S2E6 Transcript: Reflections of a Sole Dementia Carer

Lori Pinkerton-Rolet
Welcome to a special edition of Third Age Design. I’m Lori Pinkerton-Rolet, and this month we’re stepping away from our usual format to focus on at-home carers for people diagnosed with dementia. If you’re involved in the operation of a home which caters to these needs, or if you’re an architect or designer working in this specialist area, you’ll get some insight today on some of the things which might be happening at home which lead to somebody seeking residential care for someone they love. And if you are an at home carer, it’s important that you know you are not alone. What adaptations to the home might be useful to you? This issue has no national boundaries. So I’m speaking with two people today. One is a sole carer in the United States who has been married to her husband for 63 years. She is his sole carer and support. The other is Sheridan Cocker, recommended by the Dementia UK organisation. She’s a Clinics Admiral nurse in the United Kingdom, a group which visits and supports people with dementia and their carers in their own homes. Let’s start with my discussion with the carer Nancy. There’s a well-known saying that if you’ve met one person with dementia, you’ve met one person with dementia. And a lot of research is being done as to ways of supporting people in that condition. But of course, a lot of times the people providing that support are at home carers. And in some instances, they’re on 24/7. The lady that I’m just about to speak with is in such a role, we’re going to leave this anonymous, but I’d like to ask some questions as to what that feels like for the person providing the support. So my first question to you is when you received the diagnosis of Alzheimer’s for your husband, what were your immediate thoughts?

Nancy (carer)
I was shocked. And I was sad. I cried. And I couldn’t believe it because he was my hero. He had taught me to drive he had taught me how to write a check he had taught me so much. And to think that this was happening in his brain was heartbreaking.

Lori Pinkerton-Rolet
And these things never sort of take a trajectory that you expect. In what way do you think your experience in dealing with the progression of the disease has differed from what your initial thoughts were?

Nancy (carer)
I didn’t think I was prepared to handle it. And as it progresses, in our case, slowly, because we’ve used two different medications that can’t take it away, it can’t stop it, but it can at least slow it down so that I’ve had the time to adjust as the disease has progressed. And I found out that I’m stronger than I thought I was

Lori Pinkerton-Rolet
Sheridan, are carers generally surprised by the trajectory that the disease takes in people that they love. Is that an unusual thing? Or is that your experience?

Sheridan Cocker
It does vary. If I’m honest, people can be surprised, particularly when people deteriorate quickly, so people are always surprised someone deteriorates quite quickly after diagnosis. Because you happen to adjust quite quickly to that as well, and takes a lot of time for people to adjust to the small changes. So if there’s a big change over a small amount of time, it can really throw people. And similarly actually, if somebody doesn’t seem to be deteriorating after a few years, that can also take carers by surprise, because obviously they had this really big grief reaction to the diagnosis in the first place. They’re expected or you know, a rapid decline. And that meant it doesn’t happen. So people can also find that a bit strange as well. So yeah, there’s all kinds of different emotions that come when somebody gets a diagnosis. Yeah, sometimes people can be quite surprised by the way things develop.

Lori Pinkerton-Rolet
Let’s go back for a moment now to the interview with our carer Nancy. Are there changes in behaviour that came as a total shock to you that you weren’t necessarily prepared for?

Nancy (carer)
Yes, for example, I’ll just give an example. One time I told him about something, which he found very interesting. And he said, I’m going to have to tell Nancy about that. And I told him, I am Nancy. And he said, I know. But I mean, my wife. And I said, I am your wife. And he stopped for a minute. And then he said, Yes, I know, I don’t know what’s going on. Because he’s never heard the word Alzheimer’s.

Lori Pinkerton-Rolet
So you, you chose not to tell him the diagnosis? Presumably, that was an agreement with the Doctor. Can you tell our listeners, how that decision came about and why?

Nancy (carer)
That was actually my choice. Because we have been married now 63 years. And this has been going on for I would say, approximately six years. And I know my husband so well, that I knew if he heard the word knowing because he has seen some relatives who have suffered Alzheimer’s and knowing what the people around the the patient was suffering, I thought it would be damaging to him. So that if just occasionally he thought something was wrong, was better than putting that in his brain.

Lori Pinkerton-Rolet
Right. So you expected that that that would have a deleterious effect?

Nancy (carer)
Absolutely. In this case, all cases are different.

Lori Pinkerton-Rolet
And in retrospect, are you still in agreement with that decision?

Nancy (carer)
Absolutely. And I have talked it over with my doctor, and they say, sometimes the wife or the caretaker, thinks it’s important for the person to know, and sometimes, because they know the person so well, they think it’s not a good thing to do. And I said, in our case, we definitely made the right decision.

