Episode Four: Music and Memory

Wayne MacPhail: Talk for Memories, podcast number four. Hello, and welcome to the fourth 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. Brenda Hounam is a 58-year-old Paris [Ontario] resident. Six years ago, she was the single parent of two children. She had to give up her career as an accountant when Alzheimer's struck. Back then, she thought the disease would prevent her from experiencing the life events -- births, graduations, marriages -- that she had looked forward to. I spoke to her by phone a couple of weeks after her son's wife delivered Brenda's first grandchild.

Wayne: The birth of your son's child, was that something that you were worried that you wouldn't live to remember?

Brenda Hounam: When I was first diagnosed, I wasn't expecting to ever be able to see the birth of a grandchild, and to be able to enjoy that child. I thought at the time that I would probably be too far along in this disease to appreciate that, so I was really overwhelmed at being able to appreciate and know what was going on.

Wayne: And you were diagnosed in April of 2000, right?

Brenda: Yes.

Wayne: Tell me about that diagnosis, and what that day was like for you.

Brenda: Well actually when I received the diagnosis, the day I received the diagnosis, I was actually relieved. Because at that point in time I was finally able to put a label to what was happening to me. For so long, I knew I was losing control but did not know why. And it didn't really register with me, the full impact of it until I had seen it written on an insurance form just a few weeks later. And, when I read the insurance form, and it said that I had Alzheimer's disease and that I would never return to work, is when it first really hit home with me.

Wayne: And you said that you felt that you were losing control. Talk to me about that. What does that mean?

Brenda: If you could appreciate that all of the difficulties I was going through affected my day-to-day living, so there wasn't a day that went by that I wasn't having difficulties and not able to explain why I was having those problems. So right from getting up in the morning, I was already struggling. I would be slower getting ready, because I couldn't always keep my train of thought, or I could not function as quickly as I always had in the past. So when you don't know what's happening to you, you just become really overwhelmed. You don't understand why you're not able to do all of those things that you've always been able to do.

Wayne: Now let's go back to the diagnosis, and the realization when you saw it on the insurance form that you had Alzheimer's disease. What was your first reaction to that?

Brenda: I think I had several reactions. Just kind of melted down at that point in time, broke down at that point in time. I didn't think I was old enough to have this disease, because my understanding of it was always that it affected seniors.

Wayne: And you were 52 at the time.

Brenda: I was 53.

Wayne: 53.

Brenda: Really at that point in time, I knew very little about the disease, so immediately I thought the worst-case scenario. And even when I first started to, after I was diagnosed and knew what was wrong and started to do the research, there was so little research available, written data available, on early-stage. Everything I was reading in relationship to Alzheimer's disease was more to the mid- to late-stages, which was very depressing.

Wayne: Now when you said that you imagined the worst, what did you imagine?

Brenda: I think for myself and a lot of the general public, you hear the word Alzheimer's disease, and there's no hope with that diagnosis. So that's the first thing that hits you -- that there's no hope. You can't see light at the end of the tunnel. You just know you're going to be progressively getting worse.

Wayne: So what effect did it have on your two children? You were a single mother. You had two children. What did they say when they found out that you had Alzheimer's?

Brenda: Well, I think we were all initially in disbelief. It was really more difficult for us in the beginning than it is now. Once I got on the medications, I realized that there is hope in the fact that you can still have quality time left. We learned that if we live in the moment rather than worry about what's coming tomorrow, and we can't change what's already past with yesterday, so we really live in the moment now, and enjoy every day we have. You can still receive gifts each and every day, but you have to learn to appreciate what those gifts are.

Wayne: One of the things I recall in my reading that you were concerned about was not being able, in later stages of Alzheimer's, to be able to tell your children that you love them.

Brenda: Yes.

Wayne: What did you do about that?

Brenda: Well, originally I had been trying to write letters to my children, so that down the road when communication was a problem, or on those days that I was trying their patience, I wanted them to know that, in the future when I can't articulate anymore that I love them, or I'm upset or I've made them upset, I wanted them to have these letters where they could go away and read them and know that it was the disease that was causing all of this, and it wasn't me as an individual. And that I still loved them, no matter what I was saying or behaving to the contrary. That I still loved them, and I wanted them to always know that. So I was struggling writing these letters. That's when I met Linda Westbrook. I had gone to St. Thomas for a speaking engagement, and she come up to me after I had spoke, and asked me if she could come down and pick my brain. Well, when she got here, she asked me if there was anything I still would like to accomplish before this disease took a hold of me, and I was telling her about the letters. And at that time she suggested to me that I make a video, and I said, "Well, a video is a really nice idea, but that isn't what I wanted to do. I would really like to have had a song to leave for my children." And that's when she told me her daughter was a singer-songwriter. So, she went home, and Sara agreed to write this song for me in conjunction with two other songwriters, Matthew and Andrew, and they wrote the song, One More Memory. It was very emotional, but they had said in that song exactly what my concerns were, and what I would like to say to them. That it was my mind that was leaving me, and not my heart. So at that point in time, I realized that the song was not, and should not, just be for my children. I felt it could help touch the hearts of every family that is touched by Alzheimer's or a related dementia. It was released on September 21st which was World Alzheimer's Day in 2004. And now Sara and Linda and I travel around speaking about my personal story, and Sara sings the song, and we sell the CD, and a portion of it goes to a local Alzheimer chapter, and the rest is used to raise awareness to help educate and give people insight into what this disease is like.

