Episode Two: A Rough Night

Wayne MacPhail: Talk for Memories, podcast number two. Hello, and welcome to the second podcast in our Talk for 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. Ruth Anne Smithson is a 59-year-old retired school-teacher. Her husband, Paul, is 62, and is living with early onset Alzheimer's. Ruth first started noticing her husband's memory loss in the summer of 2001 when he forgot how to play a card game. The disease struck Paul early, much earlier than normal. Often Alzheimer's doesn't hit until the age of 65. I spoke to Ruth by phone. She lives with Paul in the town of Pine Grove near Simcoe. Our conversation took place at 10:00 in the morning after Ruth had a rough, interrupted night's sleep because of Paul's behaviour. I started the interview by asking her about that.

Wayne: Can you talk to me a bit about what happened with Paul last night?

Ruth Anne Smithson: Okay. It's not really out of the ordinary, but it started about 1:00. I woke up, and I could hear him going through the dresser drawers, and I knew then that it was going to be a long night again. What he does is he gets up and he sometimes changes his clothes, or he'll just move clothing from one drawer to another. I don't get too worried. It used to bother me, but now I just let him go, and then he disappears for a while, and he comes back to bed. That was about 1:00, I said. Then later about 2:00, I thought he was going through his wallet. He put on a flannel shirt, was walking around the house, and he was asking, "Where did the people go? Where are those people that were here?" Well, we hadn't had anybody in, so he'd been dreaming, but, and he talks like this, but he doesn't remember anything later on. He was in and out of the bathroom. He was going through his razor set. That concerned me because his pills are in there, but he didn't do anything with the pills, and then later, about 5:00, and it wasn't just those three times. It was other times in between. Like I say, I don't get too worried about it anymore because there really isn't anything that he can do to hurt anything, but about 5:30, our house has an alarm on it for the nighttime, and all of a sudden it was (making noise). A rude awakening, so I got up and all he had done was let the cat out, but he doesn't know how to set the alarm, and he'd forgotten that it would come on, so basically, there wasn't a lot of sleep. Even since then, he's been up and down and up and down, and worried about all these people, and so I got up myself about 7:00 and made some coffee and came out, and he's been up and down, and I tried probably about five or six times.

Wayne: Now, when you talk to your husband, Paul, about that, what explanation does he offer for his behaviour?

Ruth Anne: Oh, he remembers nothing. Now, he does remember the alarm going off this time. Other times he's done it, and he hasn't remembered at all, so there is no explanation. It's just, he does say that he always did sleepwalk, even as a kid, and that's true. They have some funny family stories about him as a child, but this is more than just sleepwalking. This is conversations that he'll have with me, but it's not me his wife. It's just conversations, and he won't remember anything the next day.

Wayne: And is the night you had last night typical of the evenings you've been having lately?

Ruth Anne: Last night was worse. Usually, once he's up and dresses and undresses, he'll sort of relax and go back to bed and go to sleep. But it just seemed like it was through the whole course of the night last night, so I'm a little tired this morning. It was worse last night.

Wayne: Thank you for talking to me anyway. Can you tell me a bit about when this all started happening for you, when you started to see this kind of behaviour or other behaviour that's associated with Alzheimer's coming from your husband?

Ruth Anne: Okay, that's an interesting question, because a lot of times these are very, very smart people -- and the little things that were bothering me that he wasn't doing normally, and I'll get to those in a minute -- you always had a cover-up. There was always an excuse for having done something wrong, so when you don't want to see something, you don't see it. But it took this one incident which just hit me right over the head, and then I started to do something. It was, we were sitting down with his brother and sister-in-law, and we were just going to play Euchre. It was early afternoon, and all of a sudden, he was just blank. Could not remember how to play Euchre at all, and this is something we'd done forever. My sister-in-law helped him out, but it was at that point right there that I knew I had to do something.

Wayne: And when was that?

Ruth Anne: That was in the summer of 2001.

Wayne: Okay.

Ruth Anne: Alright, and I read the magazine CARP [Canadian Association of Retired Persons], and in this magazine there's an advertisement for Alzheimer's, and it says, "If your loved one suffers from memory loss, disorientation, problems with language, and difficulty with familiar tasks." Well, I took a page and I divided it up with those four headings, and then I started to write down all of the little things that I had just sort of pushed aside. Well, I filled up a whole page. I mean, each of those titles had at least six or seven things underneath them. Once I saw that, I immediately called my family physician, and we went to see him.

