I care for my mum and dad. Both are 83. Dad has vascular dementia and mum has COPD, is quite deaf and doesn’t see that well either.
I have my own health issues. I’ve had a broken spine and have fibromyalgia. I worked for four years as a paid carer in a care home, so I’ve experienced care from all sides – I cared for people professionally, I’ve been the recipient of care when I had to be looked after myself, and now I’m giving care to my parents.
I also regularly look after my two grandchildren for my daughter, who works. Sometimes she’s needed to go into work at 5am at short notice and I’ve had to go round and help get the grandchildren ready for school. Then I go round to help my parents.
We don’t have paid carers coming in anymore. At points we have had them, and they have often caused more hassle and upset than it’s worth.
When carers were coming in to help my dad they would let themselves in at whatever time they liked. My mum would be in the kitchen and suddenly there’s a large male, complete stranger standing behind her. They didn’t ring on the doorbell or call my mum’s name first.
It really upset her and as dad was getting better, she was getting worse. If they were meant to come at 8am they’d turn up at 11am and I wouldn’t know when they were coming to coordinate when I came. One or two were brilliant, but half the time they did nothing.
There was one time when I needed a break and booked a weekend camping. I was all set up with the tent pitched and I got a call from mum who was crying down the phone saying the carers hadn’t been.
Apparently they’d spoken to my dad privately in the garden the day before – bearing in mind he has vascular dementia and his favourite word is no – and he’d told them he didn’t need them. So they cancelled the visits without telling me or my mum. Then he’d fallen getting himself up in the morning.
I know my dad. Other people and professionals don’t know him, yet they try to tell me what to do and criticise what I am doing. For example, I can’t give dad any money. He’s an alcoholic and if he gets hold of any money, he’ll spend it on alcohol, and I’ll need to deal with the consequences. So he’ll go out on the bus for a day trip with no more than £2.
Mum asks me for £100 so she can go shopping for things for the grandchildren – I can’t give it to her because if she has anything left in her purse at the end of the day he’ll find it and spend it on alcohol.
People say it’s unfair of me and I should give him some money so he can enjoy himself. They have no idea what it’s like to be in my shoes. I’m not just fighting old age and a little bit of memory loss but dealing with the alcoholism too.
Social services and other professionals don’t see the whole picture. I haven’t had a life for years now. I don’t even have friends anymore. I never know when I’ll get a phone call and have to leave, and it’s alright to do that once or twice, but then people stop asking you to come out. I can’t ever have a drink because I don’t know when I’ll have to drive over to them.
Everyone has an opinion, but they don’t know the full circumstances. Sometimes I think that some people feel guilty when they see how much I do for my parents, because they didn’t do the same or don’t intend to in the future. So they prefer not remain friends.
If you ask dad if he wants something to eat he’ll always say no, but you put the food in front of him and he’ll eat a bit. He’s maintained his weight for years so I must be doing something right.
He hides letters – from people like the dietician. I have no idea what’s been written or arranged. He’s setting up lasting power of attorney but for my brother, not for me, and my brother is in another country. Nothing is easy.
The GP surgery is amazing. My dad’s GP knows how to speak to dad – explaining things clearly and treating him with respect. I walk in and the receptionists help me straight away – they know mum or dad are outside and could walk away any minute. I don’t have to go through everything every time or just stand there – they know the situation and they give me what I need.
I am also blessed to have a weekly carers group at a garden centre that I go to. The people there make me smile and keep me going. I attend other carer events, such as little outings if and when I can get to them, which are really good. And I’ve got my mum and dad obviously.
Despite everything, we’re happy and lucky and managing and coping. I feel very grateful to have both of my parents. My mum loves to go out – she’s dressed and ready to go out every morning. We go for breakfast and it’s lovely living in Weymouth. We did really well during the Covid lockdowns just in our own little bubble, us against the world.
But I think, what about those who can’t or don’t cope? If I wasn’t here, I don’t think my parents would still be alive. Every now and then I just walk away for a bit because I can’t cope. No one asks if I’m okay, they just ask where I was.
What about me being well and what about me doing something for myself? I’ve got a dislocated knee at the moment and am waiting for an operation, but I don’t know who will look after my parents while I’m recovering from that. No one ever says to me congratulations or well done.
