I know I don’t post often, due to looking after dad and life in general.
Dad went into hospital 2 weeks ago with sepsis, they told us to prepare for the worst but he pulled through! (Stubborn proud Irish man) then last night was taken in again. The start of sepsis they said. To be honest he hasn’t been right since the last hospital stay.
He has had recurrent UTI’s and chest infections, his speech is now completely incomprehensible and he has only just agreed to a peg feed, although, o think it’s too late now. His eyes are constantly sore and he has constant constipation. His eye movements are very slow and he slumps down all the time.
So neurologist came and seen him today and said he is on the final stages.
My heart hurts but it hurts more seeing him this way. Relating back to first symptoms my dad has had this for 8/9 years.
Can anyone give me any advice?
I pray for you all and I pray they will find medical magic for this wicked disease. The illness affects everyone that loves them.
Sending all my love
💖💖
Rita
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daddysgirl1916
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I understand! My hubby had a Pacemaker and I was afraid it might keep him alive, or prolong his suffering. It didn't.
I would ask advice and help from Hospice. They are most caring and if you were to sit down with 1 of their nurses, I am sure they would be able to answer all your questions in a matter of fact manner, help you understand the process and allay your fears.
There is a post i made that referenced a video by I think Barbara Karn. She helped me, plus google.
The process is like the disease - individual. It may take a few days, or longer or shorter. The look of my hubby showed me clearly that there would be no going back. I knew what was going to happen, and felt ready to accept that it would.
Your acceptance is part of the process, as is your dad coming to realise and accept that he is at the end of the line.
He just looks empty, I accepted it along time ago but wasn’t prepared for what was ahead, any doctor, paramedic or nurse we’ve seen had never heard of it.
Keep telling him HOW MUCH you love him, HOW GRATEFUL you are that he was YOUR dad. Tell him he was the GREATEST dad a daughter could ask for. Tell him that because he was such a great dad you have been able to handle the challenges of your life, and are prepared to go on without him to guide you. Tell him you will miss him, but you are glad that he will no longer be struggling and suffering with CBD, and you are willing and ready to say goodbye.
As for when he will let go...there is no answer. He will do it when he is ready. Maybe with you present, maybe not. Hospice will help him to make the best transition from life to death.
Mom who lost her 55 year old to PSP, May 4, 2017...Los Angeles, CA, USA
Let me start with my sincere condolences for your loss 💖 I tell him everyday, he is so loved and cherished, I know it’s not going to be long, I just know, I don’t want him to suffer anymore. I will ask about palliative care tomorrow at the hospital.
I’m not sure how it works over there, I am in Coventry, UK.
He is loved and he knows it 💖
I feel I need to do something over here for awareness, not one doctor knew about CBD. It was by chance a locum doctor was there that day and diagnosed him.
Same here, and probably all over the world. Part of the problem is that the symptoms mimic Parkinson's and that is why until enough time has passed that the DX that is given is PakinSONISM.
I learned a great deal about the DX difficulty from JIM BOWER of the Mayo clinic (here in the USA). It's on youtube, MAKING A DIAGNOSIS OF PSP, CBD, OR MSA. It is excellent. I hope you will watch it.
I feel for you and your family at this time. Dad had CBD and his passing was very peaceful. He was under hospice care by that time and he had no pain. I was there and his breathing was slow, shallow then he just stopped breathing. I hope your father passes as peaceful.
This is what I’m praying for, my heart goes out to you. If you don’t mind me asking. How long from being diagnosed did your father pass? And did the final stages resemble what I put in my post
He got Dx Jan 2016, passed in Sept 2018. Showed symptoms probably a good 4 years prior to Dx.
Dad just stopped eating on a Thursday and mottling was noticed on his legs. He became unresponsive by Sat evening and passed very early Tues. We had family and Pastor with him Monday evening (he was never alone from Thursday to end).
Rita hugs to you. This is so very difficult for you and your Mum. My husband was also a strong stubborn Irish man. He has been gone for two and a half years now. Like you I worried about how he would die. I kept telling him how I loved him and it was alright to stop fighting and to go as I would be alright.
