Dementia: Simply The Best!

Tina Turner’s ‘Simply The Best’ was on the radio this afternoon. Graham Norton was interviewing an actress who is currently playing Tina on the West End. I wasn’t listening too intently, I was folding endless piles of laundry. But, then that song came on and, as only music can, I was transported back to a day around 25 years ago.

London Olympia’s Christmas Horse Show, 1993 or 1994. My sister was part of the Pony Club and I, along with my little sister and Mum got on the coach at the crack of dawn with 50 or so other girls and their mums and travelled to London for a day out.

My mum didn’t get the whole horsey thing. I’d been obsessed since being a small girl. A pony was on my Santa list every year and my mum just never got it. But, once my sister got involved and there were two of us putting the pressure on, my parents eventually relented.

Mum was scared of them. She wouldn’t come into the stable and certainly wouldn’t entertain holding a lead rope or getting on board. She tolerated it and helped take us to shows and events, because we loved it so much. She even taught herself to drive the trailer when my father became ill.

And then there was London Olympia.

It was a long day and I remember a lot of the young girls were brats. Mean brats, actually, but despite their presence it was an exciting day. The best bit was when the arena went dark and John Whitaker rode out on the magnificent Milton, illuminated by a single spotlight. He gave a brief interview about how amazing Milton was and how even though the old chap was retired, he still loved being the centre of attention. The music then started up, Tina belted out her words and we all clapped and cheered as Milton cantered around the arena, throwing in an occasional buck of excitement.

It was a special moment and even my mother, who had no real idea who John Whitaker was and why we were all getting emotional about a big white horse, loved the theatre of it all.

It is one of my favourite Christmas memories.

Then just a few short years later, we found George. A handsome gentleman of a horse. Noble, kind, willing, brave….and my mother? Well….she was won over!

I moved to London some years later and left my parents to look after George as we couldn’t bear to part with him. Mum taught herself how to lunge and several times a week she’d tack him up and take him into the outdoor menage and lunge him for half an hour – keeping him fit and healthy. She’d go down to the “bottom field” – 32 acres of dark, wooded wilderness – and bring him in on dark nights and turn him out on dark, frosty mornings. She learnt how to fill hay nets, muck out and carry water buckets without getting soaked. She got his hard feed perfected and his rugs were the tidiest and cleanest they’d ever been.

George was truly pampered. And, in return he was always gentle, polite and respectful of both her and my father. He would always stand and wait to be invited into his stable. He never barged or rushed. He looked after you. Or, that’s how it felt anyway.

Six years ago, George had been on a permanent loan to a good friend and I got “the call.”

“I think it might be time,” she said. “I’d like you to make the decision.”

I told her I trusted her and that if she knew it was right, then she should get it booked in. I arranged to go over and say my goodbyes to my old pal. I felt okay. I knew this day would come and I was determined that I would be strong and there with him in his final moments. I felt like I owed him that.

I arrived at the yard and he was standing outside, munching slowly at a full hay net. It had probably been a couple of months since I’d seen him, and he was not the same horse. His ribs were showing, his eyes were sunken and he was unsteady on his feet. He looked tired. He looked like he’d given up.

And, I knew it was time.

What I didn’t know was how devastated I would feel. I expected to feel sad, but this was something I had not expected. I felt grief deep into my bones. I felt guilt for having loaned him out and putting my children first. I felt sorrow for all those eventing days long gone that we would never relive. I felt grateful that he had been mine and for teaching me so much.

I spent an hour with him. I took him for a walk up the “race” where he ate fresh grass and enjoyed me stroking his ears. I spoke to him and thanked him for everything. I told him he was simply the best.

Then I said my final goodbyes.

Then I sobbed uncontrollably for the rest of the day. The final appointment was booked for the following morning.

“You don’t want to be there,” Hubby said.

“I do!”

“Trust me,” he said. “You don’t want to see it.”

I wavered. Did I really want to go through with it? I’d been shocked by how shattered my heart felt and wasn’t sure if I could go through with it anyway. My blacksmith, a super chap who had known George for 10 or more years offered to be with him. I agreed. George knew Richard and would be calm and relaxed with him holding him in his final moments.

I got a text from him the next day, seconds after the appointment had been booked: “George is now a happy memory.”

“Was he okay?” I text back immediately. “Was it fast?”

“Eating polos. It was milliseconds.”

And, that was it. Over. A huge part of my life gone in a millisecond, eating polo mints to the end, relaxed and at home.

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I rang my mum several times both that day and the day before. I cried down the phone and heard her struggle with her emotions as she tried to comfort me. She said all the right things; about how he’d had such a wonderful life and we should be so happy he was ours. She agreed that he was the best horse we could ever have hoped for and she cried.

Hubby tolerated my grief for several months. I printed off every picture I could find of my old boy and spent a fortune on frames and had them dotted around our house. It was a painful loss and still brings me to tears as I write this.

I have been to see my mother a few times over the past few weeks and each time I am always shocked at her appearance. Perhaps it’s a self-preservation thing, but I try to keep the old her in my head, the real Mum. I try not to let this new version of her dominate my thoughts. It works, but then it is always feels like a physical punch in the chest when you walk into the care home and see the reality.

It’s a little like walking into that yard and seeing my grand, handsome old boy reduced to skin and bones. Despite thinking I am ready, each time it takes my breath away. Each time, it almost brings me to my knees. Each time, I want to turn and run and pretend it’s not happening.

But, it is. And, I can’t run.

