I have had this post in my draft list for quite a while and was about to delete it, then thought, no. By publishing, perhaps more discussion may develop with a subject most never want to discuss. Another reason was reading Rachel McAlpine’s post A hero of the dementia revolution – which is an excellent and thought-provoking read. Hopefully, one day, no one will have to see a loved one decline with dementia in years to come.
He’s jumping into the puddles.
It’s an odd sight. I’ve known this straight and steadfast man since birth, ambling along the road, spying on a puddle and doggedly heading straight for it. Of course, I yell watch out. He doesn’t listen, still as stubborn as always. But too late; he’s jumped in with both feet. Now he’s falling, falling through to some black hole beyond. I imagine he feels like he’s drowning. Sometimes I think I am, too, as I know what will come next. A rambling of sorts, it’s his reality, so I pretend it’s mine too. Sometimes kindness is in what we don’t say if we don’t have to.
“Come on back,” I say, reaching down to rescue him with calm words about the familiar. It doesn’t take much now, a simple re-direction that reminds me of toddler taming.
He’s 86 years old.
The first signs were his memory, then confusion; despite his best attempts to be organised, he was always a very organised person until now. Of course, he thought he had completed the half-finished jobs; this was our first real heads-up. Then the driving was a nightmare, and in the end, I refused to be in the vehicle if he was driving. The Squire took over the driving if we were all going out together. Mum was relieved, and we both became expert backseat drivers.
But who will be the first, brave person to say that word out loud to a still lucid man whose defences were already on high alert because he also suspected?
Of course, he did.
The diagnosis was a tricky beast.
Backwards and forwards to the Doctors, more so when information was given that didn’t seem correct to Dad. Then, in all his wisdom, the Doctor didn’t want to define Dad into that dementia box; it was best for the family to find a lovely retirement home. It needs to be more helpful, we felt.
Then the falls, scenes reminiscent of a bloody murder scene. That was hard to live through and very stressful for all concerned. Why did it have to be that hard?
A decision is to be made. Before we had the opportunity to do the next stage of their lives in a reasonable time, Dad was admitted to the hospital.
Not to be released home, we needed to find a carehome. We went for the openness approach and honesty I define as “blurred”. Who needs stark truth when the sharp edges of it hurt?
“Dad,” we’d reply with a calmness we didn’t always feel, “You can’t go home. It’s now too unsafe for you, and you can no longer care for your wife.”
We still haven’t used the word dementia: white lies, little lies, omission of the entirety.
Sometimes kindness is in what we don’t say if we don’t have to. This particular puddle involved lots of huffing and puffing and a level of distress bordering on existentialism. “Why am I even here?” “My life is ruined!” “I have nothing left in my life!”
Then suddenly, that puddle dried up – it isn’t one he falls into anymore.
Once we had a diagnosis, we could look back without fear and see all the small stuff we, and he, chose to ignore.
The times he got lost driving the car. When the car wasn’t to be used, a bus was the next best thing; only it became so hard to remember which one to be on to get home. Missing for hours was a regular thing. Reporting him missing would create questions that he and Mum weren’t ready for the correct answer. Eventually, he returned home. Sometimes on his return would see me firing questions that were never answered and more of an anxiety release for me than helpful for him.
The creeping difficulty he had keeping up with his self-developed complex excel sheets. He was highly talented with figures and creating programs on his computer. A local golf club many years ago used his excel spreadsheet to collect data during golf tournaments. His golf game was the last thing he reluctantly said goodbye to as he excelled at golf. It was a positive activity in his life. Tears flowed as he said goodbye.
Then there was his fixation with trying to cook something new, which never quite worked out. Grocery shopping must have been such an ordeal for him as jams, and other items were repeatedly brought and not required. He forgot to eat and always said that Mum wasn’t eating. He was an excellent carer for Mum in many ways until he couldn’t. He tried his best.
The diagnosis was a relief.
We had a reason for the odd behaviour and subtle and not-so-subtle personality changes. He has, in many ways, become happier and, most days, is easily redirected when the puddles become too deep. Then there are others when perhaps his worst nightmare becomes his reality.
“Stop”, I want to yell, “mind the puddle, Dad!”
He jumps anyway.
Life at No. 22 
Thanks for this heart-rending, moving and honest description Suzanne.
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Thanks for reading, Denzil and it was a difficult time in our lives. Hopefully modern medicine may come up with a solution or at least make the disease easier to live with.
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Indeed. It’s a terrible way to lose a loved one.
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Thanks for reading it, Denzil.
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This is very moving. My mom ended up with alcohol induced dementia; that was ugly, diagnosed through a brain scan. My precious Aunt Martha seems to have gotten a quiet kind of pneumonia leading to oxygen deprivation that lasted several months — combined with old age. It landed her in assisted living. That was heart-breaking. Part of her was always there, and though I only saw her two or three times a year, she knew me, always, and we talked for hours. I never got tired of her memories. In deep despair one afternoon she said, “Why am I still here, Martha Ann?” something she didn’t dare say to her sisters who were around much more than I. As you know, you lose them in bits and pieces just as they lose themselves. 💔
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Thanks very much, Martha, for sharing your story. There is no easy way to say goodbye though slowly seeing them deteriorate via dementia is a cruel way to end a long life. It is a random lottery to what will happen to us medically. Fingers crossed and live as healthy as we can with much fun thrown in.
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The best goal there is. 😀
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Beautifully and sensitively written. It’s such a cruel disease, but the more people talk about their experiences – in a sensitive way as you have – the better.
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Thanks very much, Jo, and I agree it is a cruel disease. Yes, to making the chatter as easy and flowing as we do when sharing that a person has a physical disability.
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What a beautifully sensitive piece about a difficult life experience. I think it must be especially difficult to acknowledge for those who seem to have the most to lose.