He had a driver with morphine in it. Does your Dad have one? My husband just went asleep. I am sure your lovely Dad will too. I totally agree with the comments on here. Contact your local hospice for help. They will have heard about CBD. Please don't be scared. He will gently slip away when he knows you are both ready to let him go. So be brave and think of him. He has been through enough?
Rita not any longer. I live in the UK and have done for a long time. However it is very lonely now. This wasn't part of the plan. My husband was in the RAF so that's how I ended up here!
Print off the details of PSP from the PSP website and give it to he doctor dealing with your husband. Put another near him so his nurse can read it. I think there is some additional info about CBD. However PSP symptoms are pretty much the same. It is a step forward with their knowledge base?
I cannot give advice but I offer love and support at this difficult time. Remember that your dad would not want to give you pain and upset. Hugs from Rob
The ride is painful for the patient and the caregivers .
My advice would be to keep the uti in control - that will keep sepsis at bay. The issues in swallowing will cause aspiration and thus pneumonia . So keep a lookout for that.
None of us including doctors unfortunately know when or which is the last stage - it actually is upto the almighty or some supreme power - atleast I believe. I can say this since have seen my mother go through this last 10-12 months . Each trip to the hospital seemed as the last one. I have lost count of the number of goodbyes I have said to her when stepping out of the hospital room or intensive care.
On one trip recently , doctors said she will not survive beyond a few days - but lo and behold - she was back home and it’s about two months since. Guess it just was not the time to move on.
So just hang in there , pray , manage your dads ailment as best as all of you can and let things chart their own course. And do take care of yourself.
Hi Rita, I’m sorry to hear of your fathers decline. I’ve read everyone’s replies and I don’t really have much to add. I just agree that although letting him go is difficult no one deserves to suffer and you will be giving him a gift.
A friend of mine recently lost her husband to Lewy-body disease and after she played a video of all of his friends and relatives saying goodbye to him while he was in his hospital he peacefully fell asleep and let go. I think it’s important for your dad to understand that although he will be missed dearly you will carry him in your heart forever and you will speak to him regularly. He will always be with you.
This probably isn’t much comfort because the unknown is so scary. I hope I can follow my own advice when hubby reaches the final stages. We are getting closer everyday and it’s so heart wrenching.
This is a hard time, but also a privilege. My husband had PSP, at the end he was attached to a driver, gently pumping morphine and something else to keep him calm and pain free. I stopped being his carer and became his wife again, which has helped comfort me. He died peacefully in his own bed, with me holding him, telling him I loved him and it was OK to let go. For all the horrors of CBD/PSP, the end is normally a peaceful send off. I hope it is for your Dad.
My dad is in the last stage. He’s slowly dying. Today will be the 4th of no food or water. He chose not to have a peg. Over the last year he’s been in and out of hospital with inhaling food. My dad is just a skeleton now, I just wish he could be given an injection to let him go with dignity. Watching someone die is so heart breaking. My dad has had PSP for over 11 cruel years. I pray my dad goes today.
I live in Hertfordshire but am from Leamington Spa and know Coventry really well. You did well to contact James. We are under his care and all the team are fantastic. If you need any advice one if the doctors is always happy to talk on the phone to you. Xx
My thoughts and prayers are with you all Rita. I agree with all that has already been sai. I’ve been with several people as they have died and every one was different. It depends on what else is going on. My husband was at home, not on any medication and went to sleep peacefully with me asleep on the chair by the side of him, holding his hand. It was the first time we had been properly alone for two weeks and I’m sure he waited for that moment. I told him he could go in peace and I would be OK, we both fell asleep and he didn’t wake up. The Hospice had left morphine and a driver here and would have fitted it if required but Colin put thumbs down when asked if he needed medication. His faith helped him and when he could speak he said he had no fear of dying but didn’t want to leave me. That last day, I told him not to worry about me, I have God, family and lovely friends and will be well looked after. Perhaps your mum could reassure him she will be OK. She has a lovely caring daughter.
