Most caregivers noticed behavioural changes in the care recipient over time, either due to the illness or the usual process of ageing. In some cases, watching their care recipient learn to live with their illness was a learning experience for the caregivers. Many caregivers, though, found it challenging to deal with these changes.
It’s another life. You always hear of people, you always hear of people taking care of their parents or their sick children or anything—that it’s everybody else.
Dependence of the care recipient for help
Like Fernanda, other caregivers were also challenged by how reluctant the care recipient was to accept outside help. Joanne, for example, said, "[…] To give you a concrete example, we're still on a waiting list for some of those things (home care) and this week there was a phone call from someone from that establishment who called my mom to say that there was a space for help with a shower once a week. And my mom said, 'No, no, no. My daughter does that for me.' And I just wanted to scream because maybe you don't feel that way, but think about me." Similarly, Anne's husband hates it when she leaves for holidays and throws fits when she does. Still, she did go for a holiday despite his objections.
For some caregivers, it was a challenge to find a reasonable balance between what their care recipient wanted, and the support they thought their care recipient should have.
She’s in a disabled suite that’s outfitted for someone who is sort of mildly disabled, but not someone who is getting more and more increasingly disabled with time as she is. So it’s not necessarily the safest space for her. And assisted living comes up, and comes up, and comes up, and she’s terrified of it and wants nothing to do with it.
I’ve been very frustrated with him because he has this very stubbornness that he was going to keep on climbing ladders. He was going to keep doing projects when I felt that he shouldn’t be doing this, that it was too dangerous. And it was always my perception over his. And then I’d get mad because he was still going to do it anyway.
Christiane's husband has been affected in such a way that he is now refusing to receive help from certain types of people even though he was never been like that before. His prejudice is a new issue for Christiane to deal with.
Like now, he didn't like it yesterday when there was a new person, because he doesn't remember who came and who will come. Because he is not allowed... Blocks of 4 to 8 hours. It costs $15 for an 8-hour day; you leave at 12 p.m., you come back at 8 p.m. You have to be back for 8 p.m., it can be in the morning up to... whatever. He didn't remember, that is why he didn't want to have supper.
Behaviour towards illness
For some caregivers it has been hard to deal with a care recipient who was either in denial about their illness or being too optimistic about the future. For the Smiths, it was slightly different; as Mrs. Smith described, they were struggling with her mother's wish to die: "When the person who is receiving care is not in a good mood, you're not in a good mood".
It's a hard thing, because he wants to keep things sort of as normal as possible. For instance, we've got a truck sitting out there. I would sell the truck. I mean, he's not driving, can't drive, but he has a fit if I suggest selling the truck because that's, because he wants to hang onto that as a possibility. We have an RV sitting over here that's going to deteriorate if it sits there much longer. But again, if I suggest selling it because we're not going to be using it, you know. So, I mean, so far I've just let that stuff go and not pushed it because I guess you have to hang on. It's funny I mean, because the kids and I are, we're both totally at accepting of the situation that I don't think he can—well my son, my youngest son, figures he's going to die in the next couple of months. And so, we're, the kids and I, are very realistic about the future. And probably my husband is the least realistic about the future, but maybe that's normal. But it's sometimes hard to deal with because we're almost at a different place than he is, and wanting to move on with certain things that he's not ready to move on with. And that sometimes causes conflict.
It would be the caregiving. It would be more to do with how my husband, the patient, reacts. To deal with people in denial, how to deal with aggressive behaviour—they’re not mad at you they’re just mad—anger issues, sometimes you don’t always know what they are. When someone snaps at you, you just say, “Don’t snap at me!” But you think, “Okay, so you’re angry.
Shayna and Marlyn both noticed how their husband became so focused on their own needs and forgot about their wives'.
Well first to the ill person, okay, I believe in giving if they can. I’m not talking about dementia, but if the person is cognitively okay, realize what’s going on around you. Realize that there’s a need there as well. I remember I once had the flu and my husband said—and we had a good relationship—and he said “Don’t worry, I’ll manage dinner on my own.” And I wanted to say “Thanks. I’d like a little soup.” Some “I’m here! Hello!” But that’s what happens. So first and foremost, the spouse needs to take responsibility for the caregiver. It could be as simple as making sure there are flowers delivered once in a while if you’re able to make a phone call. That would make a tremendous difference. Saying “thank you”, saying “I’m sorry”, not even for things. […] You don’t have to be sorry for the illness but you could be sorry for what your spouse is going through. Just, there’s so many things that a well spouse goes through that a spouse can just appreciate, to recognize and just appreciate.
I think that’s one of the biggest problems, because the person you’re caring for wants to remain independent as long as possible, and in their mind, independence includes the spouse helping them, right. They’re still independent even though the spouse might be almost lifting them. Having to move to somebody else coming in to do that is a big leap for them. And so, they keep wanting you to help them do all these things, and they seem to lose the ability to think about the other person. And this is something that I think is really important for anybody who isn’t a caregiver—or even people who are caregivers—to realize that that happens. Because I went through the same thing with my mother who had Parkinson’s. And people who become disabled seem to, I suppose, they have to focus in so much on their own needs and what they have to do to function that they cease to be able to see the impact they’re having on the people around them. So it’s very important for caregivers [that] they have to be the one looking after their own needs. And they have to be aware that the person who may be from many, many, many years would have been very considerate of them and concerned about their well being is now unable to think that way, to see that way. They’re so focused on how they’re going to do something and trying to accomplish it that their mind just doesn’t seem to be thinking beyond to “you really shouldn’t be doing this.”
