Dementia Boot Camp: Training to Be a Caregiver, Part 2

No one ever said my mother had Alzheimer's, but she suffered from severe dementia, such that she only recognized me (her only child) about half the time.

During the two and a half years my wife and I cared for her, we did our best to understand her situation. I can see from your account of the training, however, that we consistently underestimated and misunderstood what she was up against.

So now I'm two minds. On the one hand, training like this would have given us invaluable insight into Mom's struggle. On the other hand, I am almost ashamed to admit that if we had had this training first, we might not have had the courage to become home caregivers at all.

And I really think Mom was better off with us until she reached the point at which she needed 24/7 care.

Very well put, Pete. I, too, have been torn both ways. Understanding my dad, mom and uncle (all with different types of dementia) better would have been good - I think. But, also, it would have been painful. I suffered for them so much, already. I likely would have been a more aware caregiver, and I do think this training is terrific. I would advise it to anyone given the chance.  But after going through it, I think my own empathetic pain would have been even greater.

This story brought tears to my eyes remembering the experiences of my mother in a nursing home (one of the best in the Chicago area I might add). Staff indifference is a huge problem exacerbated by the fact that most aides are low-paid coming from disadvantaged backgrounds. I was reluctant to complain too much for fear of bringing reprisal to my mother.

As in the article, aides don't answer calls and spend much of their time chit-chatting with each other. As a result, many families hire private-duty caregivers to watch over their loved ones. It's a sad state of affairs with no answer in sight. Perhaps family members placing a loved one in a nursing home should go through this training--then we might all band together to bring reform.

Thank you for sharing the Boot Camp experience. I wish the Nursing home staff could go through this before being hired. My Aunt is in an Assisted Living facility. I could just imagine what she could be going through daily. It made me cringe. My Aunt has the eye disease that they simulated for you with the glasses. Also, she has been diagnosed with Leukemia, and is getting help through Hospice. Also she has Dementia.

I try to do what's best for my Dad, I am his caregiver. This has really made me second guess, whether or not I am "always" doing the right thing. 

Thank you,

Kay

Hi Carol,

 

I just read your account of the Bethany dementia bootcamp...How can I read it and not come away with...is it really that helpless?  I'm guessing the answer is yes but it still is shocking.  If it makes me feel one thing, it makes me feel like I need to know more.  Grandma is clearly showing major signs of dementia but she still doing pretty well over all...this makes me think about the changes that are in store for her and how I respond to those changes.  Thanks for such a good account...I guess I need to head over to Bethany and take the tour myself.