Thursday, June 21, 2012

Not Quite Out of My Mind

     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
Bike rides
The new library
Travel stories
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.”




  1. Honest, moving, and of course, beautifully written....

  2. thanks Heidi, hugs to Addie, wish I could have a dog here!

  3. Yes, beautifully written and very touching. I worked in a nursing home for awhile when I was in grad school. I loved all the men and women there. It was horrible for the families when they would come visit, to see their loved ones in such a different state. I did not know their former selves, so I just accepted them as they were. It is so much easier to handle when it is not your family... no history, memories, expectations...

  4. Thanks for your insights, really appreciate it. I think the expectations are the hardest to reconcile. It is more difficult to witness my Dad's downhill mental slide than it has been with Mom. I didn't realize I still expected anything of him, but surprises are part of learning. I just heard the experience referred to as AFGO.
    another fucking growth opportunity).
    Hope your day is a good one!

  5. I always enjoy to way you see the world through kaleidoscope glasses. This might be your most poignant story so far. Not many folks can pull off humor and horror in the same sentence. Love you sis.

  6. AFGO...I'll have to remember that! :)

  7. Boy did you ever hit the nail n the head! You don't live in Northern California do you? The worse thing is my Parents are gone and I'm left helping to take care of my Mother-in-Law who never really gave me the time of day in the past. Now I'm forced to be part-time caretaker for my Husbands' Mother. Forced as I'm a baddy if I don't. I understand and empathize, but my husband is in denial she has Dementia. God Bless and keep you and your parents.

  8. I understand what you're going through. My husband and I are taking care if his Mother. Both my parents are gone. You literally hit the nail on the head. Only I think somedays my husband does not deal in reality, and is in denial my Mother-in-Law has dementia. God Bless you.

  9. Hello Catherine, i am a friend of your sister's. I am so glad she directed me to your page. My mother was also an Alzheimer's victim, no, the whole family were victims of this horrible disease. Not only does Alzheimer's erase a patient's memory but also strips them of all dignity. You are a very loving, patient, and wonderful daughter. I was captivated by you voice and read more of your blog which I loved. You are a very talented writer and photographer. I will be a frequent visitor.

    1. If you are in Benicia I'll have my sister's gallery open today from 11:30 to 4:30 (117 East D Street) and my paintings are up this month also from the 90 paintings in 90 days series I did on Molokai last fall. Feel free to stop by if you are around, clearly you are a fellow survivor!

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  11. It is such a complicated relationship, having to give time and energy to people who cannot give back. I could not do it if I did not love my parents, but it certainly gets tested daily. I feel for you. It would take a high hourly rate to do this for someone I did not love. A Dr. can do a simple memory test to determine dementia and a letter from them might be convincing. You are definitely not bad for not wanting to give your time to someone who did not care for you, but a Saint for doing it anyway. Just to say though, I don't want to be here most of the time and Saints are probably overrated. Hope you find a solution. Coping with elderly family members over a long slow decline is nearly an untenable problem and there are no easy answers. Be a baddy if it means your sanity. What other people think doesn't count for much in the long run and resentment is just too hard to get over. I do pray, often. Thanks for yours and bless you too!

  12. My apologies for resending the same comment. I wanted to correct a spelling error. Jeez, this blog is as easy to get around as insurance forms through the hospital.

  13. Catherine although everything you are going through is absolutely overwhelming, you continue to write beautifully about a very painful topic. This says a lot about who you are as a human being. I remember those days, my father being organically brain damaged, going to neighbors to call the police on his care giver for stealing his car (not true), being hospitalized and the nurses asking me what language he spoke(he had receptive and expressive aphasia), TRYING TO GET PSYCHOLOGICAL HELP AND BEING TOLD BY A MEDICAL COURT "Organically brain damaged people can not benefit from psychotherapy" At the same time being told that my uncle (in congestive heart failure)and his wife(my aunt)who was blind could not be released from the hospital to their home and needed to be placed in a facility but they had no savings . I would not separate them nor place them inappropriately!!! And I didn't. But pleading became an art. So, even though I am not in your shoes, I have an idea of the magnitude of your difficulties. I can tell you ...I got so tired of washing urine soaked clothing I cried......I fell to sleep so exhausted, I never wanted to wake up......but I have no regrets. Even with all the sacrifices I had to make, I would do it again in a heart beat. I was not the best kid and they loved me in spite of myself. I was fortunate enough to be able to love them the same way.
    I admire you for taking care of the people who took care of you. You are a wonderful DAUGHTER!!!

  14. Barbara, Thank you so much for writing. I'm amazed that the supposedly best system the world does not actually function very well. That might be the dumbest thing I've said. Like why be amazed? You've certainly been through it and I'm glad to hear you have no regrets. So far I don't. I was a horrible teenager, so maybe it is payback and thanks for making me smile! Look forward to the day we can get together again. I've tried to write about getting off the airplane in LA from Mexico with all the baggage piling up out of control. It was weird and hilarious, but defies description. At least you were there to witness it so I'm not crazy. Here's to staying sane!