Sunday, October 27, 2013

English Experiences, Part I.

My husband and I just got home from an extended stay in London, England.  It was a truly great trip, and I have to say I’ve come back changed, even if just a little – the result of living in and experiencing a different culture, and dealing with my chronic illness, and duties as a caregiver while being there.  The purpose of the trip was partly as vacation and something we’ve wanted to do since we met, but it was also something of a working holiday for both of us.  I went with the desire to see the dementia/caregiver/aging/disabled person/hospice experience in the UK, and how it might be different.  I’ll be writing several blog posts about my adventures.

In the last few years, pretty much since I became Dad’s caregiver, I’ve worried every day about getting that call.  It’s something every caregiver can understand.  We all flinch just a little whenever the phone rings, because we’re worried its going to be about our caretaker in some way – some person to tell us the worst has happened and our presence is needed.   Every time I’ve gone out of town in the last seven years, I’ve toted my phone with me everywhere, and have quietly dreaded getting the call – and, occasionally, I have.  On my first Thanksgiving with my then-boyfriend’s family, I got the call that Dad had an infected boil and needed emergency surgery.   On the trip to Hawaii when I got engaged, I got a call about another illness Dad was suffering – fortunately, this one was less severe, but it still affected the trip.  

The entire six months that we spent conceiving of, planning, and organizing this trip, I thought about Dad and what I would do if I got that call.  I thought about how I would go about arranging for a phone so his caregiver could contact me, and what I could do in an emergency if I needed to fly home.  This was a wonderful trip of a lifetime that I was planning, and yet I couldn’t enjoy the prospect of it fully because I was always thinking about worst case scenarios.

When we got there, I got a UK SIM card for my phone within hours of landing so that I could receive calls and check my voicemail until such time as I could contact Dad’s caregiver with the number.  When I did finally reach him, I felt some of the weight slide off my shoulders, knowing that he could now talk to me as needed.  But the weight never fully slid.  Every time I checked my voice mail and there was no message, I breathed a sigh of relief – until the next day when I checked it.  Every day that went by without a call about Dad, I was happy, until the time when we were getting on the plane to fly back home.  In the end, I never got the call, for which I am deeply grateful.  I am also deeply grateful for the wonderful care he receives that made it possible for me to even contemplate going so far away.  

Being a caregiver with a loved one always on my mind certainly didn’t ruin our trip – I still had fun and learned a lot – but it absolutely affected it, and I know this will be the reality for the rest of Dad’s life.  I’m still waiting for the call – I will until Dad leaves this world – and I know caregivers everywhere know exactly what I’m talking about.  

Friday, October 25, 2013

Are You Tatooed? asked me to post this in regards to their new campaign.  I, personally, don't have any dementia or Alzheimer's-inspired tatoos, but I think it's a fun idea.  Go online and check it out!

In honor of National Alzheimer's Awareness Month, Healthline is inviting individuals to send us photos of their Alzheimer's-inspired tattoo along with a brief description of the inspiration behind the tattoo.

We will be compiling all of the submissions and sharing them with our Facebook page:

Saturday, October 19, 2013

To Your Health.

I just saw a post on the blog, Alzheimer's Reading Room, which I link to here:

The post quoted a study that refuted the belief that giving care to an ill family member can adversely affect the health of the caregiver, and possibly shorten their life expectancy.  The study found that caregiving actually increased life expectancy and led to better self esteem among the caregivers studied.  This goes against other studies I've seen as well as traditionally-held, and anecdotal reports from caregivers I've spoken to.  There are also statistics that show many caregivers dying before their caretaker!  What are we to believe?

Many of the caregivers I talk to whose duties are over due to the death of the caretaker reported that they fell ill with sometimes serious illnesses almost immediately after the death.  I also hear stories from current caregivers about serious injuries, autoimmune diseases, and worsening of chronic conditions like diabetes and heart disease.  Problems that they aren't always able to address due to the time and/or money constraints of being a caregiver.  These stories seem to refute this study.

The whole time I lived with Dad, I worried about my own chronic illness and whether it would become worse while I was his caregiver.  My duties were not too onerous owing to the fact that he was still fairly lucid at the time, but the extra housekeeping, cooking, shopping, walking, and care was a bit of a strain.  I was also worried that the emotional repercussions of caring for him after he had neglected to care for me would cause me to become ill.  I definitely navigated a difficult balance between my duties and desires to help him, with the necessity to maintain my own health.  I was lucky enough to be helped along the way by my therapist and my doctors. The fact that I was able to find two excellent facilities to care for him as his illness worsened helped as well; there is no way I would have been able to withstand the physical and emotional exertions of caring for him now that the disease has worsened and he needs much more care.

I urge every caregiver I speak to to take care of their own health, to look after their own well-being, and not to wear themselves down.  I also know that everyone I say this to may, or may not, be able to follow my advice because their duties are just too much.  While I'm glad that studies of caregivers are being done at all - lord knows we need all the help and information and attention we can get - I also know that they don't always tell the whole story.  Statistics have a funny way of supporting almost every viewpoint depending on how they are interpreted.  Studies like this need to be weighed against the very  real responsibilities and problems of caregivers so that the whole story can be told; and we need to continue to make sure that caregivers are getting all the support they need.

