hello all, i know u cant know if its the end or not, as on many occassions it has looked that way, but this is the first time ever my dad has decided he doesnt want to get up anymore. hes been in bed for 5 days, doesnt want food or drinks, although we are managing to get some fluid in him, hes not talking just staring at us. pallative care hs now been arranged at home and we wer given the forms to write his wishes , which are no more hospital and he managed to say no to a peg ( much to my releif ).....but me mum just sit everyday with him and she asked me do i think this is it, well i dont know, but the not getting up is odd for him, so carers come, clean him and leave him in bed. just wondered if anyone else experienced this prior to death...so sorry to ask such a personal question xx
worried: hello all, i know u cant know if... - PSP Association
worried
If it is not the "end" it sounds like the beginning of the end. It is so hard to come to terms with. I know having been through it recently with my man.
It will be clearer as time goes by if this is the case.
Try and communicate your loves, fears, and questions to him, and come to a mutual understanding.
We had few words but I found his actions spoke loudest. He was able to ask if I would be all right. It was mutually understood "after what". We had only a couple of weeks but no doubt it is different for each one.
My thoughts and love are with you both. Sit with him as you are doing. Give him whatever he feels like eating.
He, or his body, will say when enough is enough. Talk to his doctor so that you know there will be something available to keep him comfortable towards the end. Your doctor will understand when that time comes better than you. It will be his decision rather than yours to make in the end. I found this helpful for me.
Big hugs for you both.
Jen
I am sorry I can't help as I haven't experienced that as yet, however nothing I could say could match Jen's reply. Very informative and sensitive which I can take with me on our journey as Steve is getting weaker. A good question as it is something we all will face eventually and once again this forum has provided help and hopefully solace to us. Thinking of you gel68 and hope the next few days and weeks are not too hard for you all. Love Pauline xx
I think Honjen has said it all. Your dad has decided he doesn't want to carry on and if he isn't eating or drinking much and has refused the PEG eventually he will get what he wants. It is he who has made the decision and it is good he was able to do so. All you can do is make however much time he has left with you as loving and comfortable as possible.
My husband asked for the PEG, which he now has. He has what the GP calls "neurological blips". He started one last Thursday. His temperature spikes to 103, his breathing is very erratic and then stops completely for a few seconds before starting again with a gasp and he is totally unresponsive with eyes closed. It has happened several times now over the last 6 months. This last episode ended as suddenly as it started on Saturday evening and on Monday he indicated he wanted to go out in his wheelchair when I asked him. The GP has said that some time, during an episode when he stops breathing, he probably won't start again. As he has had several episodes, I now try to carry on doing things in the house so he can hear things going on around him. I have the radio on in his room and keep an eye on him if I'm out of the room via a baby monitor. I have lots of short times during the day when I hold his hand and tell him I love him but I don't talk in hushed tones and try to keep things "normal". If someone calls we talk normally. It's my way of coping. If I sat with him thinking, this is it, I would have spent many depressing hours in tears. When I go, I want to hear people talking and laughing so I know they will be OK without me; life goes on.
However much time your dear dad has, I pray it will be pain free and comfortable and my prayers and thoughts are with you all at this very difficult time.
X
thanku all for ur replys....i know its silly to wonder, i guess it doesnt really matter now, hes calm and quiet, he looks comfortable. i learnt so much from this site last few months i was able to inform my family so i do thanku u all for that xx
Not at all silly. Of course we must wonder. It's lovely that your father is calm and comfortable and at home. It's what we all wish for, for ourselves and our loved ones, psp or otherwise. Take care of yourself, too, now. Love and peace, ec
Bless you all
Of course no one can say if it's the end, but it doesn't sound good
My dad has been in bed since about 5th May and is completely bed bound, no longer wants to be hoisted out, he eats little and is quite rightly throughly fed up! My dad is under palative care and I actually want this all to end because for him it's no life at all. My dad has also said no to the peg, I also am thankful for that!
All I can say is as the others have, keep your dad as comfortable as possible and give him as many cuddles as you can
Thinking of you all and sending you a huge huge hug!! X
gel 68, There's nothing more I can say that has not been said. Like NannaB's husband my husband also has the PEG. but he has yet to have neurological blips and still is as active as he can be. But when the time comes, I want him to be amid those who love him in a way that says it's ok....speaking to him and others as normally as possible. The time will come so for you I would say find peace, don't let PSP take the last moments with your dad ... and like NannaB says go about your business, comfort him with lots of YOU moments throughout the day ... Let the day come when it will...in the mean time peace be with you.
AVB
I'm so sorry gel68, my husband also wanted the peg and he is getting all the nutrients but he is very unwell and as nannab said, he too is getting these blips, he has just become a permanent resident in the lovely nursing home that he has been spending respite for a while.