I think my mother gave up on most of the challenges of life far too young. She moved into a retirement home at 70 and it wasn’t long before the signs of dementia began. She’s almost 87 now. She has wonderful care, fortunately. She went through an angry phase, but then forgot all the anger that had been such a big part of her life and now she enjoys each moment. The caregivers adore her. I shake my head in wonder.
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Thanks very much, Eilene, much appreciated. Funny how life goes and hard to understand. It is pleasing that your Mum has mellowed and enjoying life as much as she can. A big bonus that the caregivers adore her and they enjoy her company. Many elderly get quite anxious when they maybe seen as difficult and fear the caregivers won’t give them the care they require. It makes it all more bearable when our parents are settled and at peace with their life.
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my mother in law is currently in that puddle, neither waving or drowning. It’s so very hard to hold the knowledge of what went before the curtains fell and she disappears, reappearing over an orange, or a cotton on the carpet, reminding us there’s some remaining bridges to the shared past. I hope for both her sake and my wife’s sake it ends soon; it’s no sort of existence.
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You’re right; it is no sort of existence and a very drawn-out grieving progress for your wife. No matter what we do to prevent it, there is “fate” with it’s weird sense of humour that says you are the one that will endure it!
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Thank you, Suzanne. I can identify with so much of this having struggled with my mother’s dementia. Beautifully written.
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Thanks very much, Anabel, for your lovely comment. You are right; it is a struggle to do the best thing for a loved one in decline, especially when they are fighting it all the time. I wish there were more appropriate facilities for people with dementia that made them feel less stifled by their environment.
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As with many things, an early diagnosis can help, but pride, self-esteem, unwillingness to accept, all play their part on this rocky road, Suzanne. I think, for many of us, it’s a worst nightmare. The loss of control a living hell. Glad that it is all, now, behind you.
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Very accurate, Jo and as we all age hoping that it bypasses us. Some types of dementia can be slowed down with drugs and other means, such as brain-stimulating exercises. As I once said to Dad, “Go and do what makes you happy, and it doesn’t matter if you remember it next week, as it’s more important that you enjoyed it at that moment.”
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I agree, darlin 🤗💕
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Thanks for sharing this Suzanne. My own father went to pieces after my mother died and wasn’t able to take care of himself so had to go into a residential home as I couldn’t take care of him either. It was hard watching him disappear. At times he didn’t know me, thinking I was his sister, and then there were times when he asked about his grandchildren to be followed by tales of a different life to the one he actually led. Who knows what was going on in his head. I just know it was heart-breaking to see the man I knew disappear.
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That must have been tough, Jude, when he didn’t recognise you, and I am not sure caring for someone with dementia is the best thing to do as they need 24hr care. Les’s parents both had forms of dementia and spent their last few years not remembering family and deteriorating so much that it was distressing to witness. Unfortunately, dementia plays out so differently for each and every person who has the disease. For the majority of Dad’s last years, he was on the cusp of reality and being a person who liked to be in control was not easy on him or anyone else. At least all are now at peace.
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Thank you for sharing this. My mother had dementia and we went through a similar process of gradually realising, then dealing with it, without her ever really saying if she was aware what was happening to her.
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Thanks, Sarah. Perhaps denial of declining health is more digestible than facing what is happening. Also, that generation never discusses health issues unless it is someone else’s.
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I think you’re right. Even my father only ever referred to it obliquely, but then he was dealing with his own health issues, Parkinsons.
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Fully understandable as my Mum has Parkinsons which is hard in itself to deal with on a day to day basis.
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🤗
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You’re up late or early depending on how you view it🤣
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Neither – we’re in Colombia where it’s 21.14 😃
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Obviously, I haven’t kept up-to-date with your wandering 😆
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This is such a profound description using a good metaphor
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Thanks very much, Derrick, and here’s hoping that the disease can be slowed down via more research.
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Thank you for sharing your father’s story, Suzanne. There are far worse things of which to be ashamed than having dementia. The shame comes in the often lack of adequate care and services for people in this part of their life. Or at least, that is the case in Australia. My friend wrote an essay on her experiences with her own parents with dementia. It was published in the latest issue of Meanjin. The emotional burden can be heavy on family and carers, and there is often little understanding from friends who have yet to go through this with their own parents.
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Thanks, Tracy, for sharing your friend’s story and the fascinating reading via the Meanjin website. The care of the elderly is always a contentious subject, and will any caregiver ever come up to the standard of some family members? I doubt it. One good thing is that the care workers got a pay increase though I wish they would employ people who had a passion for the elderly and not just want a job. It is hard to see a family member go down the dementia rabbit warren. Dad at least remembered our names. He had vascular dementia, and most of the time, he was on the cusp of reality, and dementia it was not a good space at all.
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I think I can imagine, Suzanne.
Thinking of you and all my Kiwi blogging friends who are currently going through the cyclone nightmare.
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Cheers, Tracy. Tauranga and, generally, the BOP got off very lightly. Unfortunately, many coastal areas, like Gisborne and Hawkes Bay, were dealt a massive flood. Devasting for a family member who, at the age of 80+, has lost everything though luckily managed to save herself and her cat. It really feels like the world has gone crazy with all these natural disasters like the one in Turkey/Syria, and we had a big jolt yesterday from an earthquake. As the P.M. said, they were just waiting for the locusts to arrive.
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The trauma keeps coming. Life is so precarious. I hope your aunt has found shelter, Suzanne.
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I’m so sorry you all had to go through this, Suzanne. But I’m glad you are putting this experience and real-life issue out here for us to read. And understand. Thank you!
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Thanks very much, Liesbet. Dad is now at peace. I am sure many people can relate to dealing with dementia in one form or another. I hope one day, the stigma of having it disappears.
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