Diangnosed With Mixed Dementia at 55

[Flossmop]

Hi

I have been reading some of the posts for a few months now.
My husband has been diagnosed with mixed dementia (vascular and alzheimers)
He is 55 and has been suffering for around 7/10 years although we did not get a true diagnosis until last year.
It has hit hard with both of us. He lost his job because of the memory problems. He also suffers depression and anxiety, made worse by the fact he cannot remember say to day things. He calls it Groundhog Day!
We are trying to do everything we can to prolong this awful illness. Eating healthy (when i can get him to eat) plenty of exercise. We have a dog that helps to get my hubby out into the fresh air. Medication, although he is struggling with side effects from the meds. He goes to a walking football group every 2 weeks.
This week we had a letter from the DVLA to say he has to return his drivers licence and wil be on a 1 year licence from now on. It will be reviewed every year. This has upset him greatly. After his diagnosis last year we were told we would have to inform the DVLA. As i have never learned to drive my hubby was worried how we would cope if or when he lost his licence. This fear has now spurred me on to learn to drive at the age of 54 so at least we both still have a way of going for our long walks with our dog. I started lessons back in December and i am really enjoying the experience. I passed my Theory test at the end of March and now i just have to pass the practical test.
We have a huge love of walking and our favorite place to go is to the Lake District. We enjoy our camping trips even though most times after a few weeks of being back home hubby forgets a lot of the trip. But these are our memories we are making. Our memories for me to treasure.
I have now officially become his carer and am going to a carers meeting for the first time tomorrow 11/4/17.
Not sure what to expect but our support worker advised us to try nay help resources that were offered to us. So i will give it a try.
I wont lie, i am scared of where this will all end, but i try not to worry to much about the next day we just live each day as it comes.
Sorry if i have gone on a bit but it has taken me months to pick up the courage and nerve to write this. There's only so much you can talk to family about, they have their own problems. Hence the reason for the carers group.
I don't know of anyone else around us that has been diagnosed at such a young age.

Thanks for reading

 

[HillyBilly]

Hi and welcome Flossmop!
Well done for joining this forum, it will be a source of advice, support and comfort to you. Many of us rely on Talking Point to keep us going.
Well done too on learning to drive. Good luck for the test. That will make things a lot easier for you in the future.
As you've been advised, do take up any offers of help, support and activities etc in your area. That sort of thing will become invaluable.
For now, as you're doing, just make the most of life and enjoy every day x

 

[Jennyc]

My Carers' Group was a wonderful lifeline. To be able to talk to other people who really understood what life was like was so helpful. Dementia or Alzheimer's is such a life changer and no matter how much friends and family try to empathize, no one who has not been personally involved can really understand, I do hope you will find as much support as I did. I wish you well - Jenny

 

[Grannie G]

Hello Flossmop

I hope attending the carers group today goes well . It`s a good step, in addition to Talking Point to getting the support you need.

The future will look daunting but sadly it has to be faced . The way you are approaching it is the best way possible especially by taking the positive step in learning to drive.

Don`t hold back from asking for help.

 

[tss502]

Hi there,

My husband was diagnosed with AZ about 2 and a half years ago, at the age of 55. Like you, it came as a terrible shock to us. He'd always worked with his brain, spending many years in computer programming, and then giving that up to return to education and start at PhD. He was infact in the middle of the PhD when he got the diagnosis. There had been problems for about a year and we'd been 6 months in seeking a diagnosis, but honestly thought he was depressed and stressed and that was the root cause of the issues he was experiencing.

My husband took the news very badly initially. He didn't want to take any medication and said that he thought he would be dead within 6 months. We got through that and he started on the meds. He did pretty well at first but has gradually declined. We've done everything we could which we thought might help, including clinical trials.

I think we are doing our best to help him 'live well' with dementia. I am still working full time (I am only 46) and has has carers in during the day who assist him to do the things he still loves such as table tennis, cycling and walking. And we managed a couple of long-haul holidays.

