Join us at Eventide for "Living with Alzheimer's" presented by Hospice of the Red River Valley and the Alzheimer's Association of Minnesota/North Dakota. The event will be held September 13th from 7:00 to 8:30. There will be lots of time for questions. Hope to see you there!
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.
Forgiveness, or the lack thereof, can loom large in the life of a caregiver. Forgiving doesn’t mean forgetting. That is rule number one for people to remember when they are working toward crafting better relationships with family members and others whom they care about. Forgiveness can have enormous benefits for the health of the person who does the forgiving. Considering that negative thinking can be disastrous to your own health , you may want to work toward the positive habit of forgiveness. Here are some people that you may need to forgive along with reasons why you should.
As a seasoned caregiver of multiple elders, I can choose to torture myself with my perceived failures at being a perfect caregiver, or I can choose to forgive myself for being imperfect, and recognize that I did the best I could at the time. You have the same choice. Much like an adult who realizes that he or she has a "wounded child" living inside – a child who suffers from unearned self-blame or low self-esteem because of life events – many adult caregivers carry the guilt from their "infant" caregiving years to their grave. They spend precious time thinking about how they should have understood someone's needs better, could have been more patient, would have done any number of things better, if only they knew then what they know now.
This post is about another study, my friends, but this one is more personal for me. A report in the February 25 issue of Archives of Internal Medicine titled "Study examines antibiotic use among nursing home patients with advanced dementia," reminds me of a situation with my mother-in-law. Alice was in a very good nursing home and flourishing. Before she was admitted, her life in her condominium - no matter how much attention and care we gave her - had become unsustainable. She was afraid and paranoid. She couldn't look out the windows because she imagined bad things, so she kept her shades drawn all day. She was even afraid to retrieve her newspaper from the hallway. She wouldn't go out.
..Fridays at the nursing home were very popular. Regular music groups would come by at the week’s end to play old favorites for the residents, always filling the room with cheer. My dad, who had dementia caused by failed surgery, loved the live music but also responded well to CDs of his favorites from the big band era. I know that his quality of life during his last ten years would have been diminished without music to help override the effects of dementia.
It’s been nearly a decade since I began sharing my personal caregiving stories with the public, first via the book “Minding Our Elders: Caregivers Share Their Personal Stories” and later through a newspaper column, on my own blog and then contributing to major websites such as Healthcentral.com/alzheimers. When I first started sharing my stories and looking for others who had similar tales to tell, people tended to be reticent about speaking up. Now, sharing caregiver “in the trenches” stories has become a major part of caregiver self-care and even survival.
Some situations, of course, leave no room for laughter. But some tough times can offer moments of levity if we choose to recognize them. My sister, Beth, and I experienced what to some people may be a rather macabre situation during the three days our mother was going through the death process. If we hadn’t maintained our senses of humor, I’m not sure how we would have handled those sad, seemingly endless days.
While Alzheimer’s specific drugs may help slow symptoms for some people, they also may increase the risk of hip fractures, fainting, urinary problems and other health issues. Most researchers now think that a time comes when many medications for the elderly are no longer beneficial and may be harmful.
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