From the voice of a family caregiver
I feel there is a tendency to think that only caregiving at home from the beginning of an illness to the end of someone’s life is the best care. And somehow that your devotion and love for someone is only measured by how long you can stand taking care of them. And that that care should only conclude when they pass away at home. I think this is some really unrealistic thinking.
I think the first thing you need to do is have a frank talk with your family members, if any, about what is best for your ill loved one. But I would say to think through at least three different ways of providing care. For example, (1) loved one moves to my home and is fed and cared for by me and my family; (2) loved one is moved to an assisted living center or some other care facility; or (3) loved one is cared for by a series of relatives who take turns caregiving, etc. In short, explore all alternatives for the immediate needs and the future needs of the individual.
You should also consider how long you can do any of the above. Obviously if you are working there are definite limits to your time and involvement. Also if you have other family responsibilities, i.e., spouse, children, etc., location of the loved one is a major consideration. You can’t provide 24/7 care for someone who lives 1,500 miles away!
Some Questions to Ask Yourself
Before a moment of caregiving begins I think each person has the right to determine if they can deal with the ill loved one including all their present behaviors and those yet to come. There is absolutely nothing wrong with saying that you are not the person to handle the problems of your loved one on a 24/7 basis for whatever reasons. Why would it be easy to care for a person who has been extremely difficult all their life? Is your being a caregiver going to make that person sweet and easy-going? And if someone is difficult today, will their disease make them even more difficult in the future? Can you care for this person without denying every other family member their right to live a good life? There is no reason to feel guilty because you recognize your strengths and weaknesses. Your loved one may be better off not being cared for by you and you may be better off, too!
Certainly there is no one sure-fire way to care for someone. There are so many people who have gone so far beyond what anyone would expect someone to do to care for a loved one. I sometimes wonder how changed the caregiver will be when their caregiving days are over and will it be as good or better than before being a caregiver. . . . Maybe thinking these things through will help decide what is best for you. I certainly hope so.
FCA is introducing a new series of blogs, called “Caregiver Wisdom.” Today is the first of these posts sharing heart-felt thoughts and experiences from family caregivers. Thanks to those caregivers from the Link2Care program offered by FCA and California’s Caregiver Resource Centers for providing the first posts. We invite your interaction―questions, comments or insights of your own. If you are a caregiver interested in providing advice for a future Caregiver Wisdom post, feel free to contact us at firstname.lastname@example.org with “Caregiver Wisdom” in the subject line.