My unbearable guilt!

[MrsD]

Hi Everyone

I'd just like to share my story with you to find out if there is anyone out there in my situation. I haven't found anyone yet in the "real" world and i'm desperate to be able to talk about my feelings.

My name is Vicky. I'm 26. My father was diagnoed with Vascular Dementia around 3 years ago. He died last year on April Fools day aged 81.

Things started when dad couldn't remember how to do crosswords or to write out cheques. He also couldn't remember what he liked to watch on TV or even who his favourite characters on certain soaps were.

Things got much much worse at the beginning of 2008 when dad started to become violent to my mum. He'd see her sat talking to other men and he'd ask to go home despite already being at home and my mum obviousley not being with other men.

He was prescribed anti phsycotics (sp) but these made his condition worse.

In Dec 2008 he was admitted to hspital where they said they would review his medication and his state of mind. They said this would take 4 weeks and then he would be allowed home. He never came home.

During his stay on the ward he had a serious of strokes which left him unable to walk, talk and eat although he overcame these and bounced back in a matter of weeks.

He also became violent and in February'09 it was decided he wouldn't be allowed home and would be put into a nursing home.

He stayed there until Apr'09 and died on Aprils fools day of Phneumonia.

During his stay there he became totally incapable of anything. He couldn't walk, talk, feed himself or control his bladder. I can't believe this happened to my dad. My wonderful fantastic, strong dad. The most painful memory i have is of him sat staring out of the nursing home window in his wheelchair listening to Vera Lynn, totally unaware of my presence or even of his own.

I was 30 weeks pregnant when he died and i cannot come to terms with any of this. Its all too much to bare. I cannot believe that my father never knew i was pregnant so knowing he will never see his grandaughter is too painful.

I cannot think of him without feeling horrendous pain.

Its not that he's gone. Its that this terrible horrendous disease took him from me when i wasn't ready for him to go. It took him in such a cruel and undignified way.

I feel so terribly lonely without him. As he was in his late 50's when i was born we had such a magnificant bond. He was retired through my childhood so we did everything together and i would give anything to have him back.

My father always said if we put him in a nursing home he'd never forgive us and that he'd die after 2 months which he did. I feel an enormous amount of guilt for all of this. I can't help but think if we hadn't let social services put him in hospital, then maybe he would still be here?

I'm so sorry for the lengthy ramble. Just wondering if anyone can offer any advise or help at all?

Thanks,

Vicky x

 

[Grannie G]

Oh Vicky, Please don`t feel guilt. It`s the most destructive emotion. What have you to feel guilty about.

Few people have control over dementia.
Some with dementia manage really well, we have testament to that here on TP. Others are savaged by it and medication is the only answer to help calm them.

Some people have a slow and steady progression of the disease, and others face a rapid progression. There is no control over the progression, it depends on so many different factors.

As he was in his late 50's when i was born we had such a magnificant bond.

Be grateful for what you had Vicky. Some have never experienced such a wonderful relationship.

My father always said if we put him in a nursing home he'd never forgive us and that he'd die after 2 months which he did.

Your father had no way of knowing what the future held for him. He had no way of knowing his needs would be so complex the day would come when you would be unable to meet his nneeds.

I`m so sorry you have lost your father Vivcky. And I`m so sorry your daughter will never know him.

 

[MrsD]

Thank you for your reply Grannie G. Its so nice of you to read my story and reply. Very kind.

I still have nightmares about him. Close to the end he would shout and swear at me and tell me i wasn't his daughter. Then sometimes he didn't know me at all.

I dream about him all the time but in my dreams he's still confused and dazed.

I know it wasn't him. I know it was the disease but i just can't get those memories out of my head.

I struggle to see how i'll ever get over this.

 

[Grannie G]

Vicky just hold on to knowing it wasn`t your father shouting and swearing at you. You know it was the disease.
And I understand how hurtful those memories are for you and hope the day will come when they start to fade.

Have you considered asking to be referred to a bereavement counsellor?

 

[christine_batch]

Dear Vicky,

I am so sorry to read about your Father's passing.

We all feel that guilt monster but you have nothing to feel guilty about.

It is a herendous illness and watching someone you love go through it is so very hard.

So much has happened and with the birth of your daughter, what you Father did with you with so much love, you can pass it on to a new generation.

You are still grieving for a special Dad.

Best Wishes
Christine

 

[lin1]

Hello Vicky.
Welcome , you will get lots of support from the lovely people here
Others who are better able to help will be along soon .

