I feel so helpless

[Valley girl]

Here I am feeling totally useless and helpless, Dad has Alzheimer's and vascular dementia that alone is hard enough he lives
with me my darling husband and 13 yr old son. We have been trying for such a long time to get help.. Apart from the memory problems dad also has cancer which has spread from the lymph nodes behind his ear he had major invasive surgery under local anaesthetic and surgeon can't understand why dad couldn't understand to keep still as they cut deep into his head. The surgery failed and nothing more can be done. He also has asthma and copd.
He has a social worker who has finally got funding for a carer for 1 hr 3 mornings a week on the days I work to help dad up shower breakfast and meds, a care firm picked up the contract and couldn't understand why I thought 7.30 am was too early so can't do 8.30 am so now gone back to be picked up by another firm. Then the day centre that was arranged for him don't really specialise in people with dementia so not sure if they can manage his care so we are going to try one day a week as opposed to the three days I work.
Respite seems more positive as he is going to hopefully gave it through shared lives scheme.
I know I may sound ungrateful but as I sit here wondering what tonight will bring in relation to my father I just want to cry I don't know how much more we can take! Can I take! Last three night I have had to sit with him as he crys out in anguish repeating how frightened he is he calls me mother, he talks constantly quite like a baby learning to babble, he has had chronic dioreah, and last night fell off the toilet fortunately only a little graze on the back of his thigh, he's 89 and suffering so much. I do the night shift then go to work at 6 am home by 7.30 pm hubby works from home and covers the day shift we also pay for friends to come and sit with dad in the day which is out of our pocket. Memory nurses are supposed to visit not seen anyone, last sept consultant told us Alzheimer's society would be in touch still nothing.
My son is truly amazing but dad can be so nasty to him calling him horrible names even pouring drinks over his head. And my don will just say grandad that's not nice shall we chat.
God I feel so bad pouring all this out but I am struggling and need something anything.

 

[Shedrech]

hello Valley girl
oh my, what a lot you have on your plate; seems to be spinning while you're trying to eat off it
so a warm welcome to TP where you can write it all out and we will read with care and respond with sympathy
what a wonderful chap your son is how incredibly understanding and kind -
so tough for you seeing those 2 generations interacting like this now; they must have once had such a positive relationship for your son to be so compassionate to his granddad
I'm sorry that you aren't getting the support you need - home care visits don't seem to mix well with working carers - I hope the respite comes through - it'll be good for you to have a break knowing your dad is being looked after all day every day
do let his GP know about the latest incidents - maybe a tweak in meds will help
maybe, just maybe, it's time to look into full time care in a local care home so you can relax somewhat and go to work each day knowing your dad is safe, supported and has company
sadly I have no answers for you
but now you've found TP, keep chatting ....
best wishes to you all

 

[MollyD]

Oh, Valley girl, please don't feel bad for posting.

You need a place to say it as it is. TP has been a rock of support for me. I hope you find it to be support too.

Your situation is very tough, juggling a job, caring for your dad with such intensive needs plus raising a family.

I don't know why you aren't getting the support you were told you'd get.

There are people here who can give very practical pointers. You need strength, energy and stamina to follow through on some of the dead ends in SS. Others here have been down that road in spades so know what they're talking about.

Apart from that, you'll find big warm ears here.

Sending support. Keep posting. X

 

[Valley girl]

Oh, Valley girl, please don't feel bad for posting.

You need a place to say it as it is. TP has been a rock of support for me. I hope you find it to be support too.

Your situation is very tough, juggling a job, caring for your dad with such intensive needs plus raising a family.

I don't know why you aren't getting the support you were told you'd get.

There are people here who can give very practical pointers. You need strength, energy and stamina to follow through on some of the dead ends in SS. Others here have been down that road in spades so know what they're talking about.

Apart from that, you'll find big warm ears here.

Sending support. Keep posting. X

Thank you both for your kindness, last night was another tough night I slept on the sofa so I could be there in a moment. We built a downstairs bedroom and wet room for him but he no longer knows where he is, sometimes he talks about me as if he were talking to someone else and not me.
I have 5 brothers and sisters all married with grown up families but 3 out of the 5 don't even ring to see how he is the other two ring and 1 will try to take him out about once every couple of months you see they all have errrr busy lives !

