Saturday, November 25, 2006

How my sister changed my world

If anyone's wondering, the young woman in the video - "Richard McNally: A Life Forgotten" - is my sister, one of our father's many caregivers. I keep coming back to a conversation she and I had. Our father was a very healthy man, no health issues other than a mind riddled with plaques and tangles. He was sitting on the back patio - much of our time was spent on that patio - my sister and I were discussing hiring someone to help us. She was standing beside him, had just finished shaving his face, brushing his teeth, when she noticed his collar was standing up on his shirt. She smoothed it out, patted it down gently, and said, "No one we hire would do that." And that, as simple an action and as insignificant a statement as one could ever make, summed it up perfectly. And it scared the daylights out of me.

Surely a man's collar doesn't determine his quality of care, does it? It does if you know the code.

It isn't the big things that matter, it's the million and one small things. And with Alzheimer's care, it's ALL small things. Nursing homes stand as testament to that fact. There isn't a nurses aide on the planet who will disagree with me - there's not time to see to all the small stuff. And, in my opinion, that's why they crash and burn with the big stuff.

With Alzheimer's in our home, a single caregiver couldn't do it all without a lot of help. Real hands-on, attuned-to-the-unique-situation, let-me-in-the-trenches-with-you, move-over-I'm-coming-in, help. There were just way, way too many small things. And if the small things weren't covered, the big things crept in with alarming speed. Dad is lost, but I'm on deadline with a job! Dad is over at the neighbors, but I have to take the kids to baseball practice! Dad is fighting with the "man in the mirror", but I'm out of town! Dad has a rash, but I don't have a car and the pharmacy doesn't deliver! Dad has a fever, but the doctor won't come to the house! Dad fell down, but he's too heavy to pick up! Dad made Mom cry, but I'm in the middle of dinner! Dad won't get up, but I have to get the laundry done! Dad took the keys, but I am sick in bed! Dad, but! Dad, but! Dad, but!

In our eleven years of co-caring for our father, when it came to what had to be done, we struck the word "but" from our vocabulary.

For me, the most significant task my sister performed was the smoothing of our father's collar. The love of the man wearing the shirt, the determination that patted it down, the awareness that saw it was out of place to begin with, taught me more about Alzheimer's disease and the tremendous care it required than any of the innumerable "experts" we had consulted on the subject. She learned the code and was teaching it to me.

Some of you will recognize my sister's contribution. Everyone else reading that the simple act of smoothing a man's collar changed my world, will think I'm nuts. But that's part of the code.

When my father died, we started The Unforgettable Fund to get funding into the Alzheimer's lab at Scripps Florida. Since May, by word of mouth alone, we've donated almost $13,000, every penny going to research and research only. Our intention is to beat Alzheimer's disease. No buts about it. Please help if you can.


  1. Patty, what a compliment to your sister. Alzheimer's can tear families apart, but your family hung in there, and continues to work together. Your dad would be proud...

  2. The small things DO matter - and you are right: nurses and assistants in caregiving facilities do not have the time to take care of the small things because they are overwhelmed most of the time. I worry about the little things because it's just as much a comfort to me to do them.

  3. You're right that everyone deserves to receive decent care. I think that the level of care depends not only on how much money someone has but also how much energy their family puts in. It frightens me to think of what it must be like for someone without family to look after them. What a horrible system! Thank you for your work.