No one likes to be told what to do, and this one fact causes much discord in the caregiver/patient relationship.
Caring for someone who has dementia requires grace and humility to be able to comply with the loved one's demands. Being a dementia patient is difficult, too; imagine not quite understanding one's circumstances or the reason for the loss of autonomy that has resulted in being told when to bathe, eat, and sleep.
I let my mother down rather severely last night. The ongoing difficulty is that I tend to respond to her as though she was the competent mother I had pre-dementia.
Mom called at about 7:30 p.m. and asked that her shades be put down.* She calls the mini blinds that are at her big bay window drapes, and said, "Could somebody please close my drapes?" I was watching TV and did not want to get up. Furthermore, Mom is still able to lower the shades herself, however, the middle blind had broken, and a replacement blind had arrived. My husband John's extra height allows him to reach the brackets for the blind without a step stool. So I told Mom that when John arrived home I'd send him in. "It will be just about a half an hour," I said.
Several caregiving errors transpired here. I assumed Mom could remember help was on its way and was able to figure out a short term solution for the discomfort of sitting opposite the night darkened windows. She could have chosen to sit on the couch rather than in her chair, removing her from the line of sight from the windows that bothered her. She could have closed the two side shades herself. Or she could have done her best to ignore the situation, trusting that help would soon come. But the fact is once Mom had asked for help, she had shot her strategic bolt and was done. She sat, imprisoned by the dark windows, and felt increasingly frightened and helpless. And then she got angry.
And so she called once more and yelled at me. She often suffers the misconception that she lives in an apartment and needs to call maintenance for anything that is amiss, and she began the conversation by saying she would like to lodge a complaint. Her voice trembled as she spoke of the big, dark windows staring at her. And instead of responding with compassion and remorse, I acted like a child being taken to task by her mother. I was offended and I allowed her to see that I felt affronted as I clambered atop a step stool to temporarily prop the old shade in place. I repeated her offense to my husband the instant he walked in the door and as a result he was somewhat terse with her as he installed the new blind.
Mom sat, huddled in her chair; aware she had done something wrong but still struggling against the vestiges of fear that had been elicited by her lack of ability to control the discomfort of sitting in front of those looming, dark windows.
I've repented of the sins of lack of compassion and empathy for my mom as well as for repeating her offense to my husband; but my penance is completed by recording the facts of this event here. If one other Alzheimer patient can be spared the heartache of coping with a non-empathetic and childish caregiver who lacks the grace to submit to being asked to carry out a simple task in a timely manner, maybe poor Mom's discomfort tonight will not have been in vain!
I speak to myself and to other caregivers struggling with similar issues: GROW UP! Children are unable to receive instruction or to submit to requests without balking. Grownups ought to be able to feel compassion and to submit to requests with humility. Lord, grant me grace to be a grownup who can respond to my mom's demands with grace.
Scripture: "Be completely humble and gentle; be patient, bearing with one another in love" (Ephesians 4:2).
*My mother, though in the mid stages of Alzheimer's, is still able to use the phone. I've programmed my cell phone number into her phone on "speed dial," so she has only to press one button to put a call through to me. I painted the button she must push with red fingernail polish, and used my label maker to place instructions right on the phone: "Lift receiver, press red button."