Losing a loved one to PSP

So we talk about our loved ones new symtoms and how to take care of them. Do we ever speak about what is truly bothering us. What is truly bothering me is losing my best friend and love of 31 years, my wonderful, handsome, loving husband. Losing him in such a way that I never would have expected and never could have concieved of. He doesnt listen too much any more and I think that is because he cant grasp much of what I am saying. When he pulls off his catheter for the third time in one night and I ask him why he is doing it he says, "I cant help it. When he picks up his thickened drink and pours it on the floor and I ask him why he did that he says, "I cant help it." I then yell at him and say of course you can help it what is wrong with you. Then he looks at me like he is afraid and I feel like crying. I don't cry because he gets so upset when I cry and he starts crying too. I feel so sorry for him and I want this awful disease to go away. I ask him what is wrong with him, but I know what is wrong with him, he has PSP. He is getting sicker eveyday and I am losing him and I am afraid and sad and angry. And there are times when I feel that I will not make it through this. I just want my husband back. There are times when I just lie in his arms and he holds me and for a moment I feel as though nothing is wrong and he is there caring for me and he is my strong husband again before PSP. Why does this disease have to steal our loved ones.

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  • Dear Judy

    How I feel for you. My husband and I are in the same position. For him the disease, which I did not know he had, worsened very quickly before it was officially diagnosed and he is now in a nursing home. At first he smiled when I came to visit, which I do every day. Now he just stares, or moans unhappily, and cries when I leave. The repetitive movements are sad to watch and although I used to read to him from his favourite magazines I think that now he cannot take in too much information so we just sit and hold hands. The Hospice doctor says he has deteriorated faster than she expected. I know that his mind can still function and I wonder what it must be like for him. He was such an active man and loved his garden. At least he is in no pain and I am thankful for that. I would be willing to stay home all day and hardly leave the house if only I could have him back here with me but that is not a practical possibility.

    Alexandra

  • Dear Alexandra,

    I worry that someday he may have to go to a nursing home. He does not want to go. I am fortunate in that I am young and fit. I am only 50 years old. Too young to be losing my lovely husband but at least able to still handle him physically. I agree with you regarding the pain or lack of pain and that must be the largest blessing of all. I am sorry that you have to go thru this and that he can not be with you.

    Love,

    Judy

  • Dear Judy, yes if you can then definitely try and keep him with you take care till the end. there is no better medicine than love. The more he is with family, at home, the better he will feel. nursing homes, immediately make them loose all hope. My father passed away a year and a half back to this. i was his caregiver, and though i was nine mths pregnant when he passed away, the best thing was that he was home with people he loved. try and keep things as normal for him. let him do whatever pleases him without reminding him about his condition. if its hard for us, imagine what it must be for him. my mother succumed to cancer and my dad do PSP> there is nothing more that i pray for now than good health till the end for all my loved ones.

  • Dear Judy

    I can't say how much your words touched me, I really do feel and understand your pain. I used to get frustrated with my dad when he'd had another fall in the home. At the time he could still communicate although quietly and only a few words and I'd say 'Dad what do you do when you want some help?' and he would say 'press the button' and I'd then say 'so why didn't you' and all he could say was 'I don't know'. I felt really bad shouting at him but it was my frustration with the condition that I was shouting at really, I knew my dad didn't know why he couldn't do it. This is a truly cruel disease for the person and families who have to see their loved ones in this way. My dad deteriorated fast before he passed away but he knew we were there with him all the way just like you are with your husband. Stay strong and know you are doing everything you can for him. My thoughts are with you

    Lesley

  • Dear Lesley,

    This helps me as I have often thought that Dave knew what he was doing but now I can see that this is all part of the disease and he is not trying to make me upset. Thank you for sharing. I am going to try to have more patience.

