New diagnosis, new to group, but feel so so old

[moodybeth2]

Just got the word today that my darling husband (who is not so darling anymore) is in the early stages of a dementia. He got this diagnosis two months ago, but has not shared it with me. My poor poor man has been carrying it alone for all this time.
However, home is becoming more and more difficult. He has increasing dificulty doing, completing most at home tasks, he struggles to understand what is going on on TV. Outside the home he just seems a lot more cranky and rude than usual- more impatient but no one would guess that he has a dementia.
No one other than me.
I feel as though the diagnosis must be wrong. I must be imagining or dramatizing whats happening. Hasn't he always gotten lost? Hasn't he?
I don't know how I'm feeling. He's so young (63). God, I have loved this man forever--- but he's going away so fast- in front of my eyes.
There are no successful treatments for this dementia.
Where do I start? How am I going to help him? How do I cope?

 

[jenniferpa]

Welcome to Talking Point (TP) although very sorry you have had to find us.

You ask how you are going to cope. Well, you've made a very good first step in finding us. No, it's not going to be in any way easy, and there will be very dark times as you work your way through this, but be assured that there are many people here who will help you in your journey.

We all look forward to getting to know you and provide support and assistance to both you and your husband.

 

[BeckyJan]

Hello Moodybeth and welcome to TP, sad though it is you need to be here.

I am truly sorry to hear about your husband and hope that you find support and help here.

If you read throuh the Threads you will learn how others manage their lives through the dementia journey. It does make a huge difference sharing your problems on TP.

Here is a factsheet which may be of interest:
http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=122

My other advice is to telephone the local Alzheimer's Society who will know what support and help is available locally. Many run 'cafes' which can be either coffee mornings, lunches or just get togethers of similar people. I am sure that will help both of you.

Others will come along to welcome you.
Best wishes

 

[piedwarbler]

Hi

Welcome to TP from me too. Hope you will find it as much of a support as I have xx

 

[Logan]

Hello Beth,
This has been such a shock for you. You can see what has changed within your darling husband (as I can with my hubby, but yet to have a diagnosis). Others outside of the long term marriage will not likely see it - and that hurts, doesn't it. You, and I, need support and we will receive it here on TP. Lx

 

[bucko]

New diagnosis, new to group, but feel so old

Moodybeth, welcome to TP. I understand exactly how you feel. My John was 60 when he was diagnosed with dementia and he is now 64 and the journey is not an easy one, but you will find lots of support here on TP. Sometimes when things get really hard for me, or I see certain changes, it is so helpful to get support from such lovely, caring TP members who can support you through some of the traumas. Knowing others are going through what you are going through, does help! You are not alone.

A big hug is being sent to you.

June x

 

[Izzy]

Hi there and welcome. I'm sorry you had to find TP but I'm glad you did. I think you will find lots of help and support on here. I can recognise lots pf how you describe your husband. It sounds very like my husband was before diagnosis.

Is the diagnosis Alzheimer's? I only wondered because if it is he will most likely be offered medication. My husband has known the benefits of medication for around 10 years now. It may not cure but it does help to slow down the process.

Maybe it's too early for you to consider a needs assessment or a carer's assessment but they are both essential for you. They will help you find out what support is out there for you.

Take care. x

 

[elaine n]

Hi Beth and welcome to TP
It's such a horrible disease isn't it? When my husband was diagnosed - after years of trying to hide it I think - he wouldn't tell anyone either at first, although of course I knew. I started by telling him that the children needed to know (he was so embarrassed) then I let him know that his sister knew and gradually helped him to realise that there was no shame in this and that it was helpful if people knew and understood that he had a (few) problems. He accepts that now. I think it was Helen 33 who said in a post that carers grow into their roles and I think she's right. It all seems so daunting at first but somehow as things progress we progress with them. There's a thread called compassionate communication posted by Grannie G that you may find helpful to read. i hope you get the help and support you need on TP, there's so much experience here xxxxxxxxxxelaine

 

[Izzy]

There's a thread called compassionate communication posted by Grannie G that you may find helpful to read. i hope you get the help and support you need on TP, there's so much experience here xxxxxxxxxxelaine

This is the link:
http://forum.alzheimers.org.uk/showthread.php?t=30801&highlight=compassionate+communication

 

[elaine n]

Thanks Izzy! Can't get the hang of doing that!

 

[Greensleeves]

I only joined this group a few days ago, but oh how I wish I had found it before. Dealing with dementia is so lonely, and in retrospect I think the worst part was before I realised what was happening. At that time my husband was acting strangely on occasions, was unaccountably rude and bad-tempered and often thoroughly nasty, and I was so confused about what was going on. Indeed there were times when I was questioning whether it was me who was ill rather than him. At least once I knew why things were as they are, it became easier cope with his lack of social graces.

Like your husband, mine also was quite young: he was 59 when he first started exhibiting unusual behaviour. He is now 68 and has recently gone into a care home, although I should stress that the vascular dementia is a result of his general ill-health and is not his sole condition.

All you can do is to take one step at a time and not allow yourself what I call 'wild imaginings'. At least I have learnt from this not to worry about things which might happen! Make sure you speak to your doctor and that if you feel depressed, get help early rather than trying to struggle on unaided. Speak to social services and make absolutely sure that you get a proper carer's assessment which will deal with your needs. I have found one of the problems is that everything is focused on the sick person, and the carer(s) and family will hardly get a look-in unless you are firm with them.

Take care and as I said, don't spend too long worrying about things which might happen. Although it may seem dark at the moment, there are periods of sunlight along the way. x

 

[Grannie G]

Hello Beth

There is no way you will come to terms with this overnight but the only way forwards is to discuss with and take support from those who are in similar situations.

There are many many of us on Talking Point. You have come to the right place. xx