Jun 18, 2010

The Wonder of Alzheimer's Caregiving

"The highest reward for a person's toil is not what they get for it, but what they become by it." -- John Ruskin ....
By Bob DeMarco
Alzheimer's Reading Room

This is a good example of the wonderful, positive emails I receive here at the Alzheimer's Reading Room from Alzheimer's caregivers around the world. An entire myriad of feelings run through me as I read.

With tears rolling out of my eyes, I somehow feel happy and proud. That might sound a little odd.

In a way that only a caregiver can understand, Alzheimer's caregiver can be a wonderful, uplifting task. A task that goes on and on and on and for years -- for many.

As this caregiver wrote, "You learn the tricks of the trade or at least try to solve them." The metamorphosis of the caregiver is a process that continues from beginning to end. People often say, I don't know how you do it. We just do.

Look up into the sky at night, there we are.

Here is a copy of the email

Blessings To You and Dotty,

Thank you for posting the update on Tom DeBaggio. I was driving home one evening when I heard his story on the radio. Then when I got home I looked it up on the Internet. Several years has passed now and it is all too sad.

I wrote to you once about Mom and I and our journey together.

Mom will be 82 June 21st. She is a frail 83 lbs. It was 13 years ago we began this journey together. Dad passed away 14 years ago of prostate cancer.

IM so blessed she is still here with me in my home. I call her my Angel. Hospice was in yesterday. Her vitals are good. Chest clear, blood pressure and heart rate. I asked the nurse how long can they continue being so little. Her answer.......longer than you may think.

Everyday I get her up with the help of her transporter chair. She eats good. Oatmeal, mashed bananas, O.J. I hide all her pills in her food. Mash them up. She eats a good lunch and dinner. The Hospice nurse told me she will let you know when she no longer wants to eat. Well, there have been days she does not open her mouth. She cements those lips down. ha! I pry them open, place the straw in there and tilt a little fluid. Tell her, now swallow. Then hand her the sippy cup and she drinks all by herself. I call it awakening the senses. I bought a juicer awhile back. I make fruit drinks and vegetable drinks.

She reclines most of the day and naps in and out. I bought a sofa couple years ago in family room just for Mom. It has heat and massage. She loves it. On her bed I bought a piece of memory foam and placed it under the mattress cover. I thought it was a good idea for any pressure sores that could develop. Guess what? we have experienced 0. Yeah! When placing the incontinence pads on top.......well they move around sometimes. Or in Mom's case...in her moderate stages she used to pull them off. ha! So, I thought one day, I'll buy a roll of duct tape. It worked and that solved that problem. Honestly, we had very few accidents through the years. You learn the tricks of the trade or at least try to solve them. I have shared some of my techniques with the nurses, there reply..that's a great idea...maybe you would like to come to our Monday morning meeting. ha!

She still talks everyday. Mostly, yes and no. Sometimes a 5/6 word sentence will arrive. Two days ago, she said my name. She does love music. She still can sing most of Somewhere Over The Rainbow.

It really has been a peaceful journey. There was just a few months in the moderate stage where agitation was prevalent. I saw the fear of the unknown in her eyes. She got up through the night a lot. I always kept in mind...the window opens, the window closes and tomorrow is a new day.

We learn so much from them. Those two intersections that meet are true. I used to do puzzles with her a lot. Then down the road I starting buying the kids large 6/8 piece assemble. There were days she could not do them. Then one day she completed the puzzle. Looked at me and said, "IM not as dum as you think I could be". ha! I laughed so hard, I cried. I always tried to keep her active. She loved planting flowers, gardening, watching the birds. I have 6 feeders and all the flowers we planted through the years......they will always be beautiful memories for me. We still look at them and watch the birds. I planted a small garden this Spring just for Mom. She loves her strawberries and tomato's.

I don't dwell as much as I used to as how all will end. I know we could be there now. As much as we try to prepare ourselves as caregivers through knowledge and experience........I believe the final curtain call will be between them and God. All I can continue to do...is let her know everyday how much she is loved. That IM her daughter and all is peaceful and safe and you have nothing to worry about. She smiles and sometimes grasps for my hand. I still tell her everyday. At night when I tuck her in for 13 years we share our "Motto" ...I point to her heart and say You, then my heart and say Me and she says Forever.

Our strength will carry us through.......it honestly does. We as caregivers are the chosen one.......the one person that as been selected to see them through this difficult journey.....long before we knew it existed. That makes us special and as we continue to hold on.... God will continue to reveal so much more to us and them.

Your a wonderful son Bob, the chosen one and because of You..........Dotty will know in her heart forever.


"All I ever am, or hope to be, I owe to my Angel, my Mother." Abraham Lincoln

"I don't think of the misery, but of the beauty that still remains." Anne Frank

"The highest reward for a person's toil is not what they get for it, but what they become by it." John Ruskin

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Original content Bob DeMarco, the Alzheimer's Reading Room