I have just returned from a trip up to Scotland to visit my parents. I took all three of my monsters with me as Hubby was working and I also thought the children would be a good distraction for my dad. I was right – the constant noise: the elder two arguing and tussling with each other on a virtually constant basis, plus the littlest screeching at the top of her voice every time she didn’t get her own way certainly caused a distraction.
We travelled up on Saturday morning, the kids had found an old triple CD in a drawer somewhere of songs from musicals. As they are recent converts to the joys of musical theatre following our trip to see Wicked in August, we listened to the three CD’s back to back, sometimes jumping around the discs to repeat our favourite songs over and over again. It certainly made the journey go faster. The best moment was when we all sang “Defying Gravity” at the very top of our voices and beyond the top of our vocal ranges! We didn’t care that it probably sounded like some kind of torture device – we had immense fun and laughed uncontrollably for about five minutes afterwards.
The elder two were fascinated by the stories behind the songs and I was asked at the start of each song, if I’d seen the show and what was it about. I then had to pause the song to summarise the story and explain at what point in the story the song we were about to hear appeared in the show. The best reactions by far were the Lion King’s ‘Circle of Life’, which I have now had to promise to take them to and Blood Brother’s ‘Tell Me It’s Not True’, which made me cry and made Martha concerned that two men actually died on stage.
“So, are they dead now?”
“No, darling. The characters died. The men who played them didn’t die on stage, they just pretended.”
“Okay. But, are they really dead?”
“No, sweetie. It’s just pretend.”
“But, you said they died?”
It took a while, but think she got it in the end.
Mum was asleep on the sofa when we arrived and despite the whirlwind that accompanies us everywhere, she didn’t open her eyes. She did smile a little as we spoke to her, but her eyes remained tightly shut.
The kids went out with my dad for a walk with the dog. I kept trying to rouse my mother. I re-played songs from the musicals I’d been singing along to on the journey and sang loudly and proudly around the house as I whizzed the hoover round, thinking that noise and activity might help her come back to us.
I sat with her and asked her if she remembered seeing Blood Brothers in Leeds many years earlier. She nodded and smiled so, encouraged by this small reaction I then sang “Tell Me It’s Not True”to her gently, but she still didn’t open her eyes.
I fed her small bits of cheese and put a straw into her mouth so she could have a sip of water as I was worried about her dehydrating. She had a few sips and then closed her mouth tight shut.
There is no doubt my mother has declined since I saw her a few weeks ago and it is very difficult to watch her struggle with life. Nothing makes sense to her. Asking her to sit down and pointing to a chair, even trying to guide her into a seat is incredibly difficult. She sees the chair and she hears your words, but her dying brain cannot understand what you are asking her to do. Trying to get a grown adult who won’t bend to sit in a chair is almost comical. If it was anybody but my mother, that is.
Every so often she looked at me and she smiled. Or there was once, when Mabel was dancing in the living room to a song I was playing on my phone….round and round span my littlest monster and my mum laughed. Properly laughed and her eyes danced with joy and simultaneously it made my heart soar whilst at the same time broke it into little pieces.
There are other, more personal moments, new firsts – or should I say new fails – that seem to mark a new stage in our dementia journey that I am not willing to share as I would like to preserve my mum’s dignity as much as I can. I had a few earth-shattering moments, but I also had a few funny ones….
The first thing that made me properly chuckle was on Sunday. Mum hadn’t said much to me all day and as we were having a cup of tea around lunchtime or early afternoon she looked directly at me and said “You look bloody knackered!” Thanks, Mum!
I then spent many hours in the kitchen cooking a Sunday roast for us all. As Mum’s domain was always the kitchen and the cooking (she was a trained chef and had her own catering business for many years) she came in – drawn to the sound of the chopping and clattering of pans and baking trays – and asked if she could help. Well, cooking a roast and getting everything ready on time is hard enough for me; a non-skilled, pretty average cook at the best of times. Doing it whilst trying to supervise my severely dementia-stricken mother and whilst also refereeing the seemingly constant shouting and fighting of my three bundles of joy made it almost impossible.
Mum kept moving things, she washed up things I hadn’t yet used (I thought at one point she’d poured my Yorkshire Pudding batter down the drain and it nearly tipped me over the edge!), she bent down and talked to the bin as if it was a little child in hushed tones and then two minutes later put the carrot and potato peelings in it (which made me wonder what she was talking to the child about!). She washed up things I was about to use, she didn’t wash up others but just dried them with a tea towel, smearing the dirt around the items and then putting them down ready to start again, tea towel in hand. It was very hectic and stressful and I burnt the parsnips and carrots. Not just a bit, a lot. They were inedible. Black, like coal. Oh well. The ham was nice and I have left my dad with enough Yorkshire Puddings to feed the whole street should he wish to host a massive party.
We journeyed home late yesterday afternoon and my kids whipped out the triple CD again, voices ready for another sing-along on our 200 mile trip. Again, they zoomed it along, trying to find their favourite songs. It stopped on the Blood Brothers’ song and they sang along as best they could after just hearing the song a few times…
“Tell me it’s not true, say it’s just a story.
Say it’s just a dream, say it’s just a scene…..”
So heart breaking to hear your continuing story with your dear mother. My father is just entering the stage where he is finding it ever harder to make sense of the world and lately there have been terrible despair and tears. This is something I have never seen from my father, always the strong one of the family who I would go to for advice, now a frightened man, a shadow of his former self. We will get the strength from somewhere to keep smiling and trying to make their lives the best they can be.
Thank you for taking the time to comment, Nicola. I am so sorry to hear your dad is struggling. You are right though – we will get the strength somehow to keep on smiling. Best wishes to you and your family xxxx
Very touching story, I wanted to cry. I do know how tough this chapter in your life and your mom’s life is and it is a progressive disease so it will only get worse. Enjoy your time with her now. It is true that life is not always fair. Hopefully your dad will have lots of help, it is important for him to stay well. Good luck
I am glad I read your story! I am so sorry your mother is going through this, but it is good you are with her. Dementia isnt something that can go away, but it gets worse with time. As long as the person has the support of their family they can get through it much better!