The journey to what?

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For the last few years there had been an anxiety lingering in my head that was just an occasional voice at first, but over time has turned up its volume to the point where I think I need to do something about it. Either confronts it, and turn it out, or learn more about it and welcome it inside. I am talking about dementia, Alzheimer’s disease, whatever you want to tag it, but it all means the same thing – the loss of self at some stage in the ageing process. Sometimes, cruelly even before the ageing process.

 

I was introduced to dementia through my father. It was his constant companion for about the last five years of his life. It started with a phone call to my mother who was staying with me for a few days. A normal day until Dad phoned and said that he had suffered “a funny turn” and he wanted Mum to come home. My Dad rarely acknowledged any illness and so for him to call and summon help we knew it was serious. It was serious; it was the day all our lives changed forever.

 

From that day on it was doctor’s visits and having my heart stop in my chest every time the phone rang at unexpected times. I started answering calls with the greeting “What’s wrong?” Everything was wrong.

 

Dad had a long series of TIAs and he was well aware of what was happening to him. He would tap his head and say “There’s something wrong with my head”. There were good days and bad days, until there were never any good days. In the end, he could no longer be cared for by family; we had to search for a care facility for him.

 

There was a sitcom in Australia a few years back called, “Mother and Son” where supposedly the mother suffered from dementia. Its entire premise was that mother’s odd ways and unpredictable behavior created humorous mayhem. It also mythologized the idea that dementia was nothing more than putting the teapot in the freezer, or forgetting where you parked the car. If only.

 

However, all through Dad’s journey, we comforted ourselves by the “fact” that the doctors said that his early habit of smoking, and his life long battle with alcohol brought about his heart issues which caused the TIAs and in turn the dementia, even though in his last decade he had lived a healthier life style that ever before in his entire life. The man even took up jogging, and continued jogging until he could no longer remember how to find his way home (thank heavens they lived in a very small country town!)

 

Dad had always been a quick tempered man. He was prone to outbursts of temper. Not domestic violence, but verbal anger. However, in his earlier days, when he frequented hotels for drinking companions he apparently was known for laying on a punch or two if he felt the need arise.

 

As the Dad I knew and loved disappeared another man took his place; a man who was unpredictable, often angry and more than a little aggressive. One day I went through the kitchen removing large knives, no longer confident of my mother’s safety. This was not my Dad, and yet it was as if some elements of his personality became magnified; taking control of what consciousness he still possessed.

 

Dad died at the age of 76, in a mental institution in 2000; a mental institution because no lock down facility was available for him in our region. The “old people’s homes” only want you if you still quietly in a chair all day.

 

After, Dad’s death, the fear of dementia and the possibility that it might choose me, or one of my siblings, was there, hovering in the back of my thoughts. Still, we consoled ourselves, the doctors said it was his smoking and drinking… and I did neither. Well, one glass now and again. I had seen too much of alcohol to ever fully embrace it. So no real need to fear dementia.

 

Then there was Mum. Every year on her birthday, I would ask her how it felt to be 80, 81, 82… and she would answer that she never felt any different than when she was 21. She didn’t seem any different. Well, maybe she forgot names, and got facts a little confused, but heavens she was in her eighties, a little forgetfulness was to be expected.

 

There were a couple of episodes where she called relatives with urgent messages for my sister, such as “the garage called and your car is ready for pick up” when my sister did not have her car in for a service. One time she convinced herself that she had given all her bank account details to the check out girl at the supermarket and made a relative take her to the bank to change things. They were isolated though and well, she was in her eighties.

 

Then came the day my sister found her lying on the floor and the world changed its axis again. She couldn’t understand why she was in the hospital as there was nothing wrong with her, and she had never collapsed onto the floor we were making that up.

 

Two years on Mum is in a care facility, a compliant little old lady who sits in her chair, as she has begun to forget how to walk. She can’t remember that Dad has died, and often asks where her own parents are. I think she knows me when I visit, but she can’t remember that I am now a grandmother. This year on her birthday, I asked her how it felt to be 87 and she looked at me and said “Am I?” We can no longer have a complete conversation as her thoughts wander mid sentence.

 

Mum was always an anxious, fearful person. Now she worries that people will steal her few worthless belongings that she has. Whenever someone gives her something she wants us to take it home so that it doesn’t get broken or stolen. She is always worrying about “the children”. “Where are the children?” Everything annoys her.