I will never stop feeling guilty and bad about not managing but it really had to be. My thoughts are with you and your family, we are all facing things in different ways but, we are all together on this cruel journey xx
So yesterday he decided to let the carers get him up...he wasxput in his chair. He looked awful and the weightloss was obvious. My mum kept offering him food. She managed one spoon of cereal but 5 mins later the lot just poured out of his mouth. I have told her not to do it but she just cant stop. She loves him and doesnt understand the not eating. I wonder why he got up. To have one last look around maybe? He didnt even try to speak to us all day. Was so sad to see. Will see how he is today. Thanku so much all of u xxxx
Dear gel68, thanks for post, my wife is showing the same traits, I am sure the heat in south east of England does not help, only liquid food being taken Altraplen and complan. Find my self shouting at her to encourage drinking yet I know I am shouting at this PSP condition. We wanted a peg fitted but as all things it is a waiting game and it may be too late. Now speaking to everyone gearing up for the end......Tears ....chin up, more tears, Chin up..... carry on PSP carer.
So sorry for u. Its just horrible. Thanku and same to u. Stay strong xx
Nothing to add to the comments above but thinking of you at this sad time. Like nanna B, when my mother was dying [ not PSP ] we held her hand and my sisters and I shared memories so we were laughing helplessly and she had a smile on her lips. It suited us. Find your way.
love and hugs, Jean x
Doglinton, that is exactly how it was with my mum who passed ( non PSP) as well. The day before she was very bright and alert. It was wonderful. She too stopped eating gel68 & Amber54. A gradual thing. Weaker, more asleep time than awake, then drifted off 1 day after " perked up" day. I heard this happens sometimes in the end. They come too and appear to be coming back but it is more like a chance say goodbye. You are doing the right thing and assure your mom he is not starving . You can use a syringe to wet his mouth and there are glycerin sticks that work as well when water comes back. My husband is starting to drift and I keep finding ways to pull him back. But lately I feel like My efforts will be futile in the near future. I try to not think about it and stay in the day- my new mantra. So stay strong, keep telling them you love them and stay in the day. Because really, that's all any of us really have- today. My heart goes out to all of you.
Xo Jayne
Sending lots of love and strength to everyone having to deal and cope with the later stages of these awful conditions. Xxx
My wife was like that towards the very end. I would monitor her heart rate and O2 constantly. You can buy a fingertip pulse oximeter, here's one on Amazon ... amazon.com/Concord-Basics-F...
Once her O2 got below 90 and her heart rate was racing around 120, I knew the end was near. I also bought a nice stethoscope to listen to her lungs. But in her case, her right lung was pretty much filled with pneumonia and even the nurses and doctors couldn't hear the normal "crackles", mainly because there was practically no air flow going through that side of her lungs. When her O2 dipped further into the low 80's, it caused her to be comatose. And once her heart rate dropped below 60, it wasn't even 3 or 4 hours before she passed. All during the time, the nurse was administering morphine and Atavan on an hourly basis to ensure she was not in any pain, which I really think sped things up.
I still re-live that final night every single day, and it's been 9 weeks tonight that she passed. I cry all the time, but I know she is in Heaven with her Heavenly Father, and no longer battling this horrible disease.
Blessings to you and your family.
Ketchupman
Thank you KM. As hard for it is to describe the goings on, this has to help somebody who may be seeing the same things in their loved one.
I wish you peace and comfort knowing that your wife is where she ought to be....9 weeks already....I often imagine B in heaven . it feels good in fact I do keep wondering why he is dragging his feet...but it's not really our choice...right....now we earthlings have to quit dragging our feet and find the things here that God has prepared for us to do.....Clean out my closet...really God?....wow can't I just go to Mozambique or somewhere...lol
AVB
My calendaring skills aren't the greatest. It's actually only been 7 weeks. It still seems like just yesterday she was with me, yet it also already seems an eternity that she's been gone.
Ketchupman
I know, friend....well you could go and clean a closet (read previous post)....trying to be funny when it aint so funny...
((HUG))
AVB
LOL. That's what I've been doing this afternoon, cleaning out a closet with Kim's clothes and boxing them up to take to some of our family members at a family reunion this evening. Kim had SO MANY clothes. They started out at a size 18 and eventually she got down to a 10. She loved to shop. She used to be a hair stylist and worked in the mall at a Regis. She never seemed to come home with a paycheck. It was all spent at Talbots and Eddie Bauer. But I wouldn't have it any other way, if it made her happy. Even up to the final month, I'd take her shopping and buy her some new clothes.
Hugs back at you!
