Friday, July 20, 2012

Care giving - LBC topic

Care giving.  That's this weekc LBC topic, brought to us by Ramana.

I am admittedly somewhat biased on this topic as I am the primary care giver for my wife of 40 years, Lynn. Here's what she looked like 1/1/1972 when we got married.  Never confuse fat with stupid - I picked a holiday so I'd never forget my anniversary, and it worked.
Lynn inherited a genetic condition from her father called Huntington's Disease - sometimes called Huntingtons Chorea. To the uninitiated, think of it as a combination of Alzheimers and Parkinson's rolled up in one ugly disease.  It is incurable and a death sentence - not only to the person with the disease but to the family in many cases. There is a 50% chance the offspring of a person with HD will inherit the gene and be doomed to have HD.  We have 2 kids.  They have not yet been tested for a myriad of reasons.  I see my job as care giver as doing whatever I can to keep the family together - no mean feat as we are the definition of dysfunctional in many ways - and do whatever possible for Lynn.  Lynn has the mental capacity of a petulant 5-yr. old these days. She has trouble controlling her bodily functions. She nearly choked to death twice last week due to a loss of control of the muscles that allow us to swallow. If she wants something and is told no, I hear her chant "I hate you and hope you f***ing die" for 30 minutes or so.  That happens more than once daily.

Our daughter and her family live with us and Jamie trys to assist me.   She does the best she can but...

So why do it? The reason is simple - Lynn has nobody else. It is simply the right thing to do.  I am no saint.  Lynn has had 15 or more years of her life stolen from her.  Whatever chance we had for a happy end to our relationship has been stolen from us.  Knowing now the root cause of the troubles that started 15-20 years ago does nothing but explain them.  It is too late for healing those wounds.  The girl I married essentially left the building as it were 10 or so years ago.  Until last year there were occasional flashes of that person. The pic above is the last one taken in which Lynn doesn't look like a raving lunatic. She's holding her youngest grandson - now 21/2.  He will never know her for the loving, doting grandmother she used to be. Her oldest granddaughters are rapidly forgetting that grandma as well.

In the midst of her rants or those times she gets violent - another common occurence with HD - it can be very very difficult. The fact that she is still strong as an ox does not make matters easier. We just take it one day at a time.  When she asks the same question for the 30th time we try not to snap at her.  We are not always successful. When she's into one of her I hate you... rants I try to ignore her. She doesn't mean it. She couldn't. But there's always that nagging thought down deep that she does mean it and everything about the last 40 years has been a fraud.  But I prefer to think we started off like this...

Again - why do it?  I believe we are dealt a hand of cards in life.  Several in fact. Many times the hand is not one of our choosing.  But we must simply play the cards we are dealt. There's nowhere to run  and nowhere to hide.  Lynn did not intentionally inherit the gene that has decimated her life.  It's common knowledge that bad things happen to good people. Guess it was her turn.  I've been called a saint and I've been asked what I did to deserve this kharmic backlash. Both comments seriously offered by well meaning people.  Guess that means I am either amazing or I am to blame.  I suppose the comment that galls me the most is the one about god opening a window when she slams a door. Or vice versa. I can never keep that one straight.  Fact is, stuff happens and this is our stuff. I will continue to persevere and care for my wife.  As long as she is here my life is fairly well locked down. If she's awake I need to be near to keep her as calm as possible. And if one day I am dealt another hand well - we'll see how that one goes. As it stands now we are here...

That's my take on Care Giving.  Basically you do it because it's the right thing to do.  You do it because you care for the person you are caring for.  And you try and maintain a degree of sanity. Your sanity.  And remember - it's OK to get frustrated and occasionally angry.  But keep playing.  And Grannymar and Ramana - I'm trying to handle this with as much aplomb as the two of you.

Please check what the other LBC members have to say on the topic.  Anu, Delirious, gaelikaa, Grannymar, Maxi, Maria SF, ocdwriter, Padmum, Paul, Ramana The Old Fossil and Will.


  1. Shackman, you are doing a wonderful job!

    Hugs, GM

  2. This moves me in a different way than it can the others simply because I knew you and Lynn as a couple that Carol and I loved to be with. For that reason, I will have Carol read this post, too.

    I don't know what to say other than keep sharing with you what we can whether it be the joys or the pain. Sometimes the line separating the two is so blurred.

  3. I have not been good at visiting everybody's blogs as I have been "dealt a hand of cards in life. Several in fact. Many times the hand is not one of our choosing. (Here however I have chosen to take on two BIG projects at the same time) But we must simply play the cards we are dealt."

    My heart goes out to you. I had three people to care for--my parents-in-law and my mother. This was when I was younger of course. In India we also have the blessing of house help and that takes away the drudgery of sweeping, swabbing, cleaning, cooking. So I could cope with them and my mother and mother-in-law grew old together with their own idiosyncrasies and demands. Looking back I think that they were really good elders who did not really trouble us....but then it was crazy. My MIL had Dementia as well and the repeated questions were boring to cope with. Strangely enough my mother passed away first and within 5 weeks my MIL did too. They were company for each other and my MIL missed her a great deal I think.

    Care giving is something that happens throughout our life--the ages and persons change. We pray in Hinduism for 'Anayashena maranam'--death without suffering, dependency and neediness.

  4. Aplomb? You have done a magnificent job my friend. Having inside information before this post on what was going on in your life, I do not want to spend time on it, but will be a little philosophical and share what I learnt from that great old man Viktor Frankl.

    Everyone faces various stimuli and have to respond. But between the two events, there is a space that can be used to further our own growth. That is to use that space to choose. Choose among many options, but the most important one when the circumstances or not of our doing and out of control, is the ATTITUDE towards the response. And having chosen the attitude, that is having answered the WHO, we usually do come up with the HOW. You have found the elusive meaning in life as did I. I await the day when in retrospect, I can share like Frankl did.

  5. Soory there is a typo. It is not WHO but WHY.

  6. Your plight fills my eyes and touches my heart, Shackman. You have been given a heavy burden that takes tremendous strength to carry.

    You remind me of my late husband who never complained, never wavered, just did what he had to do.

    Thank you for telling your story; it has given me new insight and courage.

    Hugs and Blessings to you and your family - Maxi

  7. You have aplomb in bucket loads.
    I'm humbled and an interloper to be in such illustrious and good company with you and other LBCers on this topic.

  8. Nearly missed this one, Shackman. Your account so candid, so from the heart, without syrup, touches me deeply. And I mean deeply.

    My only 'brush' with HD was, when helping out at some corporate convention (can't remember now: Maybe Cairo, ca 1985), someone on the temporary team, about my age, told me about her HD. Just diagnosed. How, whilst freshly married, she wouldn't and couldn't contemplate having children. Full of fear what the future will hold for her. Desperate.

    The tragedy, as highlighted by you so poignantly, that 'ill health' impacts on those close and emotionally attached. We promise each other at the altar "in sickness and in health". Indeed. And some of us, like you, are put to the test.