I’ve been working on a presentation that I plan to give to caregivers who work at assisted living facilities or for home care agencies. It’s about Parkinson’s disease but I wanted this to be more than a Parkinson’s 101. I want to share with these caregivers how they can go from simply meeting a patient’s needs to improving the quality of the lives of the people they care for.
To help me with the presentation, a friend brought a wonderful article to my attention – The Challenge of Parkinson’s Disease: Adapting to a Nursing Home by Karla Tolson, R.N., B.S.N. It’s available through the American Parkinson Disease Association. The article describes the life of a nursing home resident, Bob, who is being given Sinemet 3 times a day as per his doctor’s prescription. The timing of Sinemet is very important to people living with Parkinson’s because it helps them to move. It might only help for a few hours and there can be an off period between doses that limits mobility.
In the first scenario, Bob is given his first dose of the day when he rises, with his breakfast. It hasn’t had time to take effect so he needs help with eating, bathing and getting dressed. As you can imagine, he feels humiliated, frustrated and depressed, so he doesn’t feel like socializing and because his other two doses are also poorly timed, he spends the rest of his day requiring help with the basics like eating and generally feeling pretty miserable. To top it off, the last dose is at 9:00 pm and because Sinemet helps with mobility, he thrashes around a lot and doesn’t sleep well.
In the second scenario, the timing of the Sinemet is changed so that he receives his first dose an hour earlier. By breakfast time, his medications have kicked in so he can feed himself, shower, and get dressed without help. Because he’s able to do things for himself he’s feeling more confident and sociable, and participates in activities with other residents. The other two doses of Sinemet are also better timed and he takes them an hour or so before his meals so he’s comfortable eating (without assistance) in the dining room with the other residents, and he’s generally more active and sociable. His third dose is wearing off by bedtime so he sleeps better and doesn’t wake up tired and depressed.
The article describes the two scenarios in greater detail but can you see the difference in the quality of Bob’s life? While the article is about helping to improve the quality of life of a person living with Parkinson’s in a nursing home, I believe the points that the author is making can be adapted to any patient whether they are living in a community or at home. What can caregivers do to improve the quality of life of the person they’re caring for?
- Talk with the person and work together to find ways to improve the quality of the person’s life. This may require some creative thinking on the part of the caregiver to suggest options but the person can contribute by sharing what he or she enjoys doing.
- The more we can do for ourselves, the better we’ll feel. Feeling like a patient can equate to feeling helpless, and it’s hard to feel motivated when you feel helpless. In an article in the Washington Post, You don’t have to be young to be a hotshot: Retirees and grandmas embrace snow tubing, I love how a 76-year old lady who broke her hip a year ago describes how she feels on the bus home: “I feel myself again. It’s the first time I don’t feel like a recovering invalid,” she said.
- If the person can no longer be cared for in their own home, there are changes in the assisted living and nursing home models from institutions to being more home-like. Have you heard of the Green House Project? Or the Eden Alternative?
Patients are people, too!
Small changes to a patient’s routine can make such a difference to improving the quality of life so the patient feels like a person again. Communicating with the patient to find ways that will allow him or her to be as independent as possible will help the patient to feel like his or her self and improve the quality of life for the caregiver as well as the person.