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This is going to be my last post for dementia awareness week. I could’ve written about the bloody awful way carers are treated by the benefits system, but I reckon most folk reading this will know my views on that already and who wants to spend a Saturday night looking up statistics? So instead I thought I’d finish up by writing about why I felt the need to write.
I didn’t write this week because I wanted to look like a sainted martyr to my Dad’s dementia. I also didnt write because I wanted sympathy. My intention really was to raise awareness of how carers feel as they plod through their daily routine. I’ve spoken to lots of carers over the years, some through work, some who are friends, some who are parents of kids with disabilities. Although the examples were specific to me, the themes of guilt, difficulties in maintaining relationships, worrying about the effect on children, not having time to look after yourself, but coping by having a sense of humour seem to be common to a lot of dementia carers that I’ve met. But although we’ve given up other parts of our life to care, we are all human, and I can still be a dick to other people if I’m having a bad day, just like anyone else.
I wanted to be honest in what I wrote, because hopefully that will help folk going through the same thing see that how they feel is normal, even the totally horrendous bits that you never tell anyone. I have moments when I really hate my Dad. Having worked in a Social Work office, I spent years trying to get him to plan for exactly the situation we are in now. But he refused- now this could have been because of early dementia symptoms, but was mainly due to him being a lazy sod who expected me to do everything for him. He relinquished responsibility for himself long before he lost capacity, & the subsequent lack of “parental support” that I’ve received from him just gives me the rage. He is my Dad & I do love him enough not to let anything bad happen to him (like being put in one of the crappier care homes) but he hasn’t financially or legally planned for any of this. The majority of my current worries are financial. A recent survey found that the average Scottish carer owes £15,000, that’s a lot of worry when you are receiving benefits on the whim of a Tory government. I’ve heard social work staff so often bitch about carers behind their backs that they are “only interested in the money”- well damn right I’m interested in the money, what help am I to my Dad if I’m bankrupt or homeless? Why should I endlessly pay Dad’s £400 fuel bills on my credit card & never see the money back? oh aye because he’d do it for me so now I should do it for him?! 😧
I get so angry with the way so called “carers support” projects work as well, allegedly I have a legal right to my own support plan- aye, a bit if paper listing how fucked things are for me, that’ll pay the BT bill or buy a new laptop. Maybe carers need that government/charity money to go directly to them as a grant or something? I’ve had the same advice from three different charities now, none of it is useful to my particular situation of needing support to appeal for NHS care funding, and they all seem to be trying to send me to each other. Two other charities have helplines based in England and so their advice is useless in Scotland & the advisor is left saying that they are looking things up on the internet, which lets be honest I can do myself because that’s how I got their helpline number. I cant believe that anyone gifting money to a dementia or cancer or carers’ charity expects affected families to struggle financially while the money goes on an “advice line” or leaflets. I’ve given a fair bit of money to charities over the years, does it really make me a cow to expect something back when I unexpectedly need it? I’ve been known to troll political party posts about carers if I see a lie, I’m also not feart to troll charity posts as well. Yup, being a carer hasn’t just made me feel guilty, sad, crazy, or lonely- it has mainly made me feel raging angry at the unfairness of it all.
I’m human, I have “oh poor me” moments the same as everyone else- I’ve just chosen to post this on Facebook instead of boring folk with it face to face. I also choose to put some information about how Dad is doing on Facebook because typing it once is less painful than typing it 5 or 6 times to different people. I’m fed up with Facebook users trolling other people who are supposed to be their friends because they openly share how they are feeling. You can always scroll past, & I’m well aware that the people who needed to read my blogs the most will have done exactly that. I like a good Facebook rant- so what? Better out than in, I’m not going to be less political just because I’m stuck at home with a sick parent & a child. It’s a wee bit of the real me that I’ve managed to retain while everything else got chipped away. It’s been over 30 years since I last cared for a parent (through cancer), & despite all the helplines and support groups, the reality hasn’t changed. Doctors still aren’t telling me anything, social work and the NHS are still playing “pass the parcel” with funding, I’m still having to do stuff for Dad that other people are being employed to do as their job. I reckon I’m allowed to feel angry. If that makes other folk uncomfortable & me a fud, fair enough.
I’m also a lazy cow. No really! A lifetime of being a carer & having to do things for myself means I’m not bad at DIY & decorating. I can moan all I want about the state my house is in because I spend a lot of time at my Dad’s house or at the hospital but at the end of the day my redecorating hasn’t been done because I’ve sat on my arse feeling angry that I’ve got to do it myself again & jealous of folk who have partners or family to do it for them, and oh look! a new series of Game of Thrones, I’ll just watch that then & eat chocolate!
But my worst “fuddery” is an inability to make/keep appointments- “I’m so sorry, I’m a pure fud, I forgot….” is such a standard text from me, I should have it stored as a template. Current circumstances have made me a ridiculously self-absorbed twat and I sometimes forget about friends problems and end up feeling like the worst pal ever because I forgot to ask how their granny is doing or when their kid’s next performance is. (Once again thank you my closest friends for being so tolerant and supportive over the last couple of months.) I do know that I’m not the first person with a parent with dementia, but I also know I’ll not be the last. There is nothing special about me or how I’ve dealt with things (seriously, never copy the way I’ve dealt with things, I’ve had some real fuck ups over the years!) But I’ve had the best advice from friends who have already been through it, I just hope that my wee Dementia Awareness Week diary is of some help to some other poor sod going through the same thing.
I’ll soon no longer be a carer. Dad will soon either be in a care home or not here at all. The worst thing about being a dementia carer is that the light at the end of your tunnel is your loved one going towards the light. The guy who came to fix Dad’s boiler (who was a bit emotional being around Dad because he had recently lost a parent to dementia) perfectly summed it up “you spend your whole life hoping that your parents will live forever, and then they get dementia, and the first few years are ok, but when it gets really bad you just want it to be over for them and you.” But how can you be a good person when you want a loved one to die? And that’s my main reason for writing the blog- I just want other carers to know that it’s alright to be angry, or frustrated, or to want to run away and just not deal with it today, or to admit that you can’t do it on your own any more, or to just want it to be all over & for your loved one to be at peace, because that’s totally normal. There are thousands of other people waking up at 3am, unable to get back to sleep because they’re thinking the same thing.
I will not be writing a blog tomorrow because I’m running away and just not dealing with it for a day. I can’t face listening to Dad repeat “What day is today? What’s happening tomorrow? Is it Sunday today? No I scored that out because Sunday was yesterday. What day is it today?” which he has done for 30mins to an hour every visit since Thursday. And you know what? Taking that break is perfectly fine!