Lisa Cooke is our guest blogger this week and next. She received such positive feedback for her “What NOT to say to a caregiver” blog (reposted here last month) that she decided to do a follow-up. What she came up with is so long—but so good—that I’ve divided it into two blog entries.
Many friends and family members really want to help, but they don’t know how. I polled some on-line support groups, asking the caregivers what they wish people would say or offer in order to make their lives a little easier. Below is a list of suggestions that might be helpful for both the family members and the caregivers. I’m frequently asked by friends if there’s anything they can do and I never have an answer. Now, I have some ideas!
Nice things to say Sometimes, a kind word goes a long way, but knowing what to say without hitting a nerve can be tricky. Everyone has their pet peeve when it comes to things like this, but most caregivers were pleased when they were complimented for what they did.
She’s lucky to have you taking care of her and You’re doing a great job are comments that offer encouragement when given by someone close enough to the situation to know what you’re going through. However, when I hear those things from someone I barely know, I always think, “How would you know?” As with anything, sincerity is important.
My sister-in-law is very close and offers support and love regularly. When she sends an email, she nearly always ends it by thanking me for loving her brother so much. It warms my heart, every time. If your LO is being cared for by a family member, tell them you appreciate and are grateful for the love they’re giving in your absence.
I think about you often. Sometimes it helps to know others are aware of your struggles and pause to offer prayer or positive thoughts. Caregiving is a lonely business. It’s easy for us to think the rest of the world has forgotten we’re alive.
Helpful things to do. When I asked the question, “What do you wish people would say to you?” the overwhelming response was an offer of help. At this point, many friends reading this are cringing. The idea of helping care for someone with dementia scares them to death. But there are ways you can help that don’t require providing physical care. You can offer to do chores or deliver a meal.
“There are little things around the house that I can’t do. I wish someone would offer to fix the back door, or remove some of the brush from our yard,” one caregiver said. If you’re handy with home repairs, consider asking the caregiver to put together a list of projects s/he needs help with, then set up a time to do it. That last part is key. If you don’t arrange a time to show up, the caregiver probably won’t follow through with the offer. Ironically, they’re too overwhelmed with everything else to schedule help.
“Bringing over a meal every once in a while would be nice, or bringing something to stick in the freezer for those days when I’m too tired to cook.” Caregiving usually gets to the point of being very confining. Having a change in the menu can feel like a miniature vacation, even better if the person bringing the meal, stays to share it! If you don’t cook, pick up a meal or gift card for takeout from a restaurant. It’ll be appreciated, guaranteed.
Another caregiver said, “I wish someone would offer to clean my home or do my laundry. It would be nice to get a break.” Caregiving is all consuming. Unfortunately, the house still gets dirty and laundry still piles up. If your schedule doesn’t allow you to help in that way, consider paying for a housekeeper before the holidays or when family is coming for a visit. The caregiver will be eternally grateful.
VISIT! Another oft repeated request was for a visit. Many caregivers feel forgotten. It’s an easy thing to happen. The withdrawal from society happens gradually as their LO’s disease progresses. Soon, their friends forget about them as they continue on with their own lives. There’s also the problem of friends being afraid to visit. Dementia has a horrible reputation, sometimes it’s warranted, but short visits normally aren’t a problem.
The key is to call first and give the caregiver a couple of days to plan for the visit. This allows the caregiver a chance to schedule personal tasks that need to be done privately like showering. Simply pick up the phone and say, “We’d love to come and see you guys. What would be a good time for you?” Follow that with, “Can we bring something or run an errand for you on our way?”
I’m an author and caregiving duties have forced me to stop traveling to writer’s conferences and workshops. I miss that part of my life quite a bit. Luckily, I have some dear friends who also write and who call me periodically to brainstorm plots. As a rule, they live too far away to stop in for a visit, but one of them actually took a day of her spring break to travel the 3 hours it takes to visit me. She spent the night and we talked writing and book plots for the better part of two days. It was wonderful and didn’t require I leave my husband behind. That’s a gift I will never forget.
Read the rest of Lisa's suggestions next week! In the meantime, you can go to her blog, LewyWarriors and read more of her writing.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia