What do I do????

S is being a pain!!.,. Just for a change.

Eating again is rulings our lives.  We lurch from one meal to the next, with very little time between.  Some, no most, days, he always has food and drinks lined up on his table.  I try and help.  Sometimes he lets me, others I get pushed away. Each meal takes at least 1,1/2 hours, on a good days. Evening meals at least three hours.  Hopefully, I will have Carers coming  in to put  him to bed, what time do you suggest I get a call, 12.00, when I know he will be finished!!  He is still can eat all foods.

I arranged with him, we would go out after lunch today.  You have never seen a man eat cheese on toast so slowly.  I had cut it up into tiny pieces.  Wouldn't let me get involved.  Then finally got him ready, absolutely no help.  Getting him into the car and out the other end, was nearly impossible, thought we were going to end up on the floor several times. Also discovered, half his lunch was still in his mouth!!!

Yet he wanted to go. Even on the way home, I asked if he would prefer not to go out again, he indicated that he wants to go out,. So WHY, WHY OH WHY, doesn't he do anything to show it.  Simple things, lifting his foot to put his shoes, something he can do, the odd smile to show enjoyment.  I really can't do this anymore, the fight is finally draining out of me.  If he can't/won't show, or indicate that something is giving him pleasure, what's the point in doing it.  I am finding it so hard, loading and unloading the  damn wheelchair, then it's a struggle to get him in it.  Yet, how on earth am I meant to stay indoors with him for the rest of the time left.  I WANT to go out with my husband! I know I can go out on my days off, but that's not my idea of fun.  I want S with me!!!

I suppose I know our days are numbered and don't want to spend them arguing or fighting, no, i would love to spend them doing just that. I just want S back, he is just a body now, that I have to feed, clean and hulk around.  This is a very silly game and I am totally bored with it now and want it finished and S come back in from what ever he has be up to!

WHAT DO I DO????

Lots of love

Heady

Ps, they have been playing silly buggars with this site again.  Can't they just leave it alone for a little bit!!!

55 Replies

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  • Heady oh dear, it is so horrible when you do things for them, and they are so miserable, they don't talk, even when you try so hard.  George lets us feed him, he never wants to go out, so Heady you are looking cry S wants to go out.  George will not eat lunch, so I do t force him too, his evening meal, soft diet, we have started to feed him, smaller spoon fulls, he does not drink very much because of the chocking.

    Heady 8 o'clock is a good time for them to put S to bed, George goes that time, and I get some time for me.

    It seems like this is a way of life, same things everyday, it is so boring, we tend to say in most days, George won't even sit in the garden.  I think if you did a poll asking who would like there other halfs back, it would shout out the roof, Heady we can only take one day at the time, and try to enjoy what we have got, anything could be around the corner.

    We went to the hospital today, I felt so sorry for him, they really pulled him about, he was in so much pain, I felt him I was the mother and him my child.

    Heady hopefully you will get some rest bite in June so things will look up a bit, this is a horrible journey we are on.  Sending you a massive hug .  Yvonne xxxxx

  • Thanks Yvonne, S is off to hospice today, so I will get a small break.  My carpets are going down in the new hall, so that's soon thing to look forward to, just wish I had someone to share it all with!!!

    Thanks for the hug, need loads today!

    Lots of love

    Heady

  • Add a hug from me as well, and to Yvonne too!

  • It's amazing how often someone here posts exactly what I'm going through as I'm about to lose my cool over it.  Thanks, Heady!  Getting to bed is becoming a fight every night, so I just read him your post, which didn't make him happy, but may have some effect on his trying to climb out of bed, now that he's in it.  Such a Taurus I have here, stubborn and hard to shift! argh!  Nope, there he goes!

  • Hi EC, yes, I often think about everyone, when I am struggling,  knowing someone will be going through exactly the same! A very depressing thought.  All these lives wasted because of this £&@£&&@ illness!  Still a brand new day, up at silly o'clock, S has hospice, but before that, his Carers are here, then the district nurse comes to give him his regular enema! I am exhausted by the time he leaves!

