How to Manage Care for a Loved One with Dementia or Alzheimer’s
By Lara Patterson, Opening Services Manager at HomeWell Franchising
Taking care of my grandma became a reality for me after the death of my mother in 2009. My grandma had been forgetting things leading up to that time, but the passing of my mother put that into fast forward. Suddenly, I was responsible for all my grandma’s financial payments and making decisions for her health that I thought no grandchild should have to decide. Nobody told me what to expect or what signs to look for in my grandma. I remember the day she had been admitted to the hospital and the doctor said, “You must decide whether to sign the DNR or not. She has Alzheimer’s and she no longer has the mental capacity to decide for herself.”
I had been told that my grandma had dementia, but no one warned me to have conversations with her about what she wants in the future regarding her health because there will come a time she cannot. She was no longer the grandparent I remembered from my childhood – the one who cared so much about her clothes being “just so” and her hair being styled every week. She became a person I hardly knew – one who no longer noticed if her hair was even combed or if she had on clean clothes. In her mind, everything was about 20 years behind where we were. She thought I was my mom and called me her name most of the time. She thought my brother was my uncle and my son was my brother. She would stare long and hard at my Great-Aunt (her sister) like she knew her but could not place her. However, she would refer to her all the time, so I knew in her mind she remembered her. It was a hard reality for me. It frustrated me. I would be so mad at her for not remembering something I had literally only told her seconds before. It took me a long time to get past that.
I prayed for patience a lot during those days. I would stubbornly correct her with names or fuss at her for “lying” that she did not do something like take the TV or the medicine machine apart when—at that time—she lived alone and was the only person in the house. Thinking back, I didn’t have a lot of patience and it is something for which I now feel bad. But no one, including the doctors, told me what to expect or how to deal with it. I wanted her to still be the grandma I knew growing up and I could not understand how it had changed so quickly right before my eyes. The burden of taking care of her was too great on me alone. I was working full-time, my husband was deployed, I had a teenager involved in multiple school activities, my mother who I was really close to had passed and I was spending every weekend at my grandma’s house trying to catch up on the laundry, do housework, fill her medications, and take her to the grocery store. My grandma had her right leg amputated in 2000, so she was in a wheelchair where even trips to the doctor were a challenge and not a quick outing.
Then a friend gave me a great piece of advice. Get help! I went searching. My grandma was on Social Security and did not have a lot of disposable income. I did not think she could afford to pay for assisted living and was not sure that she was ready to really be in a nursing home. I was fortunate to find a wonderful social worker at one of the facilities I had been checking who mentioned in-home care services. What were those? I did not know these services even existed. I reached out to a home care company and found out this was something my grandma could afford.
The relief of knowing a caregiver was going to be there to make her meals, help while she was bathing and assist with light housekeeping was the peace of mind I did not know I was missing. As some of the burden of caring for my grandma was taken off my shoulders, I got to “care” for my grandma more. I was able to just spend time with her versus having to be on the go the whole time I had dedicated. We could have lunch and put together puzzles. Really, I put together puzzles and she mostly watched. She got to where she still loved to look at things but could no longer tell how something went together, play dominoes without help, play bingo with the group of ladies in her senior residence or even read.
My grandma still asked me the same questions over and over or called me my mom’s name, even though I told her I was her granddaughter. She would tell her sister I had not been to visit or called when I had only left a few minutes before. She would ask why my grandpa, who had passed away before I was born, had not been to visit. It would make her sad and then a couple minutes later, she would ask me why he had not visited again. I was still finding myself frustrated with her.
Then one day, I came across an article about caring for a parent (or grandparent) who has dementia or Alzheimer’s and how to cope when they talk about the past as if it’s the present. Should you go along with it or tell them the truth. The article said enter their reality and enjoy it. She does not need to be “oriented”. If she spends most of her time thinking it is 20 years ago, go with it. Ask questions she did not have time for before. Ask her about her time as a child growing up. Learn about your grandparents when they were young. If she tells the same story over and over, appreciate it as if it is your favorite song. This is not playing along to appease her. This is an opportunity to communicate and have some treasured memories for later. That article really stuck with me. I tried it. It worked.
My grandma was happier because in the moment, I was not telling her that the person she was referring to was no longer alive. I would agree with her that I was my mom, and it made her happy. Or my grandpa had just been so busy, he had not had time to get by. She would hold on to my arm and babble on about nothing, but she was content. I was content! I was no longer the frustrated person I had been. It made spending time with her more precious. I still went every week and even years later when she had been moved to a nursing home, and we both enjoyed it more. She was really a funny person – sometimes embarrassingly so as she no longer had a filter for anything she said. But that was what endeared her so much to her caregivers.
I wish I had found the article sooner but grateful at least I did. The last few years with my grandma were so much better. She passed away in 2020, but I felt so much more peace by that time, knowing I had spent some very happy last years with her.