This post is a little bit of a year in review but also on Carer’s Rights Day it recognises the important role that I play as carer to my 3 kids, 2 cats, parents, and of course, the subject of this blog, my hub. Those of you following this blog will know the term ‘carer’ is one I have a bit of a love-hate relationship with. I see caring as a mutual endeavour that everyone in my family participates in, as equals, not something I alone am engaged in. Anyway on to the year in review.
It’s just over a year since I left the job I loved to work independently and about the same length of time since my parents came to live with us.
My dad’s dementia has significantly worsened this year. He’s a bit like a smelly Gandalf, crossed with a healthy dose of Saruman. He has a long unkempt beard, he has lost loads of weight and has taken to wearing a long blue kaftan-like robe, or else a dinosaur onesie. When he’s good there are glimpses of his old self and that’s great, and we haven’t yet had a time when he hasn’t known who I am but on a bad day he is so angry and vitriolic that it can be quite scary.
I think he is incredibly lonely and confused a lot of the time, but being born when he was, and being the man that he is, he could never open up and say that’s what is going on. This means there is a lot of bravado, pretending that everything is fantastic and claiming really isn’t it very funny that he can’t remember what we spoke about five minutes ago, or if he’s eaten any lunch?
My dad’s life is so much smaller than it ever was. He sleeps until after 1pm most days, gets up and is served some food by my mum, watches TV until the early hours of the morning and then goes to bed, where he sleeps diagonally and restlessly and usually kicks my 81-year-old mother out on to the sofa. She’s given up complaining but the exhaustion takes its toll on her. Despite this, she is refusing to get two single beds even though I think it would do them both the world of good.
Dad’s lack of personal hygiene is really getting to me, and despite well-meaning advice from both social services and the Alzheimer’s society we’ve not managed to identify any practical things we can do at all to address the problem. He hasn’t bathed since September. When I speak to my dad in his moments of lucidity, he says he just doesn’t care and being clean is not a priority… despite the fact that he really smells. He says he can’t smell himself so if it isn’t bothering him, why bother with bathing.
I do wonder if in addition to his memory loss that he isn’t also experiencing depression? I can only imagine if my world was confused, I felt overwhelmed and scared every time I moved away from the sofa and went out the front door that it could be a significant trigger.
I constantly feel guilty about the lack of time I’ve been able to spend with both him and my mum. For the last few months I’ve been contracting away from home at least a couple nights a week and often more, which means when I get home my time is thinly stretched.
I don’t think there’s anything I can do to mitigate my guilty feelings, I think I just need to accept that I’ll never feel like I’m juggling all the balls comfortably and try and do the best I can.
This post has come out sounding a lot more ‘down’ than I’m actually feeling. At the moment things are good.
Hub’s medication, which apart from a couple blips over the summer where he ran out of prescription, is really having a good impact. He’s generally much more in control and stable, and there’s none of the robotic, lack of affect which he experienced on previous anti-depressants and anti-anxiety meds. We had a wonderful night away in a posh hotel for my birthday, and I’ve had special separate days out with each of the children recently too. One of my biggest learning points this year has been that big family gatherings where my parents are together with my kids and a host of other people are generally not worth the stress. There’s too much pressure for the kids to behave perfectly, my dad hates being out of his comfort zone and my mum is constantly telling everyone (my hub and myself included) off. So better to do the big family lunches with no pressure, not for ‘special and important’ occasions and instead to spend individual quality time with each person doing what makes them comfortable and happy, rather than trying to conform to some idealised notion of intergenerational family time. I realise me spending time with each person individually then heaps the pressure on hub who needs to look after the remaining four, while two of us go off to do something fun, but so far it’s working, and I have to say leaving him home with 2 kids instead of three is much easier from his point of view.
Christmas this year is going to be pretty small, just the 7 of us, and hub’s best friend, but actually I’m looking forward to it, and I think based on what I’ve learned this year having a small low key approach is going to be a good thing for all of us despite my underlying party planning tendencies. I might not even get out of my pajamas!!
Work has also gone from strength to strength. From a year ago when I wasn’t sure if I’d be able to support myself, far less 7 people I’ve now counted up that I’ve worked on 17 projects across the country and learned a huge amount about the sort of work that energises me and where my real strengths are. I’ve recently been appointed as a non-Exec director to a charity that totally aligns with my values, and I’ve been appointed as a fellow to fantastic university. My confidence is growing and I’m starting to think about starting up my own proper consultancy rather than just subcontracting to bigger consulting firms.
All in all, I definitely haven’t got things cracked, but I feel like so much has moved on in the last year. Work is great, family is solid, my hub (who used to be the sole focus of this blog) is starting to think too about what he might want to do outside of being the super hero parent and carer that he is, when our youngest goes to school next September. We’ve had some tough challenges this year, not least hub’s mum passing away, but it feels like we are on the right path and I can’t wait to see what 2018 has in store.
Of course, as soon as I wrote that final paragraph I felt like I was tempting fate! But increasingly I’m learning the importance of positive visualisation and gratefulness, and that it is ok to be positive, grateful and hopeful about the future… and that it isn’t arrogance or smugness.
The fact is, that I am excited about what 2018 has in store for us. I know with dad’s condition and hub’s mental health, plus added to the mix our eldest starting secondary, our baby starting school and me wanting to push forward my business will bring big challenges ahead. But, I’m looking forward and think our solid base means we should be able to survive the shocks that inevitably come our way.
Merry Christmas and have a fab break.