Friends Withdrawing

Well after 8 years of PSP I've begun to notice my growing isolation. This is a hard one. The holidays were horrible. We really couldn't attend any parties and people were with their families; we have none. We were alone and it was bad. I was altogether too understanding and accommodating. I also felt that i was a wounded animal and nobody wanted to be around me.

This was a glorious self-pity feast for me and I am post-holidays trying to pull out of it and make contact with the healthy world again, although I must admit to a load of resentment that I am dragging around on my back. AND GUILT about feeling resentful and weak. So I am confessing to all you my self involvement, tears, and runaway fantasies. I am so tired of this.

Bob at this point talks in nonsense word salad and doesn't understand anything I say. And reverses things..up is down, no is yes, in is out, close is open, don't is do and so on, which adds to the general Alice in Wonderland confusion and chaos at our home. Shoes in the freezer, branches of trees in my bed, pee on the floor, ice cream melting on the sidewalk..and walking walking walking walking. Poor Bob, what a nightmare.

Well I'm glad the holidays are past. Time to perk up and continue to continue,


Costa Rica

26 Replies

  • i am so sorry that you have had to suffer this in silence -- and how awful is it not to have anyone to turn to especialy at this time of year

    my love to you


  • Thank you Sharon for the note.


  • Jill you sound totally run down and exhausted - I did write a long reply to your post full of sympathy wise words etc etc but then managed to lose it and couldn't face typing it all out again ! So instead I am sending you a giant hug from Devon to you in Costa Rica and hope that that makes you feel not quite so alone . Your NOT alone we are all with you in mind and spirit as you have been for me and others on many occasions .HUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUG. Georgepa

  • Thank you georgepa ....I gladly accept the hug and send it right back along with our Central American sunshine today.


  • Jill how awful. We had a day trip planned for Christmas Day which got cancelled because by the time I had cleaned up the chaos of the night and got the third load of laundry going it was too late to start. So our Day was not good. But on Boxing Day good friends came for a belated festive dinner and it was lovely. We actually have a mere handful of good friends here (three couples to be precise) but they, together with friends from other parts of Turkey and actually all over the world, do make life bearable for both of us. Now I am embroiled in a translation job (I translate academic Turkish into English) which is very challenging and would totally engage me were it not for 'Toilet', 'Tea please' 'Fire's going out' type demands from Chris who can now do so little for himself. Am on a tight deadline so I'd better get on with it while C is still sleeping.

  • Turkish into English sounds like a full time job to me..Not as bad possibly as Turkish into Finnish...or crazy talk into English...But you have your hands full. Possibly the translations are interesting? That would help..but still work...I think we all need retirement at a Spa for a few weeks and then back into the battle. Or maybe that would be a hard return. I've had those little clean cottage of my own fantasies lately. Like..take my dogs and books and move away to a happy ordered sunny clean peaceful place with flowers and birds...sounds like Walt Disney Snow White....too much Disney in the 1950s..kind of spoiled me....where are the talking birds when you need them ...?


  • Ironically Turkish and Finnish are in the same language family so translation should be easier - not that I speak Finnish. I love the translation work as it keeps my brain working. When I posted above I was worried that I wouldn't be able to do this piece of work to the deadline which is very tight, but two days on I know I am OK so am more relaxed about the work now - and we need the money! Your Spa idea sounds wonderful.

  • Oh Jill, Your second paragraph could have been written by me but I have family and lots of friends to support me so I can't really imagine what it is like for you. I'm feeling like I am as I have had a abscess behind my eardrum which burst yesterday. The pain has subsided because of this but I feel as if my head is under water and my ear has been oozing for 24 hours now, yuk. I'm usually a very healthy person but these last 5 days have really tested my patience. trying to carry on as normal, frequent hoisting on the commode because of Colitis, constant nose wiping, feeding, drinking, emptying convene bag etc etc when all I want to do is sleep. I can't ask friends or family to sit with C as I can't expect them to hoist him and clean him up when he can't get on the commode quick enough and he would hate it anyway so couldn't do that to him.

    So Jill, I'm sending you a big virtual hug. Now the holiday season is over I hope you can get out and about and meet others to chat to and get responses you can understand but I know it is so difficult so keep posting.

  • hugs to you as well Nanna ,

    I hoist John at all times he is either chair or bed bound . has Ben for about three years . he complains , NO ! that's not right m he never complains . he tells me that the sling pulls under his arms and pulls the muscles in his back . I try and get the sling as comfortable as possible . I try to time things that he isn't in the sling too many times or for too long but like Colon has days when he is back and fore the commode chair . (colin) .

