Thursday, September 29, 2011

Bath is done and I didn’t do it!!!

Handling Mom’s bath for the last month and a half paid off. 

Two weeks ago, her aide, Tina, told me that her goal was to get Mom to allow her to do the bath.  Last week, she joined us as I bathed Mom to get an idea of what worked and then said that she wanted to try this week by herself – without me around – to see if Mom would cooperate.
Tuesday, the day I usually did the bath, I waited to visit in the afternoon.  The bath wasn’t accomplished that morning but, quite frankly, I don’t know how anyone could have accomplished anything!  Oh my goodness!  You would have thought it was a full moon – it was a new moon so maybe the combination of that and the weather could explain it.

Mom had pitched a fit in the morning.  Night shift had forgotten to take her dirty clothes out of her room from the night before.  Mom was up early and dressed in them before Tina arrived that morning.  At that point, Tina was lucky to get Mom in clean clothes, let alone doing a bath.
Mom wasn’t the only one acting out, however.  I found one of the other ladies stripping off her clothes as she walked and she had quite a few harsh words for Tina and Whitney as they tried very kindly to get her dressed again.  Another one of the ladies was singing with us one minute and yelling at us the next.  Two of the gentlemen were up all night wandering around and so were sleeping off and on.  When they weren’t sleeping, they were yelling or getting into things – and also stripping!

I’m sure it wasn’t right but I couldn’t help laughing when Beth, the Life Enrichment Assistant, would try to get the residents together for an activity.  She would get one or two but before she could get another, those first two had wandered off. 
Everyone seemed to be in their own little world and they all seemed to feel that their world was a little off kilter at the moment.

It was comical but I did truly feel for the workers.  Those are the days that they are cussed at, hit and just generally abused.    You can see them getting tired as the day (or night) wears on.  It’s amazing that, in spite of the treatment they receive at times, it’s easy to see that they truly care for the residents and come to love them like their own family.
Wednesday was a new day, thankfully.  Tina set up for Mom’s bath and, other than a few minor grumbles at first, they sailed right through and Mom was a very happy camper.  When telling me about it today, Tina shared that her husband said she had talked about Mom in her sleep Tuesday night.  She thought it was probably because she was anticipating doing the bath – and hoping it went well!

Now that she has one successful bath under her belt, I’m sure my bathing Mom days are over!

Monday, September 12, 2011

Walking in their shoes…

After living through Daddy’s Alzheimer’s journey and learning so much about it from Mom, I thought I had a pretty good handle on it.  I read The 36-Hour Day and learned more.  I’ve spent time on the Alzheimer’s Association forum and other caregiving forums and read lots of information about the Alzheimer’s and dementia and the progression of the disease.  The point of view never occurred to me.

Recently, my daughter who has epilepsy was watching a show on TV.  They were discussing Alzheimer’s and they put some sort of a hat on a person that allowed them to interrupt the electrical activity in that person’s brain.  They then gave the person instructions to carry out.  My daughter identified with the outcome immediately because her absence seizures cause the same type of difficulty in carrying out a plan or following instructions.  As she described the experiment to me, I also identified with the outcome.  Many, many times we have watched our daughter walking around looking much like a pinball in a pinball game – popping here and there but not accomplishing anything. 

For years I cared for my daughter while she dealt with the seizures.  I learned everything I could about it, I went faithfully to the parent support group, and over the years became better and better at handling her care.  The Epilepsy Foundation was an excellent source of information, even providing films and stories from the point of view of people with epilepsy.

So what has been missing from all my forays into learning about Alzheimer’s?  My Mom’s point of view!  What does it feel like for a person experiencing Alzheimer’s?  Everything I have read has been from the caregiver’s point of view.  The information is excellent but this past week I realized that all that information stops short of actually helping us really get a feel for what our loved ones are going through.

A particular book was mentioned a couple of times at my Alzheimer’s support group.  I finally read it last week.  Oh my!  Did it pack a wallop!

I strongly suggest that everyone dealing with this disease – or the possibility of it in your family – read Still Alice by Lisa Genova.  It is a novel written from the Alzheimer’s patient’s point of view.  Yes, it is a novel, but Lisa Genova’s Ph.D. in neuroscience from Harvard allowed her to research the subject from all sides – clinical, caregiver and most importantly, patients. 

She tells the story of Dr. Alice Howland, a world renowned Harvard professor, diagnosed with Early Onset Alzheimer’s Disease.  Alice’s first person account pulls you in completely and lets you have that view into the impact of the disease.  Sometimes sad, as you would expect, the account also provides moments when you can laugh with Alice. 

Most importantly, taking the journey with Alice will build empathy in your heart for anyone dealing with the disease first hand.

For more information, visit  You won’t regret it.

Tuesday, September 6, 2011

You have to think about what they deal with…

I had full intentions of writing about poop today based on a funny incident yesterday.  After my visit with Mom this morning, I decided to save it for another day.

I had an excellent visit with Mom.  We walked and then sat and played a lively game of dominoes with two other residents, the Life Enrichment Assistant and one of the aides.  It was comical!  Mom was snoozing off and on and playing out of turn while June, one of the other residents, bantered back and forth with us all.  So much fun and so much laughing!

I was doing my best to brighten the day for the workers around me.  One of the aides commented that she was “so upset” but that my laughter made her feel better.  It seemed each person had something happening personally and needing some cheering.  The feelings came into better focus when I realized that one of the residents, a sweet little lady everyone called Miss Lu, had passed over the weekend.

I knew that Lu’s time was coming.  I interact with all of the residents and had watched the gradual decline as she stopped eating and talking.  The end came quickly.  She was walking with a walker just a couple weeks ago, then she was in a wheelchair and although she didn’t speak, she would look at me when I spoke to her.  I wasn’t surprised to see hospice involved because she was no longer eating, and then last week, she didn’t see me at all.

Lu’s daughter arrived to bring all the wonderful caregivers some home-baked cookies in thanks for the loving care her mom received.  The truth about the frustration over things happening in their personal lives came out.  They were all dealing with inconvenient things in their personal lives but topped with the loss of their sweet little Miss Lu, it was no longer frustration but terrible grief.  No, Miss Lu was not their mother, or any relation for that matter, but she was loved by them all.

I will not try to tell you that all of the folks that work in nursing homes or assisted living facilities are loving, caring people.  For some it is just a job and it is obvious when watching them work with the residents in their care.

I believe that the majority of people who work long term in those facilities have been given the ability to truly care for the people they are helping – even when the residents are cranky and difficult.  With that caring comes pain because ultimately, their charges are marching toward death.  All the caregivers can do is try to make the residents’ lives as happy and comfortable as possible until the end – when the resident finds true happiness and peace in death while their caregivers deal with yet another loss.