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Jennifer's story

LONDON
Read Jennifer’s story about caring for her mother, father and aunt, all who had various forms of dementia.
4 min read
In this article
Getting the support that's available Getting helpful advice All in it together

In Jennifer’s words…

I often think that caring for my parents and aunt is the best thing I’ve ever done.

 

My father had Alzheimer’s. I learned that arguing or saying ‘you’re wrong’ doesn’t do any good at all. He was frantic once because he was convinced someone was stealing from his bank account. I knew there was no problem, so I invented a phone conversation and assured him that the bank had checked and everything was fine. I told him they would keep an eye on things, and he was happy with that. You use ‘white lies’ when there is a purpose.

 

After his death, I moved in with my mother and ended up looking after her for several years, ultimately 24/7 – partly because of her poor physical health and eventually because she developed vascular dementia.

 

I kept my mother as happy as she could be after she lost my father. I kept her going. I kept her feeling secure. Much of her confusion was about where she was, and one day she said: ‘I’m so glad to have all my furniture here so it feels as if I am at home.’ Of course, she really was in her own house and I was quite shocked. But when I thought about it, at least that meant she felt safe and secure.

 

We spoke very openly about her illness, so I was able to reassure her that although I knew she was muddled, I was taking care of everything. She accepted that and thanked me for looking after her.

Getting the support that's available

We did have some help from care workers. We’d always ask which one was coming, so that I could remind my mother about them because then she would accept them. But they didn’t always tell us, so then mother would refuse to let them help and it would become the most horrendous day.

 

It was exhausting. I realise now that in the last couple of years of caring for my mother, I was stressed out. I would stay up stupidly late just to have some time to myself, and I regularly woke at 4am just from anxiety for my mother. I think stress triggered illness in me. As well as the sheer physical work of looking after someone who can no longer manage to wash and dress themselves, there is the emotionally dramatic change of role as the younger person turns into the parent, and the parent becomes the child.

 

My mother said to me more than once, ‘When I die, you’ll get your life back’, and it upset me at the time, but she was right. It was quite hard allowing myself to take my life back, clearing out the family home, making contact with friends and taking part in the community again.

 

Now my aunt has been diagnosed with Alzheimer’s. The main problem is her short-term memory. She needs support with things such as her doctor’s visits, medication and paperwork. She lives near to me so it’s very easy to pop in to check she is OK. She’s not difficult – she’s funny, jolly and great company."

I found going to a carers’ support group really helpful. Experiences could be shared, we could offer each other practical hints, and most of all, we could laugh.

I think caring can be quite addictive, because it’s so rewarding and you develop an instinctive understanding of how to help.

Getting helpful advice

I found going to a carers’ support group really helpful. Experiences could be shared, we could offer each other practical hints, and most of all, we could laugh.

 

I learned that you have to fill forms in truthfully but pessimistically: you have to show how difficult things really are and resist the temptation to be positive. I knew people who clearly needed help but didn’t get it because they didn’t do this.  

 

I also found that I could be much more assertive on my family’s behalf than I would ever be for myself. I had to battle with receptionists, health professionals, organisations of all kinds, and I managed to break down bureaucratic unhelpfulness to a degree that surprised me.

All in it together

It’s terribly sad when someone has Alzheimer’s, and if you’re a tight family unit like us, you’re not just watching, you’re part of it. Caring for my parents and now my aunt only worked because we were a close family before it all started. We all liked each other’s company and saw each other a lot. I can’t imagine giving care to someone I didn’t give a damn about. I’ve heard of people looking after spouses who they wish they hadn’t married. There’s that saying ‘cold as charity’, which is rather horrible, but there’s a lot of truth in it – caring should be warm and loving and that should come from being part of a family.”

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Last updated: 10 Oct 2018