My son is absolutely fantastic with him I am trying to make sure he does not become a young carer as the older he gets the more he wants to help him, at the moment he shaves him he told him I need to practice grandad for when I need to shave myself.
He constantly checks if he needs a drink or something to eat, he will adjust his chair for him to make sure he is comfortable, he will start discussions about things he knows grandad used to like doing but he also goes off and crys when he has been hurt by something he's said. Or when he really poorly he will go and sit in his room or lay on the bed with him for a cwtch I worry how he will be when the inevitable happens as he still grieves his natural father who died from cancer when he was just a baby, he loves his step dad, he grieves the loss of my mother who also died when he was a baby and his step grandmother who died the day we took him to euro disney a year ago.

He is a truly one in a million child but he is still a child dealing with his grandad there seems to be little support for children like him.

Another moan sorry x
Bless you all

 

[Shedrech]

far from a moan Valley girl
much more a moving tribute to your son and his relationship with his granddad
I begin to see why you may want to keep the whole family under one roof
and am so disappointed that you are not getting the support which might make that a little easier for you
sadly, family members don't always step up as you'd hope
no advice, just wanted to respond to your post
best wishes to your family

 

[Valley girl]

Thank you

far from a moan Valley girl
much more a moving tribute to your son and his relationship with his granddad
I begin to see why you may want to keep the whole family under one roof
and am so disappointed that you are not getting the support which might make that a little easier for you
sadly, family members don't always step up as you'd hope
no advice, just wanted to respond to your post
best wishes to your family

Thank you Shedrech no doubt you know it helps just to know there is someone somewhere who is listening, thinking about you and what is happening, I try not to show my husband just how much I am struggling as he tries so hard to do what he can even though he's also working. I feel tremendous guilt when I go to work partly because I see it as a break doing a job I love which is mostly helping our older generation, I am highly respected in my field so mostly while in work Especially when busy I do not think of how my husband is coping at home with his work and my father, I am grateful that during the day Dad is usually not so bad so it's a little easier.

 

[CeliaW]

Hello Valley girl

What a lot you are trying to cope with. As well as lots of help here you may find it beneficial to speak to an Admiral Nurse on their free helpline.

Some areas have Admiral Nurses that can visit to give support. Everyone I know who has used the phoneline has found it very helpful as the nurses are very skilled, caring and knowledgeable - I hope it helps you if you try it.

Take care x

https://www.dementiauk.org/how-we-help/admiral-nursing-direct/

Sent from my SM-T310 using Talking Point mobile app

 

[jugglingmum]

Not any help for your main problem but if your son is still grieving for those long dead is it worth considering counselling or something else for him, there are charities for bereaved children.

I haven't used them, as haven't felt the need, but my first child was stillborn, and I am aware of my children having been sad on occasion and cried for him, but very rarely and not as they've got older. (they are 11 and 15 now).

I think he is already a carer, and needs space and time away from the house, is it worth considering contacting a young carers organisation?

 

[Penmon79]

Oh my, you all sound amazing, if in some real need yourselves!
I agree that your son already is a carer and there are Young Carer groups out there. I don't know which area you are in but I would ring Social Services to ask what's available.
I hope that you manage to get the help you all need.
All the best.
Susan

 

[Valley girl]

Oh my, you all sound amazing, if in some real need yourselves!
I agree that your son already is a carer and there are Young Carer groups out there. I don't know which area you are in but I would ring Social Services to ask what's available.
I hope that you manage to get the help you all need.
All the best.
Susan

Thank you for all the advice, my son has had grief counselling from st Davids hospice which has helped him come to terms with the deaths but he still grieves. I have been looking up young carer groups locally Barnrdos run a group which is about 15 miles away, and I am waiting for them to reply same with social services.

Although I came on here because of dad I think deep down it was my guilt over my son which brought me here, thank you all xx God Bless