  • Judy, we have been married 49 years, and this is the longest we have been apart, five weeks, everything you mention i can feel the same, and then i am landed with the guilt feeling for getting cross (angry) with him for being the way he is. Have exactly the same trouble with the bell for help, although his hands are becoming rigid. Hopes were raised when a different Dr saw him and reckoned he has strong leg muscles and would have him out of his bed and in a chair, the most positive thing that ha been said. Then when i saw hubby sliding down the bed unable to sit up, back to the despair. Seems whatever PSP takes away, is never returned. Seems strange that we all take comfort in eachothers sad stories.

  • Dear Kay,

    I am also finding that when he Dave loses something he usually does not regain what he has lost. My husband too has strong legs but his legs get stuck and he also slides down the bed and it is almost impossible for me to get him into a sitting position because of the stiffness. It would be easier to work with him if he could follow my direction. I am finding from all of the responses that truly he can not follow directions or perhaps their brains just can not process much anymore. I hope that I will not dwell on the times that I yelled at him after he passes. That is a large fear of mine. I try to be extra loving to him now but the times that I yell make me feel guilty and awful. Take care of yourself.

    Love,

    Judy

  • Dear dear Judy, you are writing for me, we are in the same awful place,my heart goes out to you and all the others who are going through this heart rending time,my hubby went into a nursing home 8 weeks ago its taken away much of the hard work,but now I`m not there when he needs little things that only I know of, wiping his chin,making his pillows comfortable,holding his hand when he look sad. I visit for about 4 hours each day, but I hate leaving him,he`s still my precious love of 44years, a big hug to all of you,because word don`t always say what we would like to convey.

  • Hi Elli,

    I am sorry to hear that your husband has had to go into the nursing home. I am praying that I will be able to care for Dave until the end. I know what you mean about the little things that we do for them. He has mentioned to me that the caregiver who comes into help us does not wipe out his mouth after he eats like I do and other small things. It is difficult for him to tell me things and it takes almost an hour for him to convey things to me but we are still trying very hard to continue to communicate. I wish that he could still write or type but his fine motor skills are gone. He took care of my for so many years and I never thought that I would be caring for him. He was such a strong man. I do pray that your time left will be a blessed time for you both.

    Love,

    Judy

  • Hi Judy...I know exactly what you mean. I'm the same with my husband Frank. I have days where I scream at him because he isn't doing what I ask of him & I think I can't go on any longer then other days he's reasonably cooperative & things go ok. The other night in the early hours I woke from what must have been a deep sleep ( very rare for me ) to find him sitting on the end of the bed. After I jumped out of bed & asked him what he was doing he said he was going to work. Frank is 71 & retired early 12 years ago!!!!!! Once he was back in bed I couldn't get back to sleep so the next day was a bad day.

    Like you I want my lovely strong capable caring husband back but know that's not to be. I struggle to remember what life was like pre PSP.

    Take care & try to keep smiling it makes people wonder what you're up to !!!!!!!!

    Love Hazl xx

  • Hi Hazel,

    I know what you mean about not being able to get back to sleep. The adrenaline is running so high after trying to get them settled after you find them doing things that could get them in dangers way. I often never get back to sleep and my patience are terrible when I do not get my rest. I can not tell you how often I pray to get him back to the way he used to be. There are times when I have wonderful dreams about us when we were young and healthy and so much in love and then I wake and reach over for him and realize that he is changed. It can be so sad. Take care and I will keep smiling and thank you.

    Love,

    Judy

  • Thank you all for your messages and for your support. I cried as I read each one. I think it helps to know that I am not the only one who feels these things. It helps to know that I am not perfect but that I give him the best care that I can and that other lovely people have to struggle with the same things and try to do their best as well. My love and prayers to all of you!

  • Dear Judy,

    THANK YOU for sharing so openly and honestly about how you feel. I think it's hard enough losing my Mum to this dreadful condition but you opened my eyes to how much harder it must be for my Dad, losing his wife of 50+ years.

    take care xx

  • We first met when we were both an inoccent 15 years old. We became great friends for 49 years and had a wonderful marriage for 42 of these years. He has now been dead for 3 years and I still miss him terribly. I remember well the awful feeling while he was ill that he was there but at the same time he wasn't because he was not the same person. He was such a sunny natured person, nothing phased him. PSP changed all of this. It was very difficult for me to understand that his mood swings were not something he could help but were due to this terrible illness. I had to learn to take one day at a time and do my best to cope with whatever situation arose.

