This week is Dementia Awareness Week, you can find out more about Alzheimer’s and Dementia and see how you can help here. As it is something that is close to home I wanted to share my experience, I feel ready to talk a bit about it.
My Nan was diagnosed with Alzheimer’s and Dementia at the end of February this year, but I suspect she has had it for the last 2 or 3 years without us really wanting to admit it.
That meeting where we finally got the diagnosis was very difficult. The Consultant was brilliant, he read through the 5 page assessment they had undertaken explaining each and every diagnosis but each new item was like a punch in the stomach.
I had prepared myself for being told she had Dementia, I thought we would be given tablets and some help sheets to explain to us how to manage the condition and that would be it. I managed to convince myself and my family it wasn’t Alzheimer’s, she wasn’t bad enough for that… in this case I was wrong.
I remember walking out of the office close to tears and desperate to talk to someone. I walked on ahead in a daze. She was hungry and had no idea what had just been said about her or what it actually meant, even though she was sitting there throughout.
I took her into McDonalds but couldn’t eat. I wanted to be sick. No one was picking up their phones and I was beginning to feel like I couldn’t breathe.
All I wanted to do was speak to my friend and have him tell me it was all going to be ok. I messaged him to have a good friday and didn’t think he would reply, but he did. It was almost like he knew I needed to talk but when he asked about my day I couldn’t tell him. He said he was there if I wanted to talk, but how could I talk to him? How can I share this with anyone and not sound like a pathetic loser!
The Consultant told us she had previously had a stroke, which suddenly made sense of her collapse at the end of November last year, which to my mind we never got to the bottom of. Something always niggled me about it that we might have missed.
I didn’t realise then that in the next couple of months there would be more difficult conversations with her clinicians, more decisions to be made that would be difficult to comprehend. Her cancer, her heart murmur and raised risk of stroke or her Alzheimer’s and Dementia, which one is the final chapter in her story?
For months it has felt like my life has been an endless fight to get through the medical treatments I have been told she needed. I had to write a formal complaint to get the appointment she needed at the hospital only to come away with a nod and a smile when I asked if her cancer had grown.
The cancer consultant frustrates me as he doesn’t tell you what is going on. He nods and says its part of the disease but doesn’t tell me why or whether it is something I should look out for getting worse or be aware of. I don’t really know what the current status is of her cancer only that it is worse. I should’ve asked more questions but what was the point when he said there was nothing to be done but refer to Palliative Care.
All the other consultants give me the courtesy of explaining in detail every element of what is going on, I’ve learned so much that one Doctor asked me what type of Nurse I was. My Grandad was pleased by that, he always says I know more than the Doctors and hearing one agree made him smile.
Because now it isn’t just her, he needs my help too. I think the stress of managing her reverting to toddler behaviour at times is starting to take its toll on him and he is developing health issues. So now I fight for him too.
I fight so much for them that I’m slowly feeling like I’m disappearing. I don’t even remember what I want to do with my life any more. I keep applying for jobs, anything to break the hospital cycle but nothing has worked out so far.
Last week I had to agree that my Nan was not able to take any treatment for her heart condition, thereby raising her risk of having another stroke. I felt defeated. Everything I have done in the last few months to keep her as healthy as I can, all the fights I had with her to make sure she takes her medication, all the times she screamed and swore at me and said I don’t help her – none of it meant anything because I can’t save her.
It’s out of my hand now, she’s being referred to Palliative Care which means she’s entering the last level of the game. All I can do now is maintenance and ensure she isn’t in any pain or discomfort. But who knows how long this stage will last. I don’t feel like the end is in sight just yet but the last few months have taught me I’m not in control of this game. I’ll play every hand and fight every fight I can and hope it will be enough to not feel guilty when I lose.
No one gave up more of their life than me or tried harder to win this game. Yet I’m the one that gets judged. Could I have done more? I don’t believe so. Should I have done something sooner about her Dementia? Maybe, but I think the game would still have ended the same.
It’s getting hard to remember who she was before all of this. The woman I grew up with was short and mostly overweight but now I can see her ribs she has wasted away so much. She used to be independent and do her own thing, go where she wanted to go but now she is jealous of everything and gets angry if we take my Grandad somewhere without her.
She used to love going on holiday, to the theatre, playing bingo, doing puzzles, watching films and now everything is too much hassle or takes to long. She has no concept of time, no patience or energy and everything becomes a fight.
She says no one tells her what is going on and we make up lies about her to the doctors but she barely even pays attention in the appointments. She can’t remember any of her symptoms and doesn’t pay attention when you explain things to her anyway. She doesn’t want to know what is going on.
Every appointment is the same. She remembers her full name and date of birth which always surprises me yet she doesn’t always remember my connection to her. I range from granddaughter, niece and daughter at times. She tells everyone the same thing, ‘I’m all right, no problems, I keep myself clean and poodle along doing what I have to do’. It’s the only thing that never changes, that one sentence is the same no matter what the question she is asked!
When I look at her now I no longer see the woman I grew up with, I see a stranger who I don’t know and don’t particularly like. It sounds awful but you would never choose a friend who behaves like that. If I didn’t love her I wouldn’t care but that is part of the problem. I hate that she has taken away the woman I knew and left someone who is nothing like her in her place. I hate that she has changed my Grandad with her behaviour.
I guess I hate too how the whole situation makes me feel. I’ve never felt more alone. No one seems to want to share the burden with me. I don’t feel like I can really talk to anyone about it so I just bottle it all up. Which is why I decided to write this when I heard about Dementia Awareness Week. Maybe someone out there will relate to how hard it can be to face up to losing the person you love. Maybe I really am alone in this.
I already feel a bit better by being honest with myself. I feel like I’m on a slippery slope to becoming a horrible person, when in truth I’ve had to be tough with her and switch part of myself off just to be able to deal with whats happening. I did it to try to protect myself when I realised this game was only going to end one way.
She tells everyone I don’t like her, she has for years because I’ve always been close to my Grandad. In truth there was always a distance between us, we never really understood each other but we always got along and there was always love between us. I have to be the bad guy and I accept that, she needs to blame me and react against me and that’s ok because the only way I can love her now is to not give up.
She’s long past the ability to understand the situation she is in and what it is that I do for her and I accept that. I do get thank you’s but she also screams ‘Oh just fuck off’ at me quite a lot. By far the hardest to hear is ‘you don’t help me’ it makes me want to scream when I do nothing but help. I find the easiest thing is to try not to talk to her at all, that way I don’t feel guilty and don’t get shouted at but that’s sad in itself. I just don’t know how to get through this any other way.
I think the Dementia more than anything else changed her. The cancer started the weight loss but she was more herself back then and at least tried to get on with things. The heart murmur started after the stoke so I can’t blame that really.
To be honest I think it’s the Alzheimer’s and Dementia that need to just fuck off. The rest of it I could deal with if she had a little bit of understanding to work with.