My description of the last 10 years.

Crushed

I was asked what being an EOAD spouse was like.  Here was my response: 

 

 

 Being an early onset Alzheimer's spouse is like the worst parts of marriage and divorce with no redeeming values.It's like being hit by a flamethrower that destroys lives, relationships, families, careers, finances and futures and leaves nothing behind but the screaming charred wounded.     And no one in control cares a bit

amicrazytoo

Very sad, painfully true. (((HUGS)))

Michael Ellenbogen

I think you said it well but I would add that it drags so slow and you never know what you are hit with.

Crushed

Michael Ellenbogen wrote:

I think you said it well but I would add that it drags so slow and you never know what you are hit with.

My mother had Vascular dementia and I had been a legal intern in a psychiatric hospital.  unfortunately I had a very clear vision of what I was hit with. 

John1965

Very well put. 

I've said that it's like DW was sentenced to life in prison, and I was ordered to go along to keep her safe. Friends and family visit, but all communication is superficial; nobody knows what to say or how to act. And there's no opportunity to talk about the "case" because any mention of AD hurts DW's feelings. 

David J

Crushed, I hear you!  DW showed signs in the early aughts, and by 2007 was diagnosed with MCI and was on disability at 52. Now, she is in an MCF, and it seems like it happened so fast. But it's been 14 years. So fast, but so long. A career cut short, a marriage that morphed into caregiver/care receiver, but with lots of love. No help from the medicos, no social services, no understanding or help when needed. We caregivers are all alone.

Jo C.

". . . . no one in control cares a bit."  All of what you say is reality,  an avenue of despair is the lack of caring by those who are indeed in control and those who are making the laws that can make or break the quality of life for the caregiver, family and person with dementia. For so many, it is being powerless when in the greatest need of one's life. 

J.

Iris L.

Crushed wrote:

Michael Ellenbogen wrote:

I think you said it well but I would add that it drags so slow and you never know what you are hit with.

My mother had Vascular dementia and I had been a legal intern in a psychiatric hospital.  unfortunately I had a very clear vision of what I was hit with. 

I understand what Michael meant and I agree totally.  Even people who have been caregivers in the past don't know what they are being hit with now because the progression of dementia for each person is so erratic.

Iris

Crushed

Of course none of us know the INDIVIDUAL future but that is not what I said.  

I said

I had a very clear vision of what I was hit with. 

I  have taught health care risk management and worked endlessly with probabilities in health care.  I was well aware of the epistemic and aleatory uncertainty and had to make pension and renovation decisions based on probabilities. 

I was hit with probabilities

Rennbird

Crushed, When my husband finally rated a 70% Veterans disability for exposure to Agent Orange, he was transferred to a facility in North Bethesda that is underwritten by the VA.  I thought that life could get no darker but it did.  He died there after three months.  The place was beyond description but the lesser of the two evils.  The only facility in Northern Virginia was worse.  I still harbor a profound sense of rage.  I knew, at least in this area, that people would not put their own dog in such a place.  I had to focus on being there for my husband and the other patients who sat in a small windowless room day after day with CNN on the television.  There was no attempt to make the surroundings bright and cheerful.  I will probably never get over it.  Our tax dollars at work.

Crushed

Rennbird wrote:

  Our tax dollars at work.

Actually its our LACK of tax dollars at work  The under funding of public social service in the USA is due overwhelmingly to the  "I've got mine sure sucks to be you"

attitude

States actually compete to offer the stingiest benefits in the hope people will move to more generous states. I have an extremely handicapped grand niece. She lives in Pennsylvania to get decent social services rather than live in Texas.  My genetically disabled granddaughter is lucky to live in Maryland      Workers comp is a national scandal

jfkoc

Interesting...never occurred to me that states differed in services.