Tuesday, May 15, 2012

Grow Up!

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."


  1. You honesty will be a life-line to many a caregiver. I keep spreading the word about your blog to people I know who are caregivers. Even though I have moved from caring for the elderly, my heart remains compassionate for the caregiver and the person with dementia.

    Bless you!

  2. Doris, thank you. I work hard to carry out this ministry God has given me; I share your heart for caregivers and dementia patients. Sometimes it is difficult to know if those who need these messages are receiving them, and so your words encourage my heart.

  3. It's hard to admit our faults and when we do it really helps us to move forward with new understanding. But we can't always see things until after the fact. We are always going to make mistakes. To really learn from them is the key. You are sharing what others totally understand, because of being there themselves.

    I check your blog from time to time and always enjoy your writings.


  4. Thank you for your blog! I recently found it through a friend's blog. Sharing your heart and experiences is so encouraging and helpful to me.

  5. Please don't beat yourself up. You're in the process of learning to have a completely different role with your mother. It's so hard, but time and experience will help you.

    Keeping you and your Mom in my thoughts and prayers,

  6. Oh, no worries Dolores, I am not the least inclined to beat myself up! The Lord has to usher me to repentance by sneaking in His guidance at 3:00 a.m., when my defenses are down! :) It is my prayer that my willingness to share my shortcomings--ok, sins--will not only help other caregivers heave a sigh of relief (whew, thought I was the only one...) but will also shed light on the true nature of the sin that is so easy to indulge when we feel betrayed and abandoned by a loved one who "should" be taking care of us but who is now demanding that we take care of them.

  7. I am having an issue and it is causing tension between my wife and I. I would like some feedback if anyone is willing. My wife's mother married a man who is not my wife's father 18 years ago. As they aged we moved into a house next door to them to be thier caregivers. My wife's mother passed away unexpectedly last year and we were left to take care of her husband. He has since been diagnosed with moderate to severe alzheimer's. Again, he lives alone but right next door to us. The main issue we are having is that he now knocks on our door literally every five minutes for no reason. He does this 24/7. It is driving us crazy and to make it worse we home school our children and that is becoming impossible with him constantly disturbing us. We had discussed this and decided the best thing to do was to not answer the door then once he leaves go check on him to make sure he is ok. If we answer the door he barges into the house and interrupts whatever we are doing and it's difficult to get him to leave. Plus I felt that answering the door was encouraging the negative bahaivior. The problem is that when he knocks my wife cant resist the urge to run and open the door. We argue becasue it seems that when the door gets answered he knocks more. We have asked him not to do this but he never remembers. Now if we dont answer the door he goes around the house knocking on all of the windows and yelling out our names. This is a very frustrating situation. We check on him several times a day and make sure all of his physical needs are met but this is really getting hard to do. Please advise if you can.

  8. Oh, Mike, I'm sorry for what you and your family are going through. This is a difficult time I know. I have no real advice except to tell you that when I don't answer my mother's knocks, she threatens to call 911! She's never carried through on this threat but I wonder if your wife's stepfather might not be poised to do something like this if he feels so panicked that he's pounding on your doors and windows. The Alzheimer's Association (alz.org) has a 24/7 hotline you might try. Other sources of help: your local council on aging and your local chapter of the Alzheimer Association's support group. I've found the caregiver's message board at the Alzheimer's Association's website quite helpful. Hoping you find the help you need soon, Prayers your way.