Reading Robert Frost.

As I have said before, if Dad is awake and alert when I go to visit him, I really enjoy reading to him. The Bible is a big choice, of course, because he knew it so well during his lucid days, but I often read to him from a collection of various poems, or from Walden. Unfortunately, of course, the last time I visited, his books were missing and I realized I had nothing to read from. Until I also realized that I had my phone with me.

I am the very first to admit (and, in fact, have written in my book) that I am not the most tech-savvy person. I still don't use my phone in the myriad of ways that people much more apt (and younger) than I use theirs. I have a few apps, but don't use them much, although I enjoy checking email and even blogging on my phone. The other day, a friend and I were hanging pictures at my house, and we couldn't both see how they looked because one person was holding them up while the other viewed from a distance. Suddenly, she suggested taking pictures with her phone, which we could then view; a solution that seemed so simple and yet so modern!

Anyway, I have started Googling all sorts of things on my phone, so I looked to see if I could find certain Psalms that I remembered. I found a bunch of links, in both the King James version, and other, more modern translations. I read several Psalms to Dad, which he seemed to enjoy. Then, looking for something else, I remembered Robert Frost.

I've always enjoyed Frost's work - who doesn't? I realized I've only really looked at his more well-known poems. As I brought up poem after poem on poetry sites, I got a better idea of the scope - and beauty - of his work. As I sat there, reading aloud to Dad, enjoying Frost's imagery and cadence and use of words, I felt myself relaxing and really enjoying myself. Every time I looked up at Dad, he seemed to be enjoying himself, too, closing his eyes every now and then as if to better enjoy the words. It was a very lovely afternoon.

If you've never investigated Robert Frost's poems beyond the popular ones taught in school - I urge you to do so. They are both lovely and complex. And if you've never read a Frost poem to a loved one - especially someone with dementia, or who is ill or confined to bed - I urge you to do that too. It might lead to your very own lovely afternoon.

Gone Missing.

I always maintain how lucky I am in the care that Dad is receiving, how thorough and compassionate they are in looking after him and how safe I feel he is. There is not much to complain about in regards to the Adult Family Home where he lives. Something has happened a couple of times now, though, that is starting to bother me - something special has gone missing.

I hear so many stories from caregivers about items that go missing in facilities; things that range in value from money to jewelry to glasses to clothing. My friends' mother had her teeth go missing and also a pair of glasses. She's in a big nursing home, though, and in those places patients wander into rooms not their own and take things, or our loved ones hide things and can't remember where, or clothes get lost in the laundry. And, unfortunately, sometimes there's theft by staff.

It's fairly common in the bigger facilities and most books recommend not bringing anything to a facility that you're not willing to lose. It's still difficult and frustrating, however, to have things taken from our loved ones' rooms. Frustrating and sometimes expensive. I know this, and we were lucky when Dad was in a bigger facility that nothing more than maybe clothes got misdirected; Dad had no hearing aides or teeth to lose, either. What I'm finding hard is that it keeps happening here!

A few years ago it was a quilt I made that I put in Dad's room; it made me happy knowing it was there. One day, though, I stopped seeing it and when I asked, nobody could find it. Ultimately, the owner learned that one of his former caregivers had taken it but he couldn't get it back. This time it's something smaller and less valuable, but still frustrating. I had several books is poetry and essays in Dad's room that I use when I read to him, as well as a nice, old Bible I found. When they moved Dad into another room a few months ago, the books didn't show up in the new one.

I asked the owner about Dad's books and he spent some time looking for them but still hasn't found them. I know he feels bad but I'm still irritated. Now I have to buy some new books, and I'm a little upset about the nice old Bible, too. I guess I should be glad all the pictures in picture frames made it over but he only moved ten feet - how hard can it be to move everything?

 I'm definitely going to tell all future caregivers I talk to not bring anything valuable to a facility - monetary or sentimental. If something goes missing, speak up and try to find it, but be prepared for never seeing it again. I know it's only books, and I guess I've learned my lesson about bringing something I'd miss. I can't say I'm not a little angry though that they couldn't have taken better care. And I still haven't really gotten over the quilt.

Other Dementias Need Better PR!

And speaking of Hollywood Alzheimer’s, as I did last post, what about the other types of dementia; not only in Hollywood, but everywhere? Alzheimer’s is not the only type of dementia there is. A lot of people don’t even know there ARE other types of dementia. In fact, a lot of people don’t even know that dementia and Alzheimer’s aren’t the same thing!

Dementia is not a specific disease; it is the umbrella term, as it were, for a group of cognitive symptoms affecting memory, thinking and social abilities, and what is called executive function. Dementia indicates problems with at least two cognitive brain functions, like memory loss and inability to perform daily activities. While Alzheimer’s is the most common cause of progressive dementia, it is far from the only one. And yet, since Alzheimer’s still has the best PR of all of the dementias, it’s still the one that gets the spotlight in the media.

In the beginning, Dad was diagnosed with Alzheimer’s dementia, by a very well-known expert in the disease. However, to me, with what little I knew about Alzheimer’s at the time – or dementia at all, for that matter – there was always a problem lining up Dad’s symptoms with the official symptoms. Dad’s dementia never fit, it manifested so strangely that it confused me and made things difficult.

He could do some executive functions, and perform some daily activities just fine, and he was very aware of certain things being wrong. He remembered a lot of things, but also repeated the same questions and statements often. As many caregivers find to their chagrin, he had enough presence and lucidity to make it very difficult to care for him at times. He wasn’t bad enough mentally for the dementia wing when we had to move him into it, and yet he had to go in there because he didn’t understand that he shouldn’t wander and run away from caregivers.

The moment I heard about Lewy body dementia, I was relieved to finally have some things explained! I recently ran into another caregiver who said the exact same thing about her husband: none of his symptoms or behaviors matched Alzheimer’s and yet that was all his doctors were willing to consider. Unfortunately, it led to a lot of problems in his care and years of frustration for her. And, since different dementias can react differently to different medications, not having the correct diagnosis can be downright dangerous for the sufferer.

Lewy body dementia - Parkinson’s-related, causing hallucinations, delusions, memory loss, physical limitations, and changes in day-to-day ability and cognition. Frontotemporal dementia – a group of disorders caused by progressive cell degeneration in the brain’s frontal lobes. Vascular dementia – memory loss, loss of cognitive function, and executive functions, caused by mini strokes in various parts of the brain. There are even some types of dementia that are reversible and/or temporary. I also have a friend who went through a tough time with her mother who was experiencing dementia-like symptoms - mixed with some psychotic symptoms - from a combination drug reaction/infection!

While I’m glad that Alzheimer’s organizations are getting the word out there and helping to increase societal and governmental awareness, and increasing research budgets… Alzheimer’s is not the only problem in town. Let’s get the word out about other types of dementia, increase research for all of them, but most importantly, get each sufferer the proper care for their disease.