Great Article!

Here is a link to a great article written by a woman who is suffering from dementia.  She is at the beginning stages and really details who it is feeling to progress through the disease.

http://www.azcentral.com/12news/news/articles/2012/01/21/20120121alzheimers-disease-early-onset.html

I Got It!

I went to visit Dad this week and you may imagine how delighted I was when I arrived to see him: 1) sitting outside in the fresh air, sun, and flowers, and 2) wearing the little cowboy hat!  I was able to take a picture this time.

I never know quite what to think of the progression of Dad's disease.  I'll visit several times and he'll be sleeping and frail-looking and the caregivers will tell me he doesn't want to walk anymore, and I'll think that it can't be much longer before he shuffles off this mortal coil.  Then I will come over and he'll be sitting up with a little cowboy hat on, feeling kind of cranky with his arms crossed.  With this disease, who knows?  And that's probably one of the most difficult things about it - the unpredictability of it all.

I was able to speak with Greg the owner and asked him to share with me all the symptoms and behaviors that Dad was exhibiting, even the unpleasant ones, because it helped me gauge the progression of the illness.  I know what I see but hearing about the fact that Dad still gets angry a couple of times a week, hates showering and being managed, and wakes up agitated in the night lets me judge, with some accuracy, where he might be in his journey.  None of us can say with any certainty how exactly the disease will progress or how long it will last, and that makes me sad and frustrated.  I don't want to lose my dad, but I do hate to see him living like this.

Get Thee to a Website!

I've been thinking for a while now that it might be time to get myself a website. My blog was named for and begun in order to support my first book and in the end it took on a life of its own.  I am truly grateful for the support and attention the blog has received and I plan to continue blogging. 

The fact that I have now written a second book about caregiving, which I hope to publish in the next few months, plus the fact that I am involved now with different organizations, activities, and support groups, each with their own blogs or pages or whatever, made me think it might be wise to form one central location for everything I do.  Ladies and gentleman, I present to you, my new website!  www.joyincaregiving.org

I have long used my blog as an informal website, loading it with a lot of great links, resources, and information.  I have transferred all of that info over to the website, and my plan is to pare down the blog so it's just a blog again, where I can share my thoughts and feelings about my dad, caregiving, and end of life.  All blog posts will be instantly linked and readable from the website, as well.  My blog will still be up and running as is for a while, but my hope is that the website will become the center of activity.
 
I encourage you to stop by the new site for a visit, and recommend it to your friends, family, or anyone else who needs resources and support in their caregiving lives.  And thank you again for all your kindness and support.

Do Dementia Sufferers Dream of Forgetful Sheep?

The above is a rather obscure, and geeky, play on the title of the book that became the movie Blade Runner, with Harrison Ford.  The book's title was, Do Androids Dream of Electric Sheep?, and I've always really liked it.  It occurred to me the other day when I was watching Dad sleep.  He sleeps so much these days, as do other hospice and dementia patients I've known, whiling away the hours in his recliner chair cradle, escaping from the unpleasant realities of his present-day world.  It makes me wonder why - is he sleeping so much because of the illness, or because he would just rather not be conscious anymore?  Perhaps its a combination of both.  Regardless of cause, I wonder what his dreams are like, or whether he has any at all.

As I watch him, I see the rapid movement of his eyes under his eyelids and it makes me wonder about what is going on behind them.  Dreams are our minds way of processing, making sense of, and tucking away the events and emotions of our lives - therefore, if our lives are empty of most experiences and emotions, what are the dreams for?  Is the mind still processing when there isn't much to process?  I know that Dad still experiences things throughout his day; meals, walks around the house, conversations with the caregivers, toileting and showers.  Are these enough to figure in his present dreams?  I imagine the mind, even one that is impaired, still needs to process what it observes and what is happening to it, but  I really don't know how much stimulation it requires.

