Episode Five: The Fading Daughter

Wayne MacPhail: Talk for Memories, podcast number five. Hello, and welcome to the fifth 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. Barbara and Charlie Wallis live on a small farm about five miles east of Kincardine in Ontario. Several years ago, Barbara's father was stricken by Alzheimer's disease and eventually was placed in a nursing home in nearby Lucknow, where his wife visited daily for three years. Then, she too decided it was time to move into the home. Now Barbara and Charlie visit them there. I spoke with the couple by phone on a cold January morning. They shared their story of living in rural Ontario with faith, and with a parent whose mind has fallen victim to dementia.

Wayne: Charlie and Barbara, thanks for joining me today. You're in a different situation than people that I've interviewed for other podcasts in this series, in that you're taking care of Barbara's father who has Alzheimer's. Can you tell me when he first was diagnosed with Alzheimer's and how your life changed as a result of that diagnosis?

Charlie Wallis: I would say it was probably 1997 when we first started worrying about his memory problems, and it was shortly after that that we went through a series of appointments with doctors. And finally the doctor came up with the diagnosis that it was Alzheimer after he had eliminated any other possible causes of the memory loss and some of the strange behaviours that were going on.

Wayne: Okay, now that was back when he and your mother, Barbara, were both I guess in their late 70's, so how did your mother take that? How did she deal with it?

Barbara Wallis: Well, not very well at first. She was in denial and would try to keep living life as normally as possible, including letting my dad drive, when maybe he shouldn't have been. And she would try to encourage him to keep on with his activities as much as normally, but we could tell he was having problems.

Wayne: So did you feel that she was sort of enabling him in that way, or did you think that it was just encouragement?

Barbara: A little bit of both, but we did feel badly about her enabling him to drive.

Wayne: And now they’re both 86, is that right?

Barbara: Yes.

Wayne: And they're in Lucknow, which is near where you are. You're in Kincardine. Can you position Kincardine for us?

Charlie: Kincardine's on Lake Huron, and it's about half way between Godridge and Owen Sound.

Wayne: Okay. And that's in Ontario. And Lucknow -- which is where your father is -- that's about 30 minutes away, right?

Charlie: Yes, it's 30 minutes away from us.

Wayne: Now, Barbara, both your mother and your father are in the nursing home there. Tell me what the accommodations are like there and what their life is like.

Barbara: Well, we are very pleased with that nursing home. They share a room, which the building itself is quite old, and we wish the rooms were a little bigger to accommodate my father's wheelchair for example. But the staff there are so wonderful and caring. We are really pleased with the care both my parents get, and my mother has settled into a bit of a routine and sometimes plays the piano there. And my father loves the music and some of the activities that they have.

Wayne: Now, tell me about your mother's health.

Barbara: She's fairly good, except for some arthritis. She needs to walk with a cane, and she also has some fairly bad short-term memory problems, which were probably caused by a small stroke.

Wayne: And when did that happen?

Barbara: We're not really sure, but maybe in the last year or so, and she has had a CAT scan which showed evidence of a stroke.

Wayne: So is she aware of the fact that her husband has Alzheimer's?

Barbara: Yes. She is.

Wayne: And how is she responding to it now? You said earlier that she was in denial about it. Is she still in denial?

Barbara: I don't really think so, but every so often she'll try to get dad to say something or to answer a question, and actually he hasn't been speaking now for a couple of years. I don't know if she forgets that he can't really answer, or if she just wants to maybe think that he might.

Wayne: Now Charlie, when you and Barbara go and visit her folks, what contribution do you think you make to their quality of life? Is her dad aware of who you are and that you're visiting on a regular basis?

Charlie: Well, I don't know if he knows we're visiting on a regular basis. But he certainly does pay attention to us when we're in the room. Now he doesn't speak, so his actions are by looking at us. Maybe smiling, and we do some personal grooming when we're there, and he seems to enjoy the contact that we have with him.

Barbara: Sometimes we'll trim his mustache or trim his fingernails, and he seems to really enjoy that. And I'm sure he recognizes us. His eyes light up when he sees us, and he smiles and laughs and just enjoys us being there.

Wayne: Now when you say he recognizes you, do you think he recognizes you as his daughter?

Barbara: I think so. Sometimes I will speak to him about the old days and remind him of some of the things he used to build and design and invent. For example, clocks and telephones and antique cars and model trains, and he'll look right at me and nod and smile. And I'm sure he understands what I'm saying, and he seems quite happy to be listening.

