Yesterday was tough, I started writing this at 2am because I couldn’t sleep, not being able to get out of my head what happened.
I saw something happen that I suspected had been coming for a while, I even preempted it, but when it happened I still wasn’t ready.
I said before I feel like I am losing my Nan to some unnamed cause but now it has got to the point it can’t be ignored.
I’ve hoped for a while we would be able to talk her into getting help to cope with the memory loss. There might be a pill or a change in diet that could help, and a trip to the GP may have solved it all, but we have gone way past that I fear now.
She refused to have a check up scan yesterday, she has never refused treatment before. She’s scared of what they will find and I don’t blame her, I’m scared for her too. Although I suspect what they want to check is something quite harmless.
I don’t blame her for not wanting the scan, I wouldn’t have wanted it but I’m angry at her for giving up.
I wish I had the words to say to help her see and understand it is all for her benefit. That the scans are necessary to make sure she remains healthy, but she just doesn’t want to understand.
The part of her brain that does reasoning has gone. She got angry and screamed at my Mum, kept bursting into what looked like fake tears, challenging us to argue with her and none of that is really her.
I believe the reason she refused the scan was, in her head, we had dropped her off to have an operation that would kill her while we went off to have fun without her. She has become jealous and suspicious of us and that was never her.
The truth is we weren’t allowed to stay with her while she had the scan, we were told to come and pick her up in 2 hours. One of us would have stayed if we could. We arrived back at the hospital just under the 2 hour mark to find she had refused the scan and left leaving us to hunt the hospital for her.
After dropping her off we drove straight to get new tyres fitted to my car and went straight back to the hospital. We sat talking about her pretty much the whole time, discussing how worried we were about her increasingly erratic behaviour, how we could help her and worrying we would be late to pick her up. But she doesn’t understand that.
Everything has become a hassle for her. Anything you suggest is wrong. We take her out to eat and she moans about everything, we get take away and she barely touches it, just plays around with it making it look like she eats it.
Her appetite has been swindling a lot over the last few months to the point where she doesn’t want to each much and rarely enjoys anything she eats. If she liked something once and you try it again she will hate it and barely eat it. At least we manage to get her to have a glass of Complan everyday.
Everything in her mind is mixed up, you can’t rely on what she says. She has become a completely different person. She is jealous, aggressive, challenging and everything is an effort with her. She is even starting to question whether she can trust us, although I’m not convinced she means it.
My sister keeps telling me it isn’t her fault, that she doesn’t know she is doing it and we need to treat her like a child and make allowances for her but it is very wearing.
I know she doesn’t know what she is saying and doesn’t mean it but ignoring her makes her say it all the more. When what she is saying is so wrong, you can’t help but want to correct it.
The problem is you can’t help someone who doesn’t want help them-self. She knows she has a problem but she won’t let anyone get her help let alone help herself.
She comments on her memory loss and how she forgets things so she is aware it happens but she won’t consider talking to her GP to get help. To her we are all trying to find ways to get rid of her.
Everything has got so messed up in her head that there is no reasoning with her. You sit and explain things to her in as simple a manner as you can, knowing she isn’t really listening, and doesn’t want to understand what you are saying and there is nothing you can do about it.
She asks the same questions on loops of about 5 to 10 minute intervals. She repeatedly asks you things you have just explained. She forgets people’s names and who they are in relation to her, which is not always an issue but she forgot my brother’s name the other day, having seen him the day before.
It’s changing my Grandad too. He’s always been so mild-mannered, the eternal joker, it’s where I get my joking side from. But now he loses his temper a lot and shouts at her. But then he is stuck with her 24 hours a day and subject to her snide remarks, controlling behaviour and now the aggression. It would get to anyone.
He can’t even sit at the other end of the room and do his puzzle without her commenting about him not wanting to spend time with her. She doesn’t even leave him in peace to have a bath, she bangs on the door to see what he is doing.
I spoke to him on the phone the other night, and I could hear her commenting in the background we had been talking a long time, so he said I better go as she thinks I’m leaving her out.
I’m a caring person, all I want to do is help her. To try to get her to see that she needs help but I can’t cope with people not listening to advice and not helping them-self.
I wish I was better with her but like I said I just don’t have the words to deal with her. I’m told I’m too tough with her but when it comes to illness you can’t muck about, you have to act and confront it to make sure it doesn’t get worse. It’s not that I’m nasty, I’m not, but I will be hard on her and tell her to attend her appointments and not let her talk us into cancelling them.
But we can’t ignore it any more, we need to try to take action. We need to try to get the consultant and GP to help her, and that means writing to them behind her back and explaining the situation.
She will hate it and probably refuse to speak to them but right now I’m more worried about what will happen if she doesn’t. I want them to prepare us for what might come in the future and give us a name for what we are struggling with so we can look into how to help her.
I’m worried about her wider safety as well as her health. Getting lost whilst out if she gets disorientated for any reason, leaving the gas on after cooking, remembering to watch where she is walking and take her medication.
Most of that responsibility falls on my Grandad and I want to be able to help him with that so he can have a little bit of his old life too. It’s why going to football is so important, it has been our thing since I was 10 years old and now I get to take him to matches.
He doesn’t seem to enjoy it as much as he used to and now I’m worried it has become too much for him. Now the weather will be getting colder and I don’t like him to sit out in the cold so I avoid winter matches so there won’t be many more matches I can take him too.
I feel guilty enough that I didn’t take action and speak to the GP before it got this far, and got her some help, but everyone else thought I was over reacting. In my heart I knew it would get worse and wanted to see if we could delay that in some way. I wish now I had ignored them and done it anyway.
Now I just want a name for it, for the thing that is taking her away from us. I want someone to say she has ….. and see what I can do to help her. I want something to be able to blame that isn’t her because I don’t want to remember this in years to come.
In the last couple of months I’ve noticed her getting worse quite quickly whereas others didn’t see it, in part I think they didn’t want to but none of us can ignore it now.
I am scared of what will happen now and what the future holds. It occurred to me that now more than ever we need to try to make memories and take photos, they might not always be good ones but they might be all we have.
I do understand where she is coming from, I’m not heartless. I completely understand that she is scared they will find something, and in truth if they did I doubt they would operate on her as she has become very frail and she would never sign for consent.
I understand that some of the tests she has routinely are uncomfortable and cause short-term discomfort. I wouldn’t want to have them either but if it means I can sleep at night, knowing I don’t need to worry, I would force myself to do it for peace of mind.
She is incredibly lucky that the hospital she is under takes such good care of her, as going by the news other people are not so lucky. Apart from one incident with a nurse who handled her position badly I can’t fault them. She has regular checks and was seen and operated on quickly once the diagnosis was made.
I wish I knew what the answer was. I wish I knew what to do and say to fix everything. I wish I had a magic pill for her to take to bring her old self back but I don’t, that person is long gone and I’m angry about it.
But tomorrow is another day and maybe I’ll get a flash of inspiration and find the words that will help, we can only hope.