The Simplest Pleasures Are The Best.

We've been having some lovely sunny weather here in Seattle the last few days, so I wasn't surprised when I pulled in to the driveway of Dad's AFH and saw him sitting at the patio table with a few of the other residents.  The thing that did surprise me was the jaunty, straw cowboy hat he was sporting.  (I could kick myself for not taking a picture; I'm still not used to the whole camera-in-my-phone thing.)  I'm not sure if his caregivers were afraid he would get too much sun or what.  He was bundled up in a jacket, too, so perhaps they were afraid he would get cold.  Anyway, everyone looked happy as they enjoyed the warm sun and the fragrance drifting down from a nearby cherry tree.

I greeted Dad my usual way - looking directly into his eyes as I said hello, wondering as always if I had truly seen or just imagined a spark of recognition in his washed-out blue eyes.  The caregiver moved some chair around so that I could sit next to Dad, and I began to relax, enjoying the heat of the sun on the top of my head and the occasional soft breeze.  The caregiver and I began to chat about the nice weather and Dad and how he was eating and walking. I noticed that the woman at the end of the table, Mimi, had a thick book she was focused intently on, although she had looked up briefly to say hello when I sat down.  It took me a while to realize that in the whole time I was there, she never turned a page.  Another gentleman slumped in a wheelchair wore thick, dark glasses against the brightness, but seemed determined to add to the conversation - adjusting his hearing aides repeatedly and throwing in the odd, random sentence.   After a little bit, the caregiver got up and went inside, returning with another of the residents in a wheelchair, sporting her own little jaunty hat and a big smile at being outside with other people.

As the caregiver and I talked and laughed, I could tell that Dad was listening in - he likes to hear chit-chat and laughter around him and he chuckles along with everyone else even though he probably doesn't understand.  We talked about Dad's job as an engineer and the fact that he loved airplanes and classic cars.  The caregiver was impressed that Dad had owned a Corvette!  He told me that Dad still had occasional chatty periods, although he was mostly quiet.  I squeezed Dad's arm and said that he had always been a quiet sort of person, but that I always felt there was more going on behind his eyes then he let on.  I caught a little expression on Dad's face just then that made me believe I was probably right in that regard.

We continued to sit together, basking in the sun, watching pink and white petals drift down from the tree - Dad in his cowboy hat, Mimi not-reading her book, Chuck making comments...  It was a pleasure to rest and be with my dad and his housemates, and it struck me on the way home that, regardless of illness, age, or advanced dementia - simple pleasures are still valuable.  The caregiver and I didn't have dementia, yet we weren't enjoying ourselves any more than the others.  Old or young, cognitively challenged or lucid, sick or well - it doesn't matter.  The feel of the sun, the smell of Spring, the opportunity to sit outside again after five months of cold and rain...we all value that no matter who we are.

Information Is A Good Thing!

I have some new information about a few respite facilities in our area, as well as a new-ish website focusing on living with Alzheimer's.

The following is a link to the Northshore Senior Center, a great location that provides activities, social interaction, and respite day care for caregivers and their caree's.
http://www.northshoreseniorcenter.org

A new friend of mine located this next respite and care facility and was really pleased with their services and how they treated her husband.
http://northwestcare.com

This new site, I believe in the UK, contacted me recently.  It's focused on Alzheimer's dementia but I think still has some great information for all caregivers. I hope you find it helpful!
http://practicalalzheimers.com/

It's Group Time.

First Caregiver support group tonight in Seattle! I'd love to see anyone who can make it - details on the sidebar.  6-8pm at Studio Evolve Pilates and Bodywork.

Books, Books - Part Deux.

I've probably mentioned this book before but I don't think I've done a formal review, so here it is!

A Caregiver's Guide to Lewy Body Dementia by James and Helen Whitworth is the definitive book about LBD and how to care for someone who has it.  The Whitworth's were instrumental in forming the Lewy Body Dementia Association, and James' first wife suffered from the disease - so they know whereof they speak!

I consider this the Bible of LBD care; my copy is underlined, written on, and has sticky tabs poking out from the side to mark some of the most important information.  I recommend it to almost every single caregiver I speak to as being probably the best resource they could get to help them in their situation. 

The Whitworth's really understand LBD, as well as it can be understood, and they know what it's like to be caregivers.  They go through most of the stages of the illness, the symptoms and behaviors, and what the end of the disease looks like.  They also list the medications that are really contraindicated for LBD, including antipsychotics and anesthesia, and which medications might help the disease. 

All of this information is conveyed in a clear, straightforward style; neither patronizing nor overly complicated.  It is not overwhelming with it's information, and it really helps people know what to look for and what they might expect from the disease.  It is as if you are sitting and having a conversation with someone who knows a lot about LBD.