Wayne: And what did he do? Was that a hobby of his or was he actually an engineer or designer?

Barbara: Well, those were hobbies. But he was an electrical engineer with Bell Telephone Laboratories. And he designed switching equipment for telephones, and I'm not sure what else.

Wayne: Talk to me about what your reaction was like when you first realized that your father had dementia.

Barbara: I felt pretty upset about it. I knew that his mother had had Alzheimer's as well. And I sort of remembered when I was a little kid how she would say things that didn't make sense, and that kind of scared me when I was little. And then to think that my dad was maybe going through the same thing, I was pretty upset and wished it wouldn't happen.

Wayne: And when you think now, I mean you're 50 years old. You're father's mother had Alzheimer's, he has Alzheimer's -- is it a concern of yours that it might happen to you, or have you discovered that that necessarily isn't the case?

Barbara: Oh, I'm very concerned about it happening to me, yes. I have an uncle as well who had it and has since died. That was my father's brother.

Wayne: And Charlie, have you and Barbara talked about this situation and what's possible in the future?

Charlie: Well, for us, no we haven't discussed it. But we have made some moves in estate planning to, in case this does happen. The survivor will be looked after. So, we've done that much, but no, it's not something we think about. And it's not something that we talk about much here.

Wayne: Now, what advice would you give to folks who are in your situation where you are talking care of an elder parent with Alzheimer's? What have you learned since your father was diagnosed, Barb?

Barbara: Never give up. It's really valuable to keep visiting the person, and keep expressing your love and communicate through music or touch or just speaking to the person. I think that maybe by stimulating your loved one's brain to keep working as much as possible, that it helps. And the person is still there. And in my father's case, he doesn't speak any more but you can tell he's still there and he still seems quite happy. So I would just say don't give up.

Charlie: We've noticed when we visit the nursing home, some of the families give up on the family member, and say, "That's not the person I used to know." And they just don't visit as often. We don't feel that is a very good thing. The people really enjoy having visits. They need the visits. It keeps them in contact with the world. And then it'll actually keep them younger and more active for a considerably longer time.

Wayne: Now talk to me a bit more about music. Because in an earlier podcast, one of the people I interviewed, Brenda [Hounam], was talking about the power of music and that she actually wanted to have a song that she could leave her children when her memory faded. And I've been reading recently about the effect of music on folks with Alzheimer's. So tell me what you see in terms of your father, and when you're mother plays the piano -- what happens to him?

Barbara: He perks up. His eyes light up, and quite often he'll whistle along. He always used to whistle tunes, and now he still whistles, but you can't always tell the tune. But he taps his foot or moves his hand, and you can just tell he really enjoys the music. And we have some old records that we've kept and a way to play them in the room there in the nursing home, and when we play these records or just any kind of music, you can tell he's listening and enjoying it. Maybe sometimes conducting the orchestra a little bit.

Charlie: Barbara plays the piano, and sometimes I will lead the singing at the nursing home. And it is amazing that the people, who probably don't talk very much, still know the old songs and the old hymns, and can go through two or three verses of them. Not being able to read the words, but they can sing every word. And it's really quite amazing to see them perk up when the music comes along.

Wayne: Now are you both involved in any kind of support group through the Alzheimer Society there?

Charlie: Yes. We meet once a month for a couple of hours and there is one of the caregivers from Owen Sound -- one of the nurses comes -- and she moderates the meeting. And it's really quite valuable. Now we've probably got about five or six families that have been represented over the years on a fairly regular basis. And it's really been good for us, because we get to share information. And we've learned a lot from the situations with others -- what is needed to be done in a certain circumstance, and really quite uplifting for us all. And we have grown quite close together, too. It's like an extended family sort of situation.

Wayne: Right. Now are you typical of the people in the group, or give me a sense of what the other people in the group are going through in terms of family dynamics.

Charlie: I would say it's divided half and half. It's younger members of a family looking after their parents, and the other half is made up of partners who are looking after their spouses. And there's several different situations. Some of them looking after their spouses have chosen to do it in the home, and they will keep the person with Alzheimer's in the home for, right up to the last minute. So, there's many brave souls out there working with partners.

Wayne: Now Barbara, tell me about the decision to move your dad into a nursing home, and then your mom. Tell me the process that you went through and what you were thinking and how that was for you.

