Terminal dementia

When my mother was sinking away, loosing herself from dementia, she lost language and the simple daily actions. Yet her bread had to be prepared. Sometimes she needed to be fed. She rebelled against that. She became dehydrated because also she didn't want to drink. Thus she ended up in a hospital where they flooded her with intravenous fluids. She was more alert, more conscious of her surroundings and the people around her. When the doctor explained what was going on he used the phrase that she had "terminal dementia". Since I didn't understand what that was, I asked him. His reply was that her brain no longer could tell her she was hungry or thirsty. Thus she didn't want to eat or drink, keeping her lips tightly closed. Refusing anything to eat. I had one day a last conversation with her. She was trying to say something, made some noises that were no words. I was intend on giving her a rely, but knew not what she meant to say. Thus what did the former interpreter do: I changed the sounds she made just a little bit. We kept it up for about ten minutes. I'll never know what we said. Maybe the only thing that counted was the effort to hear her and to try and understand how she felt. Just a few minutes later she knew no longer who I was.
I have a fond memory of this bizarre conversation that brought us nearer to each other, even not knowing what we said. I guess the connection was what was important to both of us.

The movie 'Coming home'

Last night with a friend, in my festively lit town, we enjoyed a nice sashimi dinner: excellent raw fish, healthy and delicious. After green tea ice cream and white sesame ice cream, we saw in my preferred movie theater 'Cartoons' the movie Coming home. The story about love, guilt and grace is set in China. The father was a dissident and ended up for 30 years in jail. The daughter grew up under the so called "Cultural Revolution". She is a great and ambitious dancer and will do anything to secure the lead role, even betraying her father. The mother is a professor, loving and missing her husband. Finally a date is set for his return and then the movie turns into the sadness of dementia. She doesn't recognize her husband and for the betrayal by her daughter, she has chased her off. The husband, an intelligent, kind and compassionate man, comes up with ways to try and make his wife recognize him, which happens just one fleeting moment. He reads the letters he wrote but could send from jail to her... So he becomes the 'letter reader', he tunes the piano and he is the piano tuner. The daughter confesses it was her who betrayed him... He said I knew. It is all right... He knew what the cultural revolution did to people. He finally writes a letter asking the mother to let her daughter stay with her again... so that she can take care of her. The father becomes an accepted presence in whatever role it is that day. It is a beautiful and sad movie. I shed a few tears for my mother who passed away in February with dementia.

So with the beauty and understanding coming from art, I try to live my life to the fullest. I wish you all a beautiful end of year season.... May it be Hanukkah, Christmas, or a family fest... May there be peace, food, health and beauty for all.

The end of mourning

In many cultures there seems to be a period of allowed mourning after a person passes away: It is about six weeks, or some forty some odd days. So yesterday, in the tiny family unit we are, we took down all the condolences cards, put them away in a nice box and just have her smiling picture there for her husband to enjoy. That smile brings him good memories.
My memories are still with her dementia.

my mother

speaks no

more

only remains  

the seemingly  

smallness

of her smile

the leaning over on the chair

mouth wide open

for a bite

she carefully

shoves in

her teeth

just don’t  want to go in

but a person

has to eat

painful of awkward

that head

which can no

more

till suddenly

my daughter

passes her something

and she

“thank you”

says –

 I send thanks for all she gave...

My mother - Jeanine Ameloot

The night from Wednesday to Thursday, after seven years of dementia, my mother softly slipped away shortly after midnight... Thursday turned out to be a long day. Family council with the undertaker, practical decisions. My daughter and her husband were a great help. Then the pastor, a good man, came on Friday since my parents are/were catholic in order to organize the service which will be held next Wednesday. Tuesday she will be cremated.

The pastor had an interesting exercise: two pages with words in a long list. The family then had to say whether that word was a fair description of my mother. I know all family members hold a different position within the family and have different experiences and thus different views of her as husband, daughter, granddaughter and the granddaughter's partner. With each word that sounded nice her husband said yes, yes she was kind, yes she was simple, yes she helped people ...  My daughter having had the best of my mother was nuanced because she also knew, saw that it was different for me. This psychological exercise was very hard, trying to to find a balance between fair and honest. I have been touched by the kindness of my daughter and her husband and my friends, writing me, coming to the service next Wednesday, being there as support, sharing their experiences. I feel gratitude for this.
Photo by Bram Goots

Dementia

My mother has dementia. I don't know whether she suffers from it, nor if she still knows herself, or me and my daughter... The doctor spoke about "terminal dementia". I didn't understand what that meant, except that it sounded ominous. So he explained that her brain doesn't know anymore how to regulate certain functions like the regulation of fluids. So her primary caregiver, her husband who is doing a fine job of it, has to see that she drinks enough in order to avoid dehydration. She has days that she enjoys company, on others she sleeps, cannot be reached. I call it: she is not home. My mother is a smart woman, she spoke four languages, has traveled, was really a beauty and she knew how to party... The hardest thing for her husband is that he knows that at a certain point he will not be able to take care of her at home. So he makes all the preparations and follows all steps to see to it that she then will have excellent care. My daughter sees my mothers smiles and the good moments. I see her refusing to eat. She often has to be coaxed to eat... She sometimes tries to speak, yet words fail her. With a gesture, she'll abandon the effort. In the beginning of the disintegration of her mind she tried to cover up mistakes, things she had forgotten, yet on good days one could still have brief, yet meaningful conversations with her. My father a stern and strict man has developed the care giving side of himself. For that I am grateful. So her life is still in her usual surroundings and in a place she feels safe... Yet: terminal dementia is a terrible thing to hear, a terrible fate to bear for all involved so all feast are celebrated, still celebrating life, incontinent and all. Every day a small loss, a small goodbye.

birds in the head - rose vandewalle

For those among you who read also Dutch I need to write about 'vogels in het hoofd' by Rose Vandewalle. This is a moving, insightful, forgiving and understanding set of 3 short pieces, published in the series 'Art is free and cannot be paid' by De Dodopers, Eindhoven, The Netherlands. This is the Indian summer issue October 2012. The well chosen painting 'Chinese statecircus" by Eline Rausenberger expresses well the multitudes of feelings and absurdities a demented person might feel or the family member who with a watchful eye analyses, processes and creates beauty out of a dire situation.

Her texts are the result of yearlong lived experiences and and thoughtful analyses of what is happening on a deeper level. Her humanity leads her to understanding the plight of the demented mothers and fathers in the home as well as the pressure on the underpaid and overworked staff. She has helped me understand situations on an emotional and intellectual level and thus helping me deal with my mothers dementia.

De Dodopers in an initiative of Bert Jans, one of the publishers of Fingerprint, Eindhoven and aims to make the best possible small books without having to make a profit. They call it doing 'useless' things because the goal is not profit but beauty and enjoyment.