Sorry to ask such a morbid question but someone in my family who I am extremely close to has PSP and they have had it for a long time (i can't actually remember what year they got her diagnosis but it was at least 2016 as I can remember that is when they surrenders their driving licence)
They are unable to speak, can only just move their hands but when I say only just - they are sporadic movements. They have just started to refuse food and drink.
It is breaking my heart that they must be suffering so badly. Does anyone know what the end may look like? Like what signs to look out for so we can ask family and friends to say their goodbyes?
Thank you
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ilovedogs7
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Not morbid, quite necessary to consider what the future holds. However, there is no rule about this. People with PSP die from various immediate causes, like injuries from a fall, stroke, heart disease, sepsis, or cancer, but pneumonia is a more common cause, as swallowing problems can cause aspiration of food or drink.
Sometimes the cause is “failure to thrive,” which may appear as a long, slow weakening leading to eventual unresponsiveness, unconsciousness and death.
Refusing nourishment is how my loved one chose to go. If that is what is happening, then you might consider calling friends and family to say goodbye. Too soon is surely better than too late, and it is better to have people visit while the family member might be able to appreciate seeing them. Maybe not framing it as “saying goodbye”? Just a visit?
As far as my experience, my guy, 71, decided to refuse even water, and died in 10 days He slept in his reclining wheelchair in the sun some days. He gradually began sleeping longer, ceased to speak or respond, although he could hear. People visited and spoke to him. He listened to distant relatives on the phone. Music relaxed him. He died at home with my arms around him.
I’m wishing you and your family what comfort there can be at this time.
My loved one died very similar to easterncedars, but instead of refusing food and drink, he could not open his mouth anymore, even though you could see him trying, as his mouth sort of twitched. He could take his pain relief either, so district nurse came and put a cannula in, he lasted 8 days, was unresponsive though awake and starring, breathing changed the day before and became faster and shallow. He died when I had popped out for 7 minutes to walk the dog, he was very peaceful.
Hilove7dogs, I'm on the other end of the discussion. Have had PSP 5 yrs, and am still social and driving. Its starting to bite more recently, so I very aware of the end state. I'm 81 and have been in coma and near death at age 22, and my partner 71 has been very close to death several times. Neither of us has any fear of death ...it's just a changed state of being. Its often far worse for those caring/grieving than those who are just getting on with 'moving along' in their lives. After all we all will die, so one day you too will take the plunge into a new 'life-adventure'? Do you have a 'faith' (any sort) - I think having some kind of life framework is beneficial. And its not morbid! .... PLAN YOU OWN END SO FAR AS POSSIBLE. There's making a Will, also a Living Will (to tell people how YOU want to be treated ain case you step under a bus tomorrow, and when the medics can pull the plug.). Just take charge of your life .... and enjoy doing so. Ever heard of "Death Cafes'? Again not morbid ... but makes you look at the reality of life and death, with a few laughs on the way!
This is a bit of a ramble, so apologies. Remember PSP stays for Please Stay Positive! So enjoy the sunshine, and keep that pecker up! love and blessings to you. Timbow.
Malvern Worcs ..... not far if wearing ur 7-league boots ..... like they used to back then in the old stories! I love hugs and am still un-jabbed. You? Cheers Timbow 👍
my personal experience is when they stop taking in food or water, it’s not long before the end. My husband took three days from that stage. So yes, I would get anybody that wants that final visit now. The one thing I will say, it is the only thing that PSP does nicely, if there is such a thing. Death is normally very peaceful. I hope it is for your loved one. My thoughts are with you at this terrible time.
thank you Anne. I’m with her now. She’s comfortable I think. I’ve given her a hand massage. It’s the only thing she ever wants me to do. I must remember more hand cream for next time!
Hi everyone. I spent 3 hours with her yesterday. I can usually only do an hour and half max because I have a couple of chronic illnesses and one is a spine condition so I can’t sit in the chair provided for long but I powered through it. Was worth every second.
She’s got the start jawlock now. The nurse in charge told me and I noticed it because I put lip balm on her (I usually give her a full pamper) and she couldn’t open her mouth to do so and her lips have kind of turned into the mouth if you get me?
I spent a large portion of the day just ugly crying. I don’t understand why. Why her? She’s spent her entire life putting everyone else before herself. I know everyone says that about people but she genuinely did.
I want to swap places with her but even if that was possible she wouldn’t allow it.
This kind of thing is why I don’t believe in a higher power (god) because if they exist, why her and not someone who is evil? Paedos, animal abusers, people who take other lives. Why?
Sorry to rant. I’m just beginning to struggle. I’ve coped so well until now. I can’t break down in front of her because it’s not about me. It’s about her and it’ll break her heart if she saw any of us struggling.
My experience is similar to Heady's and EasternCedar's. My husband just didn't want to get out of bed one day - very unusual for him. By the next day, our Palliative Care doctor advised that it was the beginning of the final phase. He stopped eating and drinking and lost consciousness about 2 days later. In total, he lasted 12 days from the Palliative Care doctor's first visit. She inserted a syringe driver which slowly administered meds to keep him calm and pain free, but did not hasten his journey in any way. The last days were very calm. Lots of friends and family came to be with him, and I had time to stop caring but just lie with him and be. I gave him a final shave and hair trim, and a day later he passed very calmly and peacefully with me and his son in the room.
PSP Warriors can pass from many reasons, but his particular passing gave some healing to the journey. After all the struggle he endured, he was released.
One thing that really helped is that we had confirmed his end of life wishes many months prior. Having the certainty of what he wanted made the whole process much easier and simpler. I didn't have to second-guess any decisions and could give him the final gift of carrying out his wishes.
One can type ‘end’ into the search box, and filter results to ‘My Communities’ to limit results to the PSP Association, and see various accounts of end stage / end of life. Though each person is different, patterns emerge. The information is overall reassuring in that it helps one process and anticipate to a degree.
My husbands end was dreadful - he went to hospital with Covid and they rang tp say he could no longer swallow. All food and drink was withdrawn and he had quite a long lingering death which still haunts me.
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Difficult question about the end
Love you lotses dad xxx
Nearing end stage?
What we don't know
