The Struggle of Being a Carer…

I didn’t realise how difficult things were going to get, just by writing a simple letter. A letter which listed all of the ailments my Nan was mentioning that we needed to address. That letter has meant that almost every week for the last couple of months I’ve needed to take her to one appointment or another, and it still isn’t over.

It has also allowed me to see more of what life is like for my Grandad. He’s been my hero since I was very small and I hate to see the effect my Nan’s increasingly difficult behaviour is having on him. Gone is the happy, smiling and joking man I knew all my life and in his place is someone who is beaten down on a daily basis to have a quiet life.

Yesterday it was xmas cards that triggered her mood. I got down the decorations and put them up so she would have somewhere to put her xmas cards. I ended up binning most of the horrible old decorations with scary faces but there was so little to put up in the end it seemed a shame.

Gone are all the decorations I remember as a child. Although a set of lights remained from my childhood, we laughed when they turned on first time. They don’t make them like they used to!

My Grandad loved decorating the house and they always had a xmas tree. It got binned some years ago for a quiet life after she refused to have one. So no xmas decorations for the man who loves xmas!

As I left I told her I would bring a tree and some decorations on Saturday to put them up as there wasn’t much to show. She moaned she didn’t want decorations so I said they weren’t for her they’re for Grandad.

But I got a call this morning to say she made him take down the lights from the window and did nothing but moan about having a tree all night. I could hear in his voice how badly it was affecting him but I saw how excited he was yesterday when I put aside the lights and tinsel for the tree too.

He doesn’t get anything he wants, doesn’t get to go anywhere or do anything for himself. She even hounds him when he goes to the bathroom or follows him when he leaves the room.

When I took him to the supermarket the other week I made sure to pick food I knew he liked that she won’t buy for him. I could see how happy he was with such a simple thing. This quiet man who gave everyone what they wanted and never asked for anything himself.

He won’t stand up to her because it means more arguing. I think he manages her moods with drink, as he told me she changes at night and becomes a different person.

I saw my cousins Mum this week and she said how thin he was looking and I hadn’t noticed. She also said he had gotten quieter and he wasn’t so cheeky as he’d always been.

I deal with my Nan by being forceful with her, I won’t let her get her own way and she doesn’t like it but it is for her own good. But I get to go home afterwards.

Putting up the xmas decorations was about doing something I knew my Grandad would appreciate. I knew if I didn’t do it he wouldn’t to keep her quiet. But they didn’t even last a day.

I told him to tell her if they weren’t put back up I wouldn’t go round there again and she would have to go to her appointments on her own. I doubt he told her.

I’m still getting him a tree but it will be a little one for his table so she can’t complain. I’ll get some decorations too. The lights I saved for the big tree will go around the window and he’ll get his little bit of xmas one way or another.

It’s bad enough that the Nan I knew all my life no longer exists let alone her behaviour changing my Grandad’s personality too. I have to fight for him because he won’t do it for himself and he deserves a little bit of happiness.

I want to try to get the memory clinic lined up so we can start to deal with her moods and memory loss or maybe just get her into a craft session for a couple of hours a week or something to give him a break.

It’s scary when I think back to the people they were. I explained to the nurse last week that the tiny frail woman she knew was actually an overweight woman for most of my life. The nurse didn’t believe me. I didn’t really grasp just how frail she is until I saw her undress for an ECG and saw she was mostly skin and bone with a hunched spine. It was a shock. Her clothes were hanging off her but she doesn’t even realise.

We took her shopping for clothes at the weekend and she was even smaller than we thought. For someone whose diet mostly consists of cakes and biscuits I’d have thought she would be a bit bigger. If I ate like she did I’d be huge.

But I don’t believe that pandering to her mood is the way forward. Sure some things you can let her have her way with, but she can’t take over everything. She turns on the fake tears with me but gives up just as quick when she realises they don’t work.

I feel like I’ve been on an emotional roller-coaster for the last few months and somewhere along the line I changed. I don’t feel the same person as I was. I find it stressful trying to stay on top of everything for my Nan and I’m trying not to let it get to me but something has changed.

I think I’ve tried to turn off some of the person I was to protect myself from what is to come. The situation isn’t going to get any better with her but no one can say how it will progress. So I need to be able to deal with whatever is coming.

It’s not that there is no one else to do it, I’m not the only one who cares for her. I think it was more of a case of me being the only one ready to face it all head on and not keep hoping that things will get better. I had a bit of time and made the decision to take control. I created all this stress in order to help her maintain her health.

It should make me feel like I’m doing something good, but it makes me feel like I made everything worse in trying to make everything better. It was the right thing to do, if I’d left things to progress as they were she wouldn’t be in a better place now.

But things haven’t improved either. If anything I noticed that her memory is getting worse, whether that’s through seeing her more regularly or a deterioration in her condition I don’t know.

For the next few months at least it will be a case of monitoring the situation from what I can tell and keeping things ticking over. But I do worry that there could be things that she forgets to say. Would she remember to tell us if things change?

If I ask her she says everything is ok and there is nothing wrong with her. One minute she complains about something and the next she says she doesn’t have a problem with it and she doesn’t know what you’re talking about. She’s an unreliable witness at best!

Since the mention of secondary cancers was brought up I’ve been turned on to what to look for but maybe I’m worrying over nothing. I couldn’t help but wonder after she collapsed the other week. Especially as we didn’t really get a handle on why, most likely she was just dehydrated.

The doctor reassured me yesterday that there are no sinister markers in the last results and we have another test next week to check again.

When I think of this time last year and how different and happy my life was I can’t help but wish things were better now. This can’t be all there is, hospital appointments and stress. There has to be something good coming too, surely?


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Angry Boater Joel Sanders

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I eat cheese, I run from zombies, and I do therapy

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