My Dad lost his long hard battle against PSP on 13th February. He fought bravely for so long, I can't quite believe the struggle is finally over for him. We never had any help or assistance and we made the best of what we could and managed to adhere to his wishes to never be bedridden for as long as we could, all apart from the last six weeks once he suddenly stopped eating. Like so many wonderful people on this forum, I will remain a member in the hope that sometimes I can give a suggestion that might help someone. If anyone has any questions they would like to ask, I am open to answer whatever I can, either on here or privately. I know how alone you can feel and how helpless we feel as carers sometimes so if I can ease someone's mind for even a second with an answer, I will be happy to do so. Feel completely lost as caring has been my entire life for the last four years. I hope he is free of the anguish and suffering and is happily reunited with my Mum whom we lost to cancer in 2011. Thanks to everyone who posted here, the tips, the reassurance, the help and advice has been invaluable. I don't know if I would have made it through without you all. xxx
Dad lost his fight: My Dad lost his long... - PSP Association
I am sorry for your loss, you dad looks a sweet man, it is sometimes a sad and cruel world but the fact that you cared for him without help speaks volumes for you.
I am glad too that you got comfort and support from the forum, I feel exactly the same and would be bereft without all the love and support I get.
Take care and be kind to yourself.
My heart goes out to you at this time.
Alana - Western Australia
So sorry to hear of your loss, I to lost my dad only November and like you did I did everything myself with only help from family no carers, I think it made it a more special bond between us I even gave up my home and job to care for him ,it was hard but I loved every minute and wouldn't have changed a thing my thoughts and prayers are with you ,god bless he is free from pain at last xx
Thank you for sharing your love with us because i have done the same and
normal people think that it is too much but I am glad to know that you have no regrets because keep thinking that I will not either when the end comes. Supporting and helping a parent is priceless and important gift that enabled me to have a very special bond. Kudos to you, Nina
We need U on the site so,plz do
stay just,lost,my,reply to,u
I sm.so,sorry that your dad,,has,lost his fight but great that yo,u managed with no, carers you sre a star no,doubt,of,it
hi sharon637 I am truly sorry to hear of the passing of your father for him the struggle is over may he rest in peace
peter jones queensland Australia psp sufferer
Sorry to hear about the loss of your lovely dad. I just hope I can be as brave as you as I care for my wife. She wants to remain at home, and I will do all in my power to meet her expectations, including not being bedridden.
Take care and thank you for staying on this site. Your experiences will be invaluable to many on this forum.
I am so sorry for your loss, I lost my husband just before Christmas and miss him very much. Your Dad looks a very kind and loving man and I am sure you loved each other very much. Be kind to yourself Best Wishes.
So sorry for your loss,my dad has stopped eating,on Wednesday he's having a peg fitted.im so scared for him.
Dear Robin20 I understand how scared you feel for your Dad. There are many here who have had great success with Peg feeding and I hope you can find some assurance from their experiences. I will be looking out for updates so please let us know how it is going. Love and prayers being sent for Wednesday and hope it goes smoothly and works out brilliantly xx
Dear Robin20, if my wife's experience is anything to go by, your father's peg will ensure he doesn't die of starvation or other complications caused by not eating. He will put on weight and be physically much stronger. He will sleep more soundly - and so will you although you will continue to listen to his breathing. There will be no more terrible scenes as you try to persuade him to take his food but he will still be able to eat normally if he wants to, not solids maybe but egg yokes, purees etc. The big challenge for my wife - and for me - is to find enough stimulating things for her to do and experience in order to improve other aspects of her quality of life. Any ideas would be most welcome. My wife cannot speak or read or write so communication is very difficult. But at least the peg has helped her for the past five months to overcome the inability to swallow the right nourishment needed to stay alive. Like you, I'm scared of what lies ahead but I am relieved that she did not waste away and starve and that, thanks to the peg, she is healthy enough to fight infection.
All the best to you and your dad.
That sounds encouraging,he just looks so down,big day tomorrow thank you.
One other thing - my wife takes her nourishment overnight which leaves the day free except for three 15 minute sessions when I use a syringe to supply her with water and medication. The water amounts to about 1 litre a day.