Regardless of whether you and your family are newly affected by the disease or have been dealing with it for some time, this book can help you out.  Order it on Amazon today, or go to their website, listed on my sidebar,  lbdtools.com

Making Faces.

 (Picture of Dad when he was still mostly lucid, on one of our adventures.)

I crossed the bridge to pay Dad a visit today and got there not long after they had finished lunch.  I know Dad is usually a little drowsy after lunch and seems to like to spend a few hours snoozing in his lounge chair.  Due to my schedule, I'm usually there in the afternoon, and since he's sleeping, I generally sit there with him quietly and just enjoy his company, without feeling the need to wake him up or engage him.

The last few times I've visited have been really different, however, in that he's been much more engaged and alert.  He has (sort of) tried to talk to me in response to my talking to him, his face has been more mobile, and it even seems as if he might recognize me a little.  The last time I visited happened to coincide with a visit from his doctor for a quick check-up.  His doctor is an older, diminutive gentleman with a HUGE personality; he's very kind and funny, he just really fills up a room.  So all together in Dad's small room, we had the doctor, talking and checking on Dad; Greg, the owner, talking to the doctor; and another young man, Greg's son, who looks after Dad.  So the room was quite busy and loud, but Dad seemed to love it, looking at everyone and sort of smiling at the talk and laughter.

The young caregiver, who I could see was very affectionate with Dad was leaning over the chair and put his face really close to Dad's face to see in his eyes, one of the problems the doctor was checking on.  As I watched, Dad did something that enchanted me; his eyes focused in on the young man, opened wide, and his face moved into a close approximation of the one-eyebrow-up-one-down-sardonic-but-laughing-look, he used to do all the time!  I hadn't seen him do it for a long time, but it was a joking face he used to make with me or Del.  I commented on it, surprised, and the caregiver said that they had discovered he would do it when they looked closely into his face; as a way of teasing them!  (Dad had always had a finely-honed, but largely secret, sense of humor that not many people saw; with the onset of the disease, he became a terrible tease!)

It was just really nice seeing him so engaged, doing the facial mugging he used to do when he was a little more lucid.  It was like having him back just a little.  When I walked into his room today, I could tell right away it was going to be a different sort of day.  He was much more withdrawn, a little cranky even, and clearly wanted to take his nap without being messed with!  I was more than happy to let him do his thing while I kept him company, but I have to admit I missed that little spark I had seen only a few weeks ago.  I have no idea how many more of these sparks I'll see, if any, which makes me sad.  I'm trying to treasure each time, not sure if it'll be the last.  It's a hard thing to live with, but it's all at the whim of Lewy Body Dementia.

Books, Books, Books!

I read so many great dementia, bereavement, and caregiving books that I think could really help people, but I keep forgetting to review them here!  So I'm going to try to review regularly some of the books I've thought were definitely worth the time to read.

I just finished Dementia: The Journey Ahead by Susan Kiser Scarff and her sister Ann Kiser Zultner.  For those of you on social media, you may have located and Liked her page. A lot of people post on her page asking for assistance and information and she re-posts their messages in an effort to get them some answers.

The book is a chronicle of her experiences caring for her husband, who had a form of frontotemporal dementia, leading to behavioral issues and increasing health problems.  The type of dementia Susan's husband had sounds just exhausting, both for her and for him, and it sounds like she had to be on her toes at all times to keep him safe.  In plain language, she describes his behaviors and symptoms and strategies that she and their permanent aide developed to help manage and distract him. 

Susan is honest about her feelings about giving care and about some of the ways she might do it differently; including better self-care and getting more help.  It is obvious she loved her husband very much and was dedicated to giving him the best life possible.

The book is laid out quite simply, from diagnosis to death, so it didn't take much time or a great deal of effort to read and follow and glean helpful information.  She lists resources throughout the book and in the back, as well as helpful hints and tips.

This is a poignant story, told simply and well; mostly memoir, but packed with a lot of really good information and useful strategies.  I really enjoyed it and highly recommend it.  I hope you enjoy it, too!

One Among Eighteen!

Carol O'Dell, a contributing editor at a wonderful, informative site, Caring.com, was kind enough to include my blog in a story featuring 18 great caregiver blogs on the net!

I'm among great company, many of the other blogs are incredibly well-written, insightful, and poignant, and it's an honor to be among them.  Carol had some really lovely things to say about my blog and my mission, and it's amazing to be acknowledged.

Follow this link to read for yourself, and to sample some of the other great blogs Carol mentions, and while you're there, check out some of the information and resources available on this great caregiver site.

  http://www.caring.com/articles/it-took-3-years-and-13-dumpsters-cleaning-house