Everything's too much

[Sarah31]

I don't think there's an actual question for anyone to answer but I just feel I need to voice how I feel to try and make sence of things and have others opinions. Dad is in hospital his dementia seems to be spiralling at the moment. He looked at me today with absolutely no recognition and asked who I was. He looked so lost that I nearly lost it myself. He's been in hospital for a few weeks now because we've been waiting for a care home to become available. Whilst in hospital he was diagnosed with stage 4 cancer, it's very progressed and everywhere. The doctors have told me that I don't have much time left with him. A care home is now available but there was some concern and conflicting views between the health care workers as to whether he would need nursing care or regular care. There are no nursing homes available within a 30 mile radious of where I live, we have agreed on a residential home, it's nice and they do offer palliative care. The funding should be in place on Monday so today I moved some if his belongings in so it's familiar to him. With his dementia I've always taken one day at a time and never really looked to the future but today whilst going though his flat I found his Christmas decorations and realised that finally finding somewhere for him to be looked after wasn't the milestone I'm facing. I freaked out and couldn't stop crying because there's no point in me taking his small tree and decorations. I thought I had kind if come to terms with my babies growing up and not truly knowing the man that means so much to me but the thought if them never even remembering his face breaks me. I sat by his hispital bed today and for the first time opened my eyes and looked around me, not at the patients but at their visitors who all looked as lost as I felt, all trying to get the person who they love to reconize or acknowledge them. I can't even say goodbye to my dad because he doesn't understand. I just wanted to hug him today but didn't want to upset him because he didn't know me. I feel terrible, I shouted at my little boy today when he was naughty but it's not his fault because he doesn't understand, I've had a majour row with my husband because he just doesn't understand. I wake up every morning with tears in my eyes and I feel so lost. Then I. Try and think to the future, I hope the care home can meet his needs and he can stay there, I will always visit everyday but it's getting so hard . Then I think my god I'm going to have to arrange his funeral and I have no money and don't even know whaT he wants. I don't want to let him down and I've always coped by taking one day at a time but it's all getting too much.
If you've managed to get to the end of this, I thank you. I just needed to express how I'm feeling to people who may be able to understand x


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[DollyO]

Hi Sarah

I wanted to write you a message to say I totally feel for you and know a bit of what you're going through. I'm 34 and my Dad is 62. He is currently living in a nursing home, not with dementia, but with a terminal brain tumour. It has robbed me of my wonderful Dad. His memory is now awful, can't remember his life. We have been told he has weeks to live. I get upset that if i were to have kids, my Dad would never get to meet them. These diseases that affect peoples brains are so cruel, whatever they may be. My mum has very early dementia and i, as the only child, have had to start thinking about all the practicalities such as planning the funeral. Like you, i have no idea what Dad would want, it wasnt something we ever talked about. It is so so sad, my dad and I had a great relationship. We will get through this testing time and come out stronger in the end. But it is a heartbreaking road to travel.

Eleanor xxx

 

[2197alexandra]

Sarah my heart breaks for you, your not alone honey. I haven't a clue what to say cause I feel a lot of what you feel and have no answers myself. Just hope a hug ( ) from a stranger who hears you helps you feel a little better. X X

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[Rathbone]

Sarah, let me add my loving thoughts to the others. I am so sorry for the pain you are suffering and the struggle you are having in coming to terms with what this awful disease will allow us. The hardest part, IMHO, is witnessing the gradual disappearance of the person you love. The OH I married isn't visible any more - except for little flashes - but I know he is hiding somewhere, just out of my sight. I have to hang on to that thought because his "replacement" is a pale shadow, who often times makes my life hell. Were he to realise this, he would be horrified as I am sure would your Dad. We can't truly know what to do, or to say, or how to cope, but we are doing it from a loving heart (most of the time! Even the times when I wish him further are OK because I have to let myself off that particular hook). Be kind to yourself, Sarah, you are doing the very best that you can against impossible odds. We are all here listening and supporting you - holding each other up. Take heart and look straight ahead. All will be well. Love to you and yours X Shelagh

 

[marionq]

Sarah, on a very practical note. If you and your Dad have no savings or insurance there is some help with funeral costs from the state. I believe it is about £1000 which of course is only a fraction of the cost. Look online now at bereavement assistance or there are pamphlets available in public offices like job centres etc. if your Dad has some savings then the bank will release these to pay for his funeral if you give them the invoice from the undertakers.

Sorry to speak of these things now but I know it will be a worry to you.

Just looked the level of payment up and it can be as much as £2000 depending on circumstances. People of your Dads age usually have death insurance so go through his paperwork to check or look at his bank statements to see if there are direct debits to insurance companies. Over 70/75 these are often considered "paid-up" so a policy might be still with his papers

 

[Sue123]

My heart goes out to you Sarah.
Dementia is hard enough without having to deal with other illnesses too.
I hope you somehow manage to get through this. We are all here for you.

