Keiro interviewed caregivers about their experiences providing care for loved ones under various circumstances. These interviews are shared anonymously, so that those we spoke with could feel free to openly touch on more personal or difficult aspects of their experiences. The testimonies in this article are from two people who have cared for older adults with Alzheimer’s disease.
Can you please explain a little about your caregiving situation?
May: I care for my mom who is 96 and has Alzheimer’s. My father died 30 years ago, and since then she has relied on me as I’m pretty much her only blood relative. Starting about three and a half years ago, I’ve gradually taken over everything with her finances, her caregiving situation, everything. She lives in her own home, and I’ve hired a 24/7 in-home caregiver to provide her care. I also spend two afternoons a week with her, and she comes over to my place every Sunday.
Gianna: I was a caregiver for both of my parents who are now deceased, and my mother had Alzheimer’s. Especially when we realized my mom’s memory was starting to fade, my siblings and I really became more involved with caregiving for them. My sister and I probably took the bulk of this — my sister’s a pharmacist, so she took care of the medications, and I would take care of doing the bills. Then after my father passed away, we hired in-home caregivers to be with my mother full-time.
What was your experience like finding caregiving support for your parent with Alzheimer’s/dementia?
May: Figuring out the caregiving situation was pretty challenging, as my mother wouldn’t acknowledge that she needed any help. My mother has a very strong personality, and our best option was for her to be in her own home. I finally found a full-time in-home caregiver who my mom took to and that was a huge piece of luck. The in-home caregiver has a lot of experience, so she can tell me when it’s time to order the hospital bed, or a seat for the shower, things like that. It’s taken us about three and a half years to get here, but at this point my mom really seems comfortable and very calm.
Gianna: Between my four siblings and the grandchildren, we took shifts to provide my mom 24-hour care after my father passed. We did that for about three months, but we were exhausted, and my mom was getting really angry — because she couldn’t remember that my father died. As her dementia got worse, she even started accusing my sister of stealing from her when she forgot where she left things. We eventually agreed we needed to hire 24/7 caregiving from an agency. My mom ended up loving her in-home caregivers, which we didn’t think was going to happen. We had this assumption that she would just reject it, but one of them could speak Japanese, and that was a lot of comfort for my mom. She actually said she felt relieved that she wasn’t burdening all of us.
What advice would you give to others caregiving for a loved one with Alzheimer’s/dementia?
May: If you perceive any shift in your parents’ behavior, you really have to understand that it’s the disease, it’s not the parent. Earlier on, I was trying to get my mom to take action to combat some loneliness and social isolation, but she kept refusing. I sort of thought ‘Ok, well she doesn’t want to help herself’ — but I think, actually, the disease was making it harder for her to make connections with new people.
Gianna: I think a big thing is asking other people to help you. Don’t think that you have to do all of it yourself. We switched my mom over to a geriatrician and that really was helpful. In the geriatrician, we had a doctor who understood dementia completely, who knew how to talk to her, and who we could call if she had a bad day. He also helped us see that she should get some mental health counseling. We took her to somebody who knew how to talk to people with dementia and found out how my mom was really grieving after my dad’s passing.
What has been the biggest challenge for you, and what has helped you overcome the hard times?
May: My mother was extremely intelligent. She had a professional career, was very worldly and computer-literate, so to see that disappear is just incredibly hard. From a practical standpoint, it was difficult for her to let go of doing anything. I wrote five-page, single-spaced instructions on how to play a DVD on her TV, things like that. It was hard to watch her kind of lose that struggle over time.
However, my husband has been with me on this journey every step of the way. He’s the best of them. And all of my good friends are so gracious — they let me talk about my mom, and they’re like, ‘Bring her over, of course we understand!’ So I think I’ve been very lucky in that way, too. They’re just very nice and very supportive about it. That’s what friends are for, right?
Gianna: The hardest part of this experience was my mom yelling at me. As much as you want to say you understand this disease, you’re just human, and it’s hard not to react. That was another reason why we went through an in-home caregiver. Once we could take that step back, I could just take my mom to eat, to reminisce. I’d get stories, because she still had long-term memory. For example, my mom suddenly came out and talked about how traumatic internment camp was for her. I started to really understand the experience that my mom went through and I realized, ok, you can have some beauty and some joy in this.
That’s what caregiving is, right? There are some really beautiful parts to it, and then there are some really painful parts. I don’t think anybody who is a caregiver will tell you that it’s all fun, because it’s not. But I have a lot more perspective about my parents now. At some point we have to say, ‘Ok, we did our best’ — because it’s stressful. We were trying our best; I think that’s all you can do.