You feeling guilty about what you had to do.but really u had little choise
You are also grieving
Try to be kind to yourself

 

[MrsD]

Thanks everyone. Your words mean so much to me.

Grannie G i have often thought about conselling. I went to see my GP and he was very cold with me. Told me not to feel guilty and that i'd get over it. He really didn't listen to me and why i am so distraught. I know everyone dies some day. But its how they die that sometimes troubles you more than their actual death.

I've known from being a very little girl that i wouldn't have long with my dad. Not as long as some people. So i got as much of him as i could. Had he died peacefully at home i would have been tarribly sad but at peace with it. This i just cannot accept or get over. Its something i never thought would happen until it did.

I have very few people in my life. My mum is my rock and i now panic at every little thing. If she doesn't answer the phone or i can't speak to her i immediatley think the worse.

Unfortunatley my GP doesn't understand any of this as he didn't listen long enough and i have no idea how else to go about bereavment counselling?

 

[Helen33]

Dear Vicky,

i'm desperate to be able to talk about my feelings.

Your post touched my heart Vicky and in some ways I can identify with you. My husband's actual death was so traumatic and he was really let down by the system in the end. I think you made a very positive sentence which I have highlighted above because this shows that you know what you need. I, too, have a similar need to talk through what happened and my feelings about it all. Although I am a counsellor myself, I arranged to see a counsellor and this gives me the space and safety to say and feel whatever I need. Each week I am surprised by just how helpful it is What do you think to finding a bereavement counsellor who is familiar with issues relating to dementia?

Of course, Talking Point is here for you as well but I would think that you would benefit from the one-to-one where it is about YOU and your thoughts and feelings with someone who is able to contain very strong feelings and words. You could also ring your local Branch of the Alzheimers Society and ask if they have someone who would be willing to meet up with you. I don't think these kinds of things will just go away but I am positive that you can be helped

Sending love and a (HUG) and hope that you will let us know what you decide.

 

[Helen33]

Dear Vicky,

Your post crossed with mine. You could see another GP in your practice and request URGENT counselling. I have googled counselling services in South Yorks and this came up.

http://www.isouthyorkshire.com/local/counselling-services-and-advice-services/

I do not know of any of these services personally but you could ring around and tell them what you need and ask them to recommend and inform you of what is available.

There is also the Carers Federation who, I believe, can offer bereavement counselling. Just google Carers Federation in your local area and see what comes up.

My daughter is in much the same position as you because Alan, her step-dad died in February this year - 8 weeks later her biological dad died. She is an only child and she is terrified that something might happen to me She is waiting for a counselling assessment.

Love to you Vicky

 

[DozyDoris]

Hi Vicky, it brakes my heart to read your post. For my generation my parents had me late in life, Dad 40 and Mum 36. I am an only child with a small family (well really me Mum and Dad and thank goodness I now have a lovely boyfriend). I am totally a Daddy's girl and my Daddy has alzheimers. It could be a long road ahead, I pray it is not as I don't want to have to see what you have seen and felt and don't want Dad to go through that. I don't know what I'm saying really, I still have my Daddy and he knows who I am at the moment. I have horrible dreams/nightmare sometimes of him dying but mostly about it being worse. God only knows how I will be when the time comes.
I guess you can't stop the guilt, I see AD as a demon living and it is that which says and does stuff, that takes the memories away. Your Dad would be saying it's OK, I had gone, the demon was there, my body was there, I was someplace else.
I know where my Daddy will always be and that is in my heart, where your's is too Vicky, he'll always be your Daddy there.....
I don't know what else to say really and what I have isn't of much practical help but there it is,
With much thought, Jane

 

[MrsD]

Oh thank you so much Helen. I'll look on that website now. So very kind of you. I really feel for your daughter but with a mummy like you i'm sure she'll be just fine.

Jane i really feel for you. I hope that medication hopes for your daddy. I don't know what stage he's at. He may never get as bad as my father did. I truly hope he doesn't and that you continue to have your dad with you for a very long time.

I always knew dad wouldn't be around forever but at the age of 75 he was still an incredibly strong man. He was still up ladders decorating and moving furniture round so to see him deteriorate to his lowest point will haunt me til the day i die and i pray to god that i or any of my family will never have to go through this again.

