The title of this post sounds ominous, doesn’t it? Allow me to explain why I used it.
I’ve made several mentions over the last year plus of my grandfather’s ill-health. Part of what is affecting him is dementia that worsened steadily since he fell two summers ago and broke his arm. In today’s world, who doesn’t know someone with dementia or Alzheimer’s? I’ve personally known too many. My great uncles, my grandfather’s brothers had/have it. My beloved uncle-like neighbor had Alzheimer’s. And I think my grandmother may be coming down with some form of one or the other. With these thoughts in mind, I stray this week from the usual library, archive, and history theme of this blog. It is important to discuss these issues from time to time.
We all know dementia and Alzheimer’s for its classic sign of increasing memory loss. What you may not realize are the other sides of the illness. Some patients can become docile, others violent. They are easily upset. Sometimes they live in the past or think people who are dead are still alive. Often, they forget to care for themselves-basic things like eat or change their clothes. They also frequently ask the same questions over and over. Someone else must help them manage and see that patients receive their medications and make regular visits to the doctor. And don’t think just placing the individual in a nursing home will solve all the problems; it won’t. Sometimes the staff is too busy to see to all needs and some will not transport patients to doctor appointments-families must.
So why did I pick the title for this post I did? Growing up, I was taught, like so many others, that lying was bad. However, when dealing with someone with dementia or Alzheimer’s lying becomes necessary-a necessary evil. After all, is not more humane to lie than tell the truth than have to deal with an extremely upset person? One who may even become violent and need sedation? I know it seems like I lie several times during each visit to my grandfather now that he is in a nursing home. “Yes, Grandma was here yesterday” and “You’ll get to go home when you are stronger” occur each time even though he’ll never go home and his own wife-my grandmother- doesn’t frequently visit. Sadly, as much as I hate lying, I see the necessity. It’s a horrible and powerless feeling to be there when a meltdown occurs. Sometimes, no amount of calming words, handing out Kleenex, and rubbing calming circles on a person’s back will suffice.
Then this downfall and the lying that come with it leads to another interesting question: Does a person suffering from these illnesses die when they cease to be the person we knew or when their body follows their mind? I ask this because dementia and Alzheimer’s changes a person and over time they become unrecognizable as the person we once knew. That in itself is a heartbreaking process. When my uncle-like neighbor passed in January, I know I didn’t mourn as must as I should have at the funeral. I put a lot of thought into why and came up with this: the initial diagnosis and downfall in all cases I have experienced were heartbreaking, as time went on, the numbness set in instead. It’s as if I mourned their loss with the diagnosis and initial downfall instead of at death. Since many of you likely know someone with Alzheimer’s or another form of dementia, have you noted something similar?
Now keeping with my desire to be a librarian and not just a library-degree holder, I cannot close this post with just a philosophical question. I need to provide tried and true facts, especially since November is National Alzheimer’s Disease Awareness Month and National Caregiver Month. In the United States alone, there are more than 15 million Alzheimer’s and dementia caregivers. With that in mind, here are some helpful resources about dementia and Alzheimer’s and coping with them.
- Alzheimer’s Association Website.
- “Alzheimer’s Disease and Other Forms of Dementia” from WebMd.”
- “Alzheimer’s Disease Stages” from the Alzheimer’s Association Website.
- “Dementia” from MedlinePlus.
- “Alzheimer’s and Dementia Caregiver Center” from the Alzheimer’s Association Website.
- “Diseases and Conditions: Dementia” from the Mayo Clinic.
- “Living and Managing with Alzheimer’s” from WebMD. Also works for dementia cases.
- “Types of Dementia” from the Alzheimer’s Association Website.
- “What is Demintia?” from the Alzheimer’s Association Website.