Lay awake most of the night

I feel a bit of a moaner as lots of you guys in a much worse situation than I am at the moment but I lay awake most of the night worrying about the journey Ben and I are beginning. I moved beds to have a good sob as didn't want Ben to wake. I lay feeling so sorry for him, what he has already lost and what he will have to face in the future, it all feels so hopeless and I am dreading it. Have a builder here at the moment and keep wondering if I should mention about installing a wet room but don't want Ben to hear as he is in denial, it is so so hard. Sorry for the rant but needed to get it off my chest, thanks for listening. K xx

19 Replies

  • Oh Katiebow, if you knew how many tears the rest of us have shed, you would not be feeling so guilty about ranting to us. Of course, you are feeling that horrible hopelessness, that we ALL spend every day going through, the fear of the future, the dread of what is happening now and what it will be like tomorrow. I think, in some ways, the first few months are the worst, in this respect. Unfortunately, you kind of get use to what is happening, tomorrow is not so daunting, because it's already arrived!

    Regarding your bathroom, I am going to put my salesmanship hat on now! "Isn't time it was upgraded,! those tiles must be out of date! wouldn't it be nice, as you have a builder in, to have the bathroom done! Why don't we have a wet room, neither of us is getting any younger, can't get out of the bath so easily! It's all the rage at the moment!!!" We are just about to have our En-suite done, fed up of trying to shower him in the small space we have now and it's not very safe, the wall will only allow one hand rail, in an inconvenient place, so all walls will have to be re-inforced! There are showers trays made now that can be put into most bathrooms, so making them into a wet room. You don't have to build a special room anymore! I'm having loads of grab rails put in, to make them a feature, rather than a need! I'm sure you can find a way of selling this to your husband, despite his denial!!! Tour some of the bathroom showrooms near you, try to speak to a saleman, before they come out to the house, so you can tell him about your husband and his needs and of course the denial. Any saleman worth his corn, will be able to help and deal with your needs sensitively. Best of luck!

    Katie, what we are going through is extremely hard, don't get cross with yourself, you are coping very well, how do I know? Because you CAN come on here and rant, you are surviving, Ben is well and being cared for. All that is down to you! So well done! OK, you cry sometimes, we all do, give your self times and places to go and have a good cry. It's needed! Most of all, try, try very hard, to just think about today's challanges, they are hard enough to cope with, without worrying about tomorrow's! Remember, by the time they come around, you will be much more use to this caring lark!!!

    Lots of love


  • Hi Heady, firstly thanks for the words of encouragement. Regards the bathroom and en suite, they were both referbished 2 years ago before we were in this situation. I spoke to the PSP nurse a month ago regarding what is best in place sooner rather than later and told her that it would be very difficult to install stairlift due to shape of staircase, she said doesn't recommend stair lifts and best to have everything downstairs if possible. Our house would lend itself to that and could pinch part of the integral garage for a wet room, just got to have the nerve and right words to convey this to Ben. help!

  • OK Katie, plan B!!! First, I am afraid that not having the nerve to do something, went out the window, the minute this Carer's role was thrust upon you!!! And yes, I KNOW how hard that this. My husband is an only child, a successful business, oh, and a male(!!!), so I have never known how to make any decision, they have all been wrong etc.etc.etc!!! Well, that suitation had to change quickly, he hates it, kicks and screams occassionally, but generally has to accept it now!!! So will Ben!

    How near needing a wet room, are you? This evil disease takes its time. S was diagnosed two years ago, I thought at the time, had to rush to get the bathroom changed. The re-fit starts in two weeks time! It would have been nicer if it had been done a couple of months ago, but by no means desperate yet. Probably, could go on for a while, like we are, but with me having to help. I am hoping, with the new shower, he will get a bit of independence back! So your decsion may be able to keep on hold. If not, well, you have no choice, but to take the bull by the horns and tell him what is GOING to happen!!! Being PC, is not option, it feeling terrible making arrangements without your husband, or without them having a say.

