My mum is getting worse, neurologist said in final stages. Mum lives in aged care and requires assistance for everything. She rings bell on averages 6 times a night for toileting.I can no longer have for a sleepover as it's physically hard for me.
She asked me what her end will be like, I just said it will be peaceful and painless and she will get to see my sister and her husband, as I don't want her focusing on that and getting her anxiety up.
Trouble is, I don't know and how can I. I fear choking.
If not too painful, can anyone tell me if aspiration is painful on PSP patients? And what your loved ones end journey was like.
Love and healing to all. X
Jules
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My lovely Dad died of aspiration pneumonia. The episodes of coughing and choking stopped in his last months as he lost his cough reflex so all his aspiration was silent. At times this was uncomfortable but he never indicated any pain as such.
Being honest, and I don't know if anyone else would say the same, the PSP seemed to reduce his pain perception. I don't know if it relates to the apathy experienced or something else.
Regarding the pneumonia, it was his first bout of aspiration pneumonia and it was very very quick - just 24hrs. It was difficult to see how quickly he became so very unwell, however he was kept comfortable with medications to help with pain, breathing, secretions etc.
Please feel free to ask me if you have any questions.
Oh God, I suffer from PSP and reading the replies frighten me to death. I see you’re in Australia. Not being insensitive, I believe euthanasia is an option in all states. My daughter’s fil had MND and recently chose euthanasia, rather than deteriorate. I think, although very difficult, I’d prefer to have that option
Sorry to hear this but try to keep positive - everyone’s psp is different… my mum (84) was diagnosed 2 years ago & we’ve feared the worse since with frequent falls, bowel issues & need for carers twice a day. But she definitely seems to have ‘plateaued’ & we’ve just spent a lovely weekend away with the family where she was even getting in & out of mini buses - with lots of help - & sitting at the table without her wheelchair 👍🏻 We don’t know how quickly this disease will progress as inevitably it will & she gets incredibly tired, but we’re still trying to enjoy each day while we can. Hope this helps a little. Nx
Hi NicolaD15, My mum was diagnosed about the same time and the decline has been rapid, that it seems longer for so much to have deteriorated with her health and mobility. I hope your mums decline is slower. She cannot keep her eyes open, yet cant sleep in the day. Nurse said for her constant desire to urinate throughout the night, there is medication that can reduce the need. Would lessen her amount of falls also.
Hi Diggerandsam, I am so sorry that you are going through this. I would choose that option, I would want to save my family from going through what I have been with mum and if I am just laying in bed, unable to assist myself, then rather go for the long sleep. Mum wants to donate her brain after she goes, but wonder how complex that journey will be to find out.
You can donate your brain in the UK. The Queens Square Brain Bank specifically supports PSP and CBD. Details at ucl.ac.uk/ion/research/rese.... My mum did it. There was a simple form and we had to let the nursing home know. When the time came the brain bank people were absolutely lovely. I'd strongly recommend people to have a look and consider it. Even if you've signed the form you can change your mind. It's best to sort the form as soon as possible.
I donated Mike's brain 8years ago. The brain bank at ULCH did it for me. They came down to Torbay Hospital. And organised it. It has to be done very quickly. I had a beautiful letter of thanks . It is what they need for research. God Bless x
So sorry you are going through this. My husband was in hospital for the last 5 days before he died. He received what is called "comfort care" which means medication for pain and anxiety, although he was not sedated. The choking episodes stopped because medication dried up the excess mucus and saliva. There was no intrusive checking of vitals or attempts to feed him, but gentle care of his needs. He slept a lot but we also had many hours when our son and I talked to him and each other, reminiscing, reassuring him. At the end he just gradually slipped away. It was peaceful and without pain. I hope the care home has a palliative team or plan in place to ease your Mum's worries and condition and support you as well.
Hi Purrlie, I have already spoke to the aged care home and they will put the palliative care in place when they think she is there. Dreading the end, just hope it is swift and peaceful.
Thank you for replying to me and sending that big hug x
I have only just seen this post and your circumstances may have changed, butt this is how it was for us. .My heart goes out to you. I lost my mother two years ago and my husband who had PSP, six years ago.Both had calm and moving deaths.
My husband was in a care/ nursing home for the last seven weeks of his life..
Towards the end, his eyes were closed and there was little response.
Despite being peg fed and it being only water, he began to choke and it was decided that nourishment should cease.
The home was very good, but the doctor discussed with me and my family , whether he should go into hospital for intravenous fluid which would give him a few more days. My husband hated hospitals , having spent many times in them.
At that time, he was comfortable and cared for in his own room and could have visitors all day.
We decided to keep him in the home.
For a few days, my three children and myself sat by my husband's bed.