I think my advice would be to take each day one day at a time. Don't think too much about the future and try and live in the now as much as you can, whilst planning for the future such as getting power of attorney in place etc. Try to keep on doing the things you both love. Take all the help that is offered and push for everything you need - sometimes you have to push the professionals quite hard and be quite firm about your needs and the needs of your loved one. Make time for yourself - it may feel like you are being selfish but you really need to retain a sense of your life having meaning in itself and not just being about you being a carer. Keep up your interests and hobbies (or find new ones) and find ways to ensure your husband is supported whilst enabling you to continue to do these things.

 

[Susisuster]

My husband was diagnosed at 54 three years ago, the first six months were very hard , when you are younger there are loads of financial things to work out mortgages etc what are we going to live on etc etc, also coping with the grief of the loss of the life you thought you were going to have , but once you get past all that deal with all the necessary stuff such as power of attorney you can concentrate on enjoying the life you have now, it is really hard but I have found a carers group and I thought I would never say this but I need it to offload feelings and worries that I don't want to burden my family with, and also meet people who really understand what you are going through.

 

[Flossmop]

Wow

Wow thank you to all of you for your messages.
I did go to the carers group meeting and it was 100 times better than i thought it would be.
I am now being assigned a carers support worker who i have been told will help with every little or large thing i need help with.
I wasn't aware of the power of attorney thing but thanks for the heads up. I will be sure to ask my support worker about this.
We do take days one by one. Making new memories for me to have in the future. We dont think or focus on the end stuff not yet,thats in the future.
I worry how long we have, how fast hubby will decline. But for now i have to focus on today. Tomorrow is another day.
My driving lessons are going well and i am going to take up swimming again. I have always enjoyed swimming and that will be for me always ne with no one else. Hubby and i have always done everything together even as far as working together.
So it's difficult doing things alone. But i know i must so i can keep on going.
Thank you all again for your replies. I didn't realise there were so many young people with this cruel illness.
Keep smiling
Flossmop xxx

 

[amandajh]

My husband is 54 and was diagnosed with Alzheimers 2 months ago, although i suspected something was wrong for 2 years, i am 46 and we only got married 18 months ago. I feel really down at the moment, as the man i met and agreed to marry isn't the man i now live with. I feel myself moaning at him all the time. I know he can't help it, and it helps to read your posts to understand that many of the things he does are part of the illness. I have to tell my husband to change his clothes, i have to write everything down, so conversation is almost non-existent now. He is still driving, on a yearly license, and although i don't think he is a real danger to anyone, he makes a lot of mistakes. I declined a carers group because i didn't feel that i could describe myself as a 'carer', but just his wife, but when i feel down like today and read your comments, i think maybe i should give it a try, so thank you for sharing. x

 

[Spamar]

Sorry, repetition.

 

[IslandEternal]

Try to record every memorable days.

Thank you for sharing your story. That is very sad but inspiring and to be honest I was very touched. You have mentioned that you both love going for a walk and visiting your favorite places and you also both enjoy camping trips but he forgets a lot right after.

Why not try to record every moment and have him watch it right after that. He might not remember it but it could definitely give him joy when he watched it.

 

[chick1962]

My husband is 54 and was diagnosed with Alzheimers 2 months ago, although i suspected something was wrong for 2 years, i am 46 and we only got married 18 months ago. I feel really down at the moment, as the man i met and agreed to marry isn't the man i now live with. I feel myself moaning at him all the time. I know he can't help it, and it helps to read your posts to understand that many of the things he does are part of the illness. I have to tell my husband to change his clothes, i have to write everything down, so conversation is almost non-existent now. He is still driving, on a yearly license, and although i don't think he is a real danger to anyone, he makes a lot of mistakes. I declined a carers group because i didn't feel that i could describe myself as a 'carer', but just his wife, but when i feel down like today and read your comments, i think maybe i should give it a try, so thank you for sharing. x

Hello Amanda , my husband also got diagnosed just before our wedding so I know how heartbreaking it can be. He is in his 6th year now but the dementia has been stable for quite a while. I try to concentrate on the things he still can do, rather then the things he can't . We do have some wonderful days still but also some difficult ones. I am sorry you are so down and wonder if you had a carers assessment or spoken with an admiral nurse? They are very supportive and help with practical advise too. Is husband on any medication to slow the dementia down? Keep on posting as you will find you are amongst friend xx


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