Lori Pinkerton-Rolet
And what do you think, have been the physical and emotional effects of this disease on you as the sole carer?

Nancy (carer)
You know, they creep up on you without your realising it. I’ve had two TIAs and had MRIs and so forth and had a brain scans and, and I’m fine. So my regular doctor and I have really reached the decision that this was caused by stress, which I didn’t realise, you know, could cause something like that. And I didn’t realise I guess that I was under that much stress. But I’m on, you know, slight medication to take that and nothing has happened since then. And I think I’m going to be okay, but that that was a surprise to me, because I’m basically a very healthy person emotionally. Emotionally, my emotions go all over the place, just as his illness goes all over the place. So my emotions are kind of in tune with what’s going on in his life.

Lori Pinkerton-Rolet
So the day and the way you’re going to feel is in no way controlled by you. In other words.

Nancy (carer)
Well, not totally. No, it’s mostly controlled by I can tell what kind of a day we’re going to have by just his demeanour. And I’ve learned the things that maybe this is the wrong terminology, but the things that set him off, and I’ve learned the things that are calming for him, he loves his home. So we try to spend as much time in his home as we can, although our doctor the his memory doctor has said, You need to get him out. You need to get him around people, you know, you need to change things from time to time for him to adjust to because this is life. And if you want him a part of your life and a part of what you’re doing, you know, he can’t just only sit in his home.

Lori Pinkerton-Rolet
Are these the sort of physical and emotional effects that you’ve witnessed in home care Sheridan, or are there other examples of things that you’ve seen?

Sheridan Cocker
Yeah, people often have a huge emotional…it has a huge emotional impact on many carers, many carers feel stressed. They feel guilt and they they often feel like grief as well grief for their relationship, grief for the companionship and the shift in dynamic relationships. It throws up lots of emotions. So yeah, and stress. Obviously, we know that stress has an impact on your physical well being as well as your mental well being. So obviously, part of my role is to work with carers on ways in which they can, you know, improve the physical and emotional impact of their caring role.

Lori Pinkerton-Rolet
Because presumably, if they’re not well in themselves, it’s going to be very difficult for them to look after the person with dementia.

Sheridan Cocker
Absolutely, very often most carers are providing care 24/7. And if you’re not getting, you know, any sort of rest, you’re sleeping well, there’s no time for yourself in any of that, then, you know, it takes its toll over time. And that can really be that can really cause burnout. So, you know, part of my role would be to look at options, in order for the carrier to have some time out. Some carriers feel guilty about that. And then that’s another thing that we have to work through in order for the carrier to see that in order to take care of the person they love, effectively, they have to prioritise their own health and well being too.

Lori Pinkerton-Rolet
Right. And we’ll get into in just a moment, what some, you know, different types of support might be available. Let’s take this discussion now into the actual home environment. I’m back in the United States with our carer Nancy. And in terms of modifications or adjustments that you’ve made to the physical environment in your home, can you in order to provide a safe environment as as a carer, can you tell our listeners some of the some of the interventions that you’ve introduced?

Nancy (carer)
Well, for example, we have every kind of walker or cane or anything that would help him because people with Alzheimer’s, one of the things that is a telltale sign is their balance is really not good at all. Their gait is not good when they walk they shuffle. There are so many things that I’ve learned since the onset of this disease. So I’ve gotten a number of things that have really helped him a great deal. And I’ve tried them all. He has three different kinds of walkers, the one he likes is so one that he can sit on, when he gets tired. There’s a break, he can put a break on if he feels unsure. He loves his cane, I got him the cane that has the four feet on the bottom because he feels secure with that he doesn’t use it properly. My sister is a physical therapist and has shown him how to use it. And as quickly as she shows him, he forgets, but it’s a crutch. And it’s come to be one of his best friends. So that helps him a lot. I got him an up Walker, because he leans a lot on the walker that has the seat thinking he would like it, he doesn’t like it. So it’s there. I was concerned about him getting up at night to go into the bathroom, because he’s unsteady, and he did fall once. And we had to have some tests done to make sure he was okay. The danger is that he doesn’t hit his head and get a brain bleed. So I got a mechanism that I can put underneath the mattress pad and there’s a cord that goes to an alarm, there’s either a loud alarm or a semi loud alarm. So that if he starts to get up, that goes off and I can hear him. I use that for a while. He absolutely hates it. So I have nightlights everywhere I have a nightlight in the bedroom, I have a nightlight in the bathroom, so that with his cane he can he wants to be that self sufficient. And I can’t take that away from him. So as long as that’s working, but I know the other is there when when necessary. In the shower, he’s was very, very unsteady. I have a grab bar that well I had actually had that put in some time ago for both of us. But I got a seat for him to sit in that has arms that he can comfortably sit there stay in the shower as long as he wants. I’m always in the bathroom with him when he’s taking the shower. So he safely gets in and he safely gets out. I try to keep foods on hand that are good for him. I make sure he has fruit every day. I’m trying to keep everything in his system as regular as possible. I like to get him out every day so that he doesn’t just sit in the house but gets out and you know gets in with people. That’s all I can think of at this point.

