Dementia Support Line
Real stories
Brenda and Jo's story: 'What I miss most are the memories'
Jo and Brenda have been a couple for over thirty years, living together in West London. Two years ago, Brenda was diagnosed with dementia but Jo spotted signs well before when Brenda wasn’t her usual self. Here, Jo shares their experiences.
I first met Brenda after she’d put an advert in Time Out magazine in February 1989. We met at Crispin’s in Ealing Broadway. Brenda had been a bit put off as I’d had a perm that was growing out!
I had described myself as late 40s, but I was actually only 10 days off my 50th birthday! Brenda always joked about that. She had a great sense of humour. She still does, on her good days.
We hit it off straight away, and about a year later she moved in with me. Four years later, we bought the home together that we still live in today.
Being out in the gay community
I was always sociable but enjoyed my own company. Brenda was the quiet one. We enjoyed holidays abroad, but now I feel we could have had a lot more going on for us, especially in the gay community. We had some really nice friends.
Brenda and I used to go to Gay Pride marches. I’ve been a few times. Generally, though, you had to be a lot more reserved in those days, compared to now.
I can remember receiving a copy of the Gay news every fortnight through the post. We had it on subscription, but it was sent in plain, brown paper wrapping.
You had to keep a low profile if you were different. You can’t be different, otherwise you get pigeon-holed.
It was very different back in the day. I mean… I never wore trousers. I had a little acorn-shaped hat. Everyone looked a great deal smarter than they do today!
The mug is handmade and was painted by a friend from a feminist group. I enjoy art - this is a painting I did myself.
Spotting signs that something was wrong
I spent my career working in libraries. I love books. I took early retirement in my 50s which gave Brenda and I much more time to enjoy life. Brenda had worked at the BBC and spent some time in education too. We were definitely enjoying our time together.
The first signs of illness were there sometime before it was diagnosed. I could see she wasn’t quite her old self.
She wasn’t able to do things we had done all our lives, like putting on the washing machine, and knowing how it works. Simple things like that.
Now I’m doing Brenda’s meals and even though they’re quite simple, she doesn’t seem able to deal with it. She can still make a good boiled egg, but that’s about it.
I used to bake cakes, but with everything going on, I just buy them now. She’s still very good at ironing. She takes more care than I do, I have to admit!
Brenda dyed my hair the other week, but that might be the last time.
Brenda and our beloved cat, Cleo.
Missing shared memories
What I miss most are the memories. All the things we used to do together – she can’t remember now.
When we met, Brenda’s mum was in the early stages of dementia. She didn’t know Brenda and I were in a relationship.
In those days, we used to hire a car and go down to the care home in Broadstairs to visit Brenda’s mum. The next day we would do something for ourselves - we’d have a day out. These were the days when Brenda drove.
Benefitting from Alzheimer's Society support
The most positive thing about dementia, for me, is that I’ve met so many nice, helpful and supportive people.
Rebecca, our Dementia Support Worker at Alzheimer’s Society, came round recently. She stayed for over an hour, and that was lovely.
My local church has been good. Brenda doesn’t go but I’ve been going for some years now. That helps. Talking to people. Cheers me up.
We’ve lost so much, in a way. It wasn’t supposed to be like this, but anyone could say the same thing, couldn’t they?
Supporting an LGBTQ+ person with dementia
We have advice and practical tips for supporting an LGBTQ+ person living with dementia. This is available to download as a 30-page factsheet, or you can request a hard copy to be sent through the post.
acomfort
saysI'm new to realizing that I have lost some memory.
I've found that I can not carry on a conversation, partly because I loose words.
I've found that no one trusts my ideas anymore . . . very understandable.
I frequently say something wrong which is very embarrassing.
Many things that I say are wrong but very unimportant so there would be no harm done if I was not corrected.
If I say something like it rained yesterday and it was 2 days ago, there would be no harm done if I'm not corrected then I would not have to go through being embarrassed . . . That hurts when I am wrong so often.
Anonymous
saysHello and thanks for getting in touch.
If you are based in the UK, we recommend speaking with one of our dementia advisers to discuss your situation. They can provide you with advice and support. Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/dementia-connect-support-line)
If you're based in the US, please contact the Alzheimer's Association helpline: https://alz.org/help-support/resources/helpline
Or if you're based in Canada, please contact the Alzheimer's Society of Canada helpline: https://alzheimer.ca/en/Home/ContactUs
In the meantime, we have information on our website that you may find useful around coping with memory loss: https://www.alzheimers.org.uk/get-support/staying-independent/coping-wi…
And also The memory handbook: https://www.alzheimers.org.uk/get-support/publications-and-factsheets/m…
We hope this is helpful.
Alzheimer's Society blog team
Joyce Lindsay
saysThank you Jo I read your story and I feel for you both. I am going through the same with my husband.He will not accept that anything is wrong even though he has been told. It’s so hard to take the journey through with a loved one as you know I’m sure some days are better than others. I just feel we have been cheated of our golden years.When I am down I pull myself up thinking of all the times we have shared special occasions, holidays and now we take every day as it comes and feel grateful for our time together.
Jo Wood
saysIt is so good Brenda has you to love and care for her... I cared for my Mum for 24\7 without a break or time away for 29 months till she passed away in April. It is difficult and I am sure at times you may feel frustrated with Brenda's condition but it is as in sure your aware it's difficult for the sufferer too is frustrating to suddenly be unable to function as you did before.....
But give time for yourself too Brenda would want that, as there will be times due to friend's fear of being alone you may not be able to have you time...stay strong, you are not alone...happy to listen if you need an ear... Regards Jo
Janet Fishwick
saysMy 94 year old mother has stage 5 Alzheimers and has lived alone for the last 32 years since dad died. Mother has carers, a care package and remembers nothing of their twice daily visits, 6 days a week. Mother is very deaf and refuses to wear hearing aids. She is incontinent and in full denial of this and many other issues. Mother is unable to converse for long because she cannot hear and is unable to respond appropriately to our conversations. Her mobility is decreasing weekly so she sits all day reading meaningless newspapers and perfecting her “ rummage syndrome”. The mother we used to know is long gone and we will never get her back. Sad. But brutally true.
James Heath
saysI have had dementia for a couple of years i can still live in my own house my wife has dementia for a bout ten years she is in a home she has it really bad and she cannot walk and doesn’t no me is a sad time for me
Cindy King
saysI am so sorry to hear, James. My mother has dementia and it’s very sad to see her get worse by the week. She is so mean 75 percent of the time and that’s heartbreaking. Hard to watch my dad try his hardest to take care of her. I hope you have loved ones around to help you. Try not to be so sad. God has a plan for you. He put you right where you are supposed to be. Trust. I know we can’t understand why…but just pray and live your best life every day while you can. I will pray for you. I tell my mom that the only thing I want to do for her is make happy moments. I want her to be happy as much as possible through this terrible disease. She makes that difficult sometimes but that is what I have to focus on. Good luck, buddy.