Tips for the Caregiver
I learned important lessons from saints with whom I shared my Thanksgiving Day. I use the word saints because that is what I consider all people who seriously commit to giving loving care to those with dementia and Alzheimer's. Granted, many would not consider themselves saints. You may understand why I refer to them as saints when you read Phyllis McGinley's words:
The wonderful thing about saints is that they are human. They lost their tempers, got hungry, scolded God, were egotistical or impatient in their turns, made mistakes, and regretted them. Still they went on doggedly blundering toward heaven.
This was my first Thanksgiving dinner with my sister-in-law and her family. While there, I met her adoptive mother, whom I will call "D". I learned that D suffers from dementia and is also blind and deaf. Having watched D's rather understated reaction during introductions, I began to wonder: with almost no sight or sound for stimulation, how much of the PRESENT is actually getting through to D? How much can she possibly comprehend?
Dinner with someone in the throws of dementia proved to be very thought provoking. I saw behaviors in D which would be outside the realm of normalcy. For dinner, D refused a plateful of food; all she wanted was a turkey leg. She exhibited more erratic behavior just before dessert. D repeatedly-and rather rudely-asked for pumpkin pie until someone finally got her a dessert. I hope this behavior did not embarrass her family - I suppose in her case, this behavior is to be expected. If one cannot see or hear, how does one know WHEN to ask for something? How does one know WHEN someone is doing as she asked? Behavior that seems rude or stubborn might be perfectly understandable to D, when you think about it.
I was very uncomfortable trying to communicate with D. Most of the conversation at the table never even included her, now that I think about it. When her dear friend encouraged her to remember an experience that they had shared decades earlier, D was able to be an active part in the conversation. Other than that, she sat quietly at the dinner table, a statue in a windstorm of conversation. At one point, I heard D begin to sing "Auld Lang Sine" to herself, probably reliving inside herself some past memory. I wonder what it would be like to live in that kind of world - within your own mind most of the time. Is it like running old re-runs on TV? Is it in HD? How real does it seem?
As we were leaving, we saw her friend and her son-in-law looking at pictures, describing them to the D. As they did, D showed signs of recollection through more animated conversation.
So what did my experience at Thanksgiving teach me?
1) Caregivers need to allow the person with dementia the freedom to make a choice - even if it is NOT the choice the caregiver would have made.
Fight the big, important battles - not the small ones. If he/she wants only a turkey leg for dinner, so be it.
2) Make a list of items that you'll need when taking "Mom" out. Make up a "take-out bag" for when she is taken somewhere. Be sure to include any pads or diapers (this was the problem they had on Thanksgiving). Include something familiar which may provide her comfort in a time of distress.
3) Find topics and times in common with the person. Use pictures or objects to encourage conversation.
Loving, conscientious caregivers of Alzheimer's and dementia sufferers are saints. They may become impatient. They may get embarrassed by their loved one's antics. They may grow tired of their responsibility. They may grieve the loss of their loved one's former self. But they trudge along. They work to do the best they can by their loved one. They continue to blunder their way toward heaven... They are saints!