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.

Support is Where You Find It

Ursula has been so generous about letting me use her story and now I’m going to be even more intrusive. I’m sure you’ve wondered about the baby’s father. He’s there, back in Europe, but he hasn’t been able to accept the idea of a baby. Their story reminds me so much of caregiver’s stories about those relatives that resist the idea that their loved one might have LBD that I asked to tell it.

They were both successful journalists, traveling all over the world for their stories. Children weren’t an issue--Ursula didn’t think she could get pregnant. And that was all right. She was 37. She loved her job. She loved spending time with (we’ll call him Jack) when she was home. Life was good. But then, she did get pregnant. As the baby grew inside her, Ursula became dedicated to being a parent. Jack pretended nothing had changed. When, at about 6 months, the doctor told her she was risking a miscarriage if she continued working, she quit and started living on her savings. Jack just wanted things to continue as they had. He was blind to her internal changes and because Ursula still wasn’t showing much, it was easy for him to minimize the ones he did see. Ursula left, coming here, where her American family offered her the support she wasn’t getting from Jack.

As the LBD gradually changes your loved one from an independent, reasonable adult into a sometimes disagreeable, sometimes irrational, sometimes even violent, and always increasingly helpless person, you are there. You see and experienced the changes. But like Jack, others in the family may be blind to the changes, minimizing those they do see. “Oh, dad is just tired. We all get cranky when we are tired.” “No, Mom’s not seeing things. She’s just making it all up to get your attention. She’s always been imaginative.” “It was just a bad dream. See he’s fine now.” Like Jack, they are trying to keep things the same. And it isn’t working for you. Like Ursula, you feel unsupported and angry. And you hate feeling angry at people you love…but there it is.

After her difficult delivery, Ursula told Jack about it and the frustrations of being a new mom. She wanted to be able to voice her feelings of weakness, inadequacy, and pain and get understanding from him. Instead she got pep talks. “You are courageous and strong. You can do it.” She wanted him to share her extra expenses. Instead she got weak promises.

On the job caregivers often say of their resistant relatives, “They don’t understand. They tell me they are so glad I’m here, but they don’t offer practical help—money, things to make my work easier, someone to come and stay so I can get away for a while. They think they are supporting me when they tell me I’m strong, that I can do it. But that just makes me continue to feel unsupported—as though they don’t think it is as hard as it really is. I need acceptance of what is, not what they want it to be.”

Ursula did have other support: people who stepped up with practical help instead of platitudes and promises: her “American family,” her mom who flew in from Europe, and even some neighbors. She hesitated at first—she had her pride and was used to being independent. “You have your lives to live,” she insisted. But none of us would have offered if we hadn’t meant it. And so she got the support she needed—not from where she wanted it, but she did get it—or at least enough for now—and we got to enjoy her and our sweet Baby Ian.

Such help is often available to caregivers too. When caring family members, neighbors and friends offer help, it is real—offered in love and concern and shouldn’t be rejected out of pride. Take advantage of this. It may make the difference between keeping your loved one at home or not. But don’t expect them to know what you need. Be clear and concise. Ursula learned that telling her mom she needed her to get up at night when Ian cried and hand him to her to nurse worked much better than saying how much it hurt to get up and expecting her mom to know what she needed. Leave out all the whys. Those are clear enough already. And don’t worry about being able to repay; you can pay it forward eventually. Or, many cases as it was in ours, just the experience is pay enough.