Up to last Christmas I was the sole carer for my wife who had advanced Alzheimers syndrome. Having said that, I think I should add that I am a wheelchair user who has extensive paralysis from the neck to the knees at the back -including the right side of neck. Due to cerebellar damage, my balance is very poor also.
The Social Services completely ignored my condition, and refused even to give me a respite break. It was only after complaining to the head office that I got a break of one week. I was then ignored for a further 18 months, and was going downhill fast with exhaustion. Again a complaint to head office got results and she was taken into a care home.
After the assessment of her settling in at the home --the social worker wrote in the records "John does not want to care for his wife any more".
I really do wonder where they recruit these social workers from.

I am so sorry to hear of your trouble finding respite care. That is one of the largest obstacles for caregivers. We often take care of our loved ones without asking for anything because we do so out of love.

I am very lucky in that I am healthy and can care for my husband who has ms. He's in a wheelchair and although there is a lot to do, he's very easy to take care of. He's my inspiration in how he handles his illness. I have told him I will never place him in a nursing home or care facility unless I was unable to care for him and/or there is no one in the family who can help out. His mind in intact and ms doesn't take your mind away like Alzheimer's. Jim says he would go into a home with me if I had Alzheimer's or something else that prevented me from taking care of him. He's a sweetie like that.

My aunt has Alzheimer's so I know how hard this has been on you. I cannot even imagine how you have taken care of her as well as yourself as we all know that disease only progresses worse. Are you satisfied that she is now in a home or are you concerned about what they wrote or both? You can go higher up and ask for that to be removed if you never said such a thing. I am assuming with your disability you were having a hard time caring for her and yourself which is completely understandable. Take care of yourself.

I'm horrified at the way you've been treated! What an awful thing to write in the file about you.

My Dad cared for my mother who had Alzheimer's as long as he could (at home) but he had health issues of his own and she was getting more and more difficult to keep up with. Even with my help it was a struggle for both of us. He found an Adult Day Care and that was a huge help but nighttime seemed to be her worst time of the day.....so that was another issue. We finally had to place her in a nursing home after much thought and prayer. My Dad was exhausted and I was still working full time and had a family of my own to care for, too.

It seems that those who are not directly involved with the care of an Alzheimer's patient just do not understand the toll it takes, emotionally and physically, on even the most healthy of caregivers. Not to mention those who already have health issues of their own.

I'm glad to hear that she's been safely placed in a home and I hope that you now have time to care for yourself. It's a hard experience no matter what the outcome is......you lose your loved one more than once.

My Uncle shot his wife, then himself. I consider this not murder-suicide as police record states, but an act of love. Uncle loved Aunt, no one can deny. A serious of strokes, put her in a bed, hardly moving. Then Uncle got his own medical problems, soon he would not be able to care for her. The idea of someone else tending her very physical needs was something neither could accept. They both decided on this. What love he had to "rescue" his wife then do it to himself. This was an act of love.

Sorry to hear that you spouse went to a NH, sometimes that is the best even when they don't want it.
I took care of my mom who progressed from full mobility to a w/c in five yrs. She had a few falls and broken bones. Her mind was good during the day, had sundowners at night. I was working f/t and left it in 2007 due to the stress of taking care of her which along with my own stress, brought me out of remission for MS.
My mom absolutely said never to put her in a nursing home, but I was having problems with her on the floor almost every morning when I got home from work, the police were threatening me with eldercare abuse, I switched to a job closer to home and hated it. All this caused me a serious nervous breakdown. I could no longer care for mom and keep both of us safe.
She did go to my sister's home who promptly put her in a NH. This is the last thing either of us wanted, but at least I don't have to worry about her falling, she gets her diaper changed on a regular basis, is not full of poop because she would not let me clean her. and so on.
I can not have any contact with her because she wants to come back home, but I know she is well taken care of.
So, we all have to do things we don't want to, but, to improve her quality of life and mine, she went anyway.

"Sundowners." That is a perfect word for what happens to my mom at night. She's bright as a whip in the morning but as the day progresses her mind doesn't work as well.

I cannot imagine how you accomplished the role of caregiver, given the severity of your own medical conditions. Writing "John does not want to care for his wife anymore" is very irresponsible documentation. A better way is to briefly document, no matter how often you may be required to document it, that, "Mr. _________ has become UNABLE to care for his wife, BECAUSE . . . ." Although there are various reasons, e.g. deadline constraints and snarly supervisors, for such censurable documentation, it is never excusable. Hopefully, I was not guilty of such reprehensible writing, and I gave many uncompensated overtime hours to make sure of such things, but I cannot be 100% certain of that. Where do "they recruit these social workers from?" *edit* if they think the individual might, at some point, be capable of learning the English language, and if said social worker has an adequate degree for licensure in the states. And why is this? In the US, at least, the educational requirements are too high, the pay FAR too low, and the job stress too hazardous to the health for anyone to want to do it! And how many are not just willing to do it, but willing AND able to put in the extra time to do it right? Well . . . as I mentioned, they are recruited from *edit* and what have you. Sign me: former psychiatric social worker, lengthy career ending in being whisked off to psychiatric hospital - sigh. billie

Insurance companies and governments in public health systems exploit mercilessly the labour of unpaid family caregivers. The reduction in long term hospital/nursing beds and covered services has downloaded this indispensable care to the home. Imagine the bill if the insurance companies or the state had to provide this essential service!

Then when these selfless, exhausted caregivers seek a little help, they’re often treated with complete insensitivity. I say we need to fire some social workers and administrators and hire more respite workers.

WHy wonder, John, they come from the bottom of the heap and get paid accordingly.