Guest blogger Sandra Savell tells about the struggle to live with her mother in the throes of Alzheimer’s, believing she is being abused, the stress of the situation and the heartbreak of the lack of support she receives during this difficult time.
By Sandra Savell, Author of “Dear Clueless: A Daughter’s Journey Through Alzheimer’s Caregiving”
Mom is awake for the second time this work week at 1 a.m. making toast for breakfast before she gets ready to leave for work. The problem? She retired 18 years ago. It is suddenly very quiet in the house and I can’t find Mom. I go on a search and I find her in the garage in her underwear rifling through the freezer, looking for her cigarettes.
She stopped smoking eight years ago. I am in the shower at 6:30 a.m. and Mom is pounding on the bathroom door shouting that I have stolen all of her money.
She lives in our home and we accept nothing for her living expenses. Mom hasn’t showered in over a week because “she just got out of the shower an hour ago.” I am taking her to a doctor’s appointment and am embarrassed at how rank she smells.
After a full week of going out for lunch and/or coffee, yard sales, three doctor’s appointments and the hairdresser, I overhear her speaking to a family member on the phone relating how poorly I treat her, how I never take her anywhere and how she is very sick and I refuse to provide access to medical treatment for her.
The stress of caregiving a mother with advancing Alzheimer’s is already difficult enough; but now her friends and family are convinced that if she is not being overtly abused, then at the very least her needs are being ignored. Their concerned phone calls to me are starting to unravel my already tightly wound nerves.
In order to allay everyone’s fears and/or suspicions, I invite friends and family to visit and see for themselves. During the visit Mom is lucid, clean, well-dressed and calm; displaying none of the behavior I deal with day in and day out. In their minds, their suspicions are confirmed. My demented mother is being treated poorly by a daughter who should be taking much better care of her.
What do I do? Everyone believes Mom. Nobody believes me. On one hand I am living with an Alzheimer’s patient whose view of reality is skewed by a mind that no longer fully functions. On the other hand I’m being completely unsupported by those whose support I desperately need.
A caregiver I know packed up her mother and left her for two weeks with her aunt (her mother’s sister). She knew her mother could not keep up the façade of lucidity for two weeks. Before the first week was over, the aunt realized the situation and spoke to the rest of the family about the reality of the state of affairs.
Auntie promptly returned Mom to her daughter a week early by ringing the doorbell, handing her Mom’s suitcase (along with Mom) and driving away at great speed.
Installing cameras within the caregiving home is also an option. It is not a guarantee that friends and/or family members will watch any evidence recorded. Or if they do see events transpiring that proves your point, they won’t try to explain it away. But seeing is often believing and it’s worth a try.
Invite friends and family to an Alzheimer’s support group meeting. I heard much about erratic behaviors before my Mom began exhibiting them. When you hear caregiver after caregiver talk about deteriorating behaviors and activities, you both believe it and have some coping mechanisms to use (hopefully).
Twice I sat down and wrote very explicit letters to my mother’s friends and family members about Mom’s condition and ongoing deterioration, asking for their trust and understanding. I was blessed to receive 100% support after my letters were read.
If that doesn’t do the trick, let them know they can take over your duties and to feel free to do them better at any time. Relax. I can assure you that this scenario will never, ever come to pass.
Sadly, this is a time you will feel very alone. Surround yourself with people who love you and spend as little time as possible with those who are always conveniently busy or absent.
You are not alone in this as I have yet to meet a caregiver who hasn’t walked through this scenario with the Alzheimer’s patient they are caregivers for.
Sadly, you and your relationships will never be the same once your caregiving days are over. But the relationships that remain solid will have been tested by fire and found to be solid gold.