Sunday, March 29, 2015

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.

Friday, March 20, 2015

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.

Saturday, March 14, 2015

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.



Monday, February 23, 2015

Teepa Returns!

Once again, Teepa Snow is coming to Seattle!

If you are able and you live nearby, I really urge you to sign up for one of these classes. Teepa is the master at interacting with dementia sufferers and can absolutely make life easier and more comfortable for you and your care receiver!

Here is the link to With A Little Help Homecare's site.

Saturday, February 21, 2015

Hollywood Alzheimer's.

I recently ran across an essay that made me simultaneously laugh until I cried – and think. The essay was about romantic comedies and how trite and sometimes annoying they can be. Characters act in unlikely ways, or have problems that are amazingly easily solved, emotional events happen quickly and are wrapped up nicely, a character has a terrible disease and is healed or inspires the world, etc. The writer writes about certain characters having what she calls, “Hollywood Alzheimer’s”, speaking in particular about a film I won't name, but her description cracks me up. 

“…(the actor’s) preppy shagger acquires sudden depth because his dad has Hollywood Alzheimer’s. A gentler variant of dementia, Hollywood Alzheimer’s does not cause you to take a s**t in a shopping center or shout ‘Are you an Arab?’ at the district nurse. Hollywood Alzheimer’s sufferers bark the odd non-sequitur but drift into lucidity long enough to deliver homilies about finding your one true love, and to help their sons nail (the female character.)”

First of all, I thought this was absolutely hilarious, because it is so right on about how Hollywood and the media portray dementia (and it’s also really well written!) I know there have been a few movies with characters with dementia, which I suppose we should be grateful for, but Hollywood really does have this magical thinking about dementia and how it manifests and what it’s like to live with. They always seem to portray it as a gentle withdrawal, a long, sad, stylish goodbye – which it can be, but more often manifests as yelling, delusions, incontinence, and agitation!

Granted there have been a few really good films on this subject, such as Iris and Away From Here, both of which, I believe, portrayed a more realistic view of living with dementia. Kelsey Grammar played a powerful man beginning to suffer from Lewy body dementia on the television show, Boss, the first media mention, I might add, about LBD. And I know there’s Oscar buzz about Still Alice, which was an excellent book before it was a movie. In fact, my local news stations keep digging up families that have been affected by dementia to say how good they think Julianne Moore's portrayal is.

But how soon will the topic of living with dementia sink back into obscurity once the award shows are done or the TV shows are over? And why can’t we consistently show something on the big screen or TV that really seems authentic, and why can’t we make it so the lives of caregivers and care receivers, and the struggles they go through, is out there in vivid color, clear to everyone? Maybe it would bring them some much needed help!

I know, I know, it’s Hollywood, it’s escapism, it’s all fiction. And it is true that it is bringing some sort of awareness to the huge problems of aging, and illness, and dementia, and caregiving – but is it good awareness if the portrayal is completely false. I just wish it could be a little more close to the truth, to how it really is. Does the viewing public really need to be so sheltered from what is a very real life experience – one that they themselves might experience? We should be shown the reality of something that is so life-changing, so that the right kind of awareness can be brought to bear, and the right kind of help – financial, governmental, medical, etc. – can begin.

Wednesday, February 11, 2015


Poor Dad. I went to see him today in his new room. They had put in the new carpeting and it looked great, although it really still smelled like new carpet. When I came in the front door, one of the caregivers saw me and smiled at me and told me that Dad was currently being changed, since it was just after lunch, and could I wait a few minutes.

As I waited, I chatted with one of the other residents who had a stroke; he's made some strides but I don't think he'll ever leave. I also chatted with the house owner, Greg, and we discussed the fact that Dad has lived there for five years! Unbelievable. We moved him in a few days before my birthday in February five years ago, when I had just started dating Paul. Now every time I have a birthday (44!) I remember moving Dad.