Lori Pinkerton-Rolet
What about things such as medicines and knives and other issues of of safety? Have you had to do any interventions along those lines?

Nancy (carer)
Well, we just did not that it’s necessary now. But a friend of ours put a mechanism in the drawer that has very sharp knives so that there’s a catch on it. He doesn’t go through it Now, but in the future, he might, there’s a cupboard in the kitchen where I keep all of the, the medicines and so forth, we also put something on that to prevent him from, at some point going in there and taking things, he’s very dependent upon me, I have something where I can put all the pills that he takes in the morning and at night, and also mine. But he depends on me to give them those, I can remember when he did it, but now I’m doing it.

Lori Pinkerton-Rolet
Sheridan, are there any modifications to a home environment which regularly come up, or what you particularly tend to advise?

Sheridan Cocker
There are, you know, like you alluded to earlier, you know, once you’ve met one person with dementia, you’ve met one person with dementia. So everybody is very different in the way they might develop. Dementia can affect all sorts of things such as human ability, your, the way you see things and, you know, a visual spatial, as well. So some of the expectations might not seem so obvious at first to us who can see the world without any cognitive impairment. So often, we might look at things like cups that contrast. So a really having a really solid colour, like a red coloured cup so that they can easily identify, oh, yeah, that’s my cup. And it just helps with fluid intake, we might look at places called the plates are just so that they can easily identify where their plate is, or where the food is on the plate, that sort of thing. There are things like grab rails and things like that, where that tends to be mobility might start to be affected. But it’s not something that you need to say all of what dementia must get grabbed by it as things progressed, you know, but then you can get, I would, I would mostly suggest that you get assessed by an occupational therapist for any sort of adaptations, and equipment, because they tend to be the experts on what’s available, and they can help you for the equipment as well.

Lori Pinkerton-Rolet
Fantastic advice. That makes a lot of sense. Now we’ll go to our final big question, and that is support. So we’re going to head back to the interview with Nancy, in terms of support for you, because obviously, whatever is supporting you ultimately becomes a support for him as you’re the sole carer. What if you could wave a magic wand? What sort of what would be the most helpful support for you personally?

Nancy (carer)
If my children live next door. That’s all.

Lori Pinkerton-Rolet
So if your family doesn’t live right near you, and you’re the sole carer what, what sorts of support? Is it? Is it talking to someone? Is it having a break? What sort of support if your family lived closer? Would you be asking of them that would make that would make life easier for you?

Nancy (carer)
Well, there are times when I need to get out of the house, and I need to make arrangements to have him with me, or make arrangements for someone to be with him. And of course, his children, I want them to have communication with him as long as they can. So that would be the main reason. But in the interim, thank goodness for FaceTime, and WhatsApp and all the mechanisms, Zoom and so forth, that make it possible that you can at least have that connection where you can see each other and talk to each other. And it’s good for him. And I’ve encouraged the children whenever they call as often as possible to try to have them so that he can see them. And to mention, Dad so that he remembers that, that they are his children and say their names and you know, say the things that that he can have a discussion with them about because anyone out there will discover that they don’t mean to but when people find out someone that as Alzheimer, they have a tendency to talk around the person instead of to the person. I’ve noticed that particularly as a friend came to visit, who spends a lot of time talking to him, including him, where he feels a part of and he’s very comfortable with that. He likes those kinds of people around that, that really take the time to want to know what He thinks, what he feels. And I’m not. I’m not saying anything derogatory about other people, you tread softly, because you don’t know most people don’t know how to deal with a person. But I want to have it as normal as possible. For as long as possible. I know, eventually, there’s nothing we’re going to be able to do. But I want to, I guess I want to hang on to the relationships that he has with the people that he’s loved so much as long as possible.

Lori Pinkerton-Rolet
If somebody were just getting a receiving a diagnosis now, and more likely to be a sole carer, what advice would you offer them?

