Tuesday, May 19, 2009

Compassionate lying or honest cruelty?

I was listening to NPR this afternoon and one of the topics on Talk of the Nation, Lying To Alzheimer's Patients, really struck a nerve.

My Grandma passed away from complications of Alzheimer's 11 years ago. My family and I watched her slowly transform from a vibrant, healthy grandmother, mother and wife, to a confused, thought scattered, toddler in an adult body. The transformation was not quick, it took years for her to slowly forget how to function normally in daily life. She would forget how to quilt, knit and cook the best food you would ever put in your mouth. The one little thing that I missed the most that still makes me sad is she would say, "Grandma loves you" when she would kiss us goodbye...and this f*cking disease made her forget, made her forget us, made her forget herself, and I hate it.

We had a Sunday afternoon tradition of having supper at Grandma's house after church. She lived for Sundays, church and then her family coming over for supper. She was the best Grandma in the world, she would always have Dentyne gum in her purse and a folded kleenex under her watch. We first started noticing the signs when she couldn't remember her recipes for the dishes she had cooked for over 50 years. And, when she couldn't remember how to quilt her quilting squares together she had worked so diligently on months before.

Alzheimer's is like a thief that you know is stealing your valuables, your important thoughts, but you cannot make them stop. The more you want to remember, the more it takes. It is a shitty disease that I wish medicine had a cure for, but unfortunately there isn't. This shitty disease also runs in families. I worry about my dad sometimes, like when he tells a story that he has already told us, and he doesn't remember telling it before. I love my Dad so much and he was so brave and strong with my Grandma, I don't think I could be that strong if my Dad suffered the same fate. But, I guess we never know what we can endure until we are in that situation.

When my Granddad could no longer take care of my Grandma, we had to put her in a nursing home. We really didn't want to do this to her, and we waited as long as we could, but she was at a state where she was harmful to herself and to others. She was like a unsupervised toddler, she needed to be cared for 24/7.

When Grandma was in the nursing home we would visit her on the weekends. My oldest daughter, Cork, was just a baby then, and I can remember it like it was yesterday. We would come in to her room and she would be sitting, staring into space. She would look at us and there would be no recognition, she did not know us. She would, on occasion, have her good days, and would know my Dad (her son and only child) but usually, she knew no one. When we would take Cork out of her baby carrier and give her to Grandma, she would light up like she was her old self. It was like she could relate to a baby, like they could communicate somehow. I never worried about her dropping or hurting Cork, she was always so gentle and kind to her, it was almost therapeutic for her. I always looked forward to the interaction between Grandma and Cork, it was if she could bond with her like she couldn't with us.

What was the question again? Oh yes...do you lie to Alzheimer patients?

I ask you one thing before you answer.......Why would you make your loved one relive the same feelings over and over again if they will never remember what is told to them? If they will experience the same story as if it is the first time they have heard it....each time they hear it.

That is what I believe is cruelty. I know there is not a concrete answer for each case, and in the end, the family needs to make the final choice for each situation.


bonsairick said...

I heard the NPR story as I was on my way over to visit my Mom. She has Alzheimer's Disease and loves in an assisted living apartment. She was once the Director of Elementary Education for our school system - now she can't finish a simple sentence. The NPR story was about lying to a dementia sufferer - would you do it? Yes. I have and do tell her little lies as opposed to having her suffer because she taught me to be honest. The disease sucks. She has very rare moments of lucidity, and we can see that it terrifies her in those brief moments when she realizes she has forgotten everything. And then she's gone again. It's really hard on my father. Part of the problem can be that the dementia sufferer lashes out at loved ones because she feels frustrated. So when she and I talk, the discussion just drifts along with no apparent goal. I pretend that she's finished the topic (though she forgot her intended topic as was beginning to speak). That is lying on my part. But she suffers far less frustration when I "pretend" that she has completed a sentence or thought. If that's wrong, so be it. But she's far less fearful.

Sorry for the long comment. But you post was SO timely.

Charmed said...

I am sorry about your mom. I know how hard it is.

I agree that the more you lessen her frustrations the more content she will be. And, she will trust talking to you more. If she is always frustrated by her conversations with you, she may stop talking to you altogether, and you certainly don't want that.

I can't even begin to imagine what it is like to live with a mind that is confused beyond reality. To have times when you are lucid and then not even know who you are. I am so scared that this will happen to me one day.

Anonymous said...

Hugs to you honey.........that's all...just hugs.

Warren Baldwin said...

I linked over from Best Posts. (I had an article there to - Amazing Mets and Mother's Day).

This was a moving story. I haven't had anyone in my family with Alzheimer's, but I have with other diseases where we watched them slowly lose health, energy and strength. It is hard.

Like your grandmother, my grandfather in his last days only smiled when he held our newborn son, his first great-grandchild.

About lying to an alzheimer's patient ... I don't know what circumstances would require lying them. Perhaps if they sensed something was happening to them and they wanted to know what? I don't know. Hard question that I haven't faced.

Thought provoking article, thanks. wb

bettyl said...

Thought provoking. It's hard to know what's right.