Alzheimer's Disease Support Group

You are so right. I wish my husband would have been able to share his feelings as his Alz progressed. But he was in such denial he wouldn't open up at all. Now, he has lost his words.

Sometimes the caregivers get so caught up in our own misery we
might forget the patient may still have cognitive thoughts and for sure
feelings.

I try hard to be gentle and kind to my husband... and bring
my frustrations here to vent.

Thanks for the reminder... and prayers for you !

Any injury or disease that affects our minds is frightening but alzheimers is the worest.
I do think you've missed something though, we may say there but for the grace of god go I but most people who deeply love someone suffers deeply when they lose that person peice by peice and are totaly powerless to do anything about it.
Then there are the children taking care of their parents with dementia and living with the fear that they too will develop this disease and put their own children or other family memebers through the same hell caring for them.
It is true that caregivers often get caught up in the careing and don't think how "lucky" they are not to be the one wiht the disease...it is also true that those caring for loved ones with dementia suffer a higher illness and death rate then any other class of caregiver.
I don't mean to diminish your pain, I've gone through a serious head injury myself and know just how painful it is to know that your brain will never work the way it did before again, but please do not try to diminsh what we are going through either.

I understand what you are saying, the thing about this disease is that there isn't one victim, especially in a marriage, I am also confined, isolated, tired, confused, frustrated and lonely. I am now doing the work of 2 people not just one. I deserve a place to come and share and relate without guilt because, lord knows, I have a lot of guilt already about decisions I have to make on my own and pressure from his family about whether or not I'm doing a good enough job. My life is now his life, I do not have my own self anymore. I am completely sensitive to my husband, every moment I breath, I think, how can I make this better for him?

Amen, Deb !

Sometimes I think of my home now as a prison, or hell.

Your so right Deb, we not only have to watch our loved one disappear in front of us, we not only have to deal with their reverting to childhood in many ways but we also have to "pick up the slack" and take over all the duties and chores that our mate used to share with us or do.
Exhaustion becomes our middle name, depression a constant companion, anger and fear visit often and we dont need someone telling us we're lucky.