There has to be a more succinct word than caregiver. It really is too much to live up to. Implied in the title is the concept that one must care AND pony up a bottomless pit of giving all the time, which is simply impossible. Genuine loving care comes and goes with the ability to endure the full range of emotions that come up while dealing with the demented. I don’t feel very caring when a used diaper is shoved at me in rage, nobody does. I prefer eldersurvivor. At least it addresses an appropriate touch of hardship. The first time I had to buy adult diapers I cried on my knees in the drug store and that was before Mom actually needed them on a daily basis. That was in case of occasional accidents. A picture of an elderly person standing in their front yard in nothing but a diaper yelling “I’m being abducted” is not on the product package, but it should be just so kids who go to buy diapers for their parents will be prepared for what is coming down the pike. Both of my parents have dementia. Dad is nearly deaf, Mom is nearly blind. Incontinence is a dinner time topic, although I don’t eat with them anymore. I leave the room when dinner is on the table. It’s easier to clean up afterwards than police spillages or hesitate with my own fork full of food to respond to the day’s scatological reports. Eating and defecating are closely linked in a disjointed mind. Gagging over cringe worthy topics are a luxury of youth or the elite or cultures that still teach table manners and there are many moments in an eldersurvivor’s day when you just have to suck it up, but mealtime is not mandatory.
People told me this would be hard. “Yes”, I said assuredly,” I know.” Turns out I lied. I did not know. You can’t truly know things until you live them. I’m 55, I live with my parents who can no longer manage their own lives and I’ll stay until we can find a solution for the dilemma they face. People with Alzheimer’s need their familiar environment for as long as possible or they become so disoriented they have no quality of life whatsoever. Babbling incoherently, drugged, strapped to a wheelchair or simply locked up in a sterile room are my parent’s options when they leave their home. Understandably it is better to prolong this fate.
I am amazed by how difficult it is and wonder why anyone would choose this line of work. I don’t know if the hardship is exacerbated because they are also my parents. I assume it is. I am not detached nor could I ever be. Roll reversal, becoming a parent for parents, is a challenge akin to a mandatory decree to switch political parties. Some ideas take hold like fertilized crab grass and are not easily extracted. Certainly my Dad does not want me to be the boss of him and he doesn’t often do what I ask, including giving up moving barrels of dirt with a double hernia.
I also need to care for myself and so far this is what helps:
Bitching to family and friends who do not judge me when I feel more like a survivor and less like a giver
The new library
12 step meetings if I made myself go but I don’t
Searching craigslist for that perfect cabin on a tropical island to hide out and write
Watching reruns of the Bachelor and Bachelorette where contestants volunteer to put themselves through outrageous, abnormal emotional situations and must behave well regardless, which is a surprisingly close parallel to looking after demented parents.
This is the picture of Mom’s newest cage, to prevent her from falling on the rocks in the yard. I couldn’t stand building it. I hate curtailing their freedom; which has become a balancing act between safety, their soul's well being and their rights. It is a daily dilemma and responsibility I did not expect. I have hidden a mountain of tools from my Dad and I feel incredibly sad about that, but an elderly person with balance issues on blood thinners should no longer have access to an axe collection. Before I added the boards to keep Mom enclosed even further I planted a flower pot garden so she might not see the fence as a cage and she can still make her way to her garden swing. The barren dirt in the yard will soon be full of chrysanthemums. I’m not much of a gardener, but have discovered that planting flowers helps tip the scales just slightly away from the overall picture of decay that very old age is.
I was in the kitchen making dinner and Mom asked if there was anything she could do for me. I said I wished there was because I often feel lost in these circumstances and could use some good motherly advice even though Mom no longer knows who I am. Her answer follows word for word and honestly, it was exactly what I needed to hear. Life is astounding.
“Sometimes we just have too many hard things at once and it feels like everything is being taken away and I know you don’t believe me but in time it will all come back and then what you’ve lost will be there for you again and the hardest thing in the world is waiting for that to happen.”