Originally, this was the only article I planned to write. Watching my mother and hearing from my friend made me intensely aware of things I had never known before—things they had to deal with that I would have never imagined. In a way, this might be the most important of the three articles, though I guarantee you that those two women would have thought otherwise in their attitudes of humility and service.
I am listing these things in no particular order, but as they have come to me, from my observation, research, and discussions with and suggestions from those involved. I imagine the order of importance is different for each case. It will be up to you to look for these things yourself and decide what is needed for the people you are trying to help.
1. Do not ask the caregiver how the spouse is doing when that spouse is standing right there, or on the phone when you know the spouse can overhear that side of the conversation. You never know how much he will understand and how it might make him feel.
2. Don't give medical advice. Any physician would never think of impinging upon another physician's role. How much less should someone with no medical training, or much less, such as an LPN? This got so often and so bad for my mother, that she finally had to say something like, "I believe I will do what the doctor says." That might have sounded a bit rude, but she had been pressured so often that she felt harassed and judged. Please don't put a godly and already stressed out person in that situation.
3. Don't say, "I know how you feel." Knowing someone who has Alzheimer's or dementia and dealing with it 24/7 as the primary caregiver are two entirely different things with two entirely different stress levels. Even helping on a minimal basis, like an overnight stay or afternoon substitute, is far from the same thing. If you have not done it, you don't know. Period.
4. Don't say, "You make everything look so easy." You don't see the struggles, the extra length of time, the often frustrating explanations it took to get a spouse up and ready to go to the doctor or to worship services or any other place. That statement minimizes the caregiver's efforts and her sometimes almost super-human patience.
5. If you live in the same neighborhood as a caregiver, please keep an eye out. For example, my mother went to take a shower one evening and when she got out, two strange men were sitting in her living room. Turned out they were vacuum cleaner salesmen rather than criminals up to no good whom my daddy had let in with no idea what was up except to be friendly, especially since they often received church visitors in the evenings. How much better if a neighbor had told those men, "Please don't bother my next door neighbors. The husband is very ill and the wife is caring for him and doesn't need the interruption. They wouldn't be interested right now anyway."
Also be aware that Alzheimer's patients tend to wander. If you see your ill neighbor out walking the street, go out immediately and talk him into going back home. Listen to him if he tells you where he is going or who he is looking for, and say whatever is necessary to get him to go with you. My mother put an alarm on her door after the vacuum cleaner salesmen episode, but my daddy was a tinkerer who could figure out how anything worked, and one night as she was again taking a shower, he figured out that alarm and took off looking for "his wife." She ended up having to call the police to get him back home.
6. Send cards or small gifts, and if possible deliver them in person. Even the least expensive, tiniest things will brighten a caregiver's day. Due to things like #5 above, a caregiver often has no chance for her own doctor appointments or errands like buying groceries or getting a haircut or car maintenance. If the situation is manageable, consider offering to spend some time with the patient while the caregiver gets a few things done. That is often preferable to you doing it for her because it gets her out of the house and in a calmer situation for an hour or so. Talk to the caregiver about what is best in her situation. This will change from day to day and as the disease progresses.
7. This may be one of the most important: Do not judge the caregiver's choices. No one should be telling her that she is not being a good wife if she has decided that she can no longer take care of her spouse at home and must use a Memory Care Facility. You may not realize that the disease has reached a point where she is now in danger. If that seriously ill mate no longer knows her and thinks a stranger has invaded his home, what might he do to her? I know that doctors will begin asking questions about weapons in the house. One caregiver I knew had to pack up all of her cooking knives. Another had to give all the guns in the house to another family member. But those are not the only weapons available when someone is frightened enough to think he needs one.
At some point, the caregiver's own health will begin to suffer. Most men are bigger than their wives. How will she pick him up if he falls? Many of these patients suffer REM disorder and sleep fitfully with dreams they try to act out. The caregiver will often go several days without any real sleep, and this will go on for years. Eventually reaching the point where she decides he would be best cared for 24/7 in a facility is most emphatically NOT a sign that she is a disloyal or unloving wife who has broken her vows "in sickness and in health, for better or for worse." It is no one's decision but hers, and none of us has any right to question it.
If you have a friend or family member in the same situation, I hope these few things that have come straight from other caregivers will help you out. And as I mentioned in our introductory article, please feel free to share any others below.
Bear one another's burdens, and so fulfill the law of Christ. (Gal 6:2).