The owner told me that a few days ago, Dad had been very energetic and happy, answering with a "Pretty good." when asked how he was, and agreeing with his name when they asked him if that was him. Greg said he'd even seemed to walk more easily. I was so happy to hear this, and thought it lined up with how Dad has been on recent visits - more engaged and smiling. When I was cleared to go into his room, though, I could see right away that Dad didn't look well. He was hunched in his recliner, face drawn, mouth in a tight line.

His eyes were fixed on the wall, and I moved slowly into his line of vision, as I've been doing lately, until I met his eyes. I think I saw him register my face, but his eyes and face didn't change one bit: he looked very unhappy and stressed, and he refused to smile at me or even really let his eyes register my presence. I can only guess that it was because of the ordeal he had just experienced - being cleaned and changed - people performing intimate, private functions in order to keep him healthy.

I can only imagine how it must be to have once been an independent, functioning adult, with control over your body and life, and now you must suffer others to do what we do for babies. The loss of dignity and control must be horrifying, even to someone with dementia who has limited idea of what is happening around them. There are some things I think we always understand - and some things that are too upsetting, no matter what our mental state. The loss of privacy and control. It was obvious that he hated it with everything he has left.

I stayed for a little while, sitting next to him on the little stool I brought, wishing I could do something to make it better. It seemed like the only thing to do was to leave him alone and not impose my presence on him, so he could recover in peace and some semblance of privacy. I hope he is able to get back to the happier, talkative place. I hope he has a good nap this afternoon and wakes up feeling better. And most of all, I hope he is able to forget each time he must undergo these kinds of care.

Monday, February 2, 2015

Gut Instincts.

I wrote in my book that I wished there was more preparation for new caregivers so that they didn’t adopt bad self-care habits, and allow themselves to be pushed beyond their limits.

“There are so many potential dilemmas and pitfalls that caregivers face. There are often no clear cut choices, no set in stone options, and no absolutes, and we must navigate our way as best we can through the difficulties. There was no one to make any rules of give out guidelines, so people just made it up as they went along using who they were and what they heard, learned, and believed. There is not much official or professional training for the “family” caregiver so most family caregivers are thrust into the job without proper training in how to care for a patient or themselves.

I think that, lacking much official structure and guidance, caregiving has evolved into something potentially toxic and self-destructive. Doctors, advocates, professional, and caregivers, all need to fight what caregiving has become. We must teach people how to survive caregiving; and maybe even win at it.”

I really believe this, and I am excited when I hear about hospitals offering caregiving courses for the lay-person in how to give care without giving everything! It would be great if we could create some sort of organization strictly about caregiving that streamlined information and instructions and ways of doing things, and created classes in every city to help caregivers in everything from how to get someone to bathe who doesn’t want to bathe, to how best to speak to and treat your loved one so they don’t become agitated or angry. This might be a pipe dream but maybe someday.

On the other hand, guidelines and trainings aside, there’s a lot to be sad for your gut, and following what it and your instincts tell you, as long as it doesn’t lead you into not taking care of yourself. When I started Dad’s care, I was accustomed to having to cater to my chronic disease and fatigue before everything, so I was well-versed in being “selfish” with my time and energy. (It helped that we had the money to hire other aides.) I was determined that caring for Dad wouldn’t wear me out completely.

As well, I had never had much exposure to anyone with dementia, including how to communicate with them, yet Dad and I did fine together. I found that it was quite easy to let him remain in whatever internal world and time was most comfortable for him, and, since we were not incredibly close, I was able to make the shift from having him as a father, to someone I loved and was caring for. I told untruths, I redirected him when necessary, and reconfigured his environment to assist him. And I did most of this on my own reconnaissance. I pretty much winged it for the first year or so, and we did fine.

So yes, find classes, consult experts and other caregivers and forums and websites, for the best ways to give care for your loved and yourself. Try to get the right information so that you can start out right and hopefully remain in control of the situation. But don’t discount your gut, and your instincts – they can be powerful experts as well.