Where has gone my gentle man?
The music maker, the lover.
The father who cherished his children.
I am too young to be alone.
I cannot fathom a lack of touch, affection, sex.
Nor reconcile his physical abuse of me.
Still, I cannot allow the indignity of institutional care.
Not while there a cell of Malcolm left
There will be no respite for me.
No longer his wife. More like a mother.
A being that exudes care; safety.
I watch him pass over, ever so slowly.
'Just let go, Malcolm', I say,
'in the home where we loved and laughed
you are safe, my love.'
And even then, unable to drink or swallow
he lingered three long days.
Finally, Malcolm relented on life.
It was I that could not let go of him
He that could not let go of living.
An immeasurable force of will.
(I'm trying to process my reaction to a documentary I saw on early onset Alzheimer Disease and a film made about an Englishmen, Malcolm, who lived for 12 years after his diagnosis. It was deeply sad, captivating, inspiring, haunting. I don't expect to ever forget it.)
The music maker, the lover.
The father who cherished his children.
I am too young to be alone.
I cannot fathom a lack of touch, affection, sex.
Nor reconcile his physical abuse of me.
Still, I cannot allow the indignity of institutional care.
Not while there a cell of Malcolm left
There will be no respite for me.
No longer his wife. More like a mother.
A being that exudes care; safety.
I watch him pass over, ever so slowly.
'Just let go, Malcolm', I say,
'in the home where we loved and laughed
you are safe, my love.'
And even then, unable to drink or swallow
he lingered three long days.
Finally, Malcolm relented on life.
It was I that could not let go of him
He that could not let go of living.
An immeasurable force of will.
(I'm trying to process my reaction to a documentary I saw on early onset Alzheimer Disease and a film made about an Englishmen, Malcolm, who lived for 12 years after his diagnosis. It was deeply sad, captivating, inspiring, haunting. I don't expect to ever forget it.)
My husbands grandma had Alzheimers for almost 20 yrs before she passed..The only person she knew was my husband...he told her he was having a baby that was our oldest...the next time he came up she asked where his baby was ..right after I had him he took him to see her...she knew only him and my husband...why she only knew them who knows...my father n law (her only son) she didn't know or her daughter or any other grandkids just my husband and baby...she died when my oldest was only 3..
ReplyDeleteAlzheimers is a sad thing
I was listening to a radio series on early onset Alzheimer's that may well have been this same man. Haunting is the right word.
ReplyDeletePhysical abuse can be common from alzheimers sufferers toward their carers. It is probably the hardest of their behaviors to accept and understand from the carer's perspective. To not be recognised and to lose the essence of the person you have known and loved is crushing enough, but then to live in fear of them is the final insult from this cruel disease. The vast majority of carers are family members who remain unpaid and often unsupported in their work. Many have to give up careers and incomes to devote the time their charges need.
ReplyDeleteMy mother lost both of her parents to dementure. It is terrible and tragic, yet somehow we soldier on. Some day it will be my turn to care for her and I pray that I can do so with the compassion, strength and devotion she found every day to protect their dignity through their long, agonizing decline.
Daisy: It's a deeply sad condition. The realities of the situation make for upsetting and often overwhelming times.
ReplyDeleteConina: I just happened upon the documentary when I was looking for something to watch late on Friday night so I don't even know the name of the documentary; only that I saw it on SBS. 'Paul' was the filmmaker and he'd been with the couple all the way along and was like family. The wife allowed him to film everything and by the end of it I was holding myself for some comfort. Malcolm was simply skin and bone; the smallest human being I have ever seen. To see footage of him as a vibrant man and then to see him like that was shocking.
Rollymo: You think it is inevitable she will get Alzheimers? Let's hope for your sake and for hers that she is lucky. I read 'Still Alice' earlier this year and got much from it but nothing prepared me for this documentary. This particular woman went the extra mile for her husband. There's no doubt that carers are left to manage on their own much of the time, putting their own health at risk. I think there is room in the middle ground. Friends of mine visit their parents in care several times a week and keep a close eye on their care without caring for them at home. It seems a good compromise.