Angry and upset

Very sad that Dad is being taken from us so rapidly. He literally cannot do a single thing now, apart from sit in his chair and look out at the garden (so I suppose that is ONE thing!) It's only been 3 years - no legs, no arms, no speech, hardly any swallow left - totally immobile. Am angry that he should be reduced to this when he led such a healthy active life - kept his brain very active too (he was a treasurer - maybe he worked his brain too much!) It upsets me to see all the older people around him still able to enjoy their lives - many smoking, obese, etc etc. Upsetting too to see him and Mum struggle - their summer holidays for the last 2 years have been all of their friends visiting and regaling them with stories from their own travels abroad. Am bitter that other grandas get to play with their grandkids and my Dad can only watch his. My kids are 7, 4 and 1 - too young to lose their beloved granda. And there are grandparents who don't even seem bothered by theirs, or spend the time shouting at them. Mum can't even spend the time she wants to with them either as she is 24/7 looking after Dad.....Unfair - nothing else - just pure random unfairness of life. I love Dad so very much, but now realise more and more each day that he is going from us and nothing can ever change that. I just hope he knows we will treasure him always!! X

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  • hi fran

    i tsi v difficult to be in the situation u r in

    you r in teh NE i know - so keep your pecker up if posssible and think tha t despite yoru dad not beign able to ocmmmunicate with you tha the does know what is happpenign

    sorry i cannot be mor epositive

    lol Jill

    HUGS and xxxxx

  • Fran, every single thing you are feeling you have a right to feel. Sometimes you wonder if you can keep your sanity in all this devastation. I have these emotions a lot. I watch my husband slowly fade away and he so very much enjoyed our grandsons, but we can't go to their sports or activities anymore. Breaks our hearts as well as theirs. How unfair is this to everyone? I know know you feel. No advice here really, just remember that you feel this because you love him so much, Fran. The love will always be there for you.

    XX Rosemarie

  • Fran, I know just how you feel. My mum was the most loving, proud, active grandmother and I feel so sad that she had/s so much to give my children that she now cannot. They are missing out so much! My daughter is only 4 and she doesn't remember my mum as she was. It is terribly unfair on everyone, those with PSP particularly.

    xx

  • I am sorry that your dad's condition has worsened. I completely agree with you it is so unfair. It is good that he has his family around him and he is not dealing with this dreadful disease alone. You are also there for your mum who will get some comfort from this. Very best wishes to you and your family.

  • Hi Fran, take heart, there is many here that are in the same situation as your Dad and family, whom haven't had a chance to even see their grandchildren born. Your Dad has and he knows they are there so please ask them to treat him the same as he was before, he may not be able to show it but he will be enjoying it. My Hubby really wanted grand kids but it wont happen in his lifetime. We cant change the world, it's annoying to see how some people treat there own grand kids and children for that matter, just take strength in the fact that your family are loving and caring and nothing will change that, ( that's just the best thing ever) If he is anything like my hubby he will love to hear the adventures of others and at least his friends do visit? many don't as they cant understand and don't have much to say! It is a small company for your mum and dad to have visitors at all ( many don't stick around) And one thing your Dad does know is you all love him, he just cant find a way to tell you, so you tell him you know he loves you, all the way never stop. The future will be hard and my thoughts are with you. take care be strong.

  • Hello Fran, it will be little comfort to read that your words touch a cord with us all but they do and we understand. I visited my husband in his care home today and, as usual, on the way there I thought about what I was going to tell him in our one sided converstaion, how he might have changed from my last visit (a few days) and on the way back, as usual, I reflected on how he is now compared to how he was a relatively short time ago. Those of us affected by this cruel disease now inhabit a world we could barely imagine a while ago, we experience such negative emotions at times that we could scream (and do) and we break up inside when we are with the person we love so much and hardly recognise anymore.

    But there is a way to cope and for me it is to remind myself daily of the things that I must be thankful for in this uncontrolable situation. He doesn't hurt, he eats well and he sleeps peacefully. Remembering those things saves my sanity. I feel desperate for you and your dad and your family but try to find even a small thing that makes it bearable. Easy to say but I hope you can.