She is tiny now, my hand can almost fit all the way around her thigh. Her right hand has fused into an awkward position and is twisted in towards her wrist. She cannot walk and is instead transported from her room to the dining room in a wheelchair. If she is not supported in her wheelchair, she is at a risk of falling out, or slumping over. Her eyes are sunken and unseeing. Or they are unseeing of any reality; they instead see things and people that are not there. The kids were with me on one of my visits, and we all tried so hard to connect with her as she whispered and mumbled incoherently at a vision only she could see at the end of her bed.

My mum has no quality of life. She sleeps for most of the day and needs to be spoon fed to get any nutrients inside her. She gets no enjoyment out of her days and is just wasting away, while we watch and wait.

Mum and Dad

Something needs to change. I don’t know what the answer is, but it should most certainly NOT be a slow, agonising, wasting away. That cannot possibly be the best solution, can it?

Today, Tina Turner sang about someone being “simply the best!” and it brought back lovely memories of a wonderful day. I remember being in awe of John Whitaker and Milton all those years ago. I remember feeling emotional – the music and the lights, the beautiful horse bucking and leaping around the arena brought tears to my eyes. I remember thinking he was the best.

I know now, of course that he wasn’t.

We all have our own best, don’t we? George was the best horse for us. He taught us so much and we were a fantastic partnership.

My mother wasn’t perfect. She taught us, loved us, guided us, supported us and was immensely proud of us. She wasn’t perfect, and she didn’t need to be. Because to us, she was perfection – flaws, insecurities ‘n’ all. To us, she was, quite simply, the best we could have ever hoped for.

I’m just sorry we cannot do better for her now. I cannot help but feel George, my gorgeous old boy got a better deal than my beautiful mother.

At the moment, there is no alternative for my mum. We are doing the best for her in the circumstances.

Our best, though, just doesn’t feel good enough.

I’m sorry, Mum. I miss you x

 

10 thoughts on “Dementia: Simply The Best!

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  1. I am in a similar position with my Mum. She is unable to do anything for herself, doesn’t recognise me and spends her time staring into space or asleep. The residential home have a duty of care which they fulfill magnificently but it is no way for her life to come to an end. Something must change. I send you my love and support Sarah xx

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    1. Oh Alison, it’s dreadful isn’t it? We regularly lament how my mother would be horrified at where she is and how her life has ended up. She would always joke that if she ever got like her own mother (who had Alzheimer’s but was well in her 80’s) then to shoot her! Something does have to change. I believe we will look back in 100 years or so and be shocked at how we cared for our terminally ill and people like your mum and mine, who are simply wasting away. Thank you for your comment and for reading. Sending love, support and strength back to you xxx

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  2. What a poignant and powerful way to talk about this important issue. Those of us who have made the agonizing yet compassionate choice of putting down a suffering animal and those who have witnessed the terrible quality of life our loved ones experience in nursing homes know that things must change for the latter. Of course there are many moral and ethical issues to consider, but watching my father waste away in a memory care center for a year was like an extended death. For many families, that agony extends for years. My heart goes out to you and everyone in a similar situation.

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    1. Thank you so much for your words, Joy. I truly believe things must change and agree there are so many ethical and moral issues that no one in authority seems to have the courage or the will to start addressing. My mum would be devastated if she knew where she was and how she was living – though, of course, it is not living,it is existing at its basest level.
      It is a waiting game for all involved and an extended grief for those trying to cope.
      Your thoughts and support mean a lot, thank you xxx

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  3. HI Sarah, your post has moved me on so many levels. My father, who had dementia, died on 12 October and since then his name – George – has popped up everywhere. On TV, in paperwork at work and now in the shape of your beautiful horse. I smiled at that…and then cried as I read on, as your thoughts so much echo mine. I am so sad that Dad is gone and yet so relieved that he still had some quality of life up to the end – he recognised us all and enjoyed our visits, he loved to eat chocolates, ice cream and puddings, and still had his dry sense of humour amid all the confusion in his mind. I would have hated to see him bedridden and uncommunicative and am so sorry that you are in this position with your mum. We absolutely have to do something about this as a society. I suspect economics will drive this in the next few decades – there will simply be too many of us who are frail of mind and body for there to be adequate infrastructure to cope. I can only hope that Mum – who also has dementia – goes as peacefully and quickly as Dad did and before her quality of life is zero. Love and strength to you all. Helen xx

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  4. Helen, oh I’m so sorry to hear of your dad’s passing. Despite the relief I know you must feel, I know you will also be feeling incredibly sad and mourning his loss terribly.
    There will be a huge sense of relief when my mum eventually passes – it is agony watching her fade away, knowing we can do nothing to improve her quality of life or her enjoyment of life. We simply have to try and normalise it, so that we cope. It is so wrong and I think you’re right, eventually the economics will drive a change. There’s a part of me that feels so strongly I want to start petitioning the government to consider change, but I’m not sure at the moment I have the energy to see it through. Perhaps when I do, I will give you a shout to support me!
    Sending lots of love to you and your family at this tough time.
    Sarah xxx

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  5. Hi Sarah, thanks for your kind words. Yes, I am feeling very mixed emotions at the moment. I still can’t quite believe I will never see Dad again. It doesn’t help that he died while I was in Bulgaria – my first trip abroad in 8 years!!! Although visits to him at the care home with Mum were hard, I do miss him – and those visits – enormously. As I left him that last time before I went on holiday, I did think ‘I wonder if this will be the last time I ever see him?’…then chastised myself for being melodramatic. At least having that thought means I have a picture of him in that moment imprinted on my mind.

    I would be delighted to be involved in campaigning on this front, so, yes, please do give me a shout if you pursue this. Are you able to pick up my email address from your end?

    Thanks again.

    Helen xx

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  6. You took the words out of my mouth (or off my keyboard? I’m not sure how you say that accurately). “Watching and waiting.” How frustrating that this is all we can do. Much love from the U.S. ❤

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