New week, new blog.
This week's post is from Stuart MacGregor who is living with a close family member with Alzheimers disease, and here he discusses how that affects his mental health.
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Stuart MacGregor, is 25 and living in Rugby with his family. His father is badly affected by Alzheimer's Disease and here he describes the issues and difficulties experienced by the people caring for him while they too live with their health issues.
Family living with Alzheimer's DiseaseI have decided to write about my experience living with my dad who has suffered from Alzheimers for the last 6 years, most sites online talk about the sufferer, how they feel and what happens to them but not many pages describe the situation it puts the family in or how it damages the health of those caring for them. Hopefully I can give some back story to my dad’s health and continue every now and again with updates as the disease progresses. I will try to keep it brief in the future so not to bore people but I have to explain 6 years in the first blog.
The Early SignsAbout 6 years ago, my family were doing OK, my dad, mum and brother all lived in the same house and although money issues were always an issue, we were coping. My mum and brother suffer from depression and were getting treatment for it, I had the same issue but because of the usual “you don’t understand” speech from my mother when my brother did something stupid I have never got myself sorted as I’ve never been able to have a proper conversation about it. My dad was well although he used to do strange things every now and again, we would find the bread in the fridge sometimes and a shoe in a cupboard, we saw this as just him having a moment but looking back now the signs started then. It got more serious when one night he got confused and drove the wrong way round a roundabout, luckily no one else was on the road at the time. It was then where we got him checked at the GP and after having an MRI scan we found that part of his brain was dead and that he has Alzheimers.
Effect on the FamilyAs soon as we found out we had to plan for the worst, even with current medication we knew it was a terminal illness and that his condition would get steadily worse until that point. My mum went on a few carer courses, but most of it wasn’t useful at that moment. We regularly went to see the doctor who put my dad on a trial drug and showed us how to keep him well and try to slow down the decline and keep his mind fit.
Within the year you could tell he was changing, he couldn’t keep up with conversations, being around large groups of people would confuse him meaning Christmas/Boxing Day parties were a no for him, the first year I stayed behind with him while my mother and brother went out. Within the second year he was forgetting things, where he put his glasses, where his clothes were, he would put on my shoes and shirts assuming they were his. His attitude started to go downhill too, he became more snappy and at times a horrid person. He would have tantrums just like a child, he refused to take his pills and at times wouldn’t want to eat or drink.
In the third year my brother left leaving my mother and myself to look after him. At this point, he didn’t know who I was, to him I was just a family friend and so too was my mum. My mum had to quit work to take care of him which reduced our money income, carers allowance and disability allowance were difficult to achieve because at the time we didn’t qualify, now that guidelines have changed we have a steady income in which we can care for him.
In the last few years he has physically got worse, he gets tired and will sleep the majority of the day, going to the shops can be difficult and when you make plans and he just refuses to get up the day can be ruined. In the last year he has started having incontinence issues, he will need the toilet throughout the day but because of his poor memory he will forget where the toilet is, he has frequently got lost and had to go against a wall or in the shower, and will just go while sitting down and not say anything out of shame or just not knowing what he’s done. The constant cleaning and having to follow him everywhere means my mum has to get up with him every time he needs the toilet at night to ensure he’s safe and everything stays clean.
Adaptations around the house
Since learning about the illness, we have adapted the house to make it safer for him and to make it easier to look after him. Firstly we got the bathroom re done and removed the bath and installed a shower, the kitchen has had new appliances such as a special oven which only heats the metal pans and prevents him touching it when hot. Along with many more additions to the house such as new locks on the front and back door that he can’t open, we have spent over £10,000 on it which we wouldn’t have had to spend if he were healthy.
How it has affected my lifeI’ve never been the most social person but since the illness has been worse, I’ve used drink to get away from it, I find it calming but don’t let it damage my health. It allows me to get away for a few hours and see some friends and just talk and not have to think about my day. I’ve not been able to start a relationship, I can’t bring someone home to see my parents as my dad might get frightened and I have to commit my time to look after him and be available if needed day or night, I’m also scared of talking about it to someone, having to explain that I still live with my parents and won’t be able to spend as much time as I want with someone, I think it’s better to just not be happy than turn someone away and feel worse. This need to be with someone makes my physically sick especially when I know I like someone and can’t do anything about it.
So where are we now?At the time of writing this, my mum and dad are on holiday with his sister and brother in law, they too have a family member with the same situation so my mum can talk freely to them. I’ve got the week to do as much painting around the house as possible, we couldn’t do this before as my dad would just keep touching things. My current situation is that I want to move out and gain some independence and hopefully have a better life, maybe even start a family but I can’t leave my mum to look after him, I save for a house but sometime in the future he will die and my mum; unemployed and old won’t have an income and my savings may have to go towards keeping her well in her old age.
So that’s the start of my blog, I will add to it with updates or when things change in the house, hopefully things don’t get too bad but the disease is still not totally understood.