Getting it together...

Posted by: Don B Thomas Tagged in: Untagged 

Don B Thomas

     I've been reluctant to update this -- for a variety of reasons. But I realize that's unfair to anyone who may have been following this.
    I won't elaborate too much on what's happened to ME, other than to say it's been an up and down summer with a long "up" part which began around the first of August.
      Since May, Joan has been in unit 7Y of  the Edmonton General Hospital which probably provides the city's best AZ care.
      She no longer speaks, has to be spoon-fed and has no idea who I am. It's like she died a year ago without her body realizing it.       I visit every other day, sometimes every three days.  The unit has a washer and dryer for family use so I usually combine laundering her clothes with help at a meal time, usually supper.      When she arrived at the General, her meals were pureed.  I knew of no reason for that. So at my insistence they had her evaluated by a dietician and she was put back on regular food.
      If you wonder why it was an issue for me, I invite you to try a pureed hospital meal.  It's the same as solid food but it looks like wet dog food.      It looks awful, tastes awful and has awful 'mouth feel'. But most at 7Y get it because they could choke on regular foods.     At first, Joan fed herself and seemed to enjoy regular food. But for the past month or so,  she has stopped feeding herself and won't accept solid food.    The unit manager says she's a "lazy eater'; she can't be bothered chewing. So, they switched her back to pureed. I start by spoon feeding most of what's on her plate and switch to dessert. She loves anything sweet and will often take two servings.    She's almost always in a wheelchair and is held in place with a seat belt that buckles from the back. Before we switched the buckle to the back,  she was found on the floor one evening.  Nothing broken, fortunately.
   The unit manager says she can and does walk with assistance at times during the day. They don't dare let her walk on her own. And she does get lots of exercise by sort of dragging the wheelchair all over the spacious, airy unit with her feet.
  I used to have mixed feelings about visits, seeing her like this and having to leave after a few hours.  For many months, she hasn't said a word to me or anyone else.
  When I arrive, she looks up in a vacant sort of way. Do I look familiar? Is she glad to see me? I can't tell. When I leave, she looks up in the same way. Does she want me to stay? I can't tell.   No one else visits other than two or three of her best friends from her circle of  'birthday girls' who sit with her briefly about once a week.
  For all practical purposes,  her intellectual essence, that which animated her is gone.  I think that's what her beloved sister, Peggy, felt when she flew out for a visit from Saint John in May.   I'm almost crying when I write this. But I've had a long time to adjust. I'm getting on with life.     I curl four week days and help at a food bank outlet on the fifth. I go to a lot of jazz and other concerts, talks and occasionally a movie theatre.  I see a lot of  British and some American movies and TV series, using Netflix.  

  I'm gonna spend two weeks in Maui in March and take part in a long distance bike trip in June. Also that summer, I'm gonna paddle the South Saskatchewan River from Medicine Hat to the Saskatchewan border -- for the seventh time  AND...  God or Bhudda or whatever he/she is called has found me a wonderful, very understanding, open, adorable lady friend.

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Barbara Dylla
21-Nov-2010
Votes: +0

...

Dear Don,

I've been out of the loop for a couple of months due to two major projects I received. I know how hard it must have been for you to write this. I feel the exact same way with and for my father. Your questions are my own unasked questions. Does he know who I am? Is his wife familiar to him Is he glad to see us? I have no clue what he is thinking. No, he is not the person who raised me. No, he is not the man my mother married. But I know somewhere deep down he needs to see us (we bring my mother to visit him once a week) and I pray he realizes we are family and we love him. I think I've given him more kisses in the past two years than I have over my entire lifetime.

I too have tears on my face now as I write this. Don't know why, because he is in a good place, is well taken care of, and doesn't appear to be unhappy. I make sure his needs are met (clothing, supplies, soya milk as he's become lactose intolerant, etc.). I make sure my "girls" (his private caregivers) have what they need - they are my saviours, and his saviours, and if his life is good, it is thanks to them.

I wish you much strength and courage. And as Cindy wrote, live life to the fullest.

Barbara

419
Cindy ODonnell
04-Nov-2010
Votes: +0

Long Term Care Insurance Specialist

Dear Don,

As I read your story my heart went out to you. It is very difficult watching a loved one with alzheimers loose their dignity and independence. I am glad you shared your story for I truly believe it is therapeutic for the person writing and others reading. You are not alone Don in your feelings. I am happy you are making choices to live your life. Even though your loved one is still physically alive, the person you knew has passed. It is good that you still visit her, for I believe even though our loved ones may not appear to know who we are they do know they are still loved and need to feel that. Live life Don to the fullest for it is short.

Cindy

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