I don't like to talk to my family about this as my mum constantly worries about me anyway and my husband does too. I think they talk about their concerns behind my back. I can always sense a change in them when their worried about me so i hate to talk about him to them.

I don't know how i'll tell them i'm seeking proper help.

 

[MrsD]

Kassy i hope everything turns out ok for you. My dad was the worst case you could possibly imagine but i know people who live with the disease for a very long time who only suffer very limited problems.

I truly hope this is the case for you and your mum.

Vicky xx

 

[Izzy]

What a horrible disease this is. Sending hugs to you all. Izzy x

 

[barbara h]

Hi Vicky

Reading your story really touched me as it is quite similar to what happened to my mam. We noticed things weren't right in about Sept 07 and then she had a bad fall in Jan 08 and after that she was much worse had to go into hospital and suffered a serious of mini strokes and died in july 08.

She used to say to my sister and i that if we ever put her in a home she would never forgive us. When she did go into the home she really was so confused that she wasn't aware what was happening to her or where she was but one day after a few weeks she seemed to have a 'window of clarity' and said she knew where she was and just kept telling us that she would never forgive us. That is the last real conversation i had with her and it has been really difficult to deal with but i think you just have to keep telling yourself that everything you did was the best you could for your dad.

I always had dreams about her being angry with us and shouting and i couldn't get rid of the bad memories of her last months but a few weeks ago she was in my dream and she gave me the most lovely smile - i feel it was a turning point and the good moemories are starting to come.

Good luck with everything and hope things feel better for you soon

love
barbara h

 

[TinaT]

You must get rid of this quite unjustified feeling of guilt. Get it out of your head and throw it away. You were a loving and kind daughter who supported your parents right to the end.

As Grannie G says so wisely, no one could have any idea of the complex needs this disease would bring and how much care would be needed.

Its not that he's gone. Its that this terrible horrendous disease took him from me when i wasn't ready for him to go. It took him in such a cruel and undignified way.

This quote can be applied to so many other diseases which rob the sufferer of so very much. My darling daughter in law died aged 34 from a very severe form of leukaemia. It was a dreadful disease and robbed her of so very much, her beauty, her youth, and towards the end, her mind.

We are frail, fragile human beings and fall prey to so many horrible diseases. The disease took your father's dignity, you did not! Nothing you could have possibly done could have changed that. If he had been home with you, the indignity, the heartache, the devastation, would still have been there.

xxTinaT

 

[patriciaann]

Loose Ends

Maybe we have to accept that we will feel guilt after bereavement, because we are human and fallible and can never get everything right. That includes our relationships with other people. Perhaps reflect on it, learn and move on.
My father died of the consequences of vascular dementia in May. He was at home throughout his illness, a combination of Alzheimer's and vascular dementia, including the final six weeks when he was very sick and I had to try and control his pain level with Oramorph. It was exhausting and when he died I just felt numb. However there was no possibility to stop because I also have to look after my mother, who is disabled and rather demanding. She made life hard for my father, he could not get up even to go to the bathroom without her constantly calling for him to come back. He was at her beck and call all the time, and she would not accept that he was far iller than her. However he would never hear a word against her. I feel guilty that I could not persuade her to give him space and the freedom to do what he wanted, but I failed and have to accept it. I would say, do your best, in the knowledge that it will never be perfect and often will be a very long way short of perfect. Often there are no good solutions to a problem, just a range of indifferent ones, and trying to pick the best one is like buying a lottery ticket.

 

[PostTenebrasLux]

Dear Vicky,
I have sent you a Private Message.
Martina

 

[lesmisralbles]

If I may

It is not guilt.
It is a deep deep sadness. A hurt so strong, a feeling that has never been felt before.
We all know we did our very best. We all think we could have done more.
That is not guilt, it is wishing and hoping we did our best.
I myself am having problems with this.

Barb X

 

[abbygale]

hi vicky
i have just lost my husband who had picks.as i write i am sobbing i dont know how i am goung to carry on without him.i too would like to talk to some one who understands.
please take care and excuse my typing never was my strong po

teresa
xxx

 

[sunny]

Had similar experiences Vicky and all I can say to help is this:-

Your Dad would not want you to feel guilty about all of this and beating yourself up over this illness which frankly just robs people of all of their dignity. If you go on beating yourself up all the time - then this disease has won - dont let it win.

You can now let go and get on with your life and make a great happy family which your Dad made for you - so you can do this in memory of him and now just remember the good parts of life with him (I am sure there are many).

Let go!