    Lots of love

    Heady

  • Oh Heady darling, you're not going to like hearing this, but get your man a PEG.  You'll both be so much better off.   I just came in from leading my monthly support group where one of the men just announced he had a PEG inserted a couple of weeks ago.   He was taking 3-4 hours to eat a single meal.  His carer (his sister) was at her wits end, as she would have to help him with meals.  They both agreed that the PEG is absolutely awesome.  He is getting his 4 cans of feed during the night, just like my wife does.   And since he is still able to swallow fairly well, he supplements with regular food if he chooses.

    And what about this wheelchair?  What kind do you have?  How big is S?   You might look into getting a "transport wheelchair".  They weigh less than 20 pounds (not sure how many stones that would be).   I take my wife in one everywhere we go.   She was never able to wheel herself around anyway.   And they are fairly inexpensive.   One of them I have is similar to this one: incontinenceproductsplus.co...

    On this model, you can push a button on each of the big wheels and they pop right off for storage.   That makes the chair into more of a transport chair and super light.   But if you're going longer distances and think you need the bigger wheels, then you have that option too.  I've taken Kim on several cruises using this one.  It's ideal as we can slip the big wheels under the bed in our cabin and then can easily maneuver down the narrow isles on the cruise ship.   And when we go onshore to sightsee, I pop the big wheels back on.   Oh how I miss cruising with my sweetie.  Our last cruise was over 2 years ago when we went to the Panama Canal.

    Take care and give the PEG some serious thought.

    Love you!   Ketchupman

  • I am aware, we are not far away from this decision.  S's last indication was a very firm thumbs down.

    As for the wheelchair, it's what our dear NHS gave me.  Think they are touting for business, the heavier it is, more likely I will need their "wonderful" care sooner rather than later! Best deterrent for not getting ill, the thought of putting myself into their hands!!!

    Lots of love

    Heady

  • Hello Heady. 

    I feel your pain and your frustration. I changed my husbands wheelchair to a Moonlight Breezy that weighs 17kg so lighter to push and lift.

    I am in the process of getting a mobility car with a hoist to lift the chair in and out of the boot and a swirly seat to get hubby in and out of the passenger seat.

    Not sure what Country you reside but mobility cars are subsidized by the Government in the UK, I can tell you more if applicable.

    Each day brings so many challenges. 

    I know how we wish that we could turn the clocks back, to being well and happy spouses, but it is not going to happen and this awful journey is only going one-way.

    Try to focus on changing how to use your free time, because you will have a different life one day, maybe practice what that might be like?

    Not sure if this will help but take care and be kind to yourself.

    D0ttie L0ttie

  • Getting another car, is my next challange! Have got a day off today, so have several things planned.  Whether I do any of them, is another matter!!!

    Lots of love

    Heady

  • Are you in the UK?

  • Know how you feel, Heady. Chris isn't at the same stage but does the " blanking me " and it drives me mad. I know I over-react. I think it is because it makes me feel like nothing. Maybe he wants me to know how he feels.

    Yes. I want my Chris back. We always talked so much. Its too much to bear sometimes.

    Love and hugs, Jean x

  • There are lots of evil things with this £&@& disease, but the loneliness is one of the worst!  Especially late at night, when you can't even phone someone for a moan!

    Lots of love

    Heady 

  • Hello Heady,Exactly the same here.With the help of 2 carers (I need 2 because D tries to control the car)He undid his seat belt then tried to take the gear stick went for the hand brake so there are 2 carers fully occupied keeping him safe and us.I drove to a beautiful park 10 miles away so not a long drive.He took ages to get out and into the wheel chair.The promise of an icecream finally got him in.I don't know how much sight he has left but stunning banks of flowers had no reaction,Squirrels crossing just in front had no reaction from him  or ducks.The journey home was a repeat performance back home he wanted bed and then threatened to punch the lovely carer trying to make him comfortable.After his rest I asked if it was good to get out for a while and I got the thumb down response.One carer thinks he did enjoy but next week my sitter hours will be used to get me away.Seriously thinking of the peg but frightened he will fiddle like he does with everything and hurt himself.

