Advocacy tips for family caregiversAug 25, 2023 10:12AM ● By Laird Landon
Dear Laird: I just placed my wife in a community with memory care and I am fragile. They told me to not visit for a week or two so she can get adjusted. That just doesn’t seem right. I’m already down because I should be providing care; it’s my job as her husband. My real question is what do I do when I am able to visit? What are the rules? What should I expect? Signed, Levi
Dear Levi: Many caregivers consider placement to be fraught with feelings of failure. You want to provide all her care because you love her and you know her best, and can do the best job. Unfortunately, she needs more care than any one person can provide.
It’s an added gut punch when you’re advised not to visit for a while, but there’s a good reason. Your wife will be confused and unfamiliar with her new home. If you show up, she will likely cling to you and want you to take her home. Depending on your wife’s stage in the disease, she may continue to ask to go home for a year or so, and it’s heartbreaking.
But you are still vital to your wife’s care and can advocate for her. Here are a few ideas of how you can support her.
You will likely be asked to complete a form of her likes and dislikes. The more the staff knows about her favorite food, music, games, movie stars and so on, the easier it is for them to start off right. They need to know what she dislikes as well.
More important in the long run is your active involvement in the care plan, which covers medications and treatments and end-of-life directives. Staff members are required to follow the care plan, so you want to know what’s in it and can add what you want.
It’s important to earn the respect of the care team early on. When you see examples of excellent care, thank the person and share their good deeds with management. Bring a token of thanks when you come: cookies, greeting card, flowers, etc.
Be consistent with your wife. Find the best time of day to observe her before approaching. Greet her with a smile and compliment her appearance. Avoid asking her questions. Even simple ones like, “How are you today?” may confuse her. Touch is very important as she will eventually have trouble responding to voice. Music is soothing. Bring her favorite songs and play them with her. Photos personalize her space and everyone will enjoy looking at them. You might set up a smart display that cycles through favorite pictures.
The facility may have a regular meeting for families, which are great opportunities to learn and contribute. The state also requires a quarterly meeting to update you on your wife’s condition. Bring your questions and be ready to actively participate.
Being a caregiver advocate is a big job, but patient-residents get better care when someone makes regular visits.
Check out the Caregiver Support Foundation.
Send your questions to Laird in care of the BEACON or email him at [email protected].
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