Advocacy tips for family caregiversAug 21, 2023 12:18PM ● By Laird Landon
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 also a 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 the place. If you show up, she will likely cling to you and want you to take her home. My wife Marilyn grabbed my wrists on my first visit and wouldn’t let go. I needed help to leave. 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. You are an advocate for her. Here are a few ideas about how you can support her and how to make your visits successful.
You will likely be asked to complete a form of her likes and dislikes. The more the staff knows from you about her favorite food, music, games, movie stars and so on, the easier it is for them to start off right with her. They need to know what she dislikes as well.
More important in the long run is your active involvement in the care plan. The plan covers all 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. Sit in the common area and observe. 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 come and 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. Everyone will enjoy looking at them. You might try a smart display for her nightstand that cycles through favorite pictures.
The facility may have a regular meeting for families. These are great opportunities to learn and contribute. Also, the state 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. 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].