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.
Validation is a term often used to describe different approaches to helping improve the quality of life of people living with Alzheimer’s disease and other types of dementia. Webster defines the word as “recognition or affirmation that a person or their feelings or opinions are valid or worthwhile.” I believe that all caregivers who practice any form of validation when caring for a person living with dementia aim for the same result. They want to help the person maintain their sense of self, and they want to lower the anxiety and stress that stems from the person living with dementia losing the ability to readily understand the world around them.
The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards
Dear Carol: My 83-year-old father died recently. He had been in a good nursing home for three years, and there were no changes I his condition that I could see, yet he suddenly died. I keep second-guessing the nursing home staff for not warning me, which is probably unfair, but I can’t help but feel that they should have had some clue to Dad’s impending death. I’m not saying that they were neglectful in any way, and certainly they weren’t responsible for his death. I’m just wondering why they didn’t pick up on what was happening so that we would have had some warning. Shouldn’t they have been able to let us know that he may only have a week or a month to live? Should I ask them for an explanation? – Pat
As you watch your parents or other beloved elders age, sometimes worry becomes inevitable. Should they have housing upgrades? Can they continue to live independently? Your intention isn’t to take over their lives, but you may genuinely want to start the conversation about possible future changes. How do you do this without causing a backlash?
...As with most types of dementia, family members are the primary caregivers by default, at least at the beginning of the disease. They are usually the people who notice that something is not right with their spouse or parent. Again, like Alzheimer’s and most other types of dementia, care needs escalate with time. This ongoing care can be physically arduous and emotionally demanding.
Jeanne Gibbs, whose husband had LBD, illustrates her husband’s state of mind with the scenario below, which she handled like a pro:
Sometimes (but certainly not always!) the cause confusion in dementia can be determined and dealt with.
I worked at home to support us. One day my husband, Coy, was waiting for a rain-delayed baseball playoff game, and he came into my office...
Ebook on sale this week for $2.99 in honor of "the longest day" and Alzheimer's Authors
An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol Bradley Bursack also has an excellent website devoted to the elderly and their caregivers. - Carol Heilman