Ever so sorry for your loss. I truly feel your pain, we lost dad in October after his long battle too. I also was dads full time carer and feel absolutely lost. The only comfort is that your dad is finally free, and his spirit will be with you forever. You did the best you could for as long as you could and I'm sure your dad was ever so proud of you. Hope his soul can now rest in peace. Message me any time for a chat if you feel lonely, I know I do feel lonely a lot. Take care my love xxxx
I am sorry for your loss, but glad your dad is no longer suffering. I'm sure he appreciated all you did for him. Thank you for being there for others. Take care. Lindsey x
Sending love and my deepest sympathies for the loss of your beautiful dad. I wish you lots of courage as you walk the road ahead. I can only imagine what is would be like to suddenly have no dad around to care for every day after four years.
My mother is 96 years old and living in phase four PSP. She is preparing to leave this world and the body that has become her prison and I have spent the last five years helping her so I am sure that you feel devastated...
I will keep you and your family and friends in my thoughts and prayers. God bless you and your loved ones.
Nina in Ottawa, Caregiver to Helen.
I know what you are feeling and such a mixture. I have found the ability over the course of the last year to come to terms with it all and think of my crazy funny mum as she once was before the ravages of psp. It will be the anniversary of her passing in 2 weeks time. It feels so much longer. I still miss her and think about her every day. Peace to you and your family. X Dianne.
So sorry to hear of your loss. Your dad was very lucky to have had such a caring daughter. Take care xx
How are you today, I hope not too bad for you and the family after your loss.
Would you mind if I asked how you coped with your dad not eating, did he take liquids, had he eaten ok up until this stage?
Sorry if this is a bit intrusive but it is something that a lot of us carers would I think need to know and in the absence of any information from the medics, apart from PEG feeding which my husband does not want, what did you do?
Not at all intrusive, if I can help by answering any questions at all I will. Besides, I am sure we all appreciate the chance to talk about our own loved ones! My Dad was eating three or four good meals a day up until 16th December, when he started not eating so much. He would maybe eat his breakfast then not touch his lunch. Then he would maybe eat only a few mouthfuls of his dinner and refuse to eat any more. Dinner I had to always feed him, same as with his cereal in the morning. Any thing he could pick up and eat like toast at breakfast or toasties for lunch etc he managed fine himself. He had swallowing problems with liquids and his pills, but he was mostly ok with solids. He would always cough a bit maybe 15 mins after he had finished eating so perhaps he was "silent" aspirating. He had stopped communicating with us apart from yes or no a couple of years ago so we never really got an explanation as to why. Then on 2nd January he refused all food, just clamped his mouth shut and wouldn't take it. At first, I thought it was just a bad day, or a bad few days. We only saw a neurologist three times but the second visit, she did say this would probably happen. She had agreed and logged the decision to not be peg fed at the first visit so it was never brought up again.
He never ate again, despite best efforts to tempt him. He also didn't want to get up any more. He tried once on the 6th January but was up for 3 hours and seemed so uncomfortable and he just wanted to get back to bed. By this time he was really weak and getting him back there nearly ended in complete disaster as we were pretty much holding him up. He didn't want to try again.
I tried asking him if he had stopped eating because he wanted to give up but he said no. So we tried to sit him up and take his madopar four times a day as I felt he could still turn this around. But after a couple of days of this he was refusing to even sit up so pills were out of the questions. Besides, he wasn't swallowing, he was chewing them up and gave himself terrible mouth ulcers. The doctor gave us a gel to wipe around his mouth with a finger and suggested it might be best to just keep him sedated until the end, as it would probably be five to eight days at the most. Although we filled the prescription, I never used it as I still wanted to give him every fighting chance.
He was still drinking, although lying down meant it had to be administered by syringe, 1ml at a time. It was only plain water though, he had gone off everything else just before this point and stopped drinking coffee, tea, orange juice, cranberry juice etc and fizzy drinks had been out for about 10 months. The thickened water just seemed to make his mouth and throat more mucus filled so we even had to stop that.
At first he was hitting nearly a litre a day but this gradually tailed off and in the last couple of days, we were down to just a drop or two and wiping his lips with a sponge as he wasn't swallowing at all.
He lived for 42 days after stopping eating completely. I don't think he made a "concious" decision to give up by not eating. I think he would have stopped drinking too if this had been the case. My best guess is that he just didn't feel hungry, and therefore didn't sense any danger from not eating. I have to say, although I still think not prolonging this by "artificial" feeding was the best decision for my Dad, it was really hard to stick to. The urge to fill that syringe with something calorie laden and build him back up was sometimes overwhelming. But I HAD to respect his wishes and fight against my desire to "save" him. I also had to remind myself of all I had read where you can make someone feel really bad by feeding them if their body is no longer at a point where it can use the food.
