An Alzheimer’s caregiving review
As I mentioned previously, we recently became primary caregivers for my mother-in-law, who has Alzheimer’s. She stayed with us for five weeks while her husband recuperated from a broken hip. They both returned home late last week. With upcoming home care aides and extra visits from family, they are together in their home again.
Five weeks was enough time to give me a strong appreciation of both the severity of this disease, and the crucial role caregivers can play. Here are my overall thoughts, which I am sharing in the event they will help someone else dealing with the same thing.
Being always alert:
Caregiving requires non-stop attention to the person with dementia. I had to constantly watch what she had in her hands when she left the room. One night I wanted to put music on with dinner, and searched all over the place for the remote control. After dinner was done and dishes washed, it was found tucked away in her room. I would bring home a magazine or newspaper and before I knew it, it was stuck in a pile somewhere. She would dry dishes and then put them wherever she thought best so kitchen items turned up in the strangest places. But of course, even more important, I had to watch her! Several times she went stomping outside and down the front stairs, determined to see her husband. We found the inside light on in the car because she went in there for some reason and didn’t close the door. She would leave the room with her TV ears and we got adept at grabbing the ears to recharge them so they’d be ready when she needed them again. It was a constant job to keep an eye on her and her belongings.
Being ready to lie
I would not have ever believed I would ever say this, but it was sometimes necessary to lie to my mother-in-law. I’ve always been a huge proponent of telling the truth. It pained me to make a conscious decision to say something untruthful, but it was simply necessary at times. She got incredibly anxious when she found out she had been in my house for four weeks, for example. She couldn’t even remember one of the days and when she realized she’d been there for nearly 30, she just couldn’t deal with the truth of her memory loss. So we started saying she’d only been there a few days. It made her much calmer. We also had to tell her she would see her husband the following day, even though we knew she wouldn’t. She had a terrible time when visiting him, or more specifically, when leaving him after a visit. Temper tantrums, screaming, yelling, trying to get out of the car – the works. So with his permission, we only brought her a few times a week. But we would tell her she would see him the next day, and we would say she just saw him earlier that day. She didn’t remember the facts, and it calmed her down, so we did what we had to do.
Ahhh, the importance of patience cannot be overstated. My mother-in-law could ask the same question a hundred times a day. I don’t know anyone who can answer the same thing patiently all day long. I had to come up with other ways to solve this. For example, the caregivers who came to the house would wear name tags which my mother-in-law appreciated. She would be able to “remember” their name by just looking at them and wouldn’t continually ask who they were. I put signs on the doors of the rooms in the house. “Bathroom,” for example, led her to the right room when needed. I would present her with a piece of paper in the morning that started with “Today is Wednesday, October 19, 2016” and then included the main things she asked all day such as where she was and who I was. Then depending on where her mind went that day, we would add other things, and so would she. When she asked where she was for the 50th time, I would calmly point to the paper that she had put in her pocket and tell her all the information she wanted was on that paper. Then she would take it out and read it, again, and I would maintain my sense of equanimity for another moment.
Being open to help
This is incredibly important for a caregiver. I know there are people who single handedly provide care for a person with Alzheimer’s or other dementia, and seem to be able to carry the full load. But I think those people are in the minority. I know I couldn’t do it. Especially since the rest of my life was taking a back seat and I had to be able to get some work done as well as household errands. I also wanted to do at least something for my own sanity. Luckily, my mother-in-law had an insurance policy that would help pay for care. With that, we were able to get someone in the house for about 5 hours a day on most work days. It did help me manage the rest of my life to some extent, but the situation was still difficult. Especially when the caregiver of the day got sick and there was no backup! If I were in a position where this would last a lot longer than it did, I would have to make arrangements with someone to come give me a more significant break. Maybe longer hours during the week, or help on the weekend as well. It wasn’t good for my mother-in-law to have to go to the store because the entire thing made her too anxious. Help is a requirement!
As with children, a routine seems to help people with Alzheimer’s. If every day starts with a shower, then I think it’s important to continue to do that daily. Keeping things relatively stable can help reduce anxious moments somewhat. However, that being said, remaining flexible is a must. There was the day I had a bunch of plans during the day, and 20 minutes before my help was showing up, I received a call that the aide was sick, and sorry, no one was going to come. I had to change all my plans and just go with the flow. There were times I wanted to get to the store and back in a certain amount of time so I would be available for something else (i.e., work call). Having to bring my mother-in-law with me meant extra time to ensure she went to the bathroom before we left. I had to make sure she had the right clothes on and help buttoning/zipping everything. She had to find her pocketbook and get her shoes on properly. Then there was the one inch a minute walk to the car, and the same thing on the other end. Plus all the stopping to ask questions about where we were and whether she had been there before and what road were we on and…. Well, let’s just say something that would have been a 15 minutes trip could take more than double that. So being flexible with EVERYTHING is a critical skill.
The more I talk to people about this recent experience, the more I realize how prevalent dementia and Alzheimer’s are. Many people have these diseases, and the care industry is hopping. What I also realized is there are not enough caregivers, or enough high quality caregivers, at the moment. In-home care is very location-based. If you live somewhere a little rural, you may not be able to get regular care. That’s why it’s so critical to expand your list of potential helpers. Perhaps by joining Facebook groups or reaching out to family and neighbors. Whatever it takes to help get the job done.
If you are put in a situation where you need to care for someone with dementia/Alzheimer’s on a temporary or permanent basis, take heart. There are millions of people in similar situations who could provide a huge amount of information that might help. If you ever need ideas or would like to talk to someone who has been there, feel free to give me a call or send me an email!
And now I’m off to enjoy the rest of my day.