    I am so happy in my heart that I managed to muster up enough strenght of will to make his life as easy as possible during those awful times.

    It is truly an enormous consolation to me.

    Kind regards

    Lina

  • Thank you Lina for sharing. I met Dave early and we have been together since I was 18. I am hoping that I will feel ok after all of this. I wonder about that a lot.

    Love,

    Judy

  • Hi Judy I know just how you feel it is so hard no matter what you do my husband is now in a nursing home he is in a wheelchair and if i go out of his site he forgets im there sometimes i wonder what is going on in his head he seems setteled but how do you know ,as he cant tell me no matter how long i stay with him and i see him every day as soon as i leave him i feel so guilty. M

  • Hi Mary, I feel guilty when I leave the house and have a sitter come in for him. I actually miss him because he always went with me when he was able to get around better. I still try to get him out much of the time but when I go grocery shopping and such he just slows me down so he needs to stay home now. I feel guilty mostly over yelling at him for doing things that I thought he knew he was doing. It was helpful to hear from all of the other lovely ladies who are caring for their husband's or parents that they truly dont know what they are doing and that he doesnt mean to upset me. I will have more patience now and hopefully will not yell. He truly is like a large innocent child.

    LOVE,

    Judy

  • Hi, my husband was only diagnosed in January this year. I'm still trying to get to grips with the illness, so it was good to read all the comments. Some days I feel I can't cope, because he gets so angry because he's frustrated. Other days he's crying saying he's useless. The worse thing for him at the moment is that it has affected his vision. He has been registered severely sight impaired. Sometimes I feel he's being manipulative but from reading all the comments it probably isn't so. Thank you for your helpful comments. I agree it's like living through the loss before it happens. I know that it's no longer my dear husband. It's all right saying it's not the person. it's the illness, but that doesn't help on a bad day.

  • Hi Dorothy My husband has been through all your husband is going through at the moment he would cry for days he would be very angry with me but if someone came into the house he would be all smiles i found this very frustrating . He is now passed all his anger and crying all he does now is smile at everyone . Count to ten and treasure the goods days. M

  • Hi Dorothy my husband has recently been diagnosed with PSP ( 2 mths) and I am already feeling guilty of shouting at him when he sits on the edge of seats and nearly falls or when he does not look where he is walking and and then trips and would fall if I was not arming him. I am sad to hear it has taken your husbands sight, it is all so frustrating. I wonder how long I will be able to care for him at home as his needs become too much for me to manage.

    I am so glad I have found this site to be able to hear from others how they feel and be able to share thoughts. Keep your chin up!

  • someone said "football is a game of two halves" i think PSP can be the same. I came home elated from the nursing home yesterday, his speech was good, totally aware, wrote one answer in the crossword, held the drinking cup himself - I felt the PSP diagnosis must be wrong, Arrived for evening visit and found the demon PSP had been playing with us again and he had taken over , will i never learn?? He has been in the Care homefive days and when i leave him i feel like a mother leaving a child on first day of school..................................

  • Dear Kay,

    I know what you are saying. There are days when I believe that God is being merciful and that David is getting healed from this PSP as he does so well and can even speak three word sentences and I am amazed, but by the end of the day the PSP is back full force. It doesnt always make sense at all. I think that is why so many people write about the the good days and yes they are to be cherished.

  • Hi Judy - I am so sorry for what you are going through - we went through the same with my dad. He would pull out his feeding tube, pull out his catheter, be almost a bit aggresive and said the same thing 'I cant help it' - and if we got annoyed with him he would get upset. You could see in his eyes how awful it was for him. Dad died in Jan 2011 but really we lost him about 2 years ago when it really took hold. And even though he has gone and I know he is free of this I can still wake up in the middle of the night scared of what he must have gone through and how scared he must have been.