I remember one of the last times I tried to help him was he needed to get off the toilet and he just couldn’t. He couldn’t stand. And so, I was helping as usual, but at one point he said, “I keep telling you! I keep telling you, you’ve got to lift me!” Well he’s 185-190 lbs man. How am I supposed to lift a 185-190 lb man who can’t help? Right, you’re trying to lift that kind of dead weight. And it never crossed his mind that this was an unreasonable request to make. And I think that’s something that outsiders would be completely unaware of, especially if they’ve known the person all their life and they say, “Oh, he’s very understanding, very concerned, very considerate of his wife’s well being.” And if you talked to them about it, they would probably say that. But at the time that they need help, they’re totally focused on the help they need, and they seem to stop thinking about what the impact might be on the caregiver.
Behaviour towards caregiver
Some caregivers were challenged by care recipient in ways that affected their well-being. For example, Alyce and Shoshana both have husbands who are cognitively or mentally affected by their illness, and have both experienced episodes of verbal abuse.
When my husband used to have an anger issue, it would build up for a couple of days and you could see it happening. It would build up and then he’d blow up. He was—mental abuse, I’d call it. Nothing else. Nothing physical or anything like that. Now he is, he just blows up at you. You don’t know if you said the right thing or the wrong thing.
With his symptoms come behavioural issues. For someone who used to be very patient and very easy going, [he] is not anymore. That’s really hard to deal with because of the short temper, the anger that has changed over the years. And of course I would be the brunt of that. He would criticize, if we had someone here, he would criticize something I might have done. Lately what it is is I’m not doing things the way he would do things. And it’s like, “Big deal, right?” Like, it’s not a big deal. But it is to him. I don’t word sentences the way he would word them. He’ll say, “Like, you mean this.” And I say, “No, I mean what I said originally,” because I’m not wording it the way he would word it, and these are little things but this is what it’s coming to. And he will criticize things when there are people here, and that’s very embarrassing for me.
I was going through a really bad time with the illness. That was a lot of verbal abuse. There was no physical abuse or anything, but verbal, and it wears you down. It depresses you. So I had—I don’t remember who suggested us to contact the MS Society. So I did, and I found that there was a support group for wives whose husbands have MS. And so, I attended one session one evening, and these women were all further along in their illnesses with their husbands. They were, most of them were quite a bit older than me as well, and I was in the newer stages of it. I was very, very depressed, and if I can give a visual… I don’t know how to swim. I remember the feeling of being in water and that thing about going down 3 times, coming up, going down, and the third time you don’t come up again. And I really felt like I was drowning. I felt… like, I was terrified of drowning—water—because I can’t swim and I have no control.
Incidentally, all three of those drugs, we’ve had a terrible experience with because it gave him hypersexuality. And that’s hard because it, it really hurt me, it hurt our relationship, it hurt our reputations, because with this hypersexuality that he had, it didn’t dawn on us that that’s what was going on until five years ago.
Effects of behaviour
How a care recipient behaves can have a big effect on the caregiver. Anne said, "I think all people who are chronically ill eventually get really miserable and can't deal with it because they're in pain all the time. And I understand this point, but I think after that, you kind of distance yourself from him emotionally because you can't take it anymore."
Caregivers' health is also affected by social isolation. In fact, Christiane also feels isolated because of her husband's lack of social interaction at home; he hardly even speaks to her anymore.
Donovan was frustrated with trying to find the patience to wait for his wife to express herself, although some days, he said, are easier than others. Joanne said, "[…] because sometimes when I tell my mom I'm going for a walk: 'Oh, you're so lucky. I can't walk anymore.' I just say 'I'm out. I'll be back in an hour.' So I stopped feeling twisted up about it. I just do it."
Hélène took behaviour changes personally at first, but later realized what was happening. She adjusted her own response to not feel guilty for being able to go for a walk. Likewise, Fernanda said, "To the care recipient, don't ever think that that caregiver is not going through a lot themselves. That it is awful , having to watch the person you love suffer. And it kills you inside because it has killed me slowly."
Several caregivers spoke about the positive way their care recipient dealt with their illness. Rowdyneko, for example, described her husband as the most unselfish patient you could ever meet. Others spoke about their care recipient`s positive attitude, or how well the care recipient handles the situation. Kai is very grateful that his father took the time to make video messages for his grand children before he passed away. Daphne described her father as "a gentle brave patient".
That's about it, I journeyed for six years. I met my spouse and the years went by with him who is a willful person, who is someone that will not be stopped by his dreams, who will take the necessary measures whatever how long it takes him, someone who is determined. Therefore, if you are asking what I get from this person through the 30 years, it's someone... I am already emotional.