I’m incredibly saddened by Gene Wilder’s death.
Not only because he was a wonderful actor, but because it really hits home how serious and cruel Alzheimer’s really is, and unfortunately how its going to affect me and my family in the future.
If you remember a few months ago I briefly touched upon my Grandad being ill (Here) In that post I’d said it wasn’t my place to discuss what was wrong with him. However since I posted that, things have improved and hopefully this post will help somebody who may be in the same position.
My granddad has Alzheimer’s. He was diagnosed properly around two years ago. It started off with him forgetting little things and kind of tripping up over his words. I used to go over and stay with him sometimes, and in the night I used to hear him having conversations with people who weren’t there. When these things got more frequent, we persuaded him to go to the doctors, and eventually he was diagnosed 2 years ago and put on medication to slow the disease down.
At first all we really noticed was moments of confusion, slight paranoia and struggling with putting sentences together. However at the start of the year he seemed to go downhill really quickly. He’d go out for walks and couldn’t find his way home, he’d zone out completely in conversations, say things that made no sense, and was increasingly paranoid about lots of things and becoming quite agitated.
So we decided to get him some drop in care. The carers would basically drop in four times a day, help with medication, have a chat make him a meal etc and he had access to a help line if he needed it. The most heart-breaking moment for me personally was when he called this helpline in a panic because his wife had been out shopping and hadn’t come home. My nana had passed away 9 years ago with cancer.
Unfortunately things were getting worse. My granddad was going to bed and leaving his doors wide open, getting lost when he went out and basically it wasn’t safe for him to be living on his own. So my Mum and Auntie had to make the decision to move him into a care home.
When he was these he suffered a huge break down within hours of being there. I think the combination of being somewhere new, with no familiar faces and being frightened led to that and he had to be placed in a specialist unit while they figured out how to treat him. I was with him at the point of that breakdown, and because in my previous job I’ve had training in how to deal with violent behaviour I stayed with him until the ambulance arrived. But to be honest no amount of training could have prepared me for seeing the man I’ve idolised for so many years in that state. He was hallucinating, paranoid, making no sense talking about bodies on the floor and bombs, begging me to let him out because he thought we were in danger. My Grandad has always been a very strong proud man, and I think the cruellest thing about Alzheimer’s is in that moment any dignity or choice he had was taken away by that fucking horrible disease.
After a tough 3 months and some medication changes he improved dramatically and was well enough to be place back into a care home. It took a lot of fighting on my Mum and Aunties part, as his social worker was more concerned about putting him in any old place then working in his best interest, but we managed to get him a place in the best residence possible. It was in the village he’d been born in, married, raised children and was close to all the places he loved visiting. He’s able to go for walks around his favourite fishing spots, go to his favourite cafe’s and come and spend the day with his family.
Since being there his quality of life and his general health is so much better. He still has his moments of confusion, but he’s got his sense of humour back, and we can sit and have a chat with him. I love visiting him and listening to all the things he’s done that day. Even if it is in his head and he hasn’t done those things (he told me the other day he’d gotten a new job as a postman) it’s nice to know that whatever he’s seeing is making him happy.
I know that eventually, he may forget us and his physical and mental health will decline. So I cherish those moments with him, and no matter what the Alzheimer’s takes away, he will always be my strong, proud, amazing Grandad.
If you know somebody with Alzheimer’s or Dementia, be patient with them. Don’t contradict them or tell them they are wrong. Listen to their thoughts and feelings. Give them choices and get them involved with things. Encourage their independence, even if it’s something as simple as making a cup of tea. Treat them with dignity and respect. If you come across someone in the community who you think is acting a bit “odd” don’t laugh at them, instead offer them a helping hand.
If you’re a carer for someone with Alzheimer’s or Dementia, don’t forget you are not alone, there are a lot of organisations out there who can offer support. The Alzheimer’s Society website offers a lot of information. If you’re struggling, it doesn’t mean you’ve failed the person or you’re not doing a good job.
I know this is a bit different from my usual post’s, but this is something I’m incredibly passionate about and I wanted to share my story. If anybody wants to chat or share their story’s please feel free to do so in the comments.