    I can remember vividly my mum saying to me that she lost her husband years ago as well, and that broke my heart. He tried sooo hard to still be there and it destryed him knowing he was no longer the 'provider' and one looking after us. He hated that I helped him go to the toilet, put his catheter back on for him, showered him, but I would rather I had done it than a stranger at times.

    Just show him you love him every day - give him lots of cuddles and love - look up the symptoms and that helps you deal with things he does that he cant help doing.

    Be strong for him, he is aware of everything that is going on, even if he doesnt respond. He's still in there somewhere :) x

  • Last night I was exhausted he pulled off his catheter and I did not yell. He was thrashing around much more than usualy so I decided I had to try to get some sleep so I went downstairs to the spare bedroom. It was about an hour of sleep later that I heard him walkiing around. I ran upstairs and he had shut his door. I opened it and came in and he was standing there with the most frightened look on his face with eyes wide open! I asked him what was wrong but he could not talk. I put him back to be and kissed him and he moaned. I slept in till 9:30 and he did too. The nights can be the worst but last night I did not get upset and I did not yell because I knew that he truly could not help it. Thanks for all fo the comments it helps to know we are not alone.

  • Dear Judy

    I could have written these words myself, nobody understands what it is like to loose your loving husband to this awful disease. I cried as i was reading your words. My husband at 63 was diagnosed in 2010, he has changed into a person I hardly recognise. He does not talk mostly he sits with his eyes shut or just stares into space. He is so rigid and needs help with mosy things. He has lost the ability to express emotion and forgets to say thank you when I help with his toileting and catheter. I also get so angry at times and then feel absolutely awful. This disease has stolen my life as well as his.

    There are no support groups in East Kent. It would be good to meet up with others who understand this disease and offer mutual support. I hope to attend the symposium run by PSP in Sptember.

    I do understand what it is like for you we always think that we are so alone in trying to get througheach day.

    My love to you

    Iris

  • Judy,

    You speak so many truths!!! It did make me cry but I suppose because you were so honest. I really respect that. I think some times it's so hard to tell yourself how you really feel because we're so used to not trying to shock anyone.

    I'm scared, angry and upset too.

    I think it's amazing that you can still connect with your husband in such a way that you somewhat put the illness to the back of your mind, and I also respect you for that as I find it hard to distinguish my dad from the illness.

    We're all here for you

    Hannah x

  • Thank you so much for sharing. I'm so glad I'm not the only one who gets angry and frustrated, and learning that perhaps my Mum isn't always aware of why she does things really helps. Thank you again. You don't have to be strong, there are others here to support you through this.

  • When my mum was dying, a few weeks ago, I was breaking my heart at the thought that I wouldn't be able to just get on the bed beside her for hugs any more. The next day, she gave me the biggest hug in the world.

    That's what I'm holding on to now; not the frustrations of 'why did you get up?' or 'why did you not ring the bell?'. We eventually made a joke of her 'escaping' or 'breaking free' from the chair or bed, because she just couldn't help it, or thought she could do stuff for herself, without bothering anyone- ending up in casualty of course!

    Judy, your husband is still there caring for you, it's just that he can't show it quite as he would have before PSP. It's an unbelievably awful disease and keeps challenging us; try not feel guilty as you struggle with it, we're all here with you.

    Fiona x

  • Dear Fiona, I am crying as I read your words. I am sorry that you lost your Mum. I think about losing Dave all of the time and I worry about so many things and I dont know what I will do without him. I will miss everything but I know that I will also feel a relief from all of the pain and the struggles for both of us. This is such an awful way to feel. My feelings are so ambilvalent at times, but mostly I feel the heartache of losing him. Thank you for your support.

    Love

    Judy

  • Dear Judy, I felt exactly the same way - I honestly couldn't comprehend how if I had told my Dad not to do something he would just do it a few seconds later. Understanding that other people do this, and not just my dad, has helped me come to terms with this better. This disease is so strange and cruel.