Ketchupman
Hahaha, a shopper eh?.....I liked Eddie Bauer never been to Talbots....I'm too short to find any clothes that fit . 4'10" 95lbs give or take....I used to be size 6 everything; from shoes to overcoat. The industry resized and now I am a 0....who's a 0; You know what that does for my self worth? So I dont shop much...but like your wife never managed to get all the check home....even when it was direct deposit! hahahah
Well I'm neither in my closet or Mozambique (that's where I planned on missioning before I met B)
I;m trying to get B to take a walk with me....so many wonderful paths here and he WILL NOT walk on his own accord! I was thinkg you should buy a bike and find soem good KY trails .....October so beautiful....Can you believe one more month and some days before 10/1? Shouldn't Oct. be 8/1?
AVB
Enjoy your family reunion!
Hi ketchupman
Must have hit the wrong key somewhere! Good to see you about again. You sound like you are doing a great tidyup job! And no doubt with joy and sorrow as you come across things with memories!
I am on the same journey in parallel. The paperwork is done, now comes the task of downsizing, clearing up my messes and getting on with the new 'new normal'! I am beginning to be able to relax more easily and allow myself to indulge in quiet enjoyment.
Hope you are now at a similar point too.
Hugs ketchupman
Thanks! Slowly but surely I'm getting along. But boy oh boy do I miss my precious wife. Yesterday would of been her 55th birthday, so it was a pretty sad day for me. I visited her grave and put some beautiful flowers on it. Kim always loved flowers.
Take good care of yourself!
Ketchupman
How's dad?
He is still in bed. Still not eating or barely drinking. His body has shrunk but when i look at his face he looks so calm. He was allways crying but not in the last week he hasnt. Maybe the odd tear but thsts all. Im aware he could be this way for weeks 😢 xx thanku for asking xxx
Gel48, I was coming on here tonight to write something very similar to what you wrote, except your Dad sounds (possibly) a step past my Dad, although I fear my Dad is quickly heading in the exact same direction. He had a slight bedsore a few weeks ago, the only one he's ever had, and we, his carers, diligently got rid of the sore in a few days, but ever since, he's so weak, has diminished appetite, suddenly unable to move eyes downward, (before, he couldn't move his eyes upward, and he can still move his eyes side to side,) talks less which is only a few words a day now, and most telling of all, wants to stay in bed most the time. I expected him to regain strength after the bedsore was cured but he hasn't at all. So, like you Gel48, I'm wondering if time is running out, or what. Reading this thread was absolutely heartbreaking. I'm so very sorry Gel and others for what you're going through (and have gone through) especially in these (probable) end stages. God be with us all, especially our beloved psp sufferers. You and they are all in my prayers. Find strength in knowing we are all doing our best to love and help. Not everyone can say that you know. Be blessed my friends.
Its been a godsend to speak with people going through tje same thing. Thoughts are with u..
I feel for u and everyone going through this and i pray for a peacefull end for all our loved ones. Love to u and hope u can stay strong xxxx
Sending you both big hugs gel68 and GonnaMissDaddy ! I know it is hard to watch and wait as life goes on for you both. Spend as much time as you can with your loved one. If they like music, put some on quietly in the room. If they can eat or just taste jelly, icecream or chocolate, have a tiny bit handy. Read to them. Tell them what members of the family have been doing. Try to keep a happy face! Kiss and hug him heaps! Make sure he knows you love him. Make sure others in the family pay a brief visit to say farewell. Make sure your loved one know you will be OK without him. These were the unasked things i sensed my man wanted to say in his last days.
Finally, make sure the medical staff have an endstage plan that makes him comfortable in his final days. They will know better than you where he is at. The drugs they gave my man did not
precipitate his death, merely helped him relax without pain, reduced his coughing reflex and his cramps, and his anxiety. They will know when to start them as there are signs they can pick up.
I made the decision myself that I would not leave my man alone overnight in his final days. I did not want him to be alone and was aware there was quite a gap between night staff visits. After 2 nights on the chair near him, I left one of my boys with him while I went for lunch. When the nurse visited she noted further change in him and told him I would be back soon. My lovely man then hurried things up and left us just before my return. He was not alone, but I had hoped to be there to support my boy and see my man leave me.
So be prepared for your loved one to do the same or similar if you stay close by. In the end you must do what you think is best for him and for you and for his close family. They may need to lay ghosts to rest. One of our boys did, and I am glad I said for him to come even tho his dad was uncommunicative, as it helped him heal wounds.
Eat and sleep both of you! Sounds like the end is nigh. Big hugs to you both! (( ))
Jen
A terrifying 48 hours...
Nuplazid & experimenting in the midst of a pandemic 
Supportive chairs for people with PSP
Incontinence
