When relating to a person with Alzheimer's there are many guidelines to follow. I'm going to discuss five of the most basic ones here: 1) Don't tell them they are wrong about something, 2) Don't argue with them, 3) Don't ask if they remember something, 4) Don't remind them that their spouse, parent or other loved one is dead, and 5) Don't bring up topics that may upset them.
I'm talking here about the dreaded "N" word -- nursing home. I'm talking about placing your loved one with Alzheimer's in a care facility. Virtually no one wants to do it and few if any people want to go. This will be one of the most difficult, heart-wrenching decisions you, as an Alzheimer's caregiver, will ever have to make.
There is no substitute for actual experiencing, or as close to it as we can get. Only then can we feel from the heart, the extent of what our loved one may be going through. This is much more powerful than just reading about it. With its built-in readiness, caring from the heart is a lot lighter on us and more likely to sustain us in the long run.
Our physician training system currently increases suffering for patients like me and the millions of community caregivers who help us. It raises healthcare costs and adds significantly to physician burn-out because we neither select for empathy nor prepare future doctors to understand how patients work, live, and die.
Alexandru was a close relative of Ed -- my beloved Romanian soulmate of 30 years. Alexandru was visiting Ed from out of town. One evening they had a long talk about a wide range of topics -- most of which concerned Alexandru's professional issues. The next day Ed had no memory of the visit, let alone what they had discussed.
Sometimes it takes so little to bring joy to a person with Alzheimer's. The following story is a case in point. One day I arrived at the Alois Alzheimer Center to visit Ed, my beloved Romanian soul mate. As soon as I got out of the car, I realized I'd forgotten to bring any "props" for the visit. I was going to have to be creative.
Alzheimer's is, above all, an insidious illness. It begins with very mild symptoms -- things we all do from time to time, such as forgetting to turn off the stove, temporarily forgetting an acquaintance's name, or misplacing the car keys. But for the person with dementia, these events will become more frequent, and with time, more serious symptoms will appear.
Facing the Herculean challenges of caregiving requires all the strength you can muster, including spiritual strength. It has been our experience that caregivers who develop what we would call "spiritual intentionality" are better able to face these challenges and retain their joy and hope than those who seek to go it alone, fueled by denial, anger and resentment.