    Like you, I dream at night that my dad is well, or speak to him for the first second and think he's well, when he greets me in the way that he used to 'hi babes', but then I remember that he's ill, and I find it difficult to follow him further because his speech is so slurred.

    I am so sad that my dad has been stolen from me.

    My mum has chosen for dad to stay at home until the end. She is amazing, and I think that my dad is the luckiest person in the world to have her as a carer. Everyday she goes above and beyond.

    Look after yourself, Marisa x

  • Marisa, I am so glad that you mum has chosen to have your dad stay at home and I do know that if it is possible to do so that the PSP patient probably does better at home as long as the carer is able to physically handle the patient. I see so many older woman who struggle so much with their decison to place in a home as they are usually so much smaller than their husbands and also just do not have the strength and come to a point where they can not care for them safely any longer. I pray that this will not happen to me. I feel confident that I will be okay but I do worry about this at times. I too can say that hearing the comments from all of the others on this site has helped so much. I no longer feel so hard on myself because I now can see that I am not alone in my feelings and perhaps it is what we all go thru. Give you mum and dad a big hug for me.

    Love Judy

  • Hi Judy

    I know just what you are going through. I felt exactly the same with Ray. They cant help their actions, it is the illness and I know how frustrated and and angry it can be for a carer and the family and friend. Do whatever your conscience tells you to do and not what people think you ought to do. You know what is right for you both.

    My heart goes out to you and everyone with this dreadful disease. I have tears feeling all of your pain.

    There is light at the end of the long tunnel, and life does go on after PSP, I never thought there was. My dear husband passed in April 2010 aged 57 and is now at peace and in a better place.

    I will think of all of you when I go to church tonight and send up healing rays for all of you.

    Love Jenni XX

  • Dear Jenni,

    I am sorry to hear about the loss of your husband. He too like David was so young. I am glad that there is still life after PSP. Sometimes I feel like this will steal my will to go on. My daughter feels robbed of both her Mom and Dad as I used to do so many things with her and now I am so busy with Daddy. I worry about her but mostly pray for her. Thank you for your prayers and God Bless you.

    Love Judy

  • Wow! I am just 57 and the thought of passing away is just so wild, because I keep waking up to this find that this disease has not left me.

    I keep hoping for a miracle cure, but I know that miracles do not happen in real life.

    I can't even help with the most mundane things around here without being yelled at for doing something stupid (like getting up...).

    But mostly, I worry about not being there for my wife when I know that she needs me the most...

  • Oh Dear Brian,

    I have seen miracles in this lifetime. I too keep hoping and praying for one. I believe that hope is a powerful tool to keep us strong and to keep us going so pleae continue to hope every day HOPE. I am so sorry to hear that you get yelled at for mundane things. I will be more mindful not to do that to my hubby. I am guilty of doing just that telling him not to get up. Oh dear, we try so hard and dont always hit the mark do we? Take care of youself and know that we all care about you,

    Love,

    Judy

  • Hello all,

    In no particular response to anyone but after reading all of these comments I have been left in a flood of tears :

    ( My lovely dad sadly passed away from psp in January this year after fighting off two bouts of pneumonia. All off what everbody is saying is so exactly the same stuff we went through.

    We were lucky (not quite sure if lucky is really the right word) to get a 24 hour carer so this helped us massively. It made us feel like when we went to my mum & dads house we were going as children not careres(although we still done alot of stuff for my dad it meant that the 3 am calls didn't happen anymore)

    We used to go round between us everyday to see my dad and even in the last stages in hospital he was pleased to see us not that he could show it as he was very emotionaly 'dead' from apperance but you knew he was from the times when he could express his feelings and say 'all the better for seeing you' :)) And from the person you knew before PSP hit.

    Another smack in the face of the illness among all of the other ones. Talk about OK heres a really awfull illness and here you go you have it, take away everything, everything apart from the ability to know what is happening to you. The frightened look on his face was so upsetting :((

    I am sure I heard my dad saying he wanted to die on several occassions but as his speach was so bad I couldn't understand him. He was such a proud & active man for this to happen to him (or anyone) was just cruelty.

