Is it wrong to feel scared ?

[sarahloo27]

Hi my names Sarah im 55 years old ,My partner has today been diagnosed with early onset dementia he's awaiting a head scan but he was at the memory clinic today and couldn't answer any of the questions it was at this point we found out he'd had a diagnosis of mild cognitive impairment in 2016 which hadn't been followed up. I'm not going to lie I'm terrified of what's to come he keeps saying he scared he'll get up one morning and not know who I am . Anyone who knows me will say I'm strong and can cope with anything but that's a front I'm not I have bipolar and anxiety and ADHD and I feel very selfish saying I'm concerned for my own health , mentally anyway. Am I strong enough to cope with this and not fold I know that's not even a valid question because of course I'm going to be there but I feel like I'm drowning at the minute any advice would be most welcome thankyou in advance .

 

[Kevinl]

Yes you are, just posting what you've said say so to me. That's it, yes in a word from me. K

 

[Jo P]

Hi Sarah, I feel for you. My advice would be to take one day at a time. You will have good and bad days. Some days you will feel you can do it and others not. I don’t look too far ahead as I can’t see how my mother’s dementia is going to progress. It’s not easy. The key for me is really surrounding yourself with a good team for example we have a carer who takes mum out a few hours as she loves going out. I work part time from home to keep me mentally sane and stimulated. Mum has started to go to day care which is great for her and also for me. My sister has her every other weekend to give me and hubby time together.

I keep mentally strong by saying to myself no one is going to take my mind from me ie make me go crazy. You will need time alone and do not feel guilty. I try to go to the gym and eat healthily ie cook food from scratch (not always). My mum was diagnosed in 2016 with mild cognitive impairment she’s now at stage 5-6 of her dementia journey, she still knows who I am. Everyone is different, don’t panic. Yes of course your mental well being is priorite and you must look after yourself first ie what does that look like? What do you need to stay well? I have my husband who steps in and acts like a guard dog when he sees my mum manipulating me and I’m run ragged trying to meet all of her needs. Look around you to see where you can get support from. You are already living with it, don’t let a diagnosis scare you.

i wish we had more day care centres around this is lacking greatly.

 

[RM3]

Hello @sarahloo27. I am very sorry to read of your husbands diagnosis. My husband and I are both in our 50’s. My husband is not diagnosed but in the process, awaiting appointment for a CT scan and memory clinic. I have some valid concerns and the mini test at the doctors was not very good.
Although we are not where you are (yet), I can imagine many of your worries. The next stage in many many years together is retirement and our hopes for this time. The effect on our final years at work and so much more.
It must be very difficult for you and I hope that you find comfort and strength from this wonderful forum. People seem to find strength from somewhere and when needed, they support one another here and bolster each other to face the day ahead.
I have read many times on here - do as much as you are able to together, whilst you can. Even though we are not there yet, I have booked things (mini breaks and nights out etc) for the coming months. Sending my best wishes to you and your husband x

 

[Izzy]

Welcome to the forum @sarahloo27.

I’m sorry to hear that your husband has been diagnosed at such a young age. It’s understandable that you feel scared. I hope that being part of this forum will help you feel supported and less scared. You can ask questions, share concerns and just talk about how things are for you if you want to.

Good advice re taking one day at a time. There will always be someone here to share their experiences with you and offer support. You are not selfish at all considering your own health. If you are to be of help to your husband you have to take care of yourself.

You may find it helpful to contact the Admiral Nurse service for support too -

What is an Admiral Nurse and how can they help?

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

 

[canary]

Hello @sarahloo27

Not recognising your loved ones seems be something that people seem to focus on when thinking about dementia. Yes, it does happen a lot, but it is not inevitable - mum knew me right up to the end.

You will be OK. As someone has pointed out, you are already living with someone with dementia and have been for quite a few years. Get him organised with POA, seek out support, use this site and grab any offer of help with both hands.
xx

 

[Lolly53]

Hi my names Sarah im 55 years old ,My partner has today been diagnosed with early onset dementia he's awaiting a head scan but he was at the memory clinic today and couldn't answer any of the questions it was at this point we found out he'd had a diagnosis of mild cognitive impairment in 2016 which hadn't been followed up. I'm not going to lie I'm terrified of what's to come he keeps saying he scared he'll get up one morning and not know who I am . Anyone who knows me will say I'm strong and can cope with anything but that's a front I'm not I have bipolar and anxiety and ADHD and I feel very selfish saying I'm concerned for my own health , mentally anyway. Am I strong enough to cope with this and not fold I know that's not even a valid question because of course I'm going to be there but I feel like I'm drowning at the minute any advice would be most welcome thankyou in advance .

I’m so sorry to hear this my husband just been told he has mci I’m like you I’m so worried about the future just remember you love him and his your world xxx

 

[Spottydog]

Hello, it's very normal to feel scared. Unfortunately dementia is a journey that does not have a guidebook and each journey will be different. You will get a lot of strength, support and advice from this forum. Try to take one day at a time but push for an appropriate level of support for yourself (carers assessment) and your partner (care needs assessment). Use the helplines. Ask lots of questions and don't get fobbed off. Best wishes.