Barbara: Well, those were difficult times. But we feel that there was a bit of divine intervention almost. In the case of my dad, he was, we're not really sure what happened. But he ended up on the floor one day, and mother wasn't able to get him up again, but she thought he was just being stubborn, so she left him there for quite a while. But at that time we had people coming from Paramed who would take my dad for a walk every day, because he loved walking. And when she came to the house that day and discovered that he was just lying on the floor and nobody could get him up, she did call for an ambulance and they took him to the hospital in Kincardine, and it was determined that he wasn't really safe at home anymore. And mother wasn't really able to take care of him with her arthritis and physical problems. So eventually he ended up in the long-term care facility. It was actually our second choice, but we ended up liking it so much that he stayed there. And mother visited him there every day. Drove herself for about three years. She was very faithful in visiting. Just amazing. And then in mother's case, this was about a year ago, and it wasn't really safe for her to be at home alone. Now Charlie and I were supporting her a lot and doing as much as we could to help her be independent and she was still able to drive and look after herself, but she was starting to not eat right, even though food was available. And we were just questioning her safety, which she thought everything was fine. But eventually she expressed a desire to maybe be living with her husband, although she was, her mind was not really good all the time, and so she was constantly changing her mind. And this would be from day-to-day and even hour-to-hour, and she actually did apply herself to be on the waiting list to get into Pinecrest Manor with my dad, but then when her turn came on the waiting list, her turn came up, she said, "No." But then we realized that would involve a six-month wait if she went back to the bottom of the list. So I guess again through divine intervention she, after wavering back and forth for about three days, she finally phoned Charlie and me one morning and said, "So, when are you coming to get me to take me to Pinecrest?" And we were really happy she said that, and she really meant it. So that's when we went. But it was a very hard thing, and I cried for about a week knowing that she had given up her independence.

Wayne: Now you mentioned divine intervention a couple of times, and I got a sense that that just wasn't an expression for you. So tell me about your faith and what's happened with your mother and father.

Barbara: Charlie and I are Christians, and we have a very strong faith and find a lot of support in our church. We love other fellow believers, and we believe in prayer. We have a prayer chain through our church and have used it many times. And my parents also grew up always going to church, so they passed on that faith to me as well. And so when some of these difficulties hit, I'd say that in Charlie's and my case, we've really been held up by our faith in the Lord, and I'm not sure that's so much true for my mother. I think she was maybe more angry at God, but anyway it's been a great help to us through these times.

Wayne: Now, are there other people in the Alzheimer Support Group who rely on that faith, or are they, is there a mix there?

Charlie: Well, we have found over our meetings just by casual conversation, that most of those, in fact I think all in our group, have a connection to the church and some very strong. There was one minister that we had within our group, and others were very regular attenders. And I know it comes up in our meetings every so often, and because there is nobody there who is not a Christian, we have quite free and open conversations about it.

Wayne: Now tell me about where you're living. You live on a farm, is that right?

Charlie: That's correct. I came right out of the centre of Toronto, and I worked at Pickering Generating Station during the construction phase of that. And I was transferred up to here, and I thought, "My goodness this is an awful shock. Leaving the city and coming to a very small town." And real estate was tight, and I ended up having to buy a farm and building my own house. And I was here and I've had opportunities to go back to the city, and I've decided to stay here. I like the clean air. I like the country. I like being able to go for a walk in the bush. And we enjoy the wildlife around here, so it's a pretty exciting place for us. And we wouldn't like to live in any other place especially in town anymore.

Wayne: Barbara and Charlie, thank you very much for joining me today and sharing a bit about your life with your folks and your life in the country, and I hope that you have a good winter and a wonderful spring on your farm and that you continue enjoying your mother and father, Barbara, and thank you for talking to us today.

Barbara: Okay. Well, thank you.

Charlie: Yeah.

Wayne: You take care.

Barbara: Okay.

Charlie: Okay.

Wayne: Bye-bye.

Barbara: Bye.

Charlie: Bye now.

Wayne: And that's it for the fifth edition of Talk for Memories. My thanks to Barbara and Charlie for sharing their story, and thanks to you for listening. Now it's time for Word to Remember.* This time out, the word is "intervention". You'll recall Barbara referred to divine intervention a couple of times. Keep that word in mind and visit www.alzheimerontario.org/talkformemories to enter our Word to Remember contest. Just e-mail us that 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. 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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