How to Help a Caregiver, Part 1

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

The Red Flags for Needing Help with Caregiving

Any Lewy body disorder is progressive and the progression is usually very slow. So slow that a caregiver doesn’t really notice how difficult the job is becoming. It helps to have a list of “red flags” and check them once in a while. This blog will only list the red flags and some of your options. Later blogs will discuss the options more fully.

1. You have become uncomfortable leaving your loved one alone. This means that you will seldom be able to leave home unless you take him with you, find someone to stay with him or find a place to leave him. Any of these can be difficult at times. If you take him with, this may be cumbersome, depending on his physical abilities. And it also means you have no time alone. Finding someone to sit with him can also be difficult—and of course, it means asking for help. Finding a place to leave him usually means adult day care, which can be a good solution.

2. Your loved one has become so ill or difficult to manage that it is no longer safe for you to do it by yourself. This means you will need to find adequate in-home help or place him in a compatible long term care facility. In-home care is usually adequate at first but eventually you will likely have to consider either round-the-clock in-home care or residential care. The residential care solution can be made more palatable for couples if the spouse enters at the same time. This need not cost much more, by the way.

3. Your home is no longer accessible for your loved one’s needs. This often happens when a person becomes wheelchair bound. This means that you will need to consider remodeling, moving to a more accessible home or placement in a long term care facility. If you wait until you need it, the disruptions of remodeling may be too stressful for your loved one. Moving is often a viable option although leaving a beloved home can also be stressful for both of you. As above, the residential placement may be less stressful for couples who enter together.

4. Your health becomes so poor that you can no longer provide safe care. This is actually the most common reason why people enter long term care. This will be less likely to happen if the caregiver makes her physical AND emotional health a priority from the start. However, this issue often gets ignored. If you soldier on until you literally can’t do the job, residential care may be the only answer. Caught early on, adding in-home help can often be enough at first. As your loved one’s needs become greater. Eventually, either round-the-clock help or residential care will likely be required.

The bottom line is that if any of these issues are present, you need to re-evaluate your ability to handle your caregiving responsibilities without help. Resistance to this, even strong resistance, is understandable. No one is going to do this job as well as you do it, or even just the way you do it--among other issues--see the April 11 blog. However, if you don’t get the help you need when it is needed, you will be forced to get even more later. And then, you may be too ill to not be able to provide very much caregiving support at all. If you do get help, you will find that you can actually give your loved one better care because you are not so focused on your own issues such as pain, depression or illnesses.

Find more about caregiving in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.