Question: Dear Luise: Where can I turn regarding end-of-life issues? I am having a very hard time caring for my wife. She has lost her memory and is very frail. We live in a Continuous Care Retirement Community but they are having problems with her in our nursing unit because she wants to get up…can’t…and doesn’t understand why she can’t. She also won’t eat unless I go over to the nursing unit and feed her. Our son lives about 45 minutes away but he has just gotten a job after having been laid off and being out of work for four years. Our finances are limited and my health is failing. I just don’t have the reserves to keep up with what’s needed. Is there any help available that you know of? Don
Answer: Dear Don: Ask to speak with the social worker connected with the nursing home. Let her know of your concerns and limitations. They may not realize the toll this situation is taking on you and may possibly be taking your help for granted. They’re supposed to offer full care. If they can’t offer that, perhaps you should have her moved, even if it has to be off-campus.
If there is a Senior Services office near you, call and make an appointment to talk with someone there regarding your circumstances. Sometimes there is help available and sometimes it can be given at home. It may work better for you to bring your wife back home. All people don’t adapt well to nursing homes. Have you thought about having a live-in caregiver five days a week? You would only have to be responsible on the weekends. Perhaps your son or his wife or other close friends of yours could alternate with your for weekend care.
A very sad statistic is coming to the fore that is connected with these health-care issues and that is the fact that caregivers often die before their patients do. They just wear themselves out and don’t survive the long haul. Many married people and family members feel a deep sense of loyalty and duty and push themselves beyond their capabilities. The time to avert this very real danger is now. Think about it…isn’t it better to modify your caregiving rather than eventually leave your loved one totally alone.
There are people and associations who are familiar with the overview and are up on what’s available to you and what your options are. Research that ASAP and find an advocate, if you can, who will direct your efforts to create relief before it is too late. This is an end-of-life situation that is beyond your ability to cope with independently. Don’t let it hasten the end of your life. Blessings, Luise