“There is a disease that’s killing our parents and grandparents and no one seems to be doing anything about it. One day it’s going to kill us. It hasn’t become trendy to care about…Part of that is because it’s really depressing and there’s not a lot of hope associated with it.”-Seth Rogan
For the past 4 years, I’ve been “Living with Dementia”.
Dementia –A chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.
No, I do not have the disease myself, but I have – along with my Mum- cared for my Grandad for the past 4 years and boy has it been the biggest rollercoaster of a challenge of my entire life thus far.
Dementia is a common neurodegenerative disorder, second to none. Parkinson comes in a close second place.
There are 850,000 people living with dementia in the UK alone. That number is set to double by 2050 and by 2020 EVERY family in the UK will be affected by the disease in some way, yet still no one wants to talk about it.
“You don’t want to talk about the fact your parents have Alzheimer’s….The patients can’t advocate for themselves. There isn’t a Michael.J.Fox equivalent for Alzheimer’s.” -Seth Rogan
My Grandad knew something wasn’t right with himself long before we did. He kept going to the doctor with headaches and was convinced he was getting forgetful. I put it down to age and the fact he had cared for his partner for a long time before she died and it was just all part of the “grieving process”. None the less the social worker finally came to do the necessary cognitive tests and then we waited….
“It was Alzheimer’s”
My mum and I researched a day centre, figuring that at this stage he just needed to keep active. He’d spent so many years solely caring for his partner and nothing else, he needed an outlet.
Then one night we get a phone call “The telly’s not work.”. It’s 2am. We go round before work to find Grandad now watching, said TV that wasn’t working previously. We went to check things in the kitchen and were met with what I can only describe as a congealed pot of tinned tomatoes raw spaghetti and maybe even a few biscuit crumbs for good measure. Heart-breaking. It was obvious, Grandad could no longer cook for himself. We started taking meals round for him every day. Soon he’d forgotten how to make a cup of tea or turn the oven on. Yet, he could still get himself to and from the day centre safely.
I’m at work. My phone rings. It’s the police. My Grandad has been found riding his bicycle the wrong way up the M1 and could I come and collect him? When we got to the police station Grandad is there with his bike, grinning away like nothing serious had happened and he didn’t know what all the fuss was about.
Later that night whilst I watched Mum pack her overnight bag for what would be the first of 2 months “shifts” caring for Grandad between us, we discussed how he could have been injured or worst still killed! We knew then that Alzheimer’s was winning. There was no other choice. We were moving in.
So what have the past 4 years been like?
Like walking up and down a cliff blindfolded I guess. No 2 days are ever the same. In the beginning I cried. A LOT! Now I don’t so much. I realise that Grandad won’t improve and crying about it won’t change that or help me or him to enjoy the rest of his days. I’m pretty sure no grandchild envisions themselves having to assist there grandparents with washing and dressing themselves. Something that in the beginning was both degrading for him and embarrassing for the both of us. But that’s life. He soon learned I was doing it out of love and I stopped cringing at the thought of washing “private areas”. It very quickly became a mute point. A lot of people liken dementia to living with a child. Well, yes in some respects, but truthfully I disagree. It is nothing like having a child. You may dress your child and wipe their arse and someday they repay you by learning to do it for themselves. That will NEVER happen for us. I’m not dressing or cleaning up in the vain hope he will do it for himself again someday. That’s not how this works.
What I think he’d say if he could form the words to talk to me?
I am sure that if he could he’d tell me he’d wished I wasn’t caring for him. To put him in a home and enjoy my life. I guess I’ve given the best part of my 20s to being a carer.
People often ask me. If I could wave a magic wand and have a do over, would I of done things differently and said no I’m not doing it. My answer is always a resounding NO. I wouldn’t. Somewhere inside his decaying brain, his the man who made me feel at ease when I got my first bra (yes really), who I could talk to about anything and glean advice from. The man who loved me without condition and supported me through everything in life. The man who would give you the last button on his shirt if you needed it. Heck, he’d even give me the damn shirt if I was in need. He was a carer himself. He cared with unending love and without condition. So now the carer becomes the cared for.
I often wonder what my life would be like had I not delved in and said to my mum “we are in this together”. If I’d been selfish and said do it on your own I’m not helping you in any way shape or form. But those of you that know me personally know that I am not one to be selfish. I am often TOO selfless. But I believe God never gives us anything we cannot handle. He chose us to care for Grandad as he knew we were the best possible candidates for the job. Don’t get me wrong there are days when he frustrates me and I him. Days when he is not my best friend and he truly was one of mine. Like I said before nothing was taboo. We could discuss anything.
If you were to talk to any carer living with this disease they’d tell you time and time again of how we suffer with what we call “cancer envy”. A bit like Neo in the matrix – if asked between choosing the red pill and having to care for someone with cancer or the blue pill and stick with dementia, we’d all likely pick the red pill every time. Not to poo poo cancer. I’ve lost people to that disease too! But truthfully if I could go back and choose. I’d always choose red. With cancer, patients can often still care for themselves, you can still have a conversation and interact with them and there are treatments available that give the cancer patients, there carers and families HOPE. With dementia there is no hope.
I’d love to be able to just get up and go whenever I feel like. To not feel such loyalty to my mum some days and say, you know what I’m done. But I can’t ,wouldn’t, because inside of my veins runs deep a loving bond of unconditional love. I’d love to ask my Grandad what he really thinks of my partner. Does he think his nice? Did I choose well? I’d always said that as he never got to walk any of his daughter’s down the aisle I’d of loved to make him smile and do that for me someday. A task that with each passing day looks more and more unlikely. To watch him someday acknowledge and hold his first great-grandchild in his arms with love and admiration. It is at those times, when my mind starts to wander that I weep.
I write this because I feel dementia needs to have a voice and the more I talk about it and try to get people to understand the true cost this disease will have to the people suffering with it, the staff that helps carer for them, their friends and family and the wider world around us, the more chance we have of standing up and fighting it. If we turn a blind eye to this debilitating disease, then more fool us. Dementia is coming of us all in one way or another and we need to wake up and get wise to it.
I know that the awareness that the Alzheimer’s Society and Alzheimer’s Research UK is now trying to strive for will never truly serve to help my Grandad and his fellow sufferers, the carers and family that care for them on a daily basis, but I live in HOPE that one day along with cancer, Hodgkin’s lymphoma and Parkinson’s, we can fight the good fight if not for ourselves or our kids but for our grandkids and future generations to come. To build hope we have to have hope. It’s time to stop burying our heads like ostriches and start holding them high in a cry of defiance. Let’s not let Alzheimer’s win. Let’s fight. But it begins with me, it begins with us and also YOU. Don’t wait for it to affect you personally before you decide this is something worth understand and caring about. Have the heart to understand and learn now.
Want to talk to me about dementia message me via my contact me page. We all need all the support we can get and I’d really love to hear from you.