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Practical Insights for Busy Caregivers

Adjusting to changes in family relationships

When someone close to you has a health condition, it changes the relationship you have with that person. The changes may be subtle, or they may be dramatic.

Eileen Cunningham

"Not that I could have changed it. And, you know what, I don’t know that I would want to have changed it, because it’s what it was and it was real. " - Eileen Cunningham, caregiver

video (59 sec)
transcript

I don’t know if you ever read the book, 5 Things to Discover Before You Die. Did you read that book? Very good. And I would recommend anyone who… And it’s not a religious book, it’s a little kind of spiritual, but I would recommend that book to anyone who is thinking about the future and their relationship and life, because it really, really focuses on these five issues. If I can remember them, I’ll tell you what they are. One of them is be yourself, be who you are. Be love. Have no regrets. Give back more than you get, more than you receive. And live life in the moment. So, I’m not plagiarizing the advice, but I think, having read the book after the fact, it crystalized what I feel about what happened with our relationship. Not that I could have changed it. And, you know what, I don’t know that I would want to have changed it, because it’s what it was and it was real. And in many ways it probably brought us closer together than before, although it was different, but it brought us very, very close. If I have any regrets about it was that Michael was not conscious for quite a few days, quite a few days before he passed away. So, there were some conversations that we weren’t able to have.

Kristina McLaughlin

"They’re thinking, “I’m going to be the caregiver,” and not thinking about being the husband, the wife, the daughter, the son, the cousin, the friend" - Kristina McLaughlin, care coordinator

video (49 sec)
transcript

And they’re thinking, “I’m going to be the caregiver,” and not thinking about being the husband, the wife, the daughter, the son, the cousin, the friend. They’re not thinking about any of those things. They just want to do what is being asked. So, again, it comes back to reflecting on about how’s your relationship been. What are those things that brought you joy? What are those things that you loved to do? Or what are those everyday routine things that you always did? And how are things going to change? And remember that those are the things that make you who you are to that person. And how do you build those things in or keep them in there? Oftentimes, people feel like they’re charged with a huge responsibility, caring for their loved one, and they wonder why things don’t feel so great. It’s because they don’t have any of those normal experiences in their day.

Louise Milligan

"While Gord was living at home, my children became parents in some ways." - Louise Milligan, caregiver

video (47 sec)
transcript

While Gord was living at home, my children became parents in some ways. They were constantly watching out for him. I often think of little meerkats… if you ever go to the zoo and see meerkats. They’re constantly looking like this. That’s what they became. Little meerkats. Constantly vigilant. Constantly wondering. Where’s Dad? What’s Dad up to? And when Dad would do weird things. Like he’d go in the swimming pool with his clothes on. That was weird. And that’s when I became… realized that it’s too hard for them. They shouldn’t be, at that young age, having that role. So that was another thing that prompted me to think about maybe moving him out sooner rather than later. So that could have a place where they felt safe and comfortable. Which should be their home. And they weren’t feeling particularly safe or comfortable because of the strange behaviours of Dad.

Nanette Lloyd

"Before she even moved here, we made the decision to sit down as a family unit" - Nanette Lloyd, caregiver

video (1 min 9 sec)
transcript

So, probably before she even moved here, we made the decision to sit down as a family unit and decide, “Is this what we want to do?” So, at the time I had… my husband and I had two children about three and seven. So, they were all excited, of course, to have their mum-mum come and stay with us. We had to explain what was happening. We… I sat down with them and laid a puzzle out on the table and said, “Okay. This is what… your grandma is not well, but it’s not a physical thing where she won’t be able to walk and stuff. Instead, her illness is affecting how she’s thinking, her mental capacity. So, they were with me on that. And so what I did was started taking pieces of the puzzle away. “So, when this comes away in her brain, when this is affected, this is how she will behave.” So, we went through that whole scenario.

