Nice Genes.

The other day, I went over to visit Dad and sit with him.  As usual, after lunch, he was dozing in his recliner chair so I sat on the bed and studied his face.  I thought, as I had before, how young he looked in comparison to his age - how smooth and relatively unwrinkled his skin is and how his hair is still thick, if almost white.  The skin on his face is slack, however, I think because the facial muscles don't work as well anymore - it's what can give him a flat affect. I always think, though, that the fact that he started to lose his mind when he was young- along with worries, stress, and the awareness of aging - is what has contributed to his youthful appearance.

As I watched him sleep, idly going over his features, my eyes caught on his chin and I found myself really looking at it.  He has a big, lean, strong-looking face, and his chin had always contributed to that - grounding the rest of his features.  I had never really studied it that closely before but as I looked at it, I realized it reminded me of another chin - my own!  I have always thought my chin was a little odd - it has a cleft in it, like Kirk Douglas, or Michael Jackson after he decided he wanted to look like Kirk Douglas.  I read once that the cleft is a minor malformation of the chin bone, or something, and relatively rare - on the right face, like that of Kirk Douglas, it looks craggy and manly.  On my face it looks okay but it's definitely not cute or petite, and I always kind of wondered where it came from.  I realized I was looking at my chin on Dad's face. 

I look a lot like my Mother, and my Mother's mother.  From the shape of my face, to the shape of my eyes, even, I think, to the shape of my teeth.  When I look at pictures from my first wedding when I was twenty-four, I see my Grandmother staring out at me - we share the same soft jaw line and roundish eyes.  It's a little odd.  My face has changed a bit in the intervening twenty years so that it's not quite so obvious - now I think I look like myself, with touches of my Mom's family and elements that don't seem to really belong to anyone but me.

For the longest time, the only thing I thought I had inherited from my Father was his coloring - he and I both have blue-gray eyes and ash-blond hair.  I certainly didn't get his height since I'm 5'5 and he was over six feet in his prime!  Suffice it to say that I have never seen him looking out at me when I look at a picture of myself - but there it was, my chin!  As I looked at his chin, I realized that I felt happy that we shared it - that there was something definitive about me that came from him.  I felt a sense of kinship and connection that I sometimes lose since he and I don't really interact the way that fathers and daughters usually do.  It was a nice feeling, that genetic relationship and the experience of being part of a line that stretches back for generations of the same height, eye and hair color, and even shape of chin.

Staying Connected.

A few weeks ago, a relatively new website based in the UK called Practical Alzheimer's, contacted me and asked me to write an article for their site.  Their theme for the month of April was Out and About, ranging in subject from the practical - learning to take advantage of cabs - to the personal - how hard it can be to take the car keys from your loved one.

I chose to write about the importance of keeping one's loved one engaged and connected with the greater world, even though they have dementia, including places and activities to go and do so that both carer and caree feel they haven't disappeared.  I shared some examples of the things that Dad and I used to do together, and how I felt it improved Dad's outlook and health to still feel connected.

Staying connected, to each other and the world, is such an important thing for we caregivers to do, and I'm so glad I had the chance to connect up with another group doing the important work of spreading the word about dementia and caregiving.  I've gone International!

I encourage readers to visit the website, linked below - they have a lot of great information - including (modestly) my article!

http://practicalalzheimers.com/how-the-little-things-kept-dad-connected/

Support Group!

 Our second group is tomorrow in Seattle from 10am to 12pm, location and directions on the sidebar.  I look forward to seeing anyone who needs a little extra help and support!

 The Caregiver's Bill of Rights.

I have the right:

• To take care of myself. Caregiving is not an act of selfishness. It will give me the capability of taking better care of my loved one.
• To seek help from others even though my loved ones may object. Only I can recognize the limits of my endurance and strength.
• To maintain facets of my life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
• To get angry, be depressed, and express other difficult feelings occasionally.
• To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
• To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
• To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
• To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
• To expect and demand that as new strides are made in finding resources to aid physically- and mentally-impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

 This version was taken from www.caregivers.utah.gov, where it is attributed to Jo Horne.

Helpful Books...Or Not.

I've just finished two more books about dementia, caregiving, etc. and I thought I'd review them here for everybody.

The first one was, Elder Rage, by Jacqueline Marcell, who know speaks about dementia and caregiving issues.  This is a memoir with helpful tips and resources in the back.  It details the struggle she had to live with and care for her ailing mother, while at the same time dealing with her father, who is going through dementia-induced rages.  As the story progresses, we learn that he has always been somewhat abusive and we learn a little bit about her parents' relationship and how Jacqueline sees it.

It seemed like it would be an interesting read and she certainly has an eventful, challenging story to tell, however, the way she's written it was a little tough to read, in my opinion.  She has a background in television, I believe, and almost every sentence is punctuated by some reference to a tv show, or character, or well-known line in movie.  It gets a little overwhelming and distracting, at times, and it really detracted from the story she had to tell. She also tries to write in the vernacular, which is very hard to do.  She does list some helpful tips and resources through the book, that she learned while dealing with her father and mother's different needs and issues.

On the whole, it seemed a little voyeuristic and sensational.  I empathize with the terrible experiences she and her mom had to go through but I'm not sure reading this book would be that helpful to anyone looking for support or a similar experience.  I'm sure there are more cases than we know of, however, of caregivers trying to care for a family member with a history of abuse, and the little bits of information she gives on that might be helpful for someone in that situation.



The second book is, The Caregiver's Path to Compassionate Decision Making, by Viki Kind, MA, a bioethicist and counselor.  It is not a memoir, per se, although she uses examples from her experiences with her mother and father to illustrate her points, as well as a few stories from other caregivers. 

Viki's main goal is to help anyone caring for another to know how to make the best life and health care decisions possible, from the point of view of the person being cared for, i.e. what would that person decide if they had the capacity.  It was very straightforward and she gives the readers very clear steps to follow to make the best choices.  Making decisions that impact another person's life is a very difficult and soul-searching process, as caregivers know, and she gives a structure whereby it can be done without too much second-guessing.

A lot of people, when they enter the world of caregiving and making medical choices for another, have not had a lot of experience with the medical world.  I did only because I have a chronic illness, and I still found it a little challenging to navigate.  Viki helps the reader navigate this world somewhat, including the ways that most doctors and hospitals think about care and risk and sustaining life.  I enjoyed the book and feel like I got some good tips and information on how to make the impending choices for my Father.  I would actually recommend this as a good book for everyone to read, because, while you may not have ever have to experience caring for someone with dementia, many of us may have to make choices for a spouse of sibling. Buy it, read it, and pass it on to your spouse or sibling or friend!


I hope these reviews have been helpful - I'll keep on bringing them to you as I go through my bookshelf!

Pictures!

I talk about my Dad a lot so I thought I'd post a picture of my Mom!

(I guess it's the whole family, really. I'm the baby on the right.)

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.