Dont know what to do (first post)

[makalu]

Hi Ness, I wish that i had the time with my dad as you have with your husband, my dad is 61 now and has FTD he is in a nursing home as can no longer rely on me and mum to look after him. Its nearly a year to the day that he went into the home (7th Oct i think). For us we had many years of not knowing that he was so ill, thinking his behaviour and actions were just 'mid life crisis' and suddenly we had diagnosis and he was taken from us.

I dont want to upset you any further, but i think dads case was left too long before being diagnosed, all i will say is there is a long hard road ahead, but you will have good times, cherish every minute with your hubby and make the most of the time you have together. You will adapt to make things as comfortable and happy for him as you can. Your life will be put into perspective suddenly, Im sure of that.

We didnt have that with dad, he went into hospital for assessment and never came out, he was too far advanced.

He is settled now though, happy in his own world? i dont know the answer to that, i like to think so, but i can say that he is being looked after and is loved by the nurses at the home. I miss him dearly.

Good luck and I can assure you that this forum will be of great support to you over the future as it has to me. Ask lots of questions, you will find more honest answers here than from any professionals you meet!
Lots of kind thoughts to you..............Nicky

 

[ness688]

I need some help again

I have sat here going through the site looking foe answers but I'm not going to find them, I have to except this is happening to mu chris and try to live a life as normal as possible but i cant let go that nothing cn be done for him and I think I'm going mad.

I first wrote about Chris being diagnosed with FTD but was awaiting further test results to come through . Since i last wrote we have the final diagnoses . Chris has vascular dementia and small vessel disease , hense why he was showing shrinkage to the front part of the brain , actually its all over and on an MRI scan it looks like a firework has exploded in his brain.

Since writing to you all , Chris has been having strokes and TIA's. the strokes are large and the TIA's are called cresendo TIA's , meaning many at once .

Please try and help me as to why this has happened so quickly and why. The consultant has said there is nothig they can do . The strokes happen that often they dont take him inot hospital any more , which leaves me to make choices about his health . leave it 2 hours before you ring us , sorry but thats not how i feel when i watch my love of my life struggling with pain and fear about what is happening to him . After a long stay in hospital in nov we were allocated a stroke nurse which we have seen 4 times .
We get no help in any other way apart from practical help like stair lift etc. Im still waiting to have his DLA paid to him to hlp us care for him .

Loneliness comes to mind and i think about all the other people in my situation and wander how on earth do you cope .

My family are so used to seeing it now they take each stroke as im telling them about the weather and dont think to ask "how are you ".
doctors says to me what do you want me to do ? thanks that really helps .

I think of all of you here and wish you didnt have to be here but thank you for being here .

Sorry to pour out , they is plenty more but im keepig quiet you all have it to bear .

love to you all
Nessx

 

[Izzy]

I'm sorry things are so bad for you Ness. Can't help other than to send love and hugs and say 'thinking of you'. Izzy x

 

[BeckyJan]

Hello Ness:
I have read your thread and feel so sorry that you are having to cope with this when so very young.

Do try and take up the suggestion of contacting your local Alz. Society - they cover all types of dementia (not just alzheimers) and you should get some thoughts on the type of support you could get (good for when the GP asks you again 'what do you want me to do!!! ).

Our local Society group just had 'cafes' which were regular monthly meetings, either coffee mornings, bar snacks or just get togethers. Ours were generally supported by social workers or CPNs (sadly not from our part of Derbyshire) and they offered much advice. It was an effort for me to get my husband there but we did benefit from the contacts.

I am not sure how much 'care' you have to give but if this is getting really tough then ask for a Care Assessment from your Social Worker. You are entitled to one for yourself as well as your husband.

I hope I have not waffled too much. Please keep posting and asking questions.

Best wishes Jan

 

[Sandy]

Hi Ness,

You might want to look at this thread by another member, Wendie, who joined Talking Point about a week ago. Her husband is also affected at a young age with a form of dementia that comes from a series of repeated strokes:

http://forum.alzheimers.org.uk/showthread.php?t=20677&highlight=cadasil

I also agree that it would be good to get in touch with your local chapter of the Alzheimer's Society as they support all people with dementia and their carers, regardless of the root medical cause for the dementia.

Take care,

 

[ness688]

Hello Jan

Well firstly we dont have a social worker yet as the referral is taking ages even though im on the bloody phone every week. we had a CPN allocated she asked chris what she could do for him , he said i need to talk about things ,her reasction was "we are not a cousillor service we are here for people in dispair",this was after he cut his arms up with fear .he then got worse because of her attitude. an apoligy sent when i reported her.

we have made contact with local A/D group and have been but age is a prob for chris ,so i think too early for him. i will go back ad talk.

i have to do something.

thak so much for taking the time xx

 

[ella24]

Hi Ness

have you also tried MIND? They are a mental health organisation (not just AD) but may be able to access help that is better age-related to your situation.

http://www.mind.org.uk/help/mind_in_your_area

They may also be able to point out support/processes that relate to what the NHS can provide in your area

thinking of you

e

 

[BeckyJan]

Hello Ness:
I can well believe the service as I have had concerns with our Mental Health Team too.

I do think you should pursue the CPN. Why not get on to the Consultant again, tell them what happened with the CPN and ask if you could have someone else or another try! Emphasise you are 'in despair'!!

Its so d...d easy to deliver these words; I know how hard it is to get others to act.

Keep trying. Jan

 

[Sandy]

Hi Ness,

Also it's worth considering the Stroke Association:

http://www.stroke.org.uk/in_your_area/england/south_west/index.html

And also Headway, the brain injury association (also covering brain injury due to stroke):

http://www.headway.org.uk/branches/cornwall.aspx

Take care,

 

[ness688]

Hello
Thank you all for your advise , i was thinking about the stroke society, i will ring them tomorrow. i tried mind but they had concerns about his aggression so stopped coming.

i will be knocking on some doors tmw as im sick and fed up with the lack of care and respect to my husband.

thank youxx

 

[Winnie Kjaer]

Hello Ness
I too wish to welcome you to TP where I know you will find a lot of support and answers. I know I have. I am fairly new myself. My husband has Vascular dementia having had 3 strokes in the last 6 years, 1 major resulting in paralysis so he is 24/7 dependable. I really hope you will find masses of support outside TP too. You are such a young couple and with the right support, you will hopefully be able to cope with this together.

 

[Lynne]

Headway in my area are very good, my friend (vas. dem) goes every week & is always treated with understanding & respect.

 

[ianm]

knowing what to do

Hi Ness, I joined today and just posted my blog. My wife, Jessie was diagnosed just over 2 years ago at 49, but it seems to progress like wildfire the younger you are.Very distressing and emotionally draining. IanM

 

[sad nell]

Ianm , also welcoming you to Tp, it has been a lifesaver for me, my husband also has early onset , some 6 years now and yes it does seem so rapid, we did lots in the early stages and are so glad we did, Trev cannot any longer do anythiing for himself, do not wish to alarm you , but if you can pack these early years with good memories, that is what keeps me going, if i can help in any, please ask. take care of yourself too. Pam