Nancy (carer)
I would ask them to take all of the advice that they get from the memory care doctor, from their children, from their loved ones, from all family members, take all the advice that they give you. And then sift through it and know what you believe. Because you know, the, the person who has Alzheimer’s better than any one, sift through it all, use those things that you know, will work. And, you know, if you if you don’t think it’ll work, you don’t have to do it. Because as the very first thing that was said, as if you know, someone with dementia or Alzheimer’s, you know, one person with dementia or Alzheimer’s, they’re all different. And every day with a person with Alzheimer’s is different. No two days are alike. You have good days, you have bad days. Not when I say bad, you can handle it, you can handle it. But there are days when you are shocked. And you think, oh my goodness, I never thought of that. There’s going to be times when the person is going to hallucinate, they’re going to think people are in the house that aren’t, they’re going to wonder when someone’s coming back. They’re going to forget the names of people that they’ve known for 80 some years. On another day, they amaze you by the things that they remember, long term memory is going to stay. It’s the short term memory, loved ones come to visit. And the next day, he’s already forgotten that they’ve been there. You can tell him something, he or she in your case, you can tell them something, knowing that 10 minutes later, you’re going to have to there, he’s going to ask the same question. And you’re going to have to tell him again, you’re going to have to get used to repeating yourself over and over again. And try very, very hard not to let your tone of voice change because it’s exhausting. But try to keep the same light tone if you possibly can. Knowing sometimes if you lose it even just a little bit, it’s okay, because he’s gonna forget it 10 minutes later anyway.

Lori Pinkerton-Rolet
Well, that’s the end of our carer interview, Sheridan does the situation really sound all familiar to you, and what sort of kinds of support might be available to carers that they should look into, regardless of where they might be in the world?

Sheridan Cocker
Yeah, it’s really familiar. You know, there’s a lot of people out there that are reluctant to accept help. Sometimes it’s because they don’t necessarily realise that they’re needed support, they tend to take each day as it comes. And it tends to take a crisis of some sort for people to realise that things aren’t going quite as well as they thought. So, you know, I would urge people to reach out to friends and family, if they’re willing to offer support, you know, even if it’s just to give you an hour for you to collect your thoughts or to do something that you that you’re really interested in. You know, as things progress, you might want to consider what care options are available in your local area. Sometimes starting off with a, what we call a companionship or a befriending service just as a gentle way into the person accepting somebody else into their lives, that could be a really gentle introduction to possible increasing care in the future. I know in the UK, the local authority is statutory duty of care to people who are vulnerable in their community. So certainly in the UK, we we would urge people to contact the Adult Social Care Service. So, you know, getting assessments from relevant authorities could be really, really helpful because they’ll know what’s available locally as well to support you and your loved one. We might also look at things like daycare as an option for as a form of respite because many people are reluctant to send their loved one in for a long time. A respite. You know, daycare seems a lesser, a lesser call for some people with their feelings of guilt, the daycare can be a really good option because you know, this person, the person that you love is going to have activities throughout the day, get you know, a meal and get some care on top of that as well. So there’s a lot of different options that can be explored. And obviously, that’s what Admiral Nurses are here for. We explore those options with people and we’ll find people signpost, people to what we think might help them at that time. Because, you know, it’s all everything needs to be tailored to the individual weirdly. So obviously, that’s why Admiral Nurses, my advice. And people can obviously contact us through the helpline, or via our website, if they are looking for a closer to home clinic or anything like that.

Lori Pinkerton-Rolet
Thank you so much. And in other countries, there are similar sorts of services we’ve we’ve done research into this area, and you’d be hard pressed to find somebody listening to this, which wouldn’t have some of those options available to them. Sheridan, thank you so much for your really valuable insights into what is a very challenging area.

Sheridan Cocker
Yeah, absolutely. My pleasure.

Lori Pinkerton-Rolet
If you or someone you know finds themselves in this situation, look for support, it’s out there, make subtle changes to the home environment which might help Sheridan pointed out getting an occupational therapist perhaps to take a look. More importantly, please know that you’re not alone. I’m putting my cards on the table here. This is actually a love letter to my parents. You see, my mother is Nancy. TAD is sharing this because she is not alone. There are literally millions of Nancys. Get the support you need personally and adapt your environment as and when needed, knowing that others are here to help. I’m Lori Pinkerton-Rolet. Please join me next month when we’ll be back to our usual format, and my guest will be Melinda Avila-Torio, senior interior designer for THW Design and Interiors in the United States. The topic–The Evolution of Retirement and Care Design. She’s one expert you won’t want to miss…