I wish I could say it was easy but it was very difficult to see him getting painfully thin and weaker and weaker and not do anything about it. Not to be peg fed is a very brave decision, but certainly the right decision for some. I very much think it depends where the swallowing problems come in to play. My Dad could still eat but nothing else. Even while bed ridden, he would show agitation if I talked too much while doing his bed bath, changing the linens etc. He just wanted "peace and quiet", the only phrase he would still say!
He had pain patches from 28th January up to the end, a three day patch. I'll never know if they were required or if they helped, but because he wouldn't communicate I didn't want to take the chance on him being in pain if it could be managed. Other than these, he was off all medications.
I think when the times comes for you or others in the same position, and I hope it is a long way off, you find the strength because it is what your loved ones want. Whether it was a choice to give up or whether it was because eating made him uncomfortable because his body was beginning to shut down or something else entirely, I will never know but he was adamant not to be kept going by any artificial means or machines. He wanted as little medical intervention as possible. The love and respect you have for them allows you to find the strength to carry out their wishes.
I hope this helps and if I have missed anything you want to know then feel free to ask. This is a truly awful disease and I know there are always unanswered questions. By sharing our experiences, it can help us prepare for things that might happen. My Dad hadn't had any falls, because we didn't let him, he never had any bouts of pneumonia. He had a couple of UTI's. His brain scan in November showed almost a third of his brain just completely gone, with huge areas where there should be matter just filled with brain fluid only. The very day before he passed, his vitals were all still good. There were no signs of imminent passing up until the last 20 hours or so where we noticed mild mottling and he had rapid breathing.
Love to you and your husband and hope this time is still a long way off for you xxx
Sharon......Thank you so much for describing the condition of your dad leading to his passing away. This must be very difficult for you at this time, but I have found it to be very important to me. My wife wants no medical intervention, and no PEG. I don't know how I will react when the time comes, but reading your detailed experience with your dad has helped me again grasp some of the realities that may lie ahead. We do try and live day to day, and not dwell on the future, but this journey for my wife and myself is a really tough one. She wishes it were over, but the end may be a long way off.
Your wife has made a very brave decision and I am sure you both will find the strength when the time comes. You are right to take each day as it comes and not dwell too much on the future. It is sad to hear that she wishes it were over. I do not know if there is anything that can make it "easier" when the time comes, but knowing you are carrying out her wishes and knowing she was ready might be some comfort to you to help you through. You are both doing an amazing job, love to you both xx
Thank you, Sharon, for taking the time and care to write in such detail. I learned some important things from you, both in details of care and in possible paths of the disease. It helps me to imagine a good and decent end, and I hope you don't mind my calling it that. I know it was a hard and terrible time for you and your family, but it seems to me that you did very well in following your father's wishes and doing absolutely all that could be done. I hope I am able to follow your example, and that you have been comforted in your loss, Easterncedar
Thank you all so much for your wonderful words of love and comfort. You are all so amazing, sufferers and carers alike. Every single one of you is so brave and so strong. There will be times when you don't feel it, but every one of you is doing an amazing job in this fight. Your words mean so much to me because I know you all actually understand exactly what you can go through with this illness. Thank you again xx
OMG...my heartfelt condolences to you and the family, Sharon. And we all applaud your courage in describing your dear Dad's demise so well. As so many friends on the forum have testified ,and I have to agree 'cos I saw my bride wither away' inch by inch' eating smaller and smaller portions till the time came for goodbye...that happy release...for a PSP sufferer. We must never forget that with no cure PSP will remain a terminal disease...just a matter of time till some researcher comes up with the goods to eradicate it.
Whatever, please, please, stay with us as you well understand everyone's need to find out what may come next.
You have been there, done that, reassure us.
You mentioned a brain scan,Sharon, had your Dad gifted his brain to the London Brain Bank?
Again my thoughts are with you.