    Unfortunatley part off the illness is a complete lack of knowing you are doing something wrong. My dad would fight you almost to do something that he wasn't sipposed to do, like necking someones drink from the table or just trying to get up or push himself down the bed or chair trying to get up. It is hard but please try to be patient with the poor person who has been given this disease, they cannot help it, it's psp making them do this. Go into the the room next door and get a punch bag or something to realise anger & frustration!

    It is very very hard for patients and carers to live with PSP. Do as much as you can whilst it is still possible. Make the best out of the good parts of the days and take your anger out on the 'total ***$$£^&*(*&^%%' who 'invented' this disease not the sufferer. They cant help what they do once they have this awful disease.

    I miss my dad everyday. It's been just over 6 months now. I know this was going to happen and at points now I know now I had already 'grieved' for my dad over the time off his illness as he wasn't dad anymore once psp hit him. But it was still a total shock to get 'the call' I think we just kept thiniking he would get better when he had the good days and blocked out how ill he was at the end. A thumbs up was wow his OK but looking back no he wasn't he was sooo not OK. I though I had prepared myself in a weird way for 'this' but you cant it's impossible. Stop preparing and get on with loving the psp sufferer. Preparing is soooo different from it actually happening :(((((((

    Pops is now in peace stuffing his face with Mc donalds & beer. His on holiday now and will be for the rest time. That is the only way I can deal with this not the 'd' word - his on holiday :))

    Try to be as strong as you can. Carers, look after yourselves aswell, make sure you are strong when the bad times hit as I am affraid they will happen. To the poor PSP patients out their stuff yourself silly while you can, do as much as you can, live out your lifetime ambitions before the illness takes over, it does :(((( Tell people you love them while you can so loved ones remeber that :)))

    If anyone wants to aks a question I will answer anything as honestly as I know how to from my 'experience' with psp. I am happy to give my personal E mail if you want to ask in private.

    This site would have been helpfull if I knew it existed before dad went on his world tour, so I do think e mail and write away, it helps!

    Each day is precious so as my dad would say 'the day is beautiful it's the weather that's not so enjoy it' xxxxx

  • Ditto all my sister said - nicely put Jules made me cry :( - AGAIN!!

    xx

  • Phew! All these comments have left me in floods of tears...for you and your loved ones and for me who knows that I have all this to come with Mum. Shocking though it maybe and how awful it is going to be (it's bad enough now) I can't thank you all enough for helping me prepare for the inevitable. Mostly though you have given me comfort knowing that my frustration and sometimes anger, guilt etc is quite normal so it is helping me not to be too hard on myself. I felt so alone before this site came along and to hear all the comments,symtons and so forth are the same that Mum has and is doing helps me understand more. I will try and be more patient with her, and realise that it is not Mum but the PSP.

    How I feel for you all. How much strength you have all given me....thank you and especially those who have lost their partners or parents, the fact that you are still on here helping us all carry on regardless of your own grief shows just what wonderful people you are.

    I would think that once you have lost someone through PSP..that would be it, you would never want to talk or hear about it anymore as it is so cruel. But no, you have stayed, you are caring and you still want to help others. Thank you from the bottom of my heart because you don't know how much I need you there! xx

  • i judy I lost my wonderful wife a few weeks ago u talk about holidays we had wonderful holidays mostly to the Greek Islands zanti was our best last year my wife wanted to go on a cruise so early January we did the Canary Islands which she loved and in July we ended up in our zanti this time my daughter who is a nurse came with us with my son inlaw and they were a great help my wife enjoyed the holiday and was looking forward to going back this July sadly that is not going to happen the thing I am trying to say judy is your husband will remember a lot of love he had with u on those holidays if u like me can get some help family or friends to go with u both I am sure he will bring back memories for him and you I miss my darling wife and I will always ember those wonderful holidays we had together

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