 

[pamann]

Hello sarah 31
I had to to face this with my Dad 40yrs ago , l had two young sons to cope with it is very hard for you, but something will just give you inner strength to get through it all, you think you will never ope but you will ome out of it as a mu h stronger person, does your father own his house if so the funeral cost will come from his estate, hope this is some help to you, be brave deep breaths and carry on. ♥♥♥

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[Grannie G]

I read your post Sarah and I despair for you. I wish I had answers . xx

 

[halojones]

Sara

I have read your post and really feel for you Sarah.just remember you are not alone. what a sad and difficult time. I wish you all the best with such an awful time...love and hugs to you..xxx

 

[Ninalily]

Dear Sarah

I so feel for you. My mum also has dementia and cancer. If there is any kind of blessing in this, my hope is that the cancer means she doesn't suffer too long with the dementia - and I can't know what it will mean. Your dad might not know you but he may be able to feel your love and your care for him. It is a strange blessing and an awesome task to be able to be there for our loved ones at times like this. Most of the time, I don't feel up to it, right now I feel I am on meltdown - and in a minute I will pull myself together and carry on. I know you will, too. You will love your dad through the pain of not knowing you, though the last days of his life. Your heart is that big. May you have all the support you need though this time. Love and hugs to you.

 

[LauraS]

Hi Sarah
you are going through a terrible time and just getting by day by day. You shouldn't beat yourself up about losing your temper occasionally with the children, you are feeling very emotional and it has to come out somewhere. Most children will understand if you tell them how sad you are feeling.
In the future, it will get easier and less painful for you to talk about you Dad, when you're not under such stress, remembering the good times, talking to your children about how he was as a Father to you. Hopefully, your children will benefit from the wisdom that you yourself have gained from him as you grew up. It's always hard to explain to young children, what a person was like in the past, as children tend to only see the present day person, However, as they get older, they will ask more questions and understand.
Good luck to you, i nearly cried reading your page. My Mum has alzheimer's and we've moved her in with us. I do my best to stay positive by finding one thing to laugh about each day , x

 

[Gardening]

Hi Sarah, my heart absolutely goes out to you. I have something similar at the moment, my Dad is now in the more advanced stages of dementia and I have two little boys of 3 and 1 who I know will never know the real him and it breaks my heart. It also breaks my heart that my beloved Dad never got to be the Grandad he so wanted to be with them. I also worry about how I'll cope when we lose him and having to look after the boys at the same time. It's hard enough, so hard, as it is. On the one hand you're trying to do your best for these new little lives that are developing and that you love so much, while on the other hand you're trying to do your best for the man who has been there your whole life and whose life is drifting away and who you're grieving for every day. It's so hard and I have no answers other than just getting through each day as best you can, it's all you can do, try not to get overwhelmed by all the tomorrows at once, take each one and what it brings a day at a time. Sending hugs xxx

 

[Sarah31]

Hi. I just wanted to thank you and everyone on here for their replies and support.

Dad passed away on the 11th of October. Because of his dementia I feel I never got to say goodbye.

The end was very difficult. No one wanted to help. No one seemed to know how to deal with the situation of end if life palliative care with advanced dementia. At a time when I just wanted to be with my dad and grieve I also had to fight battles to get him the care and support he needed. Even McMillan, Red Cross, social services and others all kept passing us around until it was too late. We could not have been the only people in the situation that we found ourselves in and sadly others will find theirselves in the same situation. Something really needs to change. It makes me wonder what would happen to someone who didn't have anyone to look out for them and that makes me sad.

Eventually dad got the care and pain reliefs that he needed but died the following day.

I miss him more than anything. My eldest who's 4 is really struggling with the loss of grandad.

Dementia is a mean disease and people don't understand.

This site has helped me lots. I'm sorry I haven't contributed much, only used it for my own support but I thank everyone who has answerd my questions. I wish I had found this site a long time ago.

I will never forget my dad and the great man he was
Xxx




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[Quilty]

You are right to grieve Sarah

Hello Sarah, I feel for you and your situation. He is right to feel the way you do as the Dad you know seems lost to you already. My own Dad died of cancer almost 20 years ago and I still miss him very much.

I always try to see a chink of light if I can. You should be glad your Dad got to meet your child, and your child met him. These memories are yours for ever. Also, this might seem a strange thing, but at least your Dad never has to know he has cancer and live with that knowing. That was very hard for my Dad, facing a terminal illness.

Its going to be a hard time for you. I send you strength and love for the days ahead. Maybe you should write a journal so you can offload your feeling. Also, keep offloading on us. We can take it.

 

[Quilty]

So sorry, just saw your last post

Sarah, so sorry you did not get more support and help. When my Dad died of cancer I had terrible memories of his death which kept me awake at night. She suggested I got a photo of my Dad at his happiest and healthiest and put it where I would see it all the time. It took about six months to work, but now when I imagine my Dad in my mind I see that picture.

I hope you can find peace too.
Best WIshes
Quilty

 

[Witzend]

So very sorry to hear your sad news.

 

[Lindy50]

Dear Sarah

I am so sorry to hear about your dad. You are bound to grieve for such a wonderful father, and your little boy for his grandpa. Christmas can be such a sad time

I lost my dad 12 years ago to many illnesses, the last one being a stroke, but I thank God he knew me until the end.

Like Quilty, I have a photo of my dad when he was healthy, which I see every day. I sometimes speak to him, and it always just reminds me he's still here with me in spirit.

Sending you hugs

Lindy xx

 

[Izzy]

Sarah I'm so sorry to read about your dad's passing. Wishing you strength and sending my condolences.

Please remember you can still use this forum for support for yourself.

 

[Pickles53]

So sorry to read that your Dad has died Sarah. Especially hard not just for you but for your little ones losing their beloved grandad. Sending my sympathy and wishing you peace and strength.

 

[Sarah31]

Thank you everyone for you kind words. Back to taking one day at a time xxx


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