 

So, roll of the dice and two parents with dementia/alzeiheimers. Lucky me. Two different types of dementia too. So, I can’t pretend that it was just Dad’s life style. The voice now taunted “What might be in your genes?” What might be, indeed?

The other element that disturbs me is that in both my parents, it was the negative elements of their personalities that seemed to emerge as they, the whole they, disappeared. Was this coincidental, or was that what happened; the worst in us, the bits we could control or hide when in full possession of our faculties, emerges when we no longer have any defenses?

 

If so, what am I to become? It is painful enough having the person you love disappear, but to be left with only the worst parts of that person is like hammering a nail into your heart as well. This is not something I want my children to have to experience in my later years.

 

Is this inevitable, can it be avoided? Can a mindset be cultivated that might avoid such an ending? I know the older one becomes the more likelihood there is of dementia developing, but does the world view, personality type or life experiences have some impact upon how it is experienced?

 

I think this is the journey I need to take; a journey to see if I can somehow limit or offset the impacts of an ageing mind. Would a serene, mindful existence have staved off my Mum’s dementia, and the fears she now experiences? Lifestyle, diet, habits of the mind – anything?

 

I think the voice in my head is seeking some answers.

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15 thoughts on “The journey to what?

  1. If you find the answers, please share them. Alzheimer’s, Dementia are the things I fear the most about aging. During husband’s last couple of years, the worst of his personality traits showed up the most frequently, but whether than was dementia mixed with the cancer or the cancerous brain tumor coming back, I do not know.

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  2. My grandmother, who died right around when I was born had dementia. She had four children. One is in her 80’s and doing great. One died of complications unrelated to dementia, but may or may not have had it. The other two did have their mother’s dementia and died relatively young. One was my mother. The whole family participates in a study for dementia. The doctor in charge of the study was featured in a Radio Lab episode, about Ravel’s “Bolero” and a painter who was obsessed with painting ‘Bolero”. That painting is in his office where I sat a few years ago. “You either have the gene or you don’t . If you have it, you will get this dementia. If you don’t. You won’t.” My oldest brothers are already at the age where my mother started showing signs. My sister is about there. I’ve still got a few years. But every malaprop, every time the keys are misplaced, every little “stupid” moment… is it a sign? The doctor’s said they were right on the verge of being able to know if we had the gene or not with a simple blood test. They recommend not knowing. I think that ‘s best. I don’t want to know. I try to live balancing the possibility of either. I think of the odds- two of four for sure in my mothers family. How many of the five of her children?

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    • My Mum is the second eldest of nine children, so far she is the only one with dementia (one predeceased a couple of years ago, but no dementia). Her mother developed it but only in her nineties. My Dad’s family seemed to die of heart related issues but I have no knowledge of dementia as far as I aware.

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  3. I’m nudging 75 and my wife is 72. None of our parents suffered dementia, but we both are concerned that we may suffer from it in future. We have read that turmeric helps ward off the onset, and there are other brain exercises that may help. My own opinion is that keeping the brain active by practicing a healthy curiosity about the world we live in may help.

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  4. I read your post with great interest and lots of compassion, FD. My 88-year-old mom was diagnosed with dementia late last year after being hospitalised for pneumonia, and having a couple of falls just before, at my sister’s house, and another whilst in ICU. When I got back to South Africa in February, she was not the same person who had waved goodbye to me the previous August. My sister has found a very good care home, which specialises in caring for Dementia and Alzheimers patients. The doctor has finally found out which medication will keep her from being paranoid and depressed. It’s really heartbreaking to see how she now just shuffles along with her walker. I also worry that maybe the same could happen to me, although i lead a very active life and keep my brain working as much as possible. Who can tell what may happen in 25 years’ time though?

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  5. I think most of us have had a close relative with dementia. My maternal grandmother who is pushing 87 has bouts of it and it breaks my heart.
    Your research will help all of us. Thank you for posting them.

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  6. I agree with those above who think it may well come to some of us regardless of what we do and also those who feel an active mind and hands may stave off the progress of this thing.
    It may be genetic though.
    Personally I saw my Grandma phase in and out of different parts of her life forgetting who her daughter was but knowing who I was.
    Mum is now in her 70’s and showing small signs of this.
    I’m only 50 but am forgetful. Very forgetful.
    So I’m eager to read whatever you find out.

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