When Lovely Just Isn’t Enough!

Mum has had a bad night and my dad sounds very down this morning. He didn’t even try to put on a jolly front and brightly rate her behaviour and agitation out of 10. She wandered downstairs last night at around 9pm, after having got herself dressed again (one of “the lovely ladies” had been at 7.30pm and helped Mum get ready for bed and encouraged her to take her concoction of tablets).

frustrationBy “getting dressed” I mean she put some clothes on over her nightdress, inside out, upside down, back to front and then descended the stairs asking my dad for some breakfast. As it was such a beautiful day yesterday and as they are up in Scotland where the sun sets later, it was still light and bright until gone half past ten, which didn’t help my dad as he was trying to reason with her and get her to agree to go up to bed.She refused apparently and sat at the end of their bed fully clothed and has quite possibly been there all night. Dad took himself off to the spare room after a while to try and get some sleep, thank goodness. He sounds so sad and tired the last thing he needs is an all-nighter!

He is still waiting for the social worker to come back to him about getting Mum enrolled in a specialist day centre – a bit of respite for him a few hours a week – but despite completing the relevant forms with said chap weeks and weeks ago, he has heard nothing. “The chap said it might take some time,” he tried to reassure me just now, trying to defend what he sees as the good work the carers and social workers are doing.

“But why, Dad? Why does it need to take so long?” I asked him, my frustration and fury mounting.

“I don’t really know,” he replied. “They told me there was space for her, so I don’t really know.”

Ever since Mum started showing signs of this cruel bloody bastard illness, getting answers, getting help, getting her seen by the right people has been like trying to swim through treacle, trying to run through deep water, trying to get my kids to listen to me when they’re getting ready for school….it has basically been maddeningly infuriating! Dementia is one of the biggest threats to society just now, there was a BBC Panorama programme on it last week (which I still haven’t brought myself to watch all the way through) and there is a noticeable push on raising awareness and I read somewhere that the funding for research has been increased (although is still way off where it needs to be). However, it seems to me that when someone is diagnosed or is in the terrifying process of awaiting a diagnosis, there is a distinct lack of support readily available and what is available you have to fight tooth and nail for. The frightening thing is that in that awful, desperate moment, when your world is changed forever and the future you had mapped out before you is swatted away with one swipe from Mr Bastard Dementia, that moment is when you need the help and a strong, coherent, meaningful and useful support structure more than ever. Something and someone to help you navigate your way through the first terrifying few months with an clear and readily available support mechanism in place to provide ongoing help and guidance as to the next steps and what works best in what stages as the disease takes hold and the illness inevitably progresses.

I am no expert. I would never claim to know what would work best for everyone, but I have seen the frustration in my dad and witnessed poor care when mum was hospitalised last Summer. I have witnessed my brother call the team of psychiatric nurses, time and time again, leaving messages and asking for them to call back – frightened about what was happening with mum, asking for advice and intervention – with little or sometimes no response at all from them. I have seen things that I know shouldn’t happen and I know need improving and if I have seen them, then so have others going through a similar thing…….Arrgghhh! I could literally scream at the sheer waste of it all.

Dad wants to move down to Yorkshire to be near me and my brother and much closer to Emma in London. Mum has been desperate to move back down to be near her grandchildren for a few years, but now of course doesn’t really know where she is or where we are in relation to her. Still, we (the family) all believe that it is the best thing for Dad, so there is support for him and family around to help him. So I can cook him dinner a few times a week and help him with looking after Mum, let him have a rest. But, despite asking for help and advice several times the only advice he is given is to not move her as it would be too disorientating for her.

Now, I understand that. I really do. Mum may not cope very well at all with a move. It might send her backwards and be a complete and utter nightmare. But, I have to also think about my dad and the struggle he has on a daily basis on his own. Surely someone has done this before? Surely another family has been in a similar position and has set a precedent for what to do and what not to do? Surely there can be ways and means around the logistics of it all and help put in place once they are moved to try and settle my mum? Surely the answer is not just to let my dad carry on struggling on his own, 200 miles away from us? Surely a solution could be found, if only someone was willing to work with us to explore it as an idea?

The lack of a coherent, joined-up approach to my mum’s care is maddening. The ladies who come in to give her her tablets are lovely, and indeed, most of the nurses and NHS consultants Dad has seen have been lovely. But lovely doesn’t really give us answers. Lovely doesn’t provide the support we so desperately need to get advice, or answers, or anything really…….Lovely, however lovely it might be, is just not good enough.

frustration 2

One thought on “When Lovely Just Isn’t Enough!

  1. Sarah,
    You are so right about no one providing answers or advice in what to do. Even routine visits with our neurologist seem pointless to me sometimes, because he asks mom the same questions every time that she couldn’t answer then and still can’t answer now (what day it’s it, what year is it, what’s going on in the world/news)…. and sends us on about our way…. What’s the point? I’m beginning to think the lack of help and advice is due to everyone’s lack of knowledge about the disease, as it can effect each person differently. And Lord knows, there’s no cure at this time, so what is there for them to tell us? “Do the best you can in being the caregiver….”. Sure, that helps! Thanks so much for the great advice! I understand your frustrations Sarah, and so wish there was more knowledge, funding for research, and ultimately, a cure for this dreadful disease!!! Hugs to you!

    Liked by 1 person

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