    Take care

    SheilaN

  • Sheila, your words about not being in pain, sleeping well and has a good appetite echoes my situation. I also convince myself that he is likely to come to less harm in the care home, than if he still lived with me. as there are more staff than there is of me for keeping a watchful eye out. Sometime the "mantra" works some times it doesn't but I carry on and try to keep cheerful for my daily visit. No one ever said it would be easy! x

  • Just my four penneth worth here..... FranR It's good to have a sounding off board here..... and I am so very sorry to hear about your father..... my husband died on 31 July having just had his 50th birthday. He had been diagnosed with Parkinsons in just 2006, and then PSP in April this year. This year he spent most of it in hospital due to pneumonia (twice in just 3 months he fought it off) and then with general breathing difficulties. He loved life, he swam competitively for 25 years, and ran marathons all over the world, rode motorbikes, had his own building business too at one stage, until the Parkinson's took a hold and put an end to all that. He loved his family and we had a new granddaughter who was not allowed on to the ward, so he passed away before he had met her, with just photographs at his bedside.

    You rant on, it's a totally vile disease - I had problems acknowledging that for someone so young to have this disease I hated it for that, hated it for what it did to him, and how sad my life is now without him.

    I also now find that my son cannot get insurance cover for his mortage and ill-health as he declared his Dad had Parkinsons/PSP and now they won't cover him for anything neurological, so these damn disease even haunt the living.

    Tell your Dad just how much you love him, hold him tightly, he still is the same Dad inside, no matter what the disease is doing to him. Be strong for him, your Mum, yourself and your family - it's hard, very hard, and I know this only too well.

    I promised my husband he would come home, as carers were being arranged to come in and help me, but I never realised just how quickly he would pass away, but I kept that promise he did come home, but only in his casket of ashes, until he was laid to rest with my Dad. I have however had a silver pewter heart with a few of his ashes in, and when I die these will be put in with me as the other promise we made to each other was we would always be with each. For the time being, when going out and I've done things that we had planned we would do, or thought how nice it would be to have done that (although in practice I would have probably failed) and I take him in his pewter heart with me.

    Sorry I have ranted on, am having a day of sadness I miss him so very, very much.

    Fiona

  • Fiona,

    Where do you live? In may places it is illegal to deny someone insurance because of a pre-existing condition or because of an unproven remotely possible genetic link to a disease.

    Has your son contacted an attorney?

    Barbara

  • Thank you all, for your really kind messages of strength and positivity in amongst this awfulness. I was having a very bleak day - it comes and goes as you all know. My thoughts are with all of you, carers, and sufferers alike. Thanks for your 'cyber hugs' - they mean such a lot! XX

  • Hi Fran, as a relatively newbie to this site I was so sorry to read about your Dad. After a long day looking after my partner, who at 76 was officially given the diagnosis of PSP in April this year and already at a similar stage to your Dad, I log on to read all these messages. I find myself with tears streaming down my face as I write this as reading these messages I realise that I am not alone on this awful journey, even though at times it feels as though I am. Two of my partner's grandchildren (10 and 4) visited us today with their Mum and Dad and even though he was unable to take part in any of the conversation, we did hear the occasional laugh which was good to hear as it told me that he is still able to enjoy their visits.

    Take care, my thoughts are with you and your family.

    Jan

    PS: What a great photo of you and your Dad.

  • Darling Fran,

    How much you sound like my daughter Sarah. Unfair is the word that she says a least once every time we mention her beloved father - Daddy as she still calls him. No my dear you are not alone even though it may feel as if you were. There are other daughters out there who grieve like you.

    As someone else has said, you were lucky that your dad did get to know his grandchildren. Our Tom, although he died at 75, did not have any grandchildren to love.

    My thoughts are with you in this terrible ordeal.

    Barbara

  • Oh Fran, bless you so.

    You have just decribed the last 2 years of my life.