Wayne: And when you filled up that page with all those behaviours and incidents, talk to me about how you were feeling then.

Ruth Anne: Oh, totally, totally frightened. Just because I knew once I started to write that down, that you know my worst fears were coming true, and secretly, I was almost wishing that it was maybe like a tumour or something that could be fixed.

Wayne: And did you share your concerns with Paul?

Ruth Anne: Oh yes, yes. I sat down, once I got all this written down, we went over ever single item. And he agreed that it was a problem, so that when we did go to see our family doctor, it wasn't a shock to him that I had written these down. No, we've always been very, very upfront with each other.

Wayne: Your life changed dramatically that day. What happened after that?

Ruth Anne: The doctor of course took us very serious, because we don't go to the doctor unless there's something really wrong, and he recognized it. And we had to go through the battery of having the MRI and having the EEGs, and I don't know all the terminologies. I'm looking here. We had to have an orbital x-ray, blood tests. We went through everything that you have to go through so that they can eliminate the fact that no, there wasn't a tumour. There's no blood work wrong. There's nothing wrong with any of the bodily functions, and the last resort of course is, well, we went to see Dr. Gagnon in Hamilton at St. Joseph's, and that was January 17, 2002. And that was when she diagnosed him with front-temporal lobe dementia. It was just like being punched in the stomach. I went there thinking it was just another test. I didn't know that I was going to be hit with a diagnosis, and the worst thing at that point was that she said, "They're going to have to take his driver's licence away from him," and that all happened in three weeks. He didn't have a driver's licence. That was just a whirlwind of emotions. It was just a roller-coaster ride.

Wayne: And how did Paul react to the diagnosis and taking away his driver's licence, and I guess to some extent, a lot of his freedom?

Ruth Anne: Oh, violent anger. I shouldn't say violent, but oh, he was so angry. He was livid about the driver's licence thing. He was livid at the fact that he felt so sorry for me that I was going to have to do all the driving and that everything was going to fall on me. We stopped in at Dr. Johnson, our family doctor. We didn't have an appointment, but he took us in, and Paul just verbally exploded, and then he stormed out of the office and walked out. And I was so embarrassed because this is just so unlike Paul, and Dr. Johnson said, "That's normal." He said, "If he reacted any other way," he said, "I would have been shocked. That's a normal response. Frustration, anger, helplessness." And he said, "That's very normal for Paul to act like that." So, it took a little pressure off me, because we're both very quiet people. Immediately, I was driving everywhere, and we were still involved in a lot of activities at the time. Curling. He'd always been a really, really, really good curler, and he curled at least three times a week, sometimes four, so that meant a lot of driving back in and out of Simcoe. We're about maybe 10, 12 minutes out of Simcoe. That's pretty Canadian, isn't it? We have two boys. So there was all the curling. I'd go in at least a couple of times for church meetings and choir and activities that way, so it really, it cut into my time.

Wayne: Now, you mentioned that you had two boys. Talk to me about their reaction to the diagnosis.

Ruth Anne: Okay. The older one lives around here, and he had more dealings with his Dad than the younger one, like in the later years, and Greg wasn't surprised. In fact, probably seven or eight years ago, Greg had asked me if I would check his dad's hearing. Get it checked, because he said, "Mom, I'd tell him something, and five minutes later he'd ask me the same thing I just told him." So he thought at that point it was hearing, and I knew there was nothing wrong with his hearing. But he noticed, and he could see it coming, so he wasn't shocked. Well, I shouldn't say that. We were all shocked at the actual diagnosis. We were all hoping for something simple, something that could be fixed. The younger one, he's been living in the Toronto area and Gananoque. He didn't have as many dealings with us in that time period, but he's a student and he understood. He was shocked too, but they've both been super since the diagnosis. They both have been really, really helpful.

Wayne: Were they up for Christmas?

Ruth Anne: Yes. Yes, I had Christmas here.

Wayne: And tell me a little bit about what Christmas is like with Paul in the early stages of Alzheimer's as he is.

Ruth Anne: I had, I know enough about the disease at this time and I know that confusion really will get to him. Like anything that's out of the ordinary will bother him, so everybody knew that at a certain time if dad went into the TV room, that he was not to be bothered, or one person at a time could go in there with him. But we had sort of a contingency plan set up so that it wouldn't be too much for him. So, but on the other hand, we had three grandchildren there. A five-year-old, a three-year-old, and a four-month-old, and so many presents you couldn't even hardly get in the room, and it was chaos for awhile. But I think that's pretty well general for a lot of people. But he handled it pretty well, but I could see -- I watched him -- and when I could see him start to rub his head, I knew he was starting to get a headache. So I got him out of the room and got him some Aspirin, and he was fine.