Monday, October 14, 2013


Whoopi Goldberg has recorded a new informational video about Lewy Body Dementia that the LBDA has asked we bloggers to post on our sites!  I hope you enjoy it!

Sunday, October 13, 2013

Halloween Re-dux.

 Because I am out of town this week, I am re-running last years October/Halloween post, which I hope you will like.  There will be a new post next week about my experiences with British hospice/dementia care.  Enjoy!

It's Halloween, one of my most favorite holidays, and it always makes me think about both my Mom and my Dad. I used to love to dress up and every year, months in advance, I would decide what I wanted to be and my Mother would make my costume. It was pretty amazing now that I think about it - she was very creative and could put together most of the costumes I asked for. Granted, I usually wanted to be something like a gypsy or Indian princess, or something, but it was still pretty fantastic. I used to love the way Halloween let you be different than you were; you could be anything or anyone you could imagine yourself being. In Third grade I was Wonder Woman, complete with eagle-covered, red bustier, bracelets and lasso. It was great - god, I loved that costume! One year she transformed my sister into Princess Leia with a silky white, seventies-style dress she had, a silver belt, and even the two hair rolls.

Mom actually loved Halloween, every year for dinner, she made hotdogs and her special donuts, with apple cider. She would make sure I got my costume on, including the layers of tights, long sleeve shirt and even jacket, that no kid wants to wear, but which every mom insists on, because for heaven's sake, its cold out there! My Mom was very petite, about 5 feet tall, with little hands and feet. She was so small, and she loved Halloween(and candy) so much that she would dress up, making sure to cover her face and hands, and go trick or treating herself! Occasionally, Dad and I would see her going from house to house and he would never admit that it was her, even though I was sure it was. It was just one of the funny things she did.

Every year, I would wait for my Dad to get home, and he would take me and my best friend out trick or treating. We lived in a neighborhood on a really steep hill, and we would gradually make our way up the hill, stopping at each house. It was a special thing that we did together, something that didn't happen often since he was usually so busy with work and other things. I think Dad really enjoyed taking me out and seeing me knock on each door while he waited at the end of the driveway, and I knew that for at least that one night the dark moods and depression and disappointment he felt so often through the rest of the year would be banished and we would have fun, and connect.

When my stepdaughter was little, I loved to take her trick or treating every year. We had so much fun and it was a way for me to connect with my Father and the fun we used to have as we went from door to door, saying the traditional words to fill my bag with candy. My mother is gone now, and I never miss her more than on these holidays that she made so special. My father is still with me, in body if not in spirit, and although I'll go see him on Halloween to bring him some little candy bars, the man who used to keep me safe in the darkness as we flitted from house to house is gone.

I have complicated and sometimes ambivalent feelings about my childhood and my parents; things were often very dark and confusing for us. But I'm so glad to still possess these moments of gladness and fun, these memories of how my parents tried to be there for me, in ways as simple as making a costume and taking a little girl trick or treating.

Wednesday, October 2, 2013

Flight Controls.

We were waiting on a plane to fly home from Las Vegas a few weeks ago when my attention was caught by the wing of the plane.  I sat there, watching idly out the window as the pilot tested the flaps and revved the engine, and it made me think of Dad.  He was an engineer with Boeing for twenty-five years, working on many different planes and many of the different systems that make up a plane.  For a few years he worked on the Black Box, then moved to flight controls, and even to testing, going up in the prototype planes all day while the pilots took off, landed, circled, tried to get lost, and generally tested the systems he had designed.  In fact, as the dementia moved in on him, this was the one thing he remembered about his work and he would tell me the story over and over.

Every time I flew with him, he would check out the airplane and tell me about the various systems and workings.  His favorite moment was always when the plane was racing down the runway, preparing to take off.  It seemed as if he knew everything there was to know about planes.  One time I asked him about designing and changing things and asked how they knew something would work or not.  He explained about the calculations involved and the physics and math formulas that would tell you whether or not a system would work or a wing could take weight and stress.  He told me that before computers, of course, they had to compute the formulae by themselves with the help of slide rules and blackboards.  As I sat there, I remembered that conversation and also that when I cleaned out the house I had unearthed his slide rule – a strange, archaic, yet fascinating piece of machinery that I could never hope to decipher.  

Plane wings are a modern marvel, actually.  Flaps go up, sections come down, a wing’s entire structure can change so that flight – and landing – can occur.  A wing can become small and aerodynamic to promote quick motion, or it can become bigger and bulkier to aid slowing down.  As I sat there, a few questions occurred to me – things about structure and flight I was suddenly curious about.  And for a few seconds I thought to myself, “I’ll ask Dad, he’ll know.”  And then, of course, I remembered that he wouldn’t.  All of that knowledge and understanding, gone.  We lose so much when we lose someone to dementia - all of their intelligence and knowledge and memories.

 From now on, I’ll have to find out about planes and how they work on my own – thank goodness for Google – but it still makes me sad that Dad will never talk about flight controls again, or the joys of sending a plane off course to test the autopilot, and he’ll never experience the excitement of take-off one more time.