Aly’s story

Aly spent over a decade caring for family members, including her mother-in-law and mum, both living with Alzheimer’s. When caring suddenly ended, she was left navigating grief, exhaustion, and identity loss. She got through with support from her friends, family and her faith.

It was around twelve years ago when my mother-in-law became poorly. She had a hip operation and then started with Alzheimer’s, so I cared for her for ten years. When my dad died, I cared for my mum. Then nanny [her mother] died in 2016 and mum was on her own. When covid hit she became very insular, she wouldn’t go out. We realised Alzheimer’s was setting in. You do think you have to do it all yourself. I was taught that if you have to hand care over, then that’s a weakness. I felt like my family were my responsibility and I should do it all.

The first time round, caring for my mother-in-law I didn’t have any support, I had to fight for everything all the time. The second time round I had to fight, but I was prepared for it. I knew how to work with the social care system and I knew who to ask. I knew who to email. I got support from Lizzie at Carers Isle of Wight who would help me speak to the council to understand what was happening. I’d learnt from caring for my mother-in-law, that you do need help and you can’t do it all on your own.

We had cameras set up to keep an eye on mum. 24/7 me and my three kids would all monitor it. It was constant, we didn’t watch telly, just the monitor. She was throwing food, she wasn’t eating, she was falling. Every time we thought she needed the toilet we had to go round, even if the carers were there because she wouldn’t let them take her to the toilet because they were men. I thought – do we leave her to wet herself? I didn’t want to degrade her like that – she was a lovely lady – she was my mum. She was a red head, strong and very pretty in her day. She paid her taxes all her life and she worked really hard. I loved her and Iwanted to give her what she wanted, not stress her out, and she wanted to stay at home, not go into a care home.

When mum was actually dying, we had to fight for additional funding – we needed two carers, four times a day, because they had to change her (she had to wear nappies). Eventually after a battle, we got the funding for the additional care we needed, but due to staffing capacity there was no one available to do it. She was at the end – and we had to cover, my husband, me, my daughter, all had to help with changing mum. Which you don’t want to do especially when you know she’s dying, she’s screaming and she doesn’t understand.

On Saturday afternoon mum died, so she and we never got the benefit of the additional funding for the care because there were no carers to cover it. Saturday night was our first free night in ten nights. Ten nights doesn’t sound a lot, but when you’re trying to work and juggle other responsibilities, it’s hard. I had to earn money, as you don’t get paid as a carer.

I don’t blame the people working in social care it’s just the system – there’s not enough finances to do what is needed to support people and it’s not their fault there are staff shortages. The actual carers were amazing especially as they had to put up with mum who had Alzheimer’s, but there’s not enough of them, and sometimes they haven’t had enough training.

People care for people because they love them, but who cares for the carers? You’re struggling and miss out on things you want to do. I lost a lot of time with my grandchildren. It was sad because I wasn’t there for them because I had to be caring for my mum. I didn’t want money for it, I loved her, but I lost so much money because of it, you don’t get paid, which is another pressure.

I had counselling whilst mum was poorly but once she died that stopped. Because I was no longer a carer. I did get offered group grief counselling via Zoom but that wasn’t for me. I have amazing friends who offered support. You’ve got to deal with all the emotion after. I didn’t have too much guilt (Lizzie from Cares IoW helped me with this). I did do everything I humanly could for my mum. You miss them and yet it’s a relief because they were such hard work and you take on so much stress. Now I’m not dealing with the stress and social services, it’s like someone let the elastic band snap – and you think what now?

When my mother-in-law died, the caring of my mum took over, but now there is nobody to care for. Don’t get me wrong, I don’t want to care for anybody, I want to be me, but I don’t know who ‘me’ is anymore. Because I’ve cared for so long. I am now lost. However, I am also finding things I like doing, I’m doing my journalling, I’m a Jehovah’s Witness, I’m loving doing our Ministry work. I struggle with sitting and resting, I’m having to learn how to sit, to do nothing. It’s a total change of life and I didn’t think it would hit me as it has. We have lots of lovely old people in our local hall that I help – I went to visit this lady the other day in a care home, but I also don’t want to get caught up in caring again.

I’m still in touch with some of the carers that looked after mum. I think that’s lovely, even though she was rude to them they could see it was the illness and not her. I don’t want my kids to have to fight like I did. You never do know do you what’s going to happen to yourself. I’m fortunate, I have a daughter and granddaughters who would look after me and be amazing support. But I don’t want to ask them to do that. I’ve said I will be happy to go into a care home if I get dementia.

I know that my mum isn’t going to remember any of the pain she suffered, and when I see her again, she will be in perfect health with her red hair and her lovely personality. She won’t remember all the nastiness and that’s what I hold on to.