Wayne: And is he aware of who the children are and who the grandchildren are and that it was Christmas?

Ruth Anne: Yes, to all of those questions. He forgets their names. I'm not sure he could -- if I asked him this today -- I'm not sure if he would remember their names. If I just say a name, it doesn't always click.

Wayne: Tell me about how you imagine the next five years of your life.

Ruth Anne: Oh boy. I'm almost kind of like an ostrich. I don't like to think about it. I know I have to. It's going to be more and more difficult. We are going to try to stay in this house as long as possible and keep Paul here, because he's very physically okay at this time. He hasn't lost any of his physical attributes. He's still tall and reasonably slim, and he can still get out and rake and shovel and do that sort of thing. But, so as long as he's physically okay, I think we can manage to stay in the house. It's frustrating, but I can handle that, but if it gets to where he can't get around, that's when we'll have to do something, and I'm hoping that that's at least, I don't even want to put a number on it. Like I said, I'm just trying not to go there, but I do meet with the Alzheimer Society regularly. I meet with other caregivers regularly, and I do know, I mean I'm not stupid. I know this is coming, but, and all the papers are done. Our wills, our power of attorney. It's all looked after, and it's just a matter of when. When we all think it's time, then we'll set things in motion then.

Wayne: When you say, "set things in motion", explain to me what you mean.

Ruth Anne: Oh, to go into a home. For Paul to go into a home. There are quite a few here in the Simcoe area that he could go into, but the Alzheimer Society, they're so helpful. They will take me and go through the process with me, of finding him a place.

Wayne: Speaking of being helpful, you must have a lot of advice for people who are about to or are just in the early stages of facing down what you already faced down four years ago, the diagnosis of dementia of a loved one. What advice do you offer them?

Ruth Anne: Okay. Most important, is let people know. Don't keep it to yourself, and see that's a mistake that we made. We tried to keep it to ourself, and it was really difficult once Paul had lost his driver's licence. He was involved in a bonspiel over in Brantford, and it was his turn to drive, and the guys all looked a little astounded when I drove. And we made some cockamamie story about, "Oh I just wanted to shopping while they were curling," and people wonder. People find it strange the things that, well that Paul was saying and doing, and finally when we went public with this, I had so many people come up and say, "Well that explains it," and everybody had a little story about something that Paul had said or done which they thought was really odd, and it just explained everything -- so be upfront.

Wayne: Now Ruth, explain to me why you were so reluctant early on to be upfront.

Ruth Anne: It's almost like, it's a stigma. At least it used to be a stigma. If somebody had dementia or Alzheimer's, that's an "old person's disease," and I'm using that in quotation marks, because I'm finding out a lot different now. I didn't want people to know. It was almost like it was an embarrassment, and yet it's not.

Wayne: And how old was Paul when he was diagnosed?

Ruth Anne: 58. Way too young. Okay. Some other suggestions: contact the Alzheimer Society right away and go to their meetings. You never know what's going to come out of them, but they will put you in contact with the right people to be in contact with. I go to meetings with some of the caregivers that I first met, and there's nothing better than meeting with other caregivers because we're all going through the same type of thing, and everybody understands because no matter how good your friends are, they don't understand. When you tell them you've had a bad night, they just sort of nod. But other caregivers, they know. They know what a bad night is.

Wayne: When Paul is really depressed or angry or feeling sorry for himself or feeling sorry for you, what do you tell him that makes him feel better?

Ruth Anne: I have told him many times, and he doesn't ever really feel sorry for himself. It's always for me, and I just assure him that I know that if this were all happening to me, that he would be doing the very same thing for me. And, but basically that's all I've ever told him, and he craves my company, and I just assure him that I will always be there for him.

Wayne: Ruth, thank you very much for talking to me today.

Ruth: You're very welcome.

Wayne: Okay. Bye-bye.

Ruth: Good-bye.

Wayne: And that's it for this edition of Talk for Memories. My thanks to Ruth Anne Smithson for sharing her life and advice with us, and thanks to you for listening. Speaking of listening, it's time for Word to Remember.* This time out, the word is "curling." You will recall that that was one of Paul's hobbies. 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. 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. 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. 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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