Advocacy tips for family caregivers

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 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-oflife directives. Staff members are required to follow the care plan, so

BY LAIRD LANDON, PhD

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. ■

Send your questions to Laird in care of the BEACON, or email him at Laird@Family-Caregiver.org

Experienced

If you are between the ages of 50 and 66, the regulations make it easier for you to receive social security disability benefits. If you can no longer work because of a physical or mental health condition, call for a FREE CONSULTATION to find out if you qualify

What people are saying:

”I would advise anyone trying to get disability benefits to call Diane Bross. I was so pleased with how things went.” – G.V.

“After all of the time I waited and tried working through the system, Diane Bross managed to get me my disability insurance payments that I was needing. Thank you!” – Laura

“A special thanks to Diane Bross and her staff because without them I would not have my benefits. Because of them, I have regained my financial life. It’s back in order. No where to go but up. So, thank you very much.”

–Mr.

Winston