As I watch, I also see him twitch violently from time to time - legs stretching out tensely, arms shifting, shoulders tightening.  Once again I wonder, is it the dreaming state - is something in a dream causing him to move and shift?  Sometimes my husband moves around or sword fights in his sleep - is Dad running, or swimming, or wrenching on an engine? It is, most likely, the Parkinson's making itself felt, and I hope it's not too uncomfortable when his muscles seize and twitch - but I will never truly know.  It is probably the dementia pulling him into unconsciousness, as well, slowing his system and fogging his brain connections into twilight. 

I have vivid dreams, in full techni-color with lots of action, and although sometimes they are unpleasant, I would miss not having them anymore.  There is a part of me that hopes he still dreams, and that in them he feels free again. I hope he is somewhere lost in the past, dreaming about being a young husband and father: building the house we lived in for forty years; fixing cars and everything else that broke down; designing airplane components and technology; swimming and sailing in the summer; spending time on family vacations with my mother and my sister and me; watching us grow up.  Perhaps we're not in any of the dreams, and he is imagining himself as a daredevil pilot, soaring through the clouds, untethered by the demands of work and family life, unaffected by the illness that his stolen away his reality.

Think Of This As Reading Aloud.

I'm co-facilitating a bereavement group for six weeks, and at each meeting my partner and I find readings that will evoke, comfort, or inspire our participants.  During one of my searches for appropriate material, I found this poem and liked it a great deal, partly because it spoke to me about what we as caregivers and people living next to dementia experience.
From one day to the next your care-taker can become a different person, and perhaps lose more and more of what they were.  We are all, or will be soon, mourning the person they used to be, and remembering the last times we saw them as they were.  This poem urges me to think, and in some way, care about, all of the people around me.

The author is Ellen Bass.

IF YOU KNEW
What if you knew you'd be the last
 to touch someone?
If you were taking tickets, for example,
at the theater, tearing them,
giving back the ragged stubs,
you might take care to touch that palm,
brush your fingertips
along the life line's crease.

When a man pulls his wheeled suitcase
too slowly through the airport, when
the car in front of me doesn't signal,
when the clerk at the pharmacy
won't say Thank you, I don't remember
 they're going to die.

 A friend told me she'd been with her aunt.
They'd just had lunch and the waiter,
a young gay man with plum black eyes,
joked as he served the coffee, kissed
her aunt's powdered cheek when they left.
 Then they walked half a block and her aunt
dropped dead on the sidewalk.

How close does the dragon's spume
have to come?  How wide does the crack
in heaven have to split?
What would people look like
 if we could see them as they are,
soaked in honey, stung and swollen,
reckless, pinned against time?

From: Ten Poems to Say Goodbye, Roger Housden, Harmoney Books, 2012

Reading Aloud.

I've always liked to read aloud, although I don't get much chance to do it.  When I was in school, I always hoped I would be the one to get chosen to read a paragraph or part out loud.  I try to limit how often I read aloud an interesting or funny book passage to my husband as I know how annoying it can be, but I still do it.  When I was making hospice visits, I found that one good way of entertaining or soothing my patients was to read to them - either from a book or Bible they had, or work of poetry or devotions I brought with me.  All of this, and yet I don't know why it took me so long to realize that I could read to my dad as a way of connecting with him.

I went to see him last week in the afternoon and, surprisingly, he was awake and looking at me as I walked into his room.  He did not seem happy; in fact, he looked pretty tense and down right pissed off.  Over my last few visits, I have noticed a certain crankiness during the moments he was awake, so I figured maybe we had entered a stage of him being upset and aggravated at every thing, but I thought I'd at least try to cheer him up a little.  I sat directly on the arm of his recliner so that I was close to him and I started to stroke his arms and rub his hands, which I've been trying to do each time I visit.

Every time his eyes moved around to mine, I smiled and said hi, while continuing to gently rub his hands - and it worked!  He definitely started looking a little less cranky and a little more comfortable; I even caught a little bit of a smile, so it seemed like the touching was really helping.  And why wouldn't it?  I'm pretty sure most of the physical contact he gets is when someone is bathing, dressing, or moving him, which probably gets tiresome.  I moved over to the bed for a moment and caught sight of the small Bible on his table and thought to myself that maybe reading to him from it would be soothing.  As a healthy man, he read the Bible daily, so I thought that on some level he might recognize at least the spirit of what he was hearing.