    Until you talk to him, you will never know, if he even against the wet room. His denial, maybe, him trying to protect you. If you have an integral garage, can part of it be made into something else, that he would like to see in your home? Not only have you got to learn to have the nerve to speak up, but to be a bit devious as well! Not something that sits easily with us females(!!!)

    Over to you - best of luck. Let me know how you are doing, we are all supporting you all the way!

    Lots of love


  • Katiebow,

    Heady is so right. Lots of tears, lots of anger, and lots of "this is so unfair!" Then you take on another day.

    We haven't had to redo the whole bathroom yet, just minor changes...shower chair, hand rails in shower and by the commode. We do already have a walk-in shower so that is very helpful. It took a bit of convincing for my husband to have those little changes, now he's very glad we did. Getting information on how to redo your bathroom I think will be a great help for you, and like Heady says, make it into "just a bathroom remodel" cause you want something different. If that doesn't work, than just small steps at a time. Some days my husbands understands why things are happening as they are, and some days he doesn't understand at all. Each day is different, sometimes each hour of the day is different. This roller coaster ride is the hardest part for me, and probably for my husband too. Take one day at a time, and "baby steps" if you have to. And never feel like you need to apologize for any of your feelings here, we all have them at one time or another!!

    One day at a time!


  • Dear Katiebow, a day at a time, don't worry about things that have not happened yet, we are powerless over them, you will get through this and this site is a great comfort, thinking of you stay strong you are doing well.

  • Katiebow, take it from me, the guys and gals on here are amazing and you NEVER have to feel like you're being a bit of a "moaner" We are all on here to share the good and the bad days, to rant and rage, to laugh inappropriately and to gain strength from the support and love you get from everyone on this site.

    I agree with Heady, I'd get the "sales head" on and go for the new bathroom just as she's suggested. You might as well get the disruption out of the way whilst you can!

    Keep talking to us all and we'll all be here for you.

    Kate xx

  • Don't apologize. We have all been there. It is all so sad, and it feels unrelenting - because it is. It's all so exhausting. Really, my heart aches for you. We have lost so many younger friends and family to terrible diseases, mental illness, sudden heart attacks and accidents, though, I do count my blessings when I see my guy smile and know that at least we have today together. No one is promised more. Hang in there, Katie. Cry when you want to and rant here whenever you need. we are all in this together. love and peace, Easterncedar

  • Dear Katiebow, you have had some some lovely replies all of which make great sense to me as someone who has one through to the end what you are going through. At the time I said to myself: "ok, this isn' t what Roisin and I had in mind for our years following retirement, it's different; so what? This is our life now and we can make the most of it, together." The only difference between you and me - and it seems a big one on the surface - is your belief that Ben is in denial. Is he really in denial, or is he trying to hide somethng from you? Roisin was in denial for about a year; that is to say, she denied that she had a serious neurological disease but there was no way either of us could deny her falls and her deteriorating vision. Having said that, I believe Heady's suggestion may be a good solution, even if Ben sees through it!

    Best wishes from Christopher.

  • Hi Barnacle, thanks for your reply, you mentioned about the denial. I think that Ben does really know that he has PSP but actually said that he can't ever think to himself that he won't get better, can't blame him for that as he thinks that it is such a hopeless situation if you don't have some hope to cling onto. I hate this situation it is so cruel. Thanks Katie

  • Thankyou for all of your comments and support, it certainly helps to clear your thoughts and know in which direction to how albeit a sad and lonely journey. So much info on this four that must start to write all the useful nits down before I forget! Thanks again. Katie

  • Hi Katie,

    After reading your post it felt like I had written it myself, I am experiencing exactly the same feelings as you and my husband is also in denial. So much so that he has threatened to sue the doctors for misdiagnosis! It's so very heartbreaking to see, you feel so helpless and worried about what the future will hold when all you want to do is make this awful disease go away. I agree that taking one day at a time is the only option, try to make him laugh and enjoy the closeness you share!

    It is reassuring to know that the wonderful people on this site are always there when you need a chat or just to have a moan!

    So take care Katie, I really feel for you, it is all so very sad, keep on being strong for him, he needs you more than ever now and would be lost without your love and support....