Cheryl

"So, I’m playing all these roles. And some of them are protective, and some of them are more like aggressive and assertive – try to get the care she needs." - Cheryl, caregiver

video (39 sec)
transcript

Like I have to do this myself because I am that trusted person… at times. And so, I have to take care of my family by myself, and I have to take care of her by myself, and I have to take care of myself. So, I’m playing all these roles. And some of them are protective, and some of them are more like aggressive and assertive – try to get the care she needs. And some of them are kind of like I need to step back and let her sort through this. Or push. But when to know how to do all those roles is… is, I don’t know. I’m guessing.

Louise Milligan

"We were very much life partners, you know. And that was really hard to lose that." - Louise Milligan, caregiver

video (49 sec)
transcript

That’s hard, because my husband was my life partner. We were partners in many ways. We met through work. We worked together. We published papers together. We travelled together. We raised children together. So we were very much life partners, you know. And that was really hard to lose that. And that was a gradual loss. Because we discussed everything in terms of what was on our mind. We would discuss challenges we were having at work. We would discuss challenges or decisions we’d have to make regarding … and having to interact with the children for some reason or t’other. And gradually that ability for him to communicate disappeared. So that for me was really, really hard.

Nanette Lloyd

"When you have children, don’t hide anything" - Nanette Lloyd, caregiver

video (1 min 27 sec)
transcript

Oh, when you have children, don’t hide anything. Children are so perceptive. I have seen children who were afraid to see older people, afraid to see seniors, afraid to go to a nursing home. Where people will say, “Oh, they won’t go to the nursing home to see their granddad because they’re just afraid.” And I think it’s because everything’s held a secret. And dementia can seem pretty frightening. And I think it would be very confusing for children. The best thing you can do – the same to any adult – is be just totally honest. It can all be put in a very simple way. And I think as long as the lines are left open, that you communicate all the time. What we did is that every three months – unless we had a one-on-one conversation before that – we would sit down as… our group of four… our family… and we would all say, “How are we doing?” I’d say to our son, you know, “How are you doing?” and to our daughter. And particularly my husband and myself ‘cause the big thing it can cause a lot of stress. And it can cause a lot of… issues if people aren’t up front about what they’re feeling. And how they’re coping.

Kristina McLaughlin

"I meet with a lot of people who say, “I can’t ask for help because it’s my job."" - Kristina McLaughlin, care coordinator

video (33 sec)
transcript

I meet with a lot of people who say, “I can’t ask for help because it’s my job. I decided to marry this person. This is my job. I am a daughter. This is my job. I have to do it.” And what I hear when I hear that is that there’s a lot of guilt and there’s a lot of shame and a lot of, just, discomfort with what they perceive they need to do. And there isn’t a lot of support that they’re feeling. They feel it needs to be a one-man job.

Louise Milligan

"He recognized that, “This is going to be really hard for you and the girls. You need to make whatever decisions are necessary for your life to move forward.”" - Louise Milligan, caregiver

video (1 min 19 sec)
transcript

After Gord received his diagnosis of dementia, we went and had some coffee. Because we were both shaken. And we talked a bit. And Gord’s mother had been through a dementia and died. It wasn’t clear if it was Alzheimer’s or another type of dementia. It doesn’t really matter. He was aware, very aware of what this journey might look like ‘cause he had been through it with his mom. And one of the things we talked about at that coffee – and I remember, it’s like etched in my mind – was what our future might look like. And one of the things he said to me… and he recognized that, “This is going to be really hard for you and the girls. You need to make whatever decisions are necessary for your life to move forward.” So, he kind of gave me permission to make those tough, tough choices on his behalf.

Eileen Cunningham

"If there are important things that need to be said, make sure you say them" - Eileen Cunningham, caregiver

video (14 sec)
transcript

And it depends upon what kind of relationship you have with your partner. If there are important things that need to be said, make sure you say them when you have the capacity because you don’t get a second chance.

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