When caring for an elderly person, you can measure status as being on a plateau or in a decline. As a friend said to me, “Over time, the plateaus get shorter and the declines get steeper”. This is true. My mother has experienced this pattern of a fairly even pace for years and then decline. She worked until she was 75 and she was still sharp and energetic, but had slowed a bit. She still traveled, did crafts at a high quality, and enjoyed her family and friends. By the time she was 80, she experienced mild decline. She no longer drove the 10 hours down to Baltimore, she chose to fly. She took on fewer projects and was a little less meticulous with her work. She was more forgetful. She was on a new (lower) plateau. By the time she was 85, she was into a new decline. She was having difficulty caring for herself, managing money and an apartment, shopping for food, and so on. She required help from family and friends, and eventually could not live on her own anymore. She came to live with me when she was 87.
For the first four years, Mom was okay. She could follow TV shows, particularly older shows with a slower pace and documentaries that grabbed her attention. She could knit well (so long as the pattern was not complicated), come up with her own patterns to color or paint, and decide for herself what to do with her time. She could get her own breakfast and lunch. She liked to go shopping with me. She was again on a plateau and actually had regained a little of the energy she had lost when she lived alone.
About two years ago, she started to decline again – a little at first, but then a plunge. She can no longer do most of the things she used to do. Even following basic plots on TV shows she has seen multiple times is a challenge. She needs help remembering how to get dressed in the morning and where she lives and who has died. This is a steep decline and it’s unclear how deep it will go and when (or if) there will be another plateau.
We now have someone who comes in to be with her later in the afternoons. These are the times when she is most lonely, scared, and confused. She loves having this new friend and having someone to talk and laugh with. They have been doing jigsaw puzzles. It has been lovely hearing her laughing with someone again. Prior to this, she would sometimes cry later in the afternoon when I was working, because she was alone in the living room and couldn’t remember whether I was at home or away.
I now help her dress in the morning and undress at night. I get breakfast and lunch for her, and help her find the bathroom. I find things for her to do during the day – knitting a cat mat, coloring, and so on. In sum, I help her navigate the slings and arrows of daily life. As a caregiver, it’s hard to figure out when to push her to do things and when to help. For example, I never help her get out of bed – she can do that on her own and as long as she is able, I leave it to her. I do come in to her bedroom to be there if she needs me. Yet, I always help her with her socks and shoes! Footwear is a bridge too far.
I’m fortunate that my job is flexible and that my supervisor is compassionate. So many of the people I work with have had an elderly person live with them. They understand the declines and the changing needs and the challenges. I start work early now, usually by 7 am, so that I have flexibility in the afternoon. Being a caregiver for an elderly person means lots of changes in routine (a bit of an oxymoron) as we adapt to changing times and capacity. Unlike with child care, there is an understanding that things will not get better and needs will not lessen over time. My mother will not become more independent or better able to care for and express herself. There aren’t many advances upward – the changes measure loses of skills, abilities, joy, and accomplishment. She was so proud on her 90th birthday, but she seems surprised and a little sad to now be almost 94. She has started to see herself as “old” and to dislike the fact that she is the sole survivor of her siblings – survival doesn’t make her feel strong, only lonely and afraid.