My wife, Marty (Martha), has Alzheimer’s Disease and I am her primary caregiver. Since November is National Family Caregiver’s Month sponsored by the Alzheimer’s Association, it is a good moment to share a slice of an average day she and I experience together, and information about dementia (there are many kinds—Alzheimer’s is just one). All this is a “shout-out” to the millions of people around the world who are caregivers.
Until Marty actually became an unpredictable, uncertain and sometimes obsessive Alzheimer’s victim, I did not understand the disease. I thought I did but I did not. Meeting folks at the Alzheimer’s caregiver meetings allowed me to learn that what I write here is not unique to me. It is more or less part of the norm within an Alzheimer home and I am just one of a vast multitude of caregivers living alongside this illness.
I never imagined the confusion and fear that slowly and relentlessly fills the vanishing mind of the person under attack by the Alzheimer’s demon. I never knew until I shared her physical world. I wish I did not have to know. What follows is a brief conversation that Marty and I had last evening. She was sitting on the sofa and it was about 6:30. I had just walked in from the other room. The conversation went like this:
“Oh, I’m so glad you’re back home. Are you going to stay here?”
Not having been anywhere, I was caught a bit off guard. I answered, “Uh—um—of course I’m staying.”
“Do you have any of your things here?”
I reply, “Why don’t you walk back to the bedroom and check the closet.”
She sighs and smiles. She is faking because, even though she has lived in the same house for many years, she has no idea where the bedroom is located. She tries to “play it off” because she doesn’t want me to know that she doesn’t know. But I do know and she knows I do.
So I nonchalantly point and say, “Back that way, where the big bed is.”
She shakes her head and says, “Oh, of course, sometimes I don’t know where my head is.”
I simply say, “That’s okay. No problem.”
“Well, are you going to sleep here tonight or go to the other place?”
There is no other place and I have no clue where her mind has taken her. I just go along.
And then it is temporarily over and the evening continues. More is on the way, such as telling me she really wished she did not have to work tomorrow even though she has not worked for almost 10 years. You get the idea.
More to read: As Alzheimer’s steals my wife from me
For the caregiver it is a two-edged sword. You are watching someone you love mentally evaporate while at the same time trying your best to be as patient and as kind as you can be to that person. As the caregiver it can sometimes be a bit overwhelming. Redundancy can push your patience levels to extreme borders. As Marty’s caregiver I can say, unequivocally, that my greatest strength comes from my Catholic faith. I lean on it like a man with two broken legs needing crutches. Without them—well, I would fall hard and often.
There are many types of dementia but Alzheimer’s is the primary cause. Vascular dementia, Parkinson’s disease, Huntington’s disease, mixed dementia and others are a few conditions on a long list of illnesses that cause dementia. Alzheimer’s is a progressive disease and it continues to worsen as time goes by. There is no remission or leveling off. Eventually the patient will lose the ability to carry on a simple conversation, or even remember to use the toilet. The end result is always death. It is truly a dreadful illness.
As people live longer the illness is seen more and more. More resources have been allocated for Alzheimer’s research. Prayerfully we will find a cure.
Here is a side note: The patron saint of Alzheimer’s patients is St. Dymphna. Ironically, St. Dymphna has had a profound involvement in my family life. My daughter’s middle name is Dymphna. When I discovered that St. Dymphna, the patron saint of nervous and emotional disorders, was also the patron saint of Alzheimer’s and dementia patients, I could only smile. I love St. Dymphna.
Please remember to keep all Alzheimer’s and dementia patients and their caregivers in your thoughts and prayers, not just during the month of November, but all year long.
St. Dymphna, please pray for them and for all of us.