My dad who I was with when he died in hospital had a chest infection and was given a large dose of antibiotics as the staff couldn’t contact me to ask if I wanted him to have them (they repeatedly phoned his home instead of mine). They couldn’t give him morphine until mid day as they had to wait a certain number of hours to see if they had worked. They didn’t so he struggled with a chest infection and died as the staff were preparing the morphine. 4 of us were with him, including my husband in a wheelchair by then. I don’t know if your dad has an end of life plan but I would discuss with your mum how much intervention should take place and make sure the doctors know your wishes if you don’t want life prolonged.
Hi there, so sorry to hear about your dad, I'm sat here with my mum, who is on her final stages i don't think it will be too long now, this is mum's fourth day without food, mum has had only sips of juice, she didn't want a peg feed fitted, she wanted to slip off as soon as she could.Mum has psp it's a dreadful disease, mum only became ill in December then was diagnosed in june, so it's all been very quick. Sending lots of love to you and your Dad xx
My thoughts and prayers are with you and your family at this difficult stage. I can offer no more advice over what has already been given. The end will come as a shock despite your preparations or expectations. I pray for you and your family and mostly for your Dad. 🙏🙏🙏
I just wanted to say that it really doesn't matter that you don't post often, the main thing is you have posted now when you obviously are desperate for support and answers and this site is full of people ready to give their unconditional support, as you will see from the replies, regardless of whether you are a regular or not.
I am not going to reiterate what others have said but what I have read on here during the last four years it seems that the final days for our loved ones suffering from PSP or CBD pass very peacefully, and that includes my husband. Palliative care is all about making the person comfortable and pain free as they slip away.
I, and each and every person on this site totally get what you are going through. Tough as it is you will get through it. After, well that's another story and equally tough going, but the support here remains, so when the time comes and you feel up to it, just check in for a chat.
Feel for you and all the others who are going through similar times. Talk to the hospital and discuss options for care, understand what the different scenarios are (not just medication but can you get him home or in a hospice if that is what you as a family would prefer). We have been very lucky and had these heartbreaking discussions with the support of our Community Matron. With Mum the most likely thing is she will stop being able to eat & drink & so suffer from de-hydration, she has decided she doesn't want to go into hospital and have a drip rehydrate her (it would only be a temporary measure and she would rather stay at home) so then palliative care will kick in at home and this would be a syringe driver with a cocktail of drugs to ease her passing (my Dad died with similar support in hospital and it was very peaceful). I know you can't prepare for someone dying, but having some understanding of what maybe involved has helped me face what I know must come and probably not too far off.
Keep talking to Dad whether he seems responsive or not, they say hearing is the last sense to go. And try and be kind to yourself so you can support your Mum when she needs it.
xxx
So, so sorry. You're not alone on this journey. My lovely Mum is in a nursing home. When I visited her yesterday she was, like your Dad, "slumped". It is a horrible disease with so many nasty symptoms, stealing the people we love. Thank you for posting. Sending you very best wishes.
My wife CBD went on to end of life care on Saturday.
Her feed and oral medication has been stopped, via syringe driver she is in receipt of glyco to prevent secretions and diamorphine 'enough to ease pain but not enough to shorten life'. Yesterday our minister brought communion and we had a service with our sons and Close friend which included an end of life prayer from the Iona community, it was a very precious moment. We've handed her over to God and trust He knows when the time is right.
Dear daddy’s girl, my heart goes out to you. As a daddy’s girl myself, I finally lost my father 8 years ago. He had had a stroke 10 years previously and finally passed from sepsis after numerous uti’s. My husband now has PSP.
Hold your dad and love him. Tell him all the happy memories that you have had together. Give him permission to rest in peace.
Hi, I am thinking of you at this awful difficult time. I have no answer and no help . I m just wanting you to know that you are not alone. Take care of yourself ... val
Rita..im irish like your dad..my mum was misdiagnosed with parkinson 3 years ago 18 months later found out it was cbd by neurologist in dublin..my heart goes out to you..we have had very little information on this illness..im my mums fulltime carer..shes a very glamourous lady loves her hair makeup and glam clothes ..and i wouldnt have it any other way..her speech is incomprehensible at this stage..use of both hands gone so she can do nothing at all for herself and her walk is a shuffle....she had her first bad fall a month ago so wont leave the house now...her swallow is giving her problems too...i feel your pain with your dad 8 to 9 years..i dont know how long your supposed to have with your parents with this..it seems very rapid....youve been there for your dad and he knows you love him keep telling him..thats all u can do...be there for him...xxx thi king of you all
SO Sorry you are on this roller coaster. Just as you think it can't get worse, around the corner, there is another hill to climb and all you can do is hold on for the ride.
