Each time my mother takes a downward turn cognitively or exhibits some new negative behavior, I once again have to do some transition work. I think of it as being somewhat like negotiating a passage across a stream where there is no bridge, just a series of slippery rocks with waters of resentment and anger swirling around my feet.
These negative emotions are particularly dangerous traps for caregivers who are providing support to people who once supported them but are no longer able to do so. Guilt, resentment, and a critical spirit are caregiving pitfalls, and to love as we have been loved and forgive as we have been forgiven requires God’s grace.
My mother's latest behavior is to hold fast to the belief that she is not being given an adequate supply of what she needs, whether it be food, affection, or quality time. Any attempt to reason with her elicits this response, "Never mind. A senior citizen is not allowed to express an opinion." If she is rude and I remonstrate with her she says, "I was just joking. A senior citizen is evidently not allowed to joke." If she asks how long my brochures (?) say a senior citizen should be left alone, and I say I was just in 15 minutes ago; she becomes sullenly angry and says, "I should never try to tell you anything."
One cannot reason with a dementia patient. Mom is locked into her current world view. Although she has happily followed roughly the same schedule of book reading, music listening, exercise and companionship for the past eight years, she has now decided that she is being neglected.
It is a basic caregiving premise to go with the line of reasoning the patient believes to be true. When she says sarcastically, "Well, it certainly is good to finally see you," my response should be a warm smile and an affirmation that it is good to see her too--not, as I'm afraid I've done recently, an incredulous response such as this:
"Good Heavens, Mom, I've spent over an hour with you already this morning; sometimes I think nothing would make you happy but for me to spend all day and night sitting three feet from you awaiting your command!"
I ought to know better, I do know better. But it is almost impossible not to respond on an emotional level to each new dementia related behavior. I've been leaving her room unhappy and upset and my poor co-caregiver (husband John) has been getting a daily earful.
Today, I stopped and prayed as I always do before I enter Mom's room, and this time I asked specifically for God's grace to respond in love to her no matter how she came at me.
I wrote a positive message on her white board, surrounded by little hearts. I sang out "Good morning Mama!" in loving tones. When she acted grouchy toward me, I agreed with her that it sure was aggravating not to have anyone to carry her coffee to her chair, and hastened to do it for her.
This made not one whit of difference to Mom's behavior. If anything, she became more sullen. But when I left the room my mood was upbeat and happy, because I had not responded in a negative way to her despite her grouchiness.
Mom's had a physical. She does not have a UTI; she is not ill or in pain. We've analyzed her medications, we've changed her diet, we've increased her exercise. We've tried listing the timing and number of our visits on her whiteboard to no avail. She gets plenty of daily light, vitamins, fish oil, conversation, music, etc.; although your suggestions are welcome, I'm not really asking for ideas for needed changes in care. Mom's had Alzheimer's for eight years, and her recent responses have to do with the portion of her brain that is being damaged by the inevitable, irreversible progression of Alzheimer's disease. It is not her fault. She should not be remonstrated with or chastised.
As always, the needed change today was the responsibility of the caregiver. I can't tell you how light my mood has been all day. To respond in love to someone who is unloving toward us is to emulate our Lord, and that is a wonderful feeling.
A positive and kind acting caregiver does not necessarily make for a happy patient, but it does make it possible to be a happier caregiver .
Scripture: "When I said, “My foot is slipping,” your love, O LORD, supported me" (Psalm 94:18).