    This hasn't helped you Heady but if you have any good ideas please share!Px

  • My husband is a serious fiddler and I was very worried about the PEG but I've manage to prevent him pulling on it. I feed with a syringe at the moment and I give him something to fiddle with while I am doing it.  When not feeding, I tuck it in the waist of his trousers or if in bed, under his night clothes.  Don't let fiddling put you off.  So far the advantages have far out weighed the disadvantages.

    X

  • A bit of clothing will be no challange for S.  Dread to think what I would have to hide it under!!!

    Lots of love

    Heady

  • Mums peg has a solid plastic disc within the stomach to hold it in place and I have been assured it is impossible to pull out through the hole ! So I allow the fiddling now as I know little damage can be done! Although I do tape 'Sid' (as its been named) up onto mums stomach out of the way. She's also not opened up the valve again after soaking herself in stomach juices the last time! So generally we are PEG happy ! 

  • Colin fiddled with his near the skin and made it quite red. He also scratched his skin but didn't break it.  When I took him to the day centre at the hospice, they asked about the PEG and I told them he had been fiddling and made the area red.  When I went to collect him a few hours later they said they thought it was infected as it was tracking across his stomach. They took a swab and sent a volunteer to the hospital with it.  I told them ithe tracking was a mark he had made, not infection spreading but they said they had to make sure.

    Of course it came back clear.  

    X

  • Haha I'm glad it came back clear but you sometimes have to wonder why they don't declare the carers the PSP experts as I think we all have examples of when we've known what's best for our loved ones! Ah ok I hope Colin has adjusted to it now. Mum is going through a scratching and picking phase. Has scans and cuts all over her from it ! She has a lovely one on her forehead she keeps picking that looks pretty gross .. Can't get her to wear mittens though or pop a plaster on her forehead! Ha! Such a quirky condition isn't it X 

  • It certainly is!

    X

  • Have you tried aqueous cream

    We smother dad in it daily

    You can wash with it too

    He still itches n scratches though X 

  • S invented fiddling.  Ended up in A & E, with his Catether, because he kept playing with it.  Know he will do exactly the same with a peg. Think he does as well, hence he doesn't want one, at the moment. I think I will just have to accept, that going out, is going to be a thing from the past.

    Lots of love

    Heady

  • Hi it does seem to be as you say keep feeding and lugging around because you want to go out its a horrible existance and the effort it all takes just to get out the door.  Its my birthday tomorrow I have 4 hours off in the morning, I dont think J has any intentions in getting me a present LOL what a life xxxx

  • Oh Heady, everything you have said, I and probably lots here have been/are going through.  When things get too much it's time to think,"How can I make this better".  It sounds as if he has got to a softer food stage. C stopped eating toast a very long time before he went to liquidised meals. He found it difficult to swallow anything that wasn't smooth. It didn't matter how small it was. Creamy mashed potato with finely grated cheese beaten into it it so it melted went down a lot easier than toast or scrambled egg with breadcrumbs soaked in the egg before it's cooked.  Until he had the PEG, we were taking up to 2 hours every meal, with me feeding liquidised food, but I accepted that's how long it takes but put the radio/TV on and multi tasked.

    Decide what to do about the car situation now because there will be a day when he can't get in or out one day.  With C that day came at the crematorium after my dad's funeral.  Getting into the large black limo took him 20 minutes with all the mourners watching him struggle, with me coaxing and two burly undertakers holding him.

    I have written before that our Granson once asked me if grandad was turning back into a baby.  I now have an 11 and a half stone 5"11 "baby" who has the mind of an adult and doesn't smil.  We were going to a U3A meeting yesterday. I'd been looking forward to it for a month as there was a talk on barn owls. I'd left him in bed during the morning so I could get his trousers on before we went out (like a baby, he has to have trousers put on lying down).  I was rolling him with his pants nearly in position when his rear end "exploded", the consistency of a breast fed baby.  It went over me, the bed, the floor, up to the middle of his back and down to the half raised pants and trousers.  It took me over and hour to clean him up and then nearly another to sort out the washing, rinsing everything off first.  Needless to say we didn't get to the meeting.  