When the end is near there is a double sided sword, one side you want the suffering the end and have a guilty feeling of relief. On the other you wonder about if this is the end then "what is next" as your life has been consumed with caring for you loved one.
We have been where we thought the end was near, then by some miracle and to the surprise of the hospice and Dr, Dad is still with us.
What can I say except that many hearts beat with yours now? You sound like a loving daughter and your mum seems a strong woman, too . Your Dad is not walking this journey alone. I am 12 years into CBD as a caregiver to my husband and think, often, about how it will end. It has been reassuring to read so many posts about a peaceful death. It is so hard, isn’t it?
It’s very hard, he’s on a peg feed now but always agitated, he thinks we are poisoning him and screaming for help ( that’s what we make out)
He’s getting very agitated and it’s heartbreaking. We are discussing a hospice after 8 years. I think of everyone going through this, my heart, love and prayers go out to everyone xxx
Thank you for your update. I think that we have now entered end stage illness. He is eating very little, sleeps a lot but is firm about not wanting a peg. His cognitive decline since June is startling and I wonder now just how much he understands. Yesterday he asked me where he was- knew he was at home but did not know where we were in the U S. Had a scare last week because we thought he had prostate cancer next week he is scheduled for a CAT scan to figure out why he isn’t eating. Don’t know if I will put him through that. He is tired.
Hello. No, he is not aggressive towards me. That must be hard. If anything, he is passive and seems to accept just fading away. Cancer specialist doesn't think he has prostate cancer but admits we can't know for sure without biopsies and tests that would be very difficult for him. Same doctor said that if my husband did have prostate cancer, he would not treat him as treatments (surgery or hormone therapy) would probably take his life. I cancelled the CAT scan to see if he might have something else wrong in stomach or digestive organs. He doesn't want to go and is worn out. Truth is, so am I. And I know that if he does have stomach or liver cancer, for example, it would not be treatable because of his condition. He simply has no appetite; lost his sense of smell several years ago, and that doesn't help. I am hoping that he can survive till Christmas when our daughters will be here as they very much want to spend more time with him before he passes. They both live a long distance away, and have been good about visiting and calling him, but they want to look into his eyes and tell him they love him. Our son has been shamefully negligent; invited him and his family for Christmas but they declined. He hasn't seen him in two years. Someday, I think, our son will regret this but I have done what I can do and will have no regrets. Just memories of a good life together and a man who has loved me with all his heart.
I am so sorry about what you and your husband are going through. I agree with you - no point in putting him through any testing. Just keep him comfortable and love him.
Hoping with you that he is here at Christmas to spend time with your daughters.
Luckily my husband had made his wishes recorded that he wanted no hospitalisation or PEG fitted but just have his pain controlled as much as possible. It was of great comfort to me that I didn't have to make the choice to try to prolong his life but just have pain relief. Like Heady's husband, Ben had a syringe driver fitted and he passed peacefully away at home. Sometimes I feel the the doctors fight and fight to revive them when the sufferer perhaps would actually rather have them try to control the pain and pass peacefully to be free of this awful disease. It's a very personal thing I know but it has completed made me change my view of my own death when my time comes.
I know what you mean. I lost my husband recently he had aspirational pneumonia. He was cut off oxygen lasted for 8 days no food or water. It was awful. He was to get peg only home submitted it late. What I can’t understand is some of the drugs used to keep in comfort.
I pray for you and your dad. My husband passed July 15. He lasted 8 days. I really don’t know what to suggest. My daughters and I had him on comfort and care. It was hell as I’m Canada not strong drugs. Hugs to your dad and you.
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