Losing Hope

Here we go, one of my few and far between posts. I'm feeling depleted, the tears have been flowing quite freely, and quite often lately. It seems the past few months have been a quick, steady decline, or progression in this most brutal disease. Choking and aspiration have become a daily problem, the norm. Communication is so limited, I don't know how any of his needs can be adequately met when he cannot express himself. They brought in some device but is no easier than his IPad, he has poor dexterity, and freezes constantly. His eyes close involuntarily all the time too. It just effing stinks this horrendous disease. There is nothing I can do, I visit as often as possible, but it's so hard to go and see this. I leave in tears every time. How cruel to allow someone to live like this! I'm so sad, and so angry at this stupid PSP!! I know it's not about me, but I'm not sure how long I can keep going like this!

Just had to rant, I'm at my wits end, frustrated beyond frustration

Joan.

25 Replies

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  • This forum needs a 'Dislike' button...........

    So sad and sorry to hear it has come to this for you......

  • Hey, Pat. I look at all this grief here and can only imagine that you and the other folks with the illness might feel alienated and distressed by it all. So, begging the pardon of those who are so truly suffering the loss of their loved ones and who naturally feel that this is an unthinkably cruel disease, and I hope no one imagines I don't sympathize, but that is not how it seems to me. It's hard, and there's no question my sweetheart wouldn't have called this much of a life four years ago, but we still have sunshine, sometimes, and food, sometimes, and each other. And I have spent some time in a children's oncology ward, if anyone wants something to gauge cruelty by.

    I just want to say that when the loving family grieves and suffers and vents as we often do here, I don't think it should be taken as representing the whole of our experience, and it isn't the experience of those we are losing.

    And I really don't want you and daddyt and Steve and Liz and Sharon and Jill and Eileenie and the others to be disheartened by our sharing our grief. It's only that we love our husbands, wives, parents, siblings so much. Am I making sense?

    Love and peace to you and all here, ec

  • Dear Eastencedar,

    You are very special. Your posts are always optimistic and helpful. God Bless you and yours.

    I am recovering from pelvic surgery and Joe and I are finally at home together. I was in rehab facility for 44 days and hospital for 10 days. I had a great surgeon Dr. Helfet at HSS in NYC. I should be walking in two more weeks.

    Joe was with our son and his family and things are somewhat different but he is stable. He still sleeps in his recliner but he will now keep his feet elevated and that has eliminated the edema. We have help from 9:00 to 9:00am and that helps me.

    I want to say hello to you and other friends and wish you well.

    Hugs

    Rita

  • Keeping in touch

  • I understand what you are saying and my suggestion for a 'dislike button' was not to be a 'dislike' to the person posting but a dislike of the thing they were posting about.

    On Facebook if someone posted the comment " My dog died yesterday " people had only the option to 'like' that statement, they now have other options as shown here...... wired.com/wp-content/upload...

    There are still plenty of folks who just click the 'like' button regardless of what is being said.

    My reaction to Joan's posting would have probably been 'tears' or maybe 'angry'

    All best wishes,

    Patrick.

  • Hi Bargiepat... Yes, I took that to be your meaning.

    I asked Health Unlocked to provide more buttons many months ago. They said, "What a good idea." and then did nothing. They make their money gathering stats from this site and selling them on. They don't seem to be interested in spending time developing it.

    I sometimes click like when I mean, "I am in your corner", but it could also be taken the wrong way.

    Hey-ho

    I hope you are having a decent day.

    Best

    Kevin

  • Oh, so sorry! I should have said that I understood the 'dislike' button idea. I have often had a similar thought. Maybe an 'amen' button, too!

    Anyway, I think I took it as you intended, truly. I only wrote after I had read through all the other comments knowing you were seeing them, too, and wanting to add a bit of perspective, not a response to your words so much as to your engagement with the site. I know some folks find some posts hard to read, from both sides of the equation.

    We have scared some people away, I regret to say, and don't want you to be one of them!

    All the best and love, ec

  • No worries........

    I hate what is ahead of me but I won't be scared away by reading here of all the tragedies that are played out everyday.

    It is so good to feel the love that abounds on this forum, long may it continue.

    Cheers,

    Patrick.

  • I got that! "like" can mean "read your post" or " hear ya"

  • Not disheartened EC. I'm trying to look at this from both sides of the fence. I've learned that although not every day is good, there is good in every day... especially on the bad ones.

  • Thank you for sharing those words.

    There is good wisdom in your poetic wording.

    Best

    Kevin

  • I just wrote them down😑

  • Beautifully said! And so completely true. ❤

  • Aww Joan I'm so sorry my heart goes out to you!! Let the tears flow, shout and scream to us, we are all here for you and most importantly we all, understand!! X

  • Hey, Joan. I'm very sorry this is such a bad time for you both. It IS awful. All I have to offer is sympathy, but that is offered in buckets. Peace, ec

  • Sending hugs, it's so hard xx

  • I'm so sorry and I'm thinking of you, this disease has to be the cruelest of any I have ever witnessed!

    Sending you my love, stay as strong as you can....

    Pat xx

  • Sending big hug and much love.

    Lots of love

    Anne

  • Joan I am so sorry you are feeling so sad. You are right this is the most brutal disease mentally and physically.

    Thinking of you and sending my love...

    Lisa xx

  • Joan don't give up. It is so hard I know but one day you will be glad you made those visits. Even if he can't communicate he can hear? Hold his hand and tell him you love him as often as you can. Tell him about all the things you did and remind him of the good memories. You will never regret it. I know how hard it is to leave too. It broke my heart each time. I wish I could go back in time and tell him I loved him again though.

    Marie x

  • Thinking of you xxxx

  • I'm so sorry. My Charles is at home but same thing as you are facing. I hate this disease, it's the worst death sentence anyone could have.

    I cry all the time, all the time.

    Hope you'll be able to cope as well.

    Cuttercat

  • I know just how you feel Joan, it feels that you are the only couple in the world having to suffer this horrid disease and it's awful consequences. I have to remind myself that there are others out there in dire situations and with no support. When watching the person you love slowly slip away from you all you can concentrate on is him/her and there is no space thinking of others. I have forgotten family birthdays, can't face ringing friends for a chat, cook for myself and so it goes on. It is all very well telling people to try to get down time, the only time I feel that I can let go a bit is when Ben is at the hospice daycare centre, even then I tend to be clock watching. I often pop in to see NanaB for a coffee and we actually went to Scotney Castle this week the first time I have done something just for me since Ben became too ill to leave on his own. We took my sons puppy with us as I am puppy sitting for 2 weeks. It was so refreshing to have some real 'me time'

    Keep strong if you can

    Love Kate xx

  • Hi laroux

    It is hard.

    It is horrid and many of us rail against it and cry at times.

    There are so many good words in the posts to you above. I am wholeheartedly behind them all.

    I would add to them that both the cared for and the carer, suffer from PSP and it is horrible for both.

    Warmly

    Kevin (and my Liz is nodding agreement as I am speaking as I type)

  • Hi Lourox, I got tears in my eyes too . I lost my loving husband eight months ago . It was hard for me to watch him suffering & feel so helpless & frustrated , I exactly know how u feel about this horrible PSP . I will pray God for u that he will give u all the strength to deal with this . I live in N.J If u closer to me I can help u ,let me know .

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