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.
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.
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 has never been like that before. His prejudice is a new issue for Christiane to deal with.
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".
Shayna and Marlyn both noticed how their husband became so focused on their own needs and forgot about their wives'.
Behaviour towards caregiver
Some caregivers were challenged by the 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.
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".