Thank you Brian for your kind words. We all go through so much and see so much bravery in others, sharing the experiences can only make us stronger, and more determined and more compassionate. Donation of the brain is not something that was ever mentioned here in Spain, although I think we would have been happy to do it if it had. Perhaps it isn't done here, or perhaps we are too far away from major cities being in a bit of a "back water" here. An opportunity lost perhaps.
sorry to hear about your dad. but he's at peace now though his loss must be so painful. allow yourself time to grieve. love Rachel Ireland x
Sharon I am so sorry to hear about your Dad's passing and feel very much for you and from what you described to Dorothy my Mum had mirror image experience the same as your Dad, except it was my Dad and myself caring for Mum. My Mum passed away last November and it's still hard as I'm sure it will be for a long time, I think this is because you are slowly mourning the person with PSP throughout and especially towards the end of the illness this is what I think anyway as I found myself asking myself why do I not feel as upset as I was when Mum was here and people kept saying how well I was coping and I resented this but now I look back I know I was worse in the last year of Mum's suffering!! This sounds selfish as I'm talking about how I feel but I haven't before but perhaps you and others have the same feelings, don't beat yourself up like I have! Hope this helps you and others that have lost there loved ones, my thoughts are with you all xx
Thank you Sharon,the peg will take away the last thing he enjoyed,he's very alert and can't speak,he normally gives thumbs up for yes or no,but nothing today,he seems really down.
Sorry for the loss of your dad. I think it is now time for your caregiving to turn inward. Pamper and take care of yourself and family. You and soldiers like you and the rest of us deserve the best. Peace and love go your way. Please do keep us in the loop and respond to questions when you can. We need you!
Dear Sharon 637 - so sorry to hear of the drawn-out final days. When you have a "down" day, as you will, remember that your Dad will have been grateful for your love and care and respect for his wishes. Very few positives with PSP except that you will have prepared yourself over the time you spent with him - I can't imagine the shock when a loved one is taken suddenly.
It has been a full year before that door closed and the next opened - fortunately living in a town means access to people and the process of becoming "human" again with a few close friends who understand. The most necessary thing was to catch up on sleep.
Do you have any hobbies ready for when you feel able? Personally knitting has been my saviour and a bit of house redecoration is on the horizon.
This site will certainly benefit from your experiences. Take care and look after yourself.
I to am deeply sorry for your loss . I know the pain he endured , being cursed with this thing and how it is ruining a lifetime of work .Please stay. Thank You , ed
I'm very sorry for the loss of your Dad Sharon 637. I hope you are comforted by the fact that he is now at peace and without any more suffering. Thank you so much for your detailed explanation of your Dads final journey before he passed. It is so very helpful. My mam is after declining rapidly over the last few weeks. She is on the verge of loosing her ability to walk as her legs are buckling under her now. She's had numerous falls in a week. She is finding it very hard to get down puréed food. She has stated she does not want a peg fitted to prolong things. She's not comfortable sitting or in bed. She wears adult nappies full time. It's so hard. I care for her on my own too. I pray she will not suffer much longer. She wants to die, she has said this many times. But I can't say what stage she is at the moment.
You need to look after yourself now and take your time to come to terms with not having your dad there. I'm sure he has been extremely grateful and proud of all you have done for him. Stay with us as your help is invaluable Sharon 637 x
A little late, but I send my heartfelt condolences to you on the loss of your dear father.
Like others, the detail you have given to Dorothy and the rest of us on this forum is so helpful for which I thank you.
Remember to give yourself time to grieve but do stay with us who are still on the long journey with our loved ones.
Dear Sheron,very Sorry for both of your parents...God will call fast those whom he love most..I know how painful it will be for u...Life after our loved one's is very cruel...So please Try NOT to be alone...because the pain will increase..Go out,help somebody and be full time occupied....
Oh my goodness, so many beautiful and heart wrenching posts. I need my box of tissues to read them. Thank you so much everyone for all the wonderful words and my whole heart goes out to each and every one of you going through this journey. The support is absolutely amazing and incredible. When I feel down I come and read through all the lovely posts again and have so much comfort from them. You all are amazing. xx
Sharon, I am so sorry for your loss. I am sorry you did not have any help but I am glad you were able to be there for him during his battle. As yours ends ours has just begun with a diagnosis just over a year ago. I just might take you up on your offer of support in the future. I am sure it will take awhile to redefine who you are. And so soon after your loss of your dear mother. There is not any rhyme or reason to this disease or definitive time line. That being said I do wonder how many years he lived with the disease. Please take care and thank you for posting a picture.