    Why I'm telling you this Heady is you asked what do I do?  How you described your life now was mine about 3 years ago and it hasn't got better.  I've said, I can't do this anymore, how am I going to cope, I'll be dead before he is at this rate and many similar things but I know in my heart I will carry on as long as physically possible.  Some days I feel like you did 8 hours ago and others, when the sun is shining, I just get on with it knowing C must be suffering inside and hating every minute too. I'm sure he does still like going out and meeting friends by his relaxed demeanour but he doesn't show it.  The only way he can show emotion now is to allow the tears to silently roll down his face like he does when I'm cleaning him up after an "accident".

    I hope the sun is shining on you both today and am sending you a great big hug.

    X💐

  • NannaB, this post is full of support and compassion for Heady and I'm sure she will find it so. Scares the life out of me to read what is ahead of me. It seems I'm only at the beginning of this horrible journey and Ben usually still says he wants to go out. The problem is me, I get very concerned taking him to anywhere that will challenge me getting to certain places and I try to avoid putting us into tricky situations. Should I be more brave or am I being overcautious. I try to get him out most days but he sometimes needs encouraging to do so these. He won't go into a wheelchair or use a walker even though advised to try them by the OT, think it would be easier if he did.   Kate Xxx

  • Life is much easier, and my guy is safer now he will go out in the wheelchair. We had to start with a cane, a few of which he broke, and work our way to this point. He still can do some supported walking and now the job is to get him to do as much of that as he can!

  • It would be easier with a wheelchair but I can understand his reluctance. C would push his so it doubled as a walker but if we had to get somewhere in a hurry, he would get in.  We used to go on coach trips and sometimes it was a job getting him back to the coach on time. On one occasion we were on the coach with a friend and his wife. He was diagnosed with motor neurones the same month as Colin and refused to use a wheel chair.  It was he who ended up sitting in Colin's wheelchair so the following week, told his wife to get one.

    Before going anywhere I'm not sure of with C, I either go on my own first when he has a sitter, and check it out or if a garden or NT place, look it up on the Internet and sometimes phone them.  It takes me nearly an hour to get him out but it's worth it.

    X

  • Yes scares my too, what's to come and how am I to cope.F has agreed to a wheelchair. I feel like I need L plates! How do I push 14tone up/down hill or negotiate kerbs. We can't only go out it its flat. And then what do you do when there is no disable toilet, I get so worried if he goes in the gents alone. The future is so scary and so lonely 

    Lots of love

    Debbie xx

  • Most places have disabled toilets, Malls and garden centre's are great. Warm and dry, flat and have Loos (Mr Ketchupman!). Don't worry about the 'L' plates, in this PC world of ours, most people will help, or get out of the way. Don't want to be thought as uncaring or phobic about disabled people.  I love it, always worth a quiet giggle, people watching!!!

    Lots of love

    Heady

  • Debbie you are obviously in more or less the same position as we are, bit like no mans land, having to learn the 'new normal' and navigate through this minefield. Off to see what AIDS are available to help Ben as he is at the moment, a day out to look forward to. K xx

  • Your perseverance is inspirational, NannaB.  It does make me think how much we could do for the world if all this strength and effort and cleverness could be channeled outward! But our small worlds are part of the whole, so I suppose the small good is part of the larger balance anyway.  I know you help many many of us with your shared wisdom.  Thanks, more than I can say, ec

  • NannB,

    Your last paragraph is exactly how I feel.  It is so sad and my eyes well up as I type this.  Thank you for sharing what I'm going through too.  I feel so selfish when I'm frustrated.  But it's the hardest thing I've ever done.  

    Thank you.

  • Hi Cuttercat, I hope this is the hardest think we ever have to do.  I feel bad when I get irritated but make sure I tell C that it is the situation I'm  angry with, not him.  None of us are perfect so we are going to lose it sometimes. It's good we can let off steam here.

    Take care.

    X

  • I also feel bad and don't like the person I can be when I react.

    I always after tell Chris that its PSP I'm raging at.  I know its not him.

    Chris is in respite at the hospice and I visited him today. He held my hand and said he loved me and maintained eye contact. It was like old days. Of course I felt bad leaving him but he seemed fine with me going to visit our son.

    I hang on to these moments.

    love, Jean x

  • That's so good you saw a bit of the old Chris.  Go away, relax and enjoy the break.