It's been a while since my Sunday School days, and I no longer remember what stories and verses are where, but you can't go wrong with Psalms, especially the 23rd, so that's what I read.  I perched as closely to him as I could and read to him for about a half hour, looking for the most peaceful and lovely verses I could find.  As I read, I noticed him watching my face closely - almost as if he could understand what I was saying - and eventually, his eyes closed and he drifted off to sleep.  I was glad to see how much more relaxed his face and body looked than when I had arrived. 

I hope the words soothed him somewhat, or if not the words, then my voice.  It felt like a blessing to be able to do it, and watch him gradually relax. Next time I think I'm going to bring some poetry as well, in hopes that it will have the same soothing quality.  It always amazes me how the simplest, most inexpensive and easy acts - something like reading aloud to a loved one - can have the most profound effects.

Angry and Heartbroken...

Well, I'm having some feelings about Dad's AFH.  For the most part, I find it to be an excellent, family-run organization with people who really care about Dad's health and welfare.  In the last few weeks, however, I've been really angry at some things that are, admittedly, probably fairly unimportant, but which seem important to me.


A few years ago, I brought over one of my hand-made quilts for Dad, because I wanted him to have something I'd made to brighten up his room, even though I knew he wouldn't really notice it.  I didn't make the quilt specifically for him, but I did make it - in fact, it was the first full quilt I ever made - and it made me feel really good to have it in his room.  I put it on his bed, but then noticed the next time I visited that it was folded on a chair.  I figured they were worried about getting it messy by using it too much so I left it on the chair and didn't bother them.  The next time I came I couldn't see it and had to search through his closet for it.  Although I usually try not to interfere with what I know has to be a tough job caring for Dad, I explained that I at least wanted to see it out in his room, so we put it back on the chair. 


A week ago, Paul and I stopped by and the quilt wasn't there, nor could I find it anywhere in his room.  When I got home, I called the owner and asked where it was and he promised to look for it.  He also told me they were planning their yearly summer BBQ and asked what weekends worked for me.  I really want to attend these events and I wasn't able to go last summer, so I told him I absolutely couldn't do June, but was available anytime in July.  The next thing I knew, I received a call from him last Wednesday, embarrassed and uncomfortable, telling me they just couldn't find the quilt at all!  He was still making some inquiries but had no idea where it had gone.  This quilt has been sitting on the chair for a year and a half, and then it somehow vanished.  I was devastated. 


 Then, to add insult to injury, he informed me that the BBQ had been planned for Saturday the 29th - in three days, to be exact.  I was speechless.  I told him that I had made it very clear how much I wanted to go and that I wasn't available in June and that now I was very, very disappointed.  Again, clearly uncomfortable, he hemmed and hawed, saying that because of visitors they were having, other plans, etc., etc., they had decided to have it that Saturday - one week after telling me they were just starting to plan it!  I just felt betrayed, and so disappointed, and angry that they had lost my quilt.


What do you do?  Obviously, we are paying a lot of money to keep Dad there, and I would expect that they would try to figure in our needs and wishes with their plans.  I would also expect that they would take care of Dad's belongings.  I also realize that they have a tough, physically demanding, often tedious job; that they have other residents and families to think about; and that they have to consider their own needs.  The thing is - I just feel betrayed that they couldn't do better for us, and the worst part is - I would make him another quilt, but my arthritis has gotten to the point where its really uncomfortable to quilt anymore.


From the people I counsel and the stories I hear, I know that these issues figure as very, very minute against the problems other people are having with their loved ones - whether it is poor facilities, uncaring caregivers, or the tough job of homecare.  One missed BBQ and a missing quilt.  But to me, this is really hard, and I feel angry and sad.  It means a lot to me to spend a little time with Dad and also to know that when I'm not there, that something of me is; in this case, a quilt I made and placed carefully in my father's room.