Thursday daughter 1 and I went to an all day seminar in care giving.
The emphasis was not so much on how to care for the patient, but how to care for ourselves. You know when you fly in a plane, the attendant instructs about the emergency equipment and reminds you that if there is an emergency, to put the oxygen mask on yourself FIRST, then on those you are responsible for.
That is how it is in this caregiving thing. We tend to be so intent on doing good that we neglect our own health.
The story kicks around the AD world about a patient and caregiver who go to see the doctor. The patient is happy and full of good words and the caregiver looks like death. That is easy to replicate.
So we were told about healthful living and eating and sleeping and such. In our case we are doing pretty well, particularly since there is two of us to care for one little lady. We can spell each other off easily.
Sunday I am taking another break, this time to Portland to do Daddy-Duty. I need to advise daughter 4 on putting tile in her bathroom, then photograph her actually doing it, so she can publish it on her blog. (liagriffith.com).
I’ll also take a granddaughter to Portland. Bri is in Cooking School, has just finished the first unit (straight A’s!) and has been visiting her family while she is on spring break.
Maybe I can slide up north a bit into Washington and see David (the one I wrote about a post or so back). He offered to meet me somewhere in the middle if time is short.
We will see. Daughter 1 says to go, that she will look after Miriam, and I know she will.
SW Idaho, SE Oregon and North Nevada are home to an area collectively known as the Owyhees. They are the home of a gold and silver mines, ranches and seas of sage and grass.
Some say it is ugly and useless.
I grew up in the area and the Owyhees are neither.
A couple of weekends ago I drove out to the Idaho edge of the Owyhees and spent a few hours just being there. It was cold and the wind was blowing, but it was like being back home.
BTW the first "white" people to travel through this area were from the Sandwich Islands, which later was known os Hawaii. If you say that word like the native Hawiians do it sounds amazingly like the way the desert name is pronounced!
Like most guys I have only had a few really close male friends.
In my case that list real short. I am told that if you are a guy and you have 2 or 3 really close friends, I mean really close friends, in your lifetime, you are somewhat unique. Wow.
Tonight my friend David called and we visited for an hour. We led in a bible study group for close to 20 years. We camped together. We hiked in the desert together.
In the church group, what I did not do David did and what he did I did not do and it was wonderful. Sometimes, we would meet at the church for study and one of us would say (usually it was David) “Let’s do a potluck today, anyone have a house?”
We never were short of food, it was always great.
Sometimes David would say: “Let’s go camping next weekend.” We would go. It might be 4 or 5 couples in all sorts of RV’s and it might be fewer, or more, but it was always great.
I guess it was that spontaneity that made the group and our leadership so unique. The church published a study guide, which we ignored, instead reading from the Big Book. If I could not be there, David would lead out. If we were both gone Lloyd would lead and if we were all gone together, those who were still there knew the chapter and knew what to do next, and they did.
So, when I was there a few weeks ago the members kept telling me how much they missed the Dave and David days.
The odds are not good of finding a real close friend like David (or Carl while we were in Texas). If it does happen, I fully intend to enjoy every moment.
Miriam cannot be left alone at any time now. She has trouble with balance, she has trouble with mobility.
But in the middle of the night, she gets up and silently moves around her sleeping space, putting things here and arranging things there. She has bathroom problems and solves them her way (which may not be daughters or husbands ways.)
So I put her to bed about 8 in the evening. I stay up and read if I wish (so she can see me) or I go to bed beside her. The miserable hide-a-bed has moved over and a decent queen bed has taken it’s place, so I can sleep with a good bit of comfort.
Sometimes she wakes me up out of deep sleep with a wet diaper. Somethings she wakes me as she is struggling to go to the bathroom, sometimes with the residue of a bad dream, but I am there to help her. I may not get as much good sleep, but I am there to help her.
Family begins to stir about 5:30 or earlier sometimes and I can leave and go back to my little house. Sometimes I am quite rested and sometimes I am exhausted, but I have been with her and she was safe.
Nothing is perfect and what was pretty durned good is not so much so now, but it is still my heart felt duty to protect and help her. That is not offered with a grudging spirit, but with a long history of devotion and love (she would do as much or more for me, I remind myself).
(When I mentioned this to a Bible Professor I know he gave me THE look. I suggest the word be taken in it’s largest, least specific definition!).
The voice said: “Dave.” Yes. “You are going to have to drink all of this one, right down to the bottom of the cup.” Hmm, thought I.
“There will be no easy outs, no short cuts, nothing but the whole cup.”
Since I had been thinking about this as a possibility, my first guess is this had more to do with my thought process, and less with divine extension or even a mimic of Scrooge’s “undigested piece of beef.”
Still, the thought had entered my consciousness, somehow.
At first it was freeing, and offered a rest from my concern about all of this AD stuff, then depression set in (maybe forgetting to take my happy pills had something to do with that one) and the pendulum swung back to a degree of restfulness in it all.
Then, on reflection, I have to conclude that AD has been a pixel by pixel revelation through 14 long years. Of course, one could drown themselves in some sort of a mood enhancer (even if only temporary), or take it as it is.
Life is not bad. I share care with a daughter I adore. We work together well, so that no one is over worked and no one has to carry too much weight.
That vision thing was last week, and I am back to making peace with it all. As a realist of some sort, I suppose you might suggest that I have no real option but to accept, but I will politely ignore that logic and credit something more mysterious.
This blog began as a spot to vent about my life with Miriam and her time with Alzheimer's disease.
She was diagnosed in '99 and her decline has been quite slow. In fact some of our best years of our long marriage have been these recent years.
Alzherimer's, at least her version is a disease of waiting. One shoe drops and it can be a very long time before the other one drops.
So life goes on.
At the beginning of this blog I told the story of our courtship and marriage, about out family and our personal journey with this disease. The part that scares the most is the anticipation as the disease slowly progresses.
So, I will touch on that subject from time to time, but the entries will tend toward comments on life. I'll leave politics and religion for others to worry about, not that I don't have strong opinions!
I have my hands full just looking after my wonderful Miriam.
We met when we were 6, began dating at 15 and have been together since. We will have our 56th anniversary this June.
We have four wonderful daughters. Smart, independent, awesome. They have given us 7 grandsons and 4 granddaughters. None of them are little any more. The oldest is 28 and married, the youngest is 14.
Until this last fall we lived in a hosue I designed and built in the '70's and it is pretty weird and wild, but very comfortable. Last summer the girls came to the conclusion that I really did need help dealing with Miriam. Now we live on a couple acres with daughter 1.
Life has been good. There is not much I would do different even if I could. We are rich beyond belief but chronically short of cash!
And, unless stated otherwise all the photographs are mine.