This is a letter I sent to my employer. I am a caregiver for her mother who has Alzheimer’s. Her mother has been living with her for about 4 years. My employer (“A”) is getting ready to start her own business and was considering putting her mom in an assisted living facility. At the least she was considering putting her in respite care for two weeks so that she could better prepare her home for her new business venture.
Hi A,
I know it must be hard to be considering putting your mom into someone else’s hands. After chatting a bit tonight about her I wanted to put in a few more thoughts about it.
I believe Patsy still has a certain quality of life and would like to see her enjoying that for as long as possible. Currently, she is walking between 4 and 6 miles per week with me. During all of summer and half of fall we were walking between 9 and 12 miles per week. She still enjoys encountering others on our walks, especially dogs and children. It’s not hard to engage some of her interest in looking at and smelling flowers and certain fragrant leaves (there’s a rosemary bush that we almost never miss stopping to smell). It also brings her pleasure when I point out Mount Rainier and the Seattle skyline.
Music has been a big part of our experience together, whether it be the enjoyment she experiences watching Lawrence Welk, singing Old McDonald to her with the puzzle and hearing her laugh at my animal noises, singing the ABC’s with the ABC book (she has her own ending to the song, “now I know my ABC’s, tell me what you think of me!”) or dancing with her to music on the radio. Singing to her while I’m fixing meals or on our walks is also an effective distraction when she’s getting anxious (she loves “You are My Sunshine”, “Take Me Out to the Ball Game” and “Pop Goes the Weasel”).
She loves watching the children on Signing Time. Signing Time is also good for reviewing basic vocabulary. She’s always mouthing along when they do the numbers or the ABC’s. She is still very alert while reading to her, and frequently seems to grasp larger chunks of the stories I read by laughing in the right places and knowing when the story has ended. The picture of the Cat in the Hat nearly always makes her chuckle, and because of the pictures, I think she follows that story quite well. She loves the Mother Goose book and mouths along with a great number of the rhymes (I always let her finish “Little Jack Horner” because I can sense her alertness and recognition increase as she shifts in her seat getting poised to say the last line, “what a good boy am I!”). She is still doing well playing the card game that Kelsey taught me (we played tonight for the first time in a while).
Her need for companionship is apparent. She’ll typically sit through Lawrence Welk alone, but there are only a couple Signing Time episodes that she’ll sit through by her self (by date, the 2nd and 3rd ones; they have younger children, and I believe that’s the reason she remains engaged). I try to eat with her as much as possible, and have noticed that she will start to eat faster if she realizes that I’m getting up.
I believe that if her diet were more consistently rich in fiber, there would be one complete bowel movement per day, and thereby less occasion for messes. I give her half an apple and a whole banana every day that I’m there. I also give her a large steamed vegetable serving every day that I’m there. I also ensure that she has water in front of her at all times. The juice may be good for the vitamins, but, because of the sugar, it’s slightly dehydrating. Every time I’ve had her for extended periods (3 days or more) she’s had one complete bowel-movement per day.
I believe her “combativeness” is somewhat avoidable, and probably almost entirely avoidable with a more flexible clock schedule. Last weekend I had to put her to bed half-dressed. I avoided stressing her out by not trying very hard to persuade her, and I was able to change her completely when I got her up to go to the bathroom later. I’ve realized there’s no point prying her coat from her fingers if she wants to sleep with it or carry it around; worst case scenario, she gets it dirty at the kitchen table or the bathroom and it has to be washed. She’s been reluctant to let me finish brushing her teeth nearly 50% of the time lately, so I’ve changed the routine and do at least one of the brushings while she’s on the toilet, where I’ve also begun doing a lot of the clothes-changing, thereby avoiding most conflict. I have also found that if I let her finish in the bathroom and let her close the door she is willing to have her hands examined and return to the bathroom to have them washed. I believe that being willing to let go of some of the control over minor things (unless it endangers her or someone else, most things are minor and not worth causing her a negative emotional experience), and being creative in experimenting with new approaches to caring for her, most of the conflict can be
eliminated.
The clock-flexibility that I mentioned above will eventually be beyond the possibility of someone with other time-commitments. So, as you are beginning to get this business going, I understand how those conflicts with her will likely be unavoidable. What I don’t know is what your financial limits for caring for her may be and whether you can afford more help at home. I’d like to see her continue receiving the one-on-one care that she is currently receiving. In my opinion, she’s just too responsive to positive stimuli to be put in a place where she will not go for long walks, have interaction with children and animals, be read to, have familiar music played to her, be sung to, or danced with.
If you are having second thoughts about committing her to long-term care I hope you will also reconsider the 2 weeks of respite. Patsy has routines and surroundings that are comfortable to her, and I think it will be extremely distressing for those to be eliminated.
Having expressed in greater detail to you my experiences with your mom, supporting your decision, whatever it may be, will be easier for me. I don’t have expertise in Alzheimer’s and I’m not in your position. I’m not trying to make this harder for you, I just want to be sure you’ve got the whole picture.
Best wishes for your new enterprise and lots of love,
W
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