New to Dementia

[funkymonkey]

Hi

My dad who is 58yrs old has just been diagnosed with Vascular Dementia. It has taken my mum 4yrs to finally get someone to take notice of her.

I am the eldest child and only daughter and very close to my parents. I have 2 children and one on the way and feel very guilty because i can't offer as much help as i used too.

I was just browsing the web looking for info on Vascular Dementia and came across this forum. It would be so nice to chat to people who are in a similar situation as i find other members of my family and friends don't really want to listen when i talk about my feelings.

I am scared for my dad, my mum and for me!

 

[Amy]

Hiya Funkymonkey,
I was in a very similar position to you 14 years ago - but it was my mum that had vascular dementia.

I understand how you are scared for everyone - Ihave a note that I gave my mum, when we were trying to get a diagnosis for her, just saying that what ever the future was, we would face it together. That is all you can do.

My mother went into a Nursing Home 18 months ago - her decline had been fairly gradual. Make the most of the time that you can share with your parents; help your mum prepare for the future, by feeding her information. Find out what help (financial and practical) she may be able to get. Help your mum to feel in control. I dont look back, I dont think about how things might have been - accept your dad as he is - love him as he is - there are still good times to be had. Assure your children that grandad loves them - if he is strange at times it is because he is poorly - my boys do not remember their nan being well, but they love her. Now the eldest lifts her in and out of chairs, the youngest will feed her, or just cuddle her. Mum came to the boys sports days and birthday parties - they just explained to their friends that their nanna was ill; we went out for family meals for as long as we could - even when mum needed feeding - keep doing all those normal things. Dad has an illness - but you are still a family, you are still proud of him - dont let his illness take that away from you.

Keep posting on here - best resource and source of support that I have found.
It is going to be a painful journey for your family - you will all shed tears - but you will be ok.
Love Helen

 

[jackie1]

Hello and welcome,

I think that diagnosis is probably one of the hardest times. No matter how many signs there have been there are always excuses that can be found.

When you get that diagnosis a cold feeling comes over you, it's like you have had the future taken away from you. It is all to easy to slip in to that black hole only seeing the negatives and dreading what is to come. But it isn't all despair try to see positives in what your father can still do, and keep reassuring him of your love. Never be afraid to cry or to express how you feel, you will need that release. But just as importantly don't forget to laugh, that will keep you sane

I think that we all feel guilt and think that we don't do enough, but you can only do your best and that has to be good enough.

I hope that you are able find a friend who will listen and offer a shoulder to cry on.

Take care
Jackie
x

 

[funkymonkey]

Thank you for your replies and kind words x

 

[KenC]

Hi funkymonkey,
The diagnosis prceedures can take a long time to sort out depending on where you are and how good the medical team are, but once you have the diagnosis it is up to the person with the Illness, to try and get the best out of there lives.
I honestly dread the future, but I live for today and that is the only way we can live with this dreadful illness.
I was 56 when I was diagnosed and I decided early on to try to turn the illness on end so to speak, so instead of thinking about the negative side, I started to use the illness (Dementia with Lewy Bodies in my case) to try to get the most out the time available, and beleive me if you can do it, it works wonders. Yes we all have dreadful days,but if you can try to be positive and get involved life can change. There are plenty of support groups with in the Alzheimers Society who will help, and they do just that. Since joining the Society I have never looked back, and there are lots of people who have the same illness as your dad.
So please tell him not to give up hope.

Best Wishes

Ken