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Practical Insights for Busy Caregivers

Looking after someone with dementia

You can’t do it by yourself. It’s too big, and no one’s that strong.

Louise Milligan

"When my husband moved into long-term care, it was very traumatic, and I didn’t appreciate till after the fact how much it had hit me." - Louise Milligan, caregiver

video (1 min 1 sec)
transcript

When my husband moved into long-term care, it was very traumatic, and I didn’t appreciate till after the fact how much it had hit me. He… because he was young and nothing else wrong with him, other than dementia, he was an unusual resident. Most people there had many other health issues and were much older. So, part of the challenge that we faced was the staff were unsure of who he was, what he was capable of, and were a bit leery of him. Would he act out? And potential violent behaviours. And there were a few challenges along those lines. Responsive behaviours. One of those landed him on a Form 1 down at Vic Hospital, and that unnerved me. And at one point, he was put on antipsychotics. He developed a neuroleptic malignant syndrome, which happens in about 10% of people who go on these antipsychotics. That landed him in the hospital for about a week or so, pushed him further down the path of dementia. There were more police involvement…

Madeleine Roske

"I think in his own mind he knew something was badly wrong." - Madeleine Roske, caregiver

video (2 min 23 sec)
transcript

Well, I think… everyone’s different… but when he was at the stage where he was undiagnosed, he was… I think in his own mind he knew something was badly wrong. And he responded in different ways that were difficult for me. But then he was diagnosed. There was a “label,” and he began day program, and his personality changed, and he became a happy person again. So, he went from being a steady kind of… not a person who went up and down emotion-wise. He was a steady person. And then he went through the bad… what I call the difficult stage before we knew what was wrong. And that lasted a number of years. And you’re reluctant to think, “my husband’s going mad,” but you know there’s something wrong. But it takes sometimes years before that really becomes apparent as to what the problem really is. And then… so, when they go through testing and they’re diagnosed, it’s like a relief because… And then too you can speak about it more openly. During what I call the difficult time, it wasn’t things you’d go around talking about, or saying… Once the diagnosis is there and there’s no doubt about it, it’s quite easy to say, “My husband has dementia.” There was an article in The Focus this week about the stigma. I don’t find that at all. If you say to someone that so-and-so has dementia, the response again is usually one of a sort of kind concern. That’s been my experience. And I have no qualms about telling people that Arno has dementia. It’s… I don’t find that stigma at all.

Jim

"There’s mainly two words that I keep in mind: patience and tone of voice. Well, that’s more than two words, but patience and tone of voice." - Jim, caregiver

video (1 min 29 sec)
transcript

I mentioned that there’s mainly two words that I keep in mind: patience and tone of voice. Well, that’s more than two words, but patience and tone of voice. And I’ve… you know, in the back of my mind too, you don’t argue with them, you try and change the subject. You know, I think there’s a list of ten, but you can’t be thinking of ten all the time, so… Patience: you know that you’re going to get the same question – or maybe some people don’t know – you’re going to get the same question time and time and time again. And you can’t say, “Well, I’ve told you that five times.” You know, you just be patient, watch your tone of voice because it’s amazing how they can pick up something in your tone, just in your tone. “Are you angry at me?” or “Why’d you say it that way?” or… It’s really interesting. And it’s… People with dementia, you know, they’ve got it, and there’s not a whole lot you can do to change that. And really when it comes down to the caregiver, it’s the caregiver that, I think, has to change in some way, whether it’s being more patient or being… watching your tone of voice. Or where you’ve been argumentative in the past, don’t… you know, you just can’t do that. Because it’s not going to get you anywhere.

Louise Milligan

"Part of that was talking to other people who had been on the journey and had experience with long-term care" - Louise Milligan, caregiver

video (52 sec)
transcript

Well, part of that was talking to other people who had been on the journey and had experience with long-term care. And I met people through the Alzheimer Society with that. Plus, I had a good friend whose mother had gone… was going through similar things. And we had a good talk about, “Louise, you can just go in there. You are paying these people, right? They are professionals. So that you need to set some boundaries.” And I didn’t realize that I could. And once I understood, and I had control over setting boundaries, then that was very helpful. So, people I knew, the Alzheimer Society, and their experiences were a tremendous help for me for what I do and what I don’t have control over. And what I wanted to have control over.

Madeleine Roske

"When you’re living with someone with dementia, and over the months and years you see changes, you wonder at what point will I not be able to continue doing this. " - Madeleine Roske, caregiver

video (1 min 20 sec)
transcript

I think that when you’re living with someone with dementia, and over the months and years you see changes, you wonder at what point will I not be able to continue doing this. And I don’t think you know until you – that’s what I found anyway – you don’t know until you arrive at that point. Because there were points in the past when I thought, oh, I couldn’t deal with this. But you do. So, you carry on and, as I say, I think you’ll get a sense when the time – and it may not come – when you might have to really seriously investigate long-term care. But my hope is – and it’s the unknown you face – I don’t know. That’s my simple answer. I really don’t know. But I also have a certain amount of faith now in the system. We have a case coordinator, we have the people at the day care who see Arno often enough to really know him. And they notice the changes, so that again, when the system works together, it’s good.

Jim

"You often hear that if you’ve seen one person with dementia, you’ve seen one person with dementia" - Jim, caregiver

video (36 sec)
transcript

And like all these things, like I say, I sound positive about it, but I realize… Like you often hear that if you’ve seen one person with dementia, you’ve seen one person with dementia. And in the support group, say with the twenty people, you’d go around, and each one has something positive or negative to say that’s different from the person beside them. And that’s something… one of the reasons I like the support group is that, “Oh yeah, that’s what I do” or “That’s what I don’t do and maybe I should do that…” So… they’re really good…

Jim

"There’s lots of stuff, lots of good resources out there, and it’s a case of making contact." - Jim, caregiver

video (27 sec)
transcript

But there’s lots of stuff, lots of good resources out there, and it’s a case of making contact. And, you know, if you feel like you’re… if you can’t get out or you’re feeling you have to stay home with your spouse, you know, that’s difficult. You really need someone to say – which happens in these support groups – “Have you done this? Have you done this?” And a couple of times, I said, “No. Give me the name. Who do I contact?”

Louise Milligan

"Part of the challenge there is that dementia manifests itself so very differently in everybody." - Louise Milligan, caregiver

video (1 min 1 sec)
transcript

I would say, you know, as a caregiver, it’s the hardest thing you’ll ever doing in your life, care for someone with dementia. Part of the challenge there is that dementia manifests itself so very differently in everybody. There are certain common things that will happen, but there are things that will be unique. And that’s unpredictable, and that makes it very hard. Because you never know any day what you’re going to be seeing. Self-care in that kind of circumstance is really hard, but it’s really important to get respite, if you can, either by calling upon the members of your family to care or looking for respite through long-term care homes or whatever opportunities you have. Because you can’t do it all of the time. You need to find a way to step away, to go out for a movie with a friend or, you know, whatever it is you like to do, even if it’s just getting out for a long walk on your own. Because you can’t do it by yourself. You can’t do it by yourself. It’s too big, and no one’s that strong. And no one should have to be that strong. So, ask for help.

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