no longer on a plateau

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 or 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 from the plateau – 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.

living the long goodbye

Though often applied to Alzheimer’s disease, the long goodbye also describes other dementia-related conditions. Since I last wrote about my mother, her capacity to care for herself has declined. Fortunately, she is physically able to take care of the basics, but mentally she is having a difficult time. I cannot imagine dealing with the level of memory loss she now has – she often doesn’t really know where she is. She still knows me, which is a blessing, but sometimes she thinks I’m her sister rather than her daughter. She mixes up her brothers and her sons. She frequently tries to remember who is alive and who has died. She’s 92 now, so many of the people she once knew have died.

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the evolution of things

 

banner-1076214_1920In a prior posts (including staying on schedule, logging progress and challenging fears), I talked about putting together lists and organizing my mother’s time and space. It’s a process. Every time we fix one piece, there seems to be another that needs an adjustment.  These aren’t wholesale changes – just tweaking around the edges. Changing out one spreadsheet for another. Switching out furniture for something easier to use. Editing some instructions on how to use X, Y and Z to include more pictures. Simplifying … everything. Continue reading

where’s millie?

decor-2483214_1280A couple of weeks ago, my mother’s first words of the day were, “Where’s Millie?” and I froze. Millie is my mother’s younger sister who died about 42 years ago. She didn’t remember that Millie had died of a brain tumor. I think she realized that forgetting this particular piece of information was a bit unusual for her, as she was rather quiet when I told her. For the next 20 minutes or so, until I left for work, I heard her quietly say several times that she couldn’t believe that she didn’t remember.  Continue reading

death and memory loss

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Last year, my mother lost one of her best friends. It was tremendously sad for all of us, as Ginny was a wonderfully energetic woman who shuttled my mother to the doctor’s office, the grocery store, the library and anywhere else Mom needed to go. Ginny was 73 years old and, though she had been sick for a couple of months, her death was a shock. She was always busy with family, crafts, the Church, social organizations and friends, particularly my mother. She always made time for her and went out of her way to make sure Mom was safe and sound. I don’t know what we would have done without her.  Continue reading

finding an educational message

 

 

 

Television is at its best, in my opinion, when it opens a window on something new or shines a spotlight on something artistic or presents great storytelling. For my mother, television is a primary source of information. She no longer reads newspapers and rarely reads magazines. TV is her source for national and local news; she doesn’t follow the ins and outs of pop culture. However, she does like history and science.  Continue reading

finding the funny everyday

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It’s been a while since I posted about life with Mom, who is 89 years old. She is living with me now after years of living independently. Before she moved here, she had a group of friends with whom she would go shopping or work on craft projects. They would chat and laugh and enjoy each other’s company. They still do chat and laugh, but much less frequently and at a distance of 400+ miles. People don’t call as often as they used to and who writes letters anymore? Mom’s movement is more limited – it’s physically hard for her to get around and she is afraid to go out and do things because she’s in a new city. Sometimes she can’t remember where she’s going or how to get home. I think she’s afraid that if she goes out, she will be lost forever. Her world is shrinking.  Continue reading

movie magic sometimes strikes

film-596519_1280My mother is no longer able to follow complex or fast-paced movies, which is not surprising given that she is 89. Her short-term memory is problematic; she tends to do better with long-term memories. Yet, while old movies and TV shows are easier for her to follow, sometimes she still has difficulty following the story and loses track of the characters. At least with old movies, the pacing is slower (as is the flow of text in closed captioning) and the plots are a little more familiar. She also remembers some of the old actors and actresses that she watched when she was younger.   Continue reading

clearing out and letting go

clothes-2150834_1280Even in a small space, there are things to sell, give away, donate or throw away. When Mom came to live with me, she mailed several boxes of clothes, craft supplies, etc. and I found homes for them in the closet or in drawers. I sorted through my things to make space for whatever she sent down. This meant that some of my things were put out for anyone to take while other items were donated to organizations helping: women fleeing domestic violence or homeless people in Baltimore or veterans who need assistance or shelter-bound animals seeking a home. Of course, some items were thrown away, having already given their all. Item A needed space so Item B had to go.  Continue reading