    It was next Wednesday we are meeting isn't it?  I forgot to write it down and can't find where we discussed it.  I went today and there were several new folk there.

    Looking forward to hearing about the wonderful time you have had with your son.

    See you soon.

    Love Bev

    X

  • Yes. Next Weds. Usual time and place. You can tell me about the new ones !!

    love, Jean x

  • 😀 ☕️ x

  • So sorry I didn't make it to the meeting Bev.  I had been so looking forward to seeing you, and maybe Jean too, but I have had my sister from America here for a few days and she is going back this morning.  It was D's hospice day yesterday so our only chance to do something together before she goes.  We went to Sissinghurst. It was lovely and a beautiful, memorable day.

    Hope it was a good meeting and do hope we can meet up soon.

    Love

    Vicki

  • Hi Vicki, Sissinghurst, I love it.

    As Jean couldn't make the meeting, we are meeting next week at 11am in the restaurent of the nursery.  Would you be able to join us?  I'm not taking C as I don't want to cancel the sitter.

    Do you take D to the hospice or does he have transport? You may feel it's a bit too much travelling if you have to come this way first. It takes me half an hour to get there from here.

    If you can't make next Wednesday, and you do bring D, we could always meet at ours, Nottcuts or anywhere you like.

    Hope to see you soon.

    Love Bev

    X

  • Yes please!  Could you pm me with where you are meeting.  I will be taking D to Hospice for 10.30.

    V x

  • We'll be where the group meets, hopefully at 11am.  I want to get there earlier to have a look round first and I have to be home by 2.30, otherwise I would have suggested going in one car.

    Looking forward to seeing you next week......all being well!

    X

  • That's great. I'll be there.

  • Oh my goodness Heady I do feel you, I don't have the feeding problems yet but find the lack of emotion so difficult to deal with. Ben is a big Leicester City fan and the last two matches they played were full of excitement and emotion. On Sunday  I prepared luxury sandwiches, opened the wine and sat there waiting for Ben to want to get out of bed. He finally arose 5 minutes before the start, sat in his chair and said absolutely nothing all through the match. I was so upset at the lack of emotion when I know that he thoroughly enjoyed the match. If he can't show emotion for this then I stand no chance for other activities that we used to enjoy. It is so cruel the way that PSP steadily robs you of the person you chose to spend your life with but you can't give up on them when non of this is their fault. The expletives to discribe this disease don't even exist, think I'll have to invent some. Try to stay strong Heady, we are here to try to help and support you through this long and horrible journey. Big hugs, Kate xxxxx

  • Heady sorry to read your difficulties.  Though upsetting, it may be getting near the time for considering a nursing home before you really do burn out and hurt yourself, thus forcing the hand of the "professionals".  

    Margaret has now been in her nursing home for 3 weeks (how the time has flown), she has still not fully settled and they are still making mistakes,  I spend about 6 hrs a day by her bed helping feed her and taking her for walks, tell the home on arrival and they get her ready no need for me to haul her about.  I have almost got my sleep pattern back but still have waves of tiredness sneak up on me during the day but getting easier to cope.  M enjoys the time together as I do she looks upset when I go but she knows I will return, her smile still lights up.

    S is different as all PSP patients are but if he cannot help himself in aggravating you and putting himself in danger and not eating he needs to be helped more than you can on your own and with full home care available.  

    Please do not get yourself into the position that you hurt yourself or worse burn out.  I certainly would miss your words of wisdom.

    Lots of love to both of you Tim

  • Three weeks already. Time does fly. Your situation sounds so good, Tim, really, as far as can be, with M so close and cared for and you able to share her day. Glad to know you are getting some sleep. Best, ec

  • Good to hear things are working out, Tim. I'm sure its encouraging to those worrying about Care.

    love, Jean x

  • Awe Heady

    I do feel for you and totally get you!

    The feeding process is soooo long and tiresome and I understand my dad mostly refuses help. 

    Going out well now that is tricky, we only go to the hospice once a week for music therapy, they collect dad and return him but the whole getting ready process is rather knackering and then you question did dad enjoy that, hard to say! We try to get dad to a Parkinson's exercise class once a week, again draining getting ready and coming back!

