It’s the little things that count, right? Of course they do.
I have two parents with vascular dementia, both very likely brought on by strokes. Both affected very differently and both with different levels of needs on any particular day. My dad, in particular is very mistrustful of people, and finds new people very difficult to live with, yet he is in the lucky position of having a lady friend who visits him often and takes him out and about.
My mother lives with us, and while she has her own wee flat in our house, with an area for her lounge, bedroom and a bathroom, she’s become introverted, not wanting to go out or meet anyone at all. That’s not ideal.
Their support networks are very different indeed.
Good Support for my dad.
In Fife, My dad needed a hospital stay as he lived alone, about a hundred miles from us. There was nobody around him to visit, make meals or help him around the house. He found himself trapped and away from his home, tucked into a mental health hospital on a geriatric ward, despite being able to get out and about if needed. He is quite feisty and vocal about what he wants, which led to regular meetings and plans for his future decided between social work and health professionals.
He tried going home with carers coming in to cook his meals and help him take his tablets. It was a disaster as by that time, he was so used to the company, that he couldn’t cope and was back in hospital within a few days. The hospital was soul destroying as his room held nothing but a bed and a wardrobe. He had nothing personal, no TV, no outings and it was difficult for his lady friend to visit. She needed to travel for four hours, to only see him for one hour on each visit.
When I decided to dig my heels in about removing him from the hospital and put him into a nursing home, social work (with support of the doctors) had funding in place and transferred him to a home he chose within a fortnight.
The funding assessment will be done over the next couple of months but hasn’t stopped his help appearing almost instantly. We’re still left with the headache of what to do with the house he part shares with a residential association but that’s neither here nor there. It will be a pain, but at least he’s somewhere with his own things around him and close to his lady friend, which is all he wants in life.
Bad Support for my mum.
My mum has a ready-made built-in carer. Living in our house, albeit independently, I am seen as a ready-made carer whether I want to be or not, so she’s had nothing in the way of outside help at all. It doesn’t help that she’s the type of woman who never complains about anything and just muddles through with us for help. Even a year post diagnosis, we have still not been assessed by social work for any care she or we as a family might be entitled to, and that’s not without pushing buttons, asking the right people and more.
Being a sandwich carer is a challenge. I have three kids, one of which regularly enters respite to give us a break, but caring for mum is ongoing too. She’s finding it more and more difficult to do daily tasks, even to the point of showering, which she can just about manage if someone is in the room, to make sure she doesn’t fall. She turns her frustration on not remembering things onto herself and wants to hide in her wee flat twenty-four seven. Her care needs are only going to increase, not decrease. She gets stressed at the thought of moving anywhere else and I just can’t put her into a home when she could easily be looked after here if someone gave me a little help long-term.
The problem is, that it’s two different budgets apparently. I don’t know how true it is, but I’m also told that they find it difficult to find carers who would come to where we live so that she could get help with showering and dressing. She also puts on a brave face and slips into past things to talk about, which makes them think she’s more able than she is. Don’t ever underestimate someone with dementia. They can fool people who are not experienced in the field into thinking they’re more capable than they are quite easily.
So, where we are we now, a year down the line, is without an assessment of need done for her, without future prospect of care unless I consider putting her into a home (my understanding which could be wrong) and we are well and truly trapped in the house as she can’t be left alone for any significant length of time with her diabetes. That means the man is taking the kids away on his own this year. I can’t go anywhere as nobody else is confident in managing her insulin and sugar levels, and the man isn’t keen on helping her wash and dress. She wouldn’t be happy with him doing it either. It’s a little thing called dignity, not having a man see her naked, even if he would simply be helping.
There are personality changes too. From a woman who for decades, has always told me off and my own kids for feeding the dog scraps at the table, it’s gone full circle. When my brother’s dog needs babysat, he sneaks under the table to her feet and she surreptitiously slides pieces of food off her plate and slips it to the dog. The dog is ecstatic of course and the kids highly bemused, though they do struggle on occasion when she’s asked them the same question ten times in half an hour.
What Do We Do?
Not much to be honest. What else can we do. The man has to give up time in his day when I visit my dad to help sort out his messes as my mum can’t be left all day alone, and we’ve found pinning notes around the house help her to not keep having to ask if it’s morning or night etc. We have a note on the front door to remind her to lock it when she opens it to have a look down the street, which she does fairly often. We were finding the door constantly unlocked, and just a wee note means she sees it every time she closes the door again, and instantly locks it. Job done.
It’s all about dignity and what we can give them. My mum is insular and happy to stay in her own space, but my dad wants the freedom to go out and about. I have to remind myself that when she acts like a child, it’s not personal, but I do miss my mum, the person I used to chat to more than anyone else in the world. That person is gone now, and the one left in her place is still funny at times, can still tell great stories of her youth and feels sad at the loss of her independence.
I wish I could get her out of the house more, but the only activity days scheme that would have worked has had to reduce its service due to funding cuts. The waiting list is so long that it’s likely she’ll have passed on before she gets to the top of the list. I’m quite sad at how little there is out there for her to do unless she’s put into a home.
The constant care part of it all makes me really rethink my own future life and care plan if I make it to be a senior citizen requiring assistance. I know I won’t live with any of my own boys, but I also wouldn’t want them to have to live with me and lose out on their own futures.
In the meantime, somehow, I have to find carers to pick up some of the work for the future. If I get it in place over the next year, hopefully it’s done and we have it when she really begins to struggle even going to the toilet, and yes, it’s going to be tough going, but I’m trying. I just don’t think my trying is good enough though, as she often seems so sad.
I don’t expect comments, so don’t feel obliged to leave one. Today is my birthday and perhaps that’s what’s making me take stock, looking at another year of caring in the home for someone who is deteriorating weekly.
Today, I feel selfish, so I don’t plan celebrating, but I do have to get control of my life and the rubbish food I punish myself with when I’m stressed. I must work to get my confidence back. It seems to have taken one gigantic knock recently and I feel so rubbish at everything I do.
I just wanted to put this out there, it’s cathartic to write our struggles, even if nobody reads them. Sorry if you’re looking for food and found one of my personal posts. I know I don’t post heartfelt posts often these days, but hey, it’s a doozy when I do.
Take care all, enjoy your Easter weekends and happy egg hunting.
If you’re affected by dementia in any way and wish to know more, visit the NHS as a starting point.
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