He looks like a man who would not give up easily
Thank you Goldcap for your kind and touching post. I am so sorry to hear you have to go through this journey. Please do take up the offer of support, advice, suggestions or even just to vent, it is invaluable. I would say my Dad lived with PSP for 10 years, although this diagnosis was only made June 2013. You are so right about him being someone who would not give up or give in easily Take care and stay strong xxx
Thank you for replying! I have had a very difficult year. I lost my mother also in September 2013 to a non PSP related injury. She passed peacefully in my arms and I am so very grateful I was able to spend so much time with her especially in the end. It was difficult not to intervene in the end when she stopped eating, but a I am grateful we honored her wishes. At least this time around I will know what to expect in the end. Take care Jayne
Our neurologist tells us there are no 'stages' to PSP. My husband fell from a ladder and struck his head in 2006; since then, it has been all downhill. He was finally diagnosed as having PSP in the Spring of 2012. His swallowing & clearing throat secretions is becoming difficult as well as transfers + he now has an suprapubic catheter which has helped with his frequent falls & UTI's. Have you heard anywhere the longevity of a PSP patient. He is on a nebulizer and is continuing to eat solid foods with difficulty, but has a good appetite. Any knowledge would be helpful and appreciated. Thank you.
Sharon...my deepest sympathy to you in the loss of your father and mother. I am new to this site and am just beginning my quest for knowledge about PSP and CBD. My mother in law received her last diagnosis in December of 2013. She was first diagnosed with Cerebellar Ataxia, then Multiple System Atrophy. My prayers will be with you and your family. Take care!
Firstly sorry to hear about the loss of your father and also your mother. Reading your post reminded me of my dad who lost his battle in September. They are both true heroes and accepted the challenge. You too are one because we know only too well the demands of looking after someone you love who has PSP is very difficult. Just wanted to acknowledge your hard work making someone with this condition ease into the next world. May they all RIP.
Declan (the son).
Thank you so much Marq, Buckeye and Declan for your lovely words. All three of you are at different points in this journey and it's terrific to see so much help and support and "coming together" on here. Marq, I wish I could answer your question on how long. I know it's a question a carer asks many times in many different ways. How long do I have with my loved one, how long can he keep enjoying life and not be suffering, how long can I go on for? The websites are mostly still quoting 5 -9 years. Many people on here lost their loved ones after 10 years. Often the words of our neurologist on our second visit come back to me. She said not to be fooled by the web sites and make decisions based on that. She said it is often the length of time it takes for the diagnosis to be made that makes the medical profession think it takes that length of time and it actual fact it is longer. She has a case of PSP which so far has been going on for 18 years. I suppose it depends on the type of PSP and the individual person. I am very glad the catheter is helping, we used condom catheters and they too made a huge difference. We were able to take him out without so much worry, we didn't have to do stressful and difficult transfers every hour in the house etc. They didn't help much at night though as he would pull them off first chance he got! My Dad too had a good appetite and was still on fairly normal solid foods right up until those last couple of months. I am glad he still has a good appetite. I hope that you and your husband can still find some joy and good moments in life and manage to smile sometimes. This is a very hard road and please do not hesitate to message me, even if you just need to vent.
Buckeye, I am sorry to hear of the recent diagnosis. I am glad you have found this forum quickly though as the people here are amazing. Every one is a hero and always so willing to help. Even the smallest tip can make a huge difference and be such a help, you can breath a huge sigh of relief! Stay with us and always feel free to ask questions. The support you get is amazing, from carers and sufferers alike. I wish you and your family many good moments and fun times.
Declan, I am very sorry to hear of your loss. Your Dad sounds like he was a true fighter too and you too are a hero, for everything you did for him and with him and for staying on here to help out others and offer a word of encouragement. They were invaluable to me and helped keep me going. Also, even though our journey is over, we still seek understanding and knowledge of this disease and I have more faith in finding it here than any medical website.
Thank you all again for your kind words. Love and prayers are being sent to each and every one of you. xxxxxx
hwo r u now?
plz sgtay on the site
we need you
I'm ok thanks. I miss Dad of course but try to imagine him happy and reunited with Mum. I'll always be around, check in every day and posts from you always make me smile! Hope life is still good for you and you are managing to keep your spirits up? It was good to hear that you can still feed your cats, even though you said you make a mess ha ha! We were lucky, when my Dad dropped food, the dogs usually helped clear that up then all we had to do was run the mop over. Anything on the floor was fair game for them. Keep smiling Jill, we all need to see that happy face xxxx
So sorry to hear of your loss, you sound like an amazing daughter who has done everything and more to care for your dad, I'm glad you are staying on this forum to support us all and hopefully we can support you too - best wishes x
I am so sorry for your loss. You have been a great support to others and more importantly for your father.