    We should get out more but quite frankly it's too dam hard and the toilet situation, well quite frankly, that doesn't bear thinking about! 

    I'm sick of this too, but let's remember this is a million trillion times worse for the Psp patient! They don't want this as much as we don't!! I just want this all to end, I sometimes (actually frequently) wonder how much longer I can cope and do you know what, my fear is, this could carry on for years yet.....oh s**t now that is beyond depressing!

    Big hugs, chin up, and remember my most favourite tip drink 🍷

    ❤️ X 

  • Heady, could you manage to get a few days respite? It sounds as if you need it. I know it is unlikely, but maybe speaking to your contact at the neurology team might help. As I see it, the worst part of this disease for us, is losing the person we promised to spend the rest of our life with. We see glimpses of that person, which is reasurring, but also makes us grieve for the loss of the full person and personality. My husband had a very mobile face and a lovely smile. Sometimes I still see that, like just now when I gave him a hug and he wouldn't let me go, he actually laughed. Other times, its just a frowning mask. I know I am grieving all the time. Today is our eldest daughter's birthday and we remembered taking her home from the hospital. Happy memories which make me sad now thinking of all that we have lost. On the other hand, we have had 48 happy years together so I can't grumble. I think a lot of the problems are made worse by exhaustion and exasperation. You are ahead of me with your struggles.You have always been helpful with advice and support. Do try to get some help, you deserve it. X

  • Heady  can't help you with the  food  but on the  car  side  bite the bullet  and  and get a car with a ramp and wheel chair  space   and do it sooner rather than later . It is almost inevitable that  S will not  be able to transfer   one  day . Last  year  I got  a wheelchair  access  car. V could  still just  about  transfer  from  wheel chair to  front  seat  and then one  day  she couldn't  .So be  prepared  - even when she  still could  get in the  front   I could  just  wheel the  wheel chair in the  back - no folding  and  lifting . Make life easier  for  yourself . I now run  around  all over the  place  with V in the  back . She  moans  like hell  saying  it is  bumpy  blah blah  blah . But its sure better than  not  going out  and so much easier . 

  • Hello Heady

    Gosh its tough isn't it.

    You are one of the very knowledgeable people here so I will say little except... Gosh been there and have wanted it all to end. Exhaustion and frustration.

    This thing which I describe as loss of initiative.  Some spark gone out where the other person shows appreciation, enjoyment or expresses a want.  It leaves a flatness which is hard for me.  I do my very best to make something really nice and the response is flat.  I just have to keep telling myself that that is the way it is.

    Carers for a period in the day sounds appropriate too.  Maybe to do a meal?

  • Oh Heady I know what you're going through.  It is so hard.

  • Hi Heady. Sorry to read your message. I found the easiest thing to do when in that situation was to blame it all on PSP. It really is the illness and not stuberness on his part. God knows what goes on In his mind, everything is slow and the body does no to what he is told. NOT EASY for both of you. Have courage, lots of hugs Maddy xx

  • Reading your post brought back memories - have tears in my eyes reading this.  I know exactly how you feel.  My brother was the same way with eating.  When the PEG was suggested he strongly objected and let me know that that was the only thing he had left - to taste food.  Broke my heart but so frustrating at the same time.  

    Sending you love.

  • Heady, Sounds like you have had it. Know the feeling. D has not let me sleep for the last 2 nights again. It takes him 1 1/2 hours to get dressed, unless I help him and my back is killing me along with one shoulder. He sometimes understands and sometimes not. Want to run away or at least get someone to help me. Get 2 hours, 3 times a week and feel like a walking zombi. Today he feel trying to sit in a chair. Broke a table, fortunately except for a scratch on his back and a dent on his back from another piece of furniture he seems ok. HUGH HUG AND LOTS OF LOVE FROM A FELLOW SUFFERER WHO DOESN'T KNOW WHAT TO DO EITHER. I WANT HIM BACK THE WAY HE WAS.

    Audrey (Auddonz)

  • I know how you feel, Audrey. Its too painful for words.

    Love and hugs, Jean x

  • :(

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