Having to gradually make more decisions for the person you care for can be stressful. People often aren't sure of how large a role to take on behalf of others. It can be especially difficult where they have to make decisions for their parents that their parents had to make for them. Still, these issues must be faced, and I often find that they are best faced gradually, well ahead of time. At the memory clinic where I work, we are fortunate to have skilled nurses who are very used to initiating and managing these discussions. One thing that reassures people is to know that, as difficult as these decisions are, they are not alone in facing them. In fact, one of the skills of an experienced health care provider is to help individual people make decisions, while still demonstrating that others have done so too, and that they themselves are experienced in helping. Just as no one wants to feel that they are alone, people do not want to feel that their decisions are being rushed, or that they are on an assembly line. If you feel that a decision is being rushed, you should say so. But decisions cannot be put off forever, and they are made a lot better in the clear light of day, than when things get rushed, as they will in an emergency.
Another real challenge to making decisions on behalf of other people is in knowing what the guidelines to follow. How should decisions be made? As a rule, the guideline is to make the decision not necessarily as you want it, but as you think that the other person would want the decision to be made. That is why it is best to have these conversations early, when the person is clearly competent to give instructions about how a will should be made, about how they wish to be treated if a life-threatening illness develops and they are too ill to decide for themselves, or about how they feel about a nursing home.
The nursing home decision is an especially stressful one. Few people actively wish to go, but many would prefer to move to a nursing home than to be a burden on their families. A situation that we commonly encounter is where the spouse with dementia has been promised by their caregiving spouse that they will not have to go to a nursing home. Then the unaffected spouse dies, so that the promise not to have to go to a nursing home now falls on someone who did not make that promise. It might sound very easy to say that the promise died with the spouse, but families are bound to feel differently. Often, discussing these situations ahead of time can be a great help. Often, too, such discussions are best had with the help of an experienced health care provider or counselor.
Another important point about decision making is this. In my experience, in most families, no matter how large they are, one person winds up providing most of the care. Other family members not only provide less help, they often minimize the amount of help that is needed. One of the goals of DementiaGuide is to provide detailed descriptions of the symptoms of dementia, so that other family members get a better sense of what the person with dementia is actually experiencing. My usual advice to family members who are only peripherally involved with care is to not criticize, to visit for enough of a stretch that they can take over care and give the major caregiver a few days rest, and to provide money.