I've written about my mother's case of "pleasant dementia;" she enjoys life, doesn't need constant care, and is happy to spend time alone with her journal, books, and music. But there is an unpleasant part of her dementia-related behaviors that I feel I should discuss here, and I'm praying to do it in a way that honors Mom but yet assures other caregivers they are not alone. I also need to write this post for the sake of dementia patients whose upsetting behaviors might otherwise be chalked up to plain old meanness that is deserving of a like response.
Keep in mind we have a tendency to view the past through the lens of the present, so when an individual's current behaviors are mean and bossy there is a tendency to say, "You know, I remember other times my loved one was like this, and I see now this is nothing knew; they've always been this way!!" Be careful about this tendency to let the present rob you of positive memories. Be intentional about remembering ways your loved one has blessed you in the past. Make a list if you need to. Alzheimer's disease brings forth behaviors that, in the general population, would be labeled in negative ways.
Becoming dependent on others for care in combination with the confusion of dementia is a vicious one/two blow. A dementia patient loses freedom of choice that those of us who function independently take for granted. My mother's meals, clothing choices, finances, and surroundings are all orchestrated by me, and I do not always take her suggestions graciously. I'm tired, I do everything for Mom, and if she suggests that I have not straightened the cushions on the couch to suit her or that she would like me to change the painting over the chair, I'm likely to convey impatience. I'm ashamed of this tendency; I need to remind myself that a dementia patient's ability to ask for help outlasts the ability to carry out the multiple steps required to complete a task independently. I know I ought to be kind and work hard to respond to Mom sweetly when she treats me like a waitress or housekeeping staff.
I have a hard time with Mom's imperious ways, and I've noticed others do as well. She has adopted the attitude of one who is paying for services that don't quite measure up to her expectations, and this makes people respond to her negatively. She also is quick to respond sarcastically (if not appropriately) as though to prove that she understands what's going on well enough to make comment. I've learned that many dementia patients display similar behaviors. Not long ago I overheard a woman complaining angrily about her sister, who had just been diagnosed with Alzheimer's. "She expects me to wait on her hand and foot! She orders me around like a servant! And she is RUDE to me!"
Nursing home workers, home care providers, and anyone who works with a dementia patient need to remember the patient has no real power. As caregivers, we are calling all the shots for our care recipients, and for the most part their behaviors have no power over us beyond that of annoyance. We are the strong ones in the relationship as our care recipients cling desperately to shreds of free will that have been robbed from them by the horrors of forgetfulness and physical infirmity.
As care providers we can submit with good humor to being ordered around, do a little extra work at the care recipient's command, and continually remind ourselves of the underlying pathos of life circumstances that have placed these dear ones in our care. Treat them gently, and with love. Respond to poor treatment with kindness and resist the urge to respond in kind. They are not children who need to be disciplined, they are old people who have lost nearly everything they once held dear. Let's not take our love from them at a time when, no matter how they are acting, they need it most.
We who are strong ought to bear with the failings of the weak and not to please ourselves (Romans 15:1).
Good post, Linda.ReplyDelete
Love bears all things. I realize that others are noticing how I treat my husband who has mixed dementia. I am fortunate that we still show respect to each other. He does know that he has short-term memory. He cannot walk now since Tuesday, but still thinks he can walk with his remarks until he tries and he realizes he needs the wheel chair. I have no idea if he will be able to make him to church tomorrow.