    Sending much love....Pat

  • i also was in denial and mad at everyone. why my wife i ask. A saint of sorts now age 67 and so young and pretty looking. we started going back to the cathloic church. We get a lot of help from freinds and much love. the said thing is after she lost her job in 2010 she had multi level cervical fusion. Then a year later she found a toumor in her left breast. Short time later 2011 the big bomb she found out ater three doctors PSP grabs us. The rest hast been pure hell. And now the real bad stuff is starting. SO when she is in a funk i hold her and tell her we will be back to gether soon in the kindom of heaven. She then is a ease. I hve only one choice to get us both through this mopst trying thing i have ever encounterd. So get close to the Lord. Our local preist came out the other day to visit. You know what he told my wife, dying is not such a bad thing since you will spend the rest of time in the kindom of heaven. So when she has anightmare or a crying jag, i just wrap my arms around her hold her till she quits crying. I love you both and as akways you will be in my prayers. Norm and Elaine sw florida

  • in our case , on reflection I wish we had bitten the bullet and not done things a little at a time .

    We both struggled John with his PArkinsons and myself support , handling , almost carrying him until every part of me hurt

    although I still encourage John to do as much for himself which he does over and above we now have in place all the aids and alterations sorted to keep us both safe .

    little by little we gathered frames grab rails all sorts of gadgets to help us cope with toileting at our own expense but once we had an OT things change rapidly and the rest is history

    all thanks to OT , D Nurse ,

  • Katie, you are going to go through different stages as far as feelings are concerned with PSP. I have been through the tears for what Malc is and will suffer and come out the other side trying my hardest to make the most of the good days and to have some lovely memories for both of us. It is so hard not knowing what is around the corner or when things will go downhill so I try my best not to think about it and take the positive side of seizing the day and doing my best - which is not always appreciated by Malc, but I know it is the condition that causes his downside and not the guy I knew.

    Regarding the wet room, be it in the garage or the bathroom, if you are in the UK I believe you can claim for a disability grant to help with things like this, you social services can help with this.

    Dont worry about ranting, we all want and need to at times. So many good things have been put in place for us in the last month that at present I am feeling much more positcive and with the OT coming out next week to discuss respite/home sitters so that I can have me time away from everything - even for a few hours things are looking up at the moment. I still plan events further down the year as I find it has a positive effect on Malc, if he can't do it later on sobeit. You take care and yell/share as you need to, no-one is going to berate you for that. x

  • Yes my husband is in denial it is hard, this site has been wonderful, everyone is so lovely, it is hard Katie, but you will find the words to make Ben understand, I am sure the OT can help with the wet room, we moved last year into a bungalow which had a wet room, after George's many fall, we had grab rails fitted, also the OT got us a plastic wheelchair which George likes.

    I know how you feel as do others I felt really low today and sad, my daughter said she also did not sleep last night, thinking of her dad.

    Katie just take one day at a time.

    Yvonne xxxxxxxx

  • It is quite humbling reading every bodies comments, helping to point you in the right direction. Thanks for all of your support, funny how some days you feel you can't cope and the next you are ready to fight the day and get on with things. Funny old life eh!!!

  • Hi Katie, it would nice to know which days are going to be the bad ones, so we could both stay in bed and forget the world!!!

    Lots of love


  • hi katie bow hows it going matey ok i hope don't let it get you down cause its no good two of you being ill is it mate just take each day as it comes and don't worry I know its easy said but while you are worrying about it the psp still goes on so do try

    and set sometime for yourself and relax mate peter jones queensland Australia psp sufferer take care mate

  • I'm in a more fortunate place as my husband has never been in denial. It must be even harder for you. You mentioned your sadness at what your husband has already lost and your anxiety over what he has to face in the future. I know exactly where you are. I'm there often. I mentioned this to a councillor and she told me there is such a thing as 'grieving in advance.' I had never thought of it like that. I realised that I had done that with both my parents, too. I wonder if you're grieving in advance.' I found it helped when I realised that. I hope this helps you, too. Hang on in there. You're not alone. Love. Rookie.

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