    My dad passed two weeks ago and all I can suggest is tell him how much you love him and how you wish your kids had more time with him before PSP.

    Reading your words, my heart breaks for you, and I feel your anger and loss. I wish I had more comforting words, but please know that what you are feeling is so normal, and you are not alone in these feelings.

    One thing I did do, but started too late, was make a book for my kids (also 1, 3,&7) about their grandpa. I included lots of curent photos of dad and the kids, as well as lots of pre-psp pics of dad. I wrote a few stories about him, things he liked like favorite food, music, activiety. I also included a few of his sayings. I just want them to know him.

    Good luck to you, please take care. Its so unfair that we should all go through this.

    Love to you,

    Nel

  • Dear Fran, Sheila, Kay and everyone else undertaking this dreadful journey,

    Like you all I am watching as my husband slowly looses more and more of his capabilities to psp. His/our lives have changed so dramatically and so many things we use to do as a family are no longer possible or very restricted. My husband was very fit, enjoyed running and DIY and had a job that required him to travel worldwide. He was so full of energy. Now we can only do a short walk before he needs to rest and often a sleep.

    Sometimes I feel very bitter when I see other couples out and enjoying life the way we should. Instead my hubby just wants to sit and watch TV, he very rarely talks to us now.

    I promised him when he was first diagnosed that I would look after him at home for as long as possible. However we have reached a point where he is going to try a week of respite care. I feel very guilty about this, but family and friends say how tired I look and I would benefit from a short break. So Sheila and Kay your blogs give me some comfort. Thank you.

    Best wishes to you all.

    Peter3.

  • Dear Fran and all,

    I am going through the dreadful process of losing my Dad. And yes I get angry (more often than I should and wonder why us -- but someone said to me why not you it has to happen to someone.) It mad me so angry but I realized it was true. Dad has had pneumonia for over 2 weeks and has almost stopped eating as he is afraid to choke. He can't walk, talk except for some gurgling and smiles, he can barely see and now he has been incontinent. He was diagnosed 3 years ago but had been ill for awhile.

    My nephew, Dad's first grandson is getting married November 9th and Dad's greatest wish before he got this sick was to be at the wedding. Right now the nurses say that he may not even be with us by then as his airwaves are nearly closed and choking is frequent. The wedding is 1 1/2 hours away and the nursing facility says it will kill Dad to make the trip and he will need someone to feed him, change him, give him his meds and if he chokes we'll pray he doesn't die at the wedding. It breaks all our hearts and we haven't told him yet since we don't even know if he'll be here, but according to his medical staff there is no way he can make the trip.

    Sometimes i just sit in a corner and cry and feel so sad for what this disease has done to Dad. He was never sick, didn't take any pills for anything than this horrible disease struck. Sometimes I feel as though I will never be happy again -- but I know I will but a part of my heart will be missing. Sorry for rambling. I know everyone on this board feels the same, however sometimes the sadness seems to much too bear.

    Thank you all for your love, hugs, compassion and understanding. I hope we all live to see the day when treatment is available for this disease. We can fight on for those we love.

    Hugs

    DeeDee

  • hi all

    i feel so sorry for you all - i have PSP and know that i feel "blessed" for the 1st tiem that i hav eNOT ha dchildren or grandchildren to see and watch my decline

    i really do not knwo wha tot say (as a patient )with this illness

    i have nev erbeen in denial but do nto look fwd to not beign able to do anything 4 myself

    I am (too() independent i am told and loved ot walk to swim adn keep fit- cannot do these things now

    but my TAI CHIclass is good for balance and is a really friendly place to go to

    and i am pretty sure i have the slow type of PSP a si discovered on this site

    lol Jill and am tryign not to b too weepy today

    :-)

  • my love and thoughts and many many thanks to you all for sharing and caring. Its an enormous thing to get your head round...i have days when the disbelief is just the most real part of the day!! We have to get thru.... I tell dad i love him, and that i will be ok when he leaves - that it is not his fault and we are so proud of how he copes. thinking of all in the same boat. fran xxxxx

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