Alzheimer's is a deadly serious disease and deservedly so. Yet I ask this: Does being 'serious' mean that it is horrible and depressing? Yes, it can be horrible and depressing. But is it always that way? I think not. I think to some extent at some times it depends on the attitude of the beholder. Let me illustrate with three hypothetical vignettes.
Nancy never wants to go visit her father, George, who's living in a dementia unit. It breaks her heart to see him. This former brilliant and powerful defense attorney had a vibrant life and a stellar memory. Now all of that's gone and he's reduced to sitting in the activity room batting about a balloon -- playing balloon volley ball.
George often talks nonsense, and Nancy tries to get him to act 'normal.' Furthermore, George can't control his bodily functions these days and thus wears diapers.
Distraught, Nancy visits her father for a half hour three times a week then cries all the way home. She wants her 'old father' back but knows that with time he will only get worse. The pain is searing.
John, too, is distraught when he visits his wife, Jean. First of all, he finds the facility per se depressing. After all, it's full of demented old people whose deaths are not far away.
While walking to his wife's room, he passes several residents sitting in wheel chairs. Most are either staring into space or else their heads are hanging down and they appear to be dozing. Others look bored to death. What a waste of human life, he thinks.
Worse still is his wife's condition. She can't bathe or dress herself. She needs help eating. She carries a baby doll around with her everywhere she goes. She acts as though it's a real baby. He thinks it's beneath her dignity and has tried and tried to convince her it's just a doll. He has tried to get her to give it up. All to no avail.
John is also upset because his wife keeps asking where her father is. Well, her father passed away 10 years ago. John has told her that many times, but she keeps coming back to that same question. Once he showed her the death certificate but that didn't help either.
Jill is another regular visitor to the facility. Her mother, the past president of a major university, is in a wheel chair and can often be found playing Bingo, which she can't play unless one of the aids helps her. Her mother's other favorite activity is the sing-alongs held every Tuesday and Thursday. Most days she doesn't even recognize Jill.
Jill's reaction to the situation, however, is very different from those of Nancy and John. When she walks down the hallway, full of apparently non-responsive residents, she waves at each one and says "hello" in the tone of voice you'd use with a friend. The most surprising thing happens. First they usually look surprised. Then most of the time their faces light up and they return her greeting.
Sometimes Jill arrives during the Bingo game and sits beside her mother as she's playing. Instead of thinking how much her mother's mental capacity has declined, she notes that her mother has a smile on her face. Jill is so happy that there are still things her mother enjoys -- no matter how simple.
Although her mother usually doesn't recognize her, it's obvious that she enjoys Jill's visits. As far as the diapers her mother wears, Jill isn't upset by them. There's nothing inherently distressing about diapers. All babies wear them and that isn't depressing to anyone.
To a great extent, our attitudes about long-term care facilities and people with dementia influence how we view them. If we are in denial and try to insist that our love one talk and behave like a 'normal' person, we will be miserable every time we see the person.
If we focus on what our loved one can't do rather than what they still can do, visiting will be painful. If we focus on comparing the person's current mental state to their previous one, we will suffer.
If we think about our own unhappiness rather than on our loved one's reaction to the same issue, we will never be able to accept the person's illness. We will never be at peace with the situation.
Sometimes the best thing to do when something upsets us is to ask whether our loved one is upset by it. You may be distressed, for example, because the aids don't style your mother's hair very well. But ask yourself is my mother upset by it? If not, then let it go.
Jill enjoys her visits because she accepts her mother just as she is. She doesn't try to change her. She interacts with her at her level -- not her previous level.
They enjoy their visits, which usually leave her mother in a good mood even though she doesn't always remember the visits. Jill feels contented when she leaves and looks forward to the next time.
No, Alzheimer's doesn't always have to be depressing all the time.
Would anyone like to share a positive experience with a loved one living with Alzheimer's?
Marie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. Her website contains a wealth of information for Alzheimer's caregivers.
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