The Whitworths of Arizona, bringing science to you in everyday language.

Friday, April 25, 2014

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 in the LBD Book Corner.

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