No, this is not my last blogpost (at least I think not.) It is just a poem I found touching and I am touched that my son found it touching. I am not afraid that any of my children will desert me when I am “sad and sick and lost.”

Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.

I’m confused beyond your concept,
I am sad and sick and lost,
All I know is that I need you
To be with me at all cost.

Do not lose your patience with me,
Do not scold or curse or cry,
I can’t help the way I’m acting,
Can’t be different though I try.

Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me till my life is done.

Author unknown
Alzheimer’s Associatio

A few years ago I wrote a post on the book IRIS telling about living with and caring for a brilliant woman as Alzheimer’s began and  progressed to helplessness.  More recently the movie STILL ALICE depicts another woman who actually told her unbelieving husband that she had developed early Alzheimer’s and beautifully shows the struggle to come to terms with the diagnosis.  Available on DVD; recommended.

When Joyce posted this little poem below on Facebook, it somehow hit home. I’ve been assured that I do not have Alzheimer’s (yet) but most people who have reached my age have noted decided slipping — decreased strength, agility, memory, hearing,  vision, energy, mental acuity. My new geriatrician inquired especially about my memory and when I said I have lately had more trouble remembering people’s names he said that was not unusual. He asked if I had trouble remembering the names of things and I immediately thought of Peg (now gone to the Lord) asking for “the name of the thing that goes over the water.” My friend and I came up with “bridge” and looked at each other. Peg was indeed slipping.

A few years ago I read the book Elegy for Iris, a famous author who was aware of the first signs of her slipping into what was finally to be  a devastating condition of being “sick, sad, and lost” as in the poem below.  What struck me was that at the beginning, Iris, herself, was aware of the onset.

Oh it’s a long, long while
from May ‘till December
And the days grow short
When you reach September.
When the Autumn weather
turns the leaves to flame
One hasn’t got time
For the waiting game.

For the days dwindle down
To a precious few…
September…November…
And these few precious days
I’ll spend with you.
These precious days
I’ll spend with you.

Having weathered yet another winter I find I am enjoying this springtime more than ever. The blue sky, the warm sunshine, discovering the my fig tree has survived the snow and the frost once again.  How many times do we have to see life spring forth from the ashes before we will believe in it?  As I watch myself slip physically almost imperceptibly, how is it that I feel, at the same time, growth  in strange and unexplainable  ways?

When you know it is already December and the slipping becomes obvious, it is time to put it all in the hands of the God who does all things well. I have six children who are both good and kind and doubt that anyone will ever find me sitting alone on the sturbcone, chewing gubber rum. Being sick, sad, and lost does not appeal (not do any of the other terrible things that can happen to people) but even suffering has a reason and there comes a time to “Let go and let God.”

Bob DeMarco is a beautiful man.  I only met him yesterday on his website but already he is a person dear to my heart.  Bob lives in Delray FL  and  says, “I am an Alzheimer’s Caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer’s disease. We live our life one day at at time.”  His website, The Alzheimer’s Reading Room,  is called the number one blog on the internet for advice, insight, news, and information about Alzheimer’s disease, caregiving, and dementia.

Right off, you know that if Dotty is 93, her son is no spring chicken.(My prying makes him about 60.)    He, like all the rest of us, is learning in the school of experience, and he is willing to share that experience with us.  His mother is in the moderate to severe stage of Alzheimer’s dementia but can still read and do crossword puzzles.  She used to love to play the lottery every day but after Bob started buying the tickets for her (to save a daily trip to the store) he found she soon  became totally unable to buy her own ticket.  Moral:  Let Alzheimer patients do whatever they are able to do.  Once they forget, they will be unable to relearn it.

Apparently Bob moved to Delray in 2007 to care for his mother and the site is jam-packed with all sorts of trial-and-error experiences and helpful information such as  links to brain games, exercising with Nintendo Wii, the importance of exercise and the positive effect it has on his mother, and how he dealt with incontinence .  (“I can say this with some confidence — we no longer experience the flood. Now its more like the little tiny accident.”)    His technique requires getting Dotty to pee ten times a day and obviously needs a very dedicated, patient, full-time caregiver.  I like his humor.  His page on incontinence ends thus:  “Coming soon — the dreaded bladder infection makes my mother pee pee like a mad woman, how we licked the dreaded bowel movement problem, and who knows maybe I’ll publish the pee pee song I sing.”

Actually I found DeMarco’s  site when  looking for the new  Self-Administered Gerocognitive Examination (SAGE) test developed by the Ohio State University Medical Center  to help identify individuals with mild thinking and memory impairments at an early stage. The research shows four out of five people (80 percent) with mild cognitive impairment (MCI)  will be detected by this test.  It is a 15-minute handwritten test and of course Bob DeMarco has a link to it.     It can be self-administered or completed by the patient while in the doctor’s waiting room.

He also has a link to a new cognitive test, the TYM (“test your memory”), for the detection of Alzheimer’s disease designed and evaluated by researchers at Addenbrooke’s Hospital in Cambridge.  “The TYM detected 93% of patients with Alzheimer’s disease, while the mini-mental state examination detected only 52% of patients, suggesting that the TYM test is a much more sensitive tool for detecting mild Alzheimer’s disease.”

Perhaps his site is not actually the best Alzheimers site (I haven’t looked at every one of them) but when you have a intelligent, loving, well-intentioned, curious, patient caregiver, familiar with Pavlov’s dogs,  who can also write, the result is  likely to be pretty darn good.  Bob DeMarco has rounded up a wealth of material on the subject of Alzheimer’s disease.

~~~

Of all the things I’ve lost, I miss my mind the most. –- Mark Twain