    I wish there was a better sling available for toileting . the full sling wouldn't be suitable

    it is very trying and also why I can't keave John for too long . I haven't anyone to see to him go on the commode I will use a pad then but he is generally dry when I get back . he is unable to use the sheath and bag because he is so retracted and can only use a bottle if I hoist him . like you I try and keep his dignity , he does like th carers to,see to his bottome half I get up early and see to that myself . they actually have very little to do . I do shoot myself in the foot . I know .

  • Can John stand? Has he any strength in his legs? I use a standing hoist for Colin So his feet are always on the ground but the sling keeps him upright. I have got the full sling but haven't needed it yet. I'm like you and tend to his bottom half. I always put the convene on although some of the carers do take it off. We only have one girl who Colin's trusts enough to let her do everything necessary.

    I also shoot myself in the foot.


  • I am sure you do . the carers raise their eyes when they come in lol .

    no he can't stand at all . we did try the stand . I so wish he could . We used the heavier one for a while but much too heavy for me and carers are here when he needs the toilet .

    he would be in pads all the time then and I don't want that he can have enough of a problem with keeping his skin intact as it is , I do manage though .

    someone. Told name the other day . WELL YOU HAVE A LIFE !!

    I know I do but in the main. He has been my life . Got visitors arriving at the moment xx his sister

  • Is that the sum of our caring, legless one minute, now we are all footless. Perhaps, because we are footless, we all need to be legless, or is it that we are footless beacuse they are not much use, beacuse we are legless!

    Whatever! We all do what we do, beacuse there is no choice and we want to anyway!!!

    Lots of love


  • Sounds like another glass of wine to me Heady !!

  • I'll provide it, you open it!!!!

    Lots of love


  • Oh my dear you really have your hands full. All the bathroom-ing is the killer. It needs the army corp of engineers to come in here with some heavy equipment. Or condemn the house and grounds.

    Well onward into the morning..what surprises today?


  • I too identify with the growing isolation made so much more evident by the festive season and our inability to partake because of this damn disease.

    I have just left my dearly beloved at the local hospital as his neurologist wants to sort out his meds in the endeavour to find something that will give us both at least some sleep at night. Have to say I feel really terrible abandoning him there as he is so used to having me around 24/7.

    Hang in there Jill. You have company, albeit from a vast distance, on this journey.



  • Thank you so very much for your really does help to hear other's stories.


  • My dear Jill

    How brave to admit to how you are feeling You are NOT alone and it is NOT a failing on your part and you are NOT full of self pity, just aware and facing the truth. I send love and hugs to you both Flicka xxxxxxxxxooooooooxxxxxxxx

  • It does seem that it is very easy to be hard on ourselves....I don't know what standard of behavior I've created to make things harder...something like those well-dressed TV mothers of the their clean starched shirtwaist dress with a strand of pearls and nice little haircut. They did seem to have everything, always, pleasantly under control.

    Love and thank you,


  • Still have the strand of pearls but NOT the haircut x

  • Thanks to all of you! That you take the time to respond to me is a wonderful gift. I gladly receive the hugs and return them right now.....hug hug hug....



  • Jill, My heart aches for you and Bob. These are difficult times for you I'm sure. Just know that I'm here, along with others, to support you. The holidays were not good for me either having the first Christmas without my beloved Sharyn. Last year she couldn't do much be at least was there in spirit as I put up the tree and other decorations. Miss her and didn't put up hardly any decorations this year. Hang in there. These are the difficult times in the disease but you can and will survive. Stay strong!! Don't allow PSP to change who you really are!!!!! Jimbo

  • Hi Jimbo, sending you an extra big hug and lots of love!


  • Jimbo..what a sweetie you are! I also hug you back. This entire process is so hard and confusing. I never know if I am doing it right. It is so hard to make my Bob feel better. He is constantly in distress and lost, confused and worrying about fantasized problems and commitments that don't exist. He believes he has work to do but can't find it and can find no peace. It is terrible to watch.


  • Hi zjillian

    I know this post was a while ago now but I just wanted to tell you how much the picture you painted of your life with Bob made me laugh..'shoes in the freezer,branches of tree in your bed'.. And I hope it is ok for me to laugh......I love the phrases that you used to describe how things are there 'Alice in Wonderland confusion' and it does seems increasingly familiar to me here as well!

    Den x

  • Of course LAUGH!!!!! It is the best thing we can do....And I have to remember that everyday.


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