hello long time no post - we have a diagnosis

[noodle31]

hello

we have now been given a diagnosis of vascular dementia for dad.

the dr said each time dad hallucinates he is either having a small stroke or has had one.

this is happening 95% of the time.

he has been given some medication and in about 10 days time the dr is going to assess him at home also.

it is very very sad

time wise they said he could have a major bleed or a massive heart attack any time.

this has paniced my mum.....

am doing all i can when i can, but for other people ie my s-i-l and aunt it still isnt enough

i go there every day i that i have only got my youngest 2 children (and the older 2 are with their dad) so 3 days one week 4 days the following.

i ring mum every day too

oh and my partner takes them shopping or pops over during the week too...whereas my brother goes maybe once a fortnight and if they have an appointment to attend

what more can i do to help?

respite is in the pipeline....am chasing that the bet i can too

a tired jane x

 

[Jude]

Hi Jane,

It seems to me that you are doing far more than your fair share of the caring here - and running yourself into the ground at the same time....

It's a very common problem that one family member tends to shoulder almost the entire burden whilst the others avoid the issue or criticise. Quite often it's due to fear or just plain laziness in some cases.

It might be worthwhile attempting to approach your family members to ask for some support. If they can't or won't give it, then at least you will know what you are going to be up against in the long term. Once you've established the parametres, then you will be able to sort out some outside care and request a care assessment for your parents.

Hope this helps a bit.

Jude

 

[Sheila]

Dear Jane, do your parents have a SW or CPN? if they don't, request one urgently from the specialist, say you are finding things difficult as you have 4 youngsters to care for as well as worrying about your parents. SS needs to step in and provide a care package for them. This is their right.You may need to keep pestering, but it is probably the only way, the louder you shout, the quicker they hear it seems. Thinking of you, love She. XX

 

[noodle31]

Dear Jude and Shelia

Many thanks for your replies!

I dont quite believe this but here goes.......dad went and saw the neurologist today, my brother went with him......(things are progressing there!) and it isnt vascular dementia it is lewy Body with Parkingsons....

I know the symptoms are similar but poor mum has been out of her mind worrying dad would have a major stroke while alone with her, and i know that can still happen but apparantly the chances are less with Lewy Body??

Yes shelia they have a care manager, and mum has a volunteer who helps with form filling etc.

There has been a recommendation for specific things to be done around the house ie grab rails in the bathroom, raising the bed, settee and toilet

I will ring the cm tomorrow to inform her of the the now official diagnosis and hopefully she will sort out a daycare placement for him, he is going 2 days a week at the moment but that is to an assessment unit.

I have spoken to my Health Visitor as i have symptoms of PND and she has been very supportive.

I did say to my mum i feel useless when she is asking me questions i have no idea of the answers, and she explained sometimes she just needs a sounding board which is fair enough, i just said to her, well dont get the hump and hang up the phone when i dont know the answers.

My brothers have started to take more responsibility. altho my s-i-l has yet to keep her promises of visiting during the week. i know she isnt under any obligation because at end of the day it isnt her parents, but i wish she wouldnt promise mum stuff she not going to do

anyway thank you again, thats my update

love Jane x

 

[Jude]

Dear Jane,

Well - at least you know what you're dealing with now and can take the take appropriate steps to make life as comfortable as possible.

Do keep us posted.

Best wishes,


Jude

 

[Sheila]

Dear Jane, so very glad to hear that others are now helping and that a diagnoses has been reached. Now a care plan can be formulated to help. Thinking of you, big hug, love She. XX

 

[noodle31]

thank you....