I am exhausted. Physically and mentally done. I’m hoping to get more help soon (please!) But as it stands, I’m here, on my own dealing with things as my life seems to implode.

Things were going well for the most part today. Started off a little shaky and slow, but yes, it wasn’t too bad, dementia wise. Right now is another story. We’ve been sitting in the lounge for a while, eating and watching telly. “I want to go home” is the usual cry, and it’s happening again. No matter what I try; reasoning (usually a bad idea, but sometimes she gets it), distracting, talking things through, asking questions… Nothing is working tonight. Mums also now refusing to take her nightly pills, because “there’s no point.” and refusing to go to bed.

Mum’s well hydrated and has been eating, so I know it’s not that. She is very tired however, which I think is the problem. It usually stems from a need for the loo, hunger, feeling cold, or tiredness. Any suggestions welcome at this point, as I’m like the walking dead.

Oh. And it’s my birthday tomorrow. My fiancé remembered. My family? Not so much. It absolutely broke my heart when mum said to me earlier that she realised it was my birthday, and she hadn’t got me anything. She was really upset, and I felt so bad for her. I said as much in the family group chat, and my brother called… He hadn’t realised. I don’t feel bad for me in that respect; but I do feel bad for my mum. Great that she realised it was me, and it was my birthday, but… Yeah.

💔

Doesn’t seem much, does it? Two little words. We say them every day, and think nothing of it. But sometimes they can mean the world.

A Facebook post made me sad today. My brother thanking his partner for helping look after mum for two nights.

Now, don’t get me wrong. I had a lovely two night stay in Glasgow with my (long suffering) fiancé. I am very grateful that they took over the caring role in order to allow me some, long overdue, time out. But, that was the first nights I’d spent with my fiancé since Christmas.

I am here. 24 hours a day, give or take. 7 days a week. On call. Always.

Where’s my thank you..?

Jekyl and Hyde days are ones I dread. Gone is the absent minded but relatively stable mum; and in comes the person who I’m still getting to grips with. The person who is confused but ambling along, but can turn to accusing, snappy and secretive. The person who doubts what’s said, who accuses you of being secretive yourself. Who accuses you of stealing and being untrustworthy, and thinks you’re out to ‘get them’.

It’s on days like this that I can understand how someone could easily get frustrated and angry with the situation and the patient themselves. It’s not easy. It’s bloody hard in fact, and I know that’s only going to get worse, the more she declines. Many deep breaths, taking 5, and cups of coffee required, lol. It’s 1.40pm, and I’m amazed I’m only on my second cup! (They are big cups however, lol).

Some crying too, being honest. I hate what this is doing to my loving mum and friend. I also cry for myself. Selfish? Sometimes I think so. Other times, I know I deserve better. I know I deserve help, and time out. I deserve the right to have a lie in, or go to bed at 7pm if I need to.

I deserve, and need, and want to spend quality time with my long suffering fiancé.

Selfish..?

R, x

Let me start with a wee bio. My name is Rachel, and I live in Bonnie Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 I’m in my 40’s and my mum is 87. I’m a live in carer, who also has a fiancé who I see when I can. I’ve been a carer for years however, as when I was 16/17 ish, my father had a stroke. I helped care for him and he gradually did improve, but his speech never recovered. About 9 years or so back he was diagnosed with terminal cancer, and sadly passed 8 years ago this April. So, I have been caring for many years. My mum now has dementia, so the caring continues.

It’s all very complicated when dementia is around. There is no black and white, only a rainbow spectrum for you to traverse. There are times when you get a good laugh, of course. Mum and myself have always been friends, and still are for the most part. But there are also times when I’m not a friend, or her daughter. I’m a carer who comes in to help. At times, I’m one of many carers who help. I’m just relieved she still lets me care, and still lets me be her friend and daughter. It’s a privilege to be here for her, after all her years caring for me and my siblings.

Having only been diagnosed a week ago, there is much to put in place and resources to find. A dementia care worker and all that stuff… Hopefully things will start moving soon. There’s only so much help you can get before a diagnosis.

Why the strange post title? Some may get it already, but 20th February 2020 is the date mums (vascular) dementia was finally confirmed.

R, x