her. That just can't happen.

Wayne: And that's it for the first edition of Talk for Memories. My thanks to Geoff Dean for his time and honesty - and thanks to you for listening. Speaking of listening, it's time for Word to Remember.* This time out, the word is "teacher." You'll recall that that was Philma's profession. 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, and 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. Stay tuned for the next podcast in this series coming soon, and remember, you can subscribe so these podcasts will arrive automatically right on your computer. I'm Wayne MacPhail. Talk for Memories is an Alzheimer Society of Ontario production. Good-bye for now.

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

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