Most people we interviewed described changes in their care recipient’s health over time. Few caregivers saw any improvement or stability in their care recipient’s condition. In general, the care recipients’ conditions deteriorated over time. Many caregivers described having to progressively make adjustments according to their care recipient’s changing needs.
Changing needs and capacities of the care recipient
Val said, “As Dave progressed and got sicker, he couldn’t do anything by himself; he was totally paralysed. I felt I needed more hours.” Elaine noticed her husband’s deterioration from illness as well: “Of course there’s changes and over the years. I have to do more and more of real caregiving, which I’m in now. But again, I’m very fortunate because he’s a positive man and so grateful.”
Caregivers sometimes noticed their loved one was getting worse because they would fall more often. Christine said, “It’s progressive. In the last two years, she fell at least six times in the house and hit her head at least four times. And that hasn’t helped her condition. She’s starting to lose her memory a little, and she was not able to walk at all up and down the steps.” Joanne said, “She’ll do things that aren’t safe, which drives me crazy.”
Several care recipients were mentally or cognitively affected by their illness. Sometimes this meant that their needs changed as well. Matsonia and Christiane both noticed that their husbands developed dementia as an effect of the Parkinson's disease. This was a significant moment, because they were no longer able to leave their husbands alone. Christiane said, "Then complications arose because the dementia set in. I could not leave him alone at all because he was smoking."
If you wish to read more about behavioural changes and the impact it had on the caregivers, you can visit page Effects of the care recipients' behaviour.
Losses over time
Several caregivers describe the physical deterioration of the care recipient over time. Shayna said, "He had the kind of MS that progressed steadily but slowly. And so, over the 25 years he went from using a cane, to using crutches, to being in a wheelchair." Several caregivers described how they had to deal with gradual losses over time instead of experiencing a single loss. For some caregivers, it was hard to predict what would happen next. Christiane, for example said, "You lose a bit, then a bit more, then a little bit more and more. He gets worse."
For many caregivers, it is difficult to watch the care recipient lose their physical and/or mental capacities. Some caregivers described how the care recipient fought against the symptoms of their illness, and describe how difficult it is to see their loved one suffer. Fernanda said, "It's tough to watch the person you love with all your heart, and you'd do anything for, being in pain 24/7."
Sometimes it came to a point where the caregivers decided that they could no longer take care of their care recipient at home (for more, please see Hospitals and Facilities).
Several caregivers spoke about side effects from medications. They tried to respond to these problems as fast as they could, sometimes changing medication in order to prevent certain effects. It is recommended to always check with the health care professionals before making any changes in medication.
For example, Matsonia's husband's symptoms of dementia became much worse when he had a bladder infection. So, she tried to find a way to detect a bladder infection on her own, so he could be treated sooner: "So, I went to about three different pharmacies and finally a pharmacy helped. A pharmacist helped me out and he researched, and he got these little sticks." Now she is able to detect his infections and get treatment much sooner.
Effects on caregiver's life and health
There is a separate topic page that describes how the caregiving has affected the caregivers' lives. Please visit the section Impact on the Caregiver if you would like to read more about this.
The care recipient of six of the people we interviewed had passed away. Several other caregivers spoke about end-of-life issues that affected them.
Several caregivers spoke about how the caregiving experience seemed to stay with them after their loved one had passed away. Shayna said, "It comes from 25 years of caregiving, my body is always on. I cannot—my husband is gone seven years—I cannot shut off the phone at night. I always have to be available." Kai said, "I keep thinking back, like, I'm still looking after dad: 'Oh man, I forgot to turn on the dialysis machine!' Once or twice I'll catch myself doing that."
Some caregivers spoke about the feeling of relief they felt once the care recipient passed away. Shayna said, "I think if you're a long-term caregiver when your spouse passes away, the first thing you will feel is relief. And then, you'll feel guilty for the rest of your life for that relief that you felt."