As a longtime family caregiver who provided, and continues to provide, differing levels of care for loved ones with illnesses, I can attest to the fact that caregiving can be unimaginably stressful. For dementia caregivers, the stress is even more extreme. Only lately have we seen the results of studies that have followed family caregivers.
Our culture is steeped in language that makes accepting the terminal diagnosis of ourselves or a loved one more difficult to accept than it needs to be. Doctors say, “I’m sorry, there’s nothing more we can do. You might want to look into hospice care.” Patients tell their doctors that they want “aggressive treatment,” until there is nothing else that can be done, then they will go on hospice care. The crux of these conversations is that medicine will do everything possible and then when you give up you will go on hospice care.
If you are just a casual friend to the caregiver, perhaps it's best to remain that way. Still, some of you really care about your caregiving friend and want to help, but you don't know how. The following tips may give your some insight into what you can do to help your friend as he or she takes care of their elderly loved one. (Remember to take this as general advice since every caregiver and every care situation is unique.)
If ever there’s a group of people who suffer deeply from unearned guilt it’s caregivers. Whether you’re the parent of a vulnerable adult, an adult child of aging parents or the spouse of a vulnerable adult, you are bound to have your “if only” times where you are sucked into the quicksand of guilt. The reality is that most things you could have done differently wouldn’t have made a huge difference overall. Even if another approach would have made a difference, you can’t go back. Staying mired in guilt is counterproductive for you as well as your care receiver.
Father's Day and my birthday always fall close together. Some years they are the same day. That always made Father's Day an extra special time in our house as I was growing up. I was, of course, an adult and mother by the time Dad had the surgery that threw him into dementia for the following decade. However, my adulthood didn't shield me from the pain of missing "my real dad" when I'd bring Mom up to the nursing home and we brought cards and flowers.
As a longtime family caregiver who provided, and continues to provide, differing levels of care for loved ones with illnesses, I can attest to the fact that caregiving can be unimaginably stressful. For dementia caregivers, the stress is even more extreme. Only lately have we seen the results of studies that have followed family caregivers. One of the most scientific, in that it uses hard physical evidence, was published last spring. The study, by Ohio State University in conjunction with the National Institute on Aging, showed that caregivers may have their life span shortened by four to eight years.
Dear Carol: My dad is 79 and has suffered from aggressive prostate cancer for several years. What could be done has been done, so far, but the cancer has now spread to his liver and bones. We want Dad to have chemotherapy but his doctor says that he’s not a candidate for this treatment. Dad says he doesn’t want to go through it anyway. I think that they are just giving up. Shouldn’t the doctor be encouraging Dad to fight the disease? I thought that doctors were supposed to do everything to save lives. I think if the doctor insisted, Dad would agree. What can we do so that Dad gets all of the treatment possible? FMC
As I visited with a friend and her mother who had mid-stage Alzheimer's, her mother abruptly stood, held out her hand, and said to me, "You can go now." Since I'd been forewarned that this may happen and I'd been around people with dementia for years, I wasn't offended. My friend and I both managed not to laugh. I simply agreed with her mom and said that, indeed, it was time for me to be off, as there was much to do. I thanked her for the lovely visit and left.
...Unlike these other serious illnesses, Alzheimer’s disease (AD) and dementia are extremely difficult to categorize into neat stages of progression that are typically used to determine whether hospice care is appropriate. Life expectancy is difficult, if not impossible, to pinpoint for a patient affected by AD and related conditions like vascular dementia, Lewy Body dementia, and frontotemporal dementia.
A study by Ohio State University in conjunction with the National Institute on Aging has shown that adult children caring for their parents, as well as parents caring for chronically ill children, may have their life span shortened by four to eight years. For this study, Ohio State University’s Ronald Glaser, head of OSU’s Institute for Behavioral Medicine Research, and Jan Kiecolt-Glaser, a professor of psychology and psychiatry at OSU, teamed with Nan-ping Weng and his research group from the National Institute on Aging.