Wayne: Now you mentioned that you were struggling with writing letters to your children.

Brenda: Yes.

Wayne: Did you in fact end up writing those letters?

Brenda: I did write letters, but they changed in my original idea on what I wanted to put into those letters.

Wayne: So your children have those letters now?

Brenda: No. They will have those letters. They're there for them to open up later on, when I no longer am able to communicate with them in the same, at the same level I am at now.

Wayne: So your son is living with you. Does he help you on a day-to-day basis?

Brenda: Yes. I'm not safe to work in the kitchen on my own, unsupervised. I had a couple fires. I just wasn't burning things, a couple fires actually broke out on the stovetop, so we realized that I was not safe to be working in the kitchen on my own. So I have to be supervised when I'm cooking, or have to have my meals prepared for me if it involves the stove. So that's one of the things that he does on a regular basis for me, is prepare meals.

Wayne: Now, you seem to be, from talking to you, very aware of your surroundings -- very aware of your life. How does having to have your meals prepared for you make you feel?

Brenda: In the beginning, it was really difficult to lose part of that control. When you know your independence is slipping away from you, it is very difficult emotionally to accept that. So, originally when he was starting to have to cook for me and to look after my finances for me, it was embarrassing. Because it felt that, now that I'm unable to, would he remember that I was always able to, and the reason I can't do it now is because of the disease?

Wayne: Because you were an industrial accountant, right?

Brenda:Yes. And losing -- not being able to do the things you've always done, and always done well, and now not being able to do them at all without extreme difficulty -- is really a difficult step to get through and accept.

Wayne: And how did you get through that? How did you cope with that frustration and embarrassment?

Brenda: Well, for me it took a while -- quite a while. But I realized one day that it was like a grieving process that I had to go through. And once I realized what was happening to me and these emotions I was feeling, and if I treated it similar to a grieving process where I grieved the losses that I was experiencing, I found at that point in time that's when it started to change for me.

Wayne: So it was almost like a death.

Brenda: Yes.

Wayne: Brenda, tell me about how your mind functions as you do this interview. An interview is something that's spontaneous. You need to sort of think on your feet. You need to remember things. You need to think about what to say next. So, it must be difficult for you. Tell me about how this is operating in your head right now.

Brenda: Okay. Right now I had a problem, because that was too long. That question was too long.

Wayne: Okay. Let me break it down for you then.

Brenda: Okay. Thank you.

Wayne: Okay. I was asking about, an interview is a difficult thing to do at the best of times. You have to remember things, and think about what you're going to say next. So, tell me about how your brain functions, and how you think through something like an interview.

Brenda: Well, for one thing, it's slower for me to retrieve the information, but usually what I like to do when I'm being asked a question, is I write down key words and I just jot those key words down to help me answer the question I've been asked. But the, I quite often will not totally 100 percent answer a question. I will answer part of it, and then maybe drift off to the left or right of that in my response.

Wayne: And is that because you have difficulty with short-term memory?

Brenda: Yes.

Wayne: Okay. And has your long-term memory been affected as well?

Brenda: I don't think I ever particularly had a good long-term memory, so when you think that it's affected there, I would have no idea if it's affecting that at this point in time.

Wayne: Now, Brenda, you were asked by Linda [Westbrook] whether there was something that you wanted to do that you hadn't been able to do and were worried that you wouldn't be able to do once the disease took more hold of you. So let me ask that question again now. Is there something -- you've written the letters, you have the song, you have a grandchild -- is there something still that you want to be able to do that you're worried that you won't be able to do?

Brenda: Well, once every thing on my list that I had in the back of my mind that I would like to see or do before this disease took over, actually, has been done. So now what I've had to do is, I've had to make a new list, and so I consider myself very lucky that everything on that first list has been accomplished, and now I have to make a second list. I've always been a person that has goals and plans set out, so that's been kind of nice to know -- that I have had to redo a new one. On the original list also was to see my daughter graduate, and this spring, she graduated.

Wayne: So you've got to tell what's at the top of your new list.

Brenda: Well, it actually isn't complete right now. But a couple of the things I would like to see is my daughter graduated, but now she's going on to pick up, she only has to pick up a few more subjects to get her BA. So now on that list is I would like to be able to go to that graduation when she gets her BA, because she went through as an X-ray Technician. And I would like to see Sara accomplish with her music, because now she has become a very close friend and all of that she has done for me, I would like to be able to see something happen for her in her career. And now of course, I would like to see my granddaughter go through all the things that young people or children go through as they're growing up.

Wayne: Well, I certainly hope that you get to check off everything on your second list, and I really appreciate you speaking to me today. Thank you for taking the time. I know it's a difficult thing to do.

Brenda: You're welcome.

Wayne: Okay. You take care.

Brenda: Thank you.

Wayne: Bye-bye.

Brenda: Bye-bye.

Wayne: And that's it for the fourth edition of Talk for Memories. My thanks to Brenda Hounam for sharing her story and her song -- and thanks to you for listening. Now it's time for Word to Remember.* This time out, the word is "music," for obvious reasons. 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 the 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. 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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