My son and I stayed the night one night as we thought he was nearing his end, but he wasn't.
The Home rang us early one morning to say that my husband's breathing had changed.
We hurried over there, my husband's sisters and partners visited him briefly and there was quite a few of us in his room, fitting, as my husband loved parties and people
After they had gone, my children and I sat around, my daughter played her guitar and we quietly sang Amazing Grace and "Jerusalem", the latter being a hymn that years before, my husband always sang on a Sunday, after church and before going to the pub for a pre-lunch pint.
As we sang , I held my husband's hand. I suddenly noticed a change and we all gathered around my husband, telling him how much we we loved him, my children saying not to worry, that they would look after me.
Then my beloved husband gave two, long breaths out and peacefully left us.
I trust that your Mum will quietly slip away. I pray for this and for you. Rx
Oh Robbo, thank you for sharing. I am sorry for your losses, yet comforted by your description of your dear husband's passing. How beautiful for him to have such love surrounding him.I have hope that my mum's final journey will too be as painless. I will refuse peg feeding when time comes. Just so damn hard being the only child and no partner myself. I feel my work being affected lately and concentration slipping. I trust this is stress and not the start of something similar.
The hardest road I have travelled and I've had a few.
My husband chose to have a Peg when he was still at home. It gave him seven more months of life, but in your mother's case, I think you are right in not having one . It is hard to watch a beloved mother in failing health .
My mother died of a brain hemorrhage after a fall . She was 100 years old.
Once again, myself or my children were with her, in a room at the hospital, for a week.
We kept her her mouth moist, but no other nourishment was given as she was comatose.
My Mother had a great faith and my daughter had put a live programme of a Mass on the tv. Amazingly, it was the feast of Our Lady of Sorrows and the priest gave a sermon about losing a loved one.! So appropriate.
As the congregation on TV went up to receive Communion, my Mother's breathing changed and she quietly left us and was at peace.
Like you, I too, am an only child.
It was hard having to deal with two, fairly close deaths of much loved people and the aftermath of them. Only children are usually strong and resilient as they have had to be, having no siblings.
You have a lot to deal with at present so don't beat yourself up if you make little mistakes.
There has been no genetic link found with PSP, so please don't be anxious about this possibility .
Your mind will be all over the place, but try not to get too anxious about anything .
You have to take care of yourself too, so try to live in and deal with, the moment.
Worry destroys confidence and doesn't help the situation .
They say that hearing is the last sense to stop working. We noticed this by my husband's reactions.
If your Mum becomes unresponsive, you can still, for instance, talk to your Mum and reminisce about happy times or talk to her about your current activities or those of people you both know.
I really feel for you , this is not a good, or happy time for you.
If you have an employer, keep them in the loop as to what you are dealing with at the moment.
You love your Mum, it is apparent in your email. that you are a caring, loving daughter.
Your Mum will know that she is cherished and that she has you to make sure that she is cared for well.
That in itself will be reassuring for her.
My very best wishes to you both, and a big hug too. Rx
I am sorry that you are going through these difficult and difficult times. I have sent you the information I have about the final stage of this terrible disease via internal chat.
Thank you for your time Luis, what a full account of your mothers passing, that was helpful. At least I will know the signs to look for. She has just become a great grandmother for the first time, so it is tinged with sadness that she cannot hold her on her own. I do what I can to reassure her all the time that she will be remembered and missed dearly but will see her on the other side. Another 2 falls yesterday, balance is just gone and her feet are the bluish color now.
I can only hope that the donation of her brain will go in some way to researching this dreadfully incapacitating disease when her day comes.
Jules, I lost my beautiful Mum Poppy on the 31st Aug 2020 from PSP and no-one told us what to expect. In her last three months, her patterns changed. She began sleeping more and freezing more, unable to move at times. She became unable to stand or walk and started keeping food in her mouth not eating. She had stopped communicating and was now becoming limp. Once she was bed bound and not moving and importantly not eating, it was unfortunately only a matter of time. She survived two weeks without eating and passed peacefully in bed while my sister and I were holding hers hands. The hardest journey and I’m still struggling with it.
Hope your Mums is painless and peaceful, still hopeful that a cure will be found!
Hi PSPSOULA, Thank you for sharing your journey and thankfully your mum is at peace now.I think in sharing we are not only helping others but also ourselves. Being a witness to our loved ones suffering is painful and that helpless feeling that we cannot relieve their distress is ever present.
Thanks Jules, you’re the first person I have ever responded to on this site as your story resonated with me and I wanted to offer you something more than I had which may assist. Best of luck to you and your Mum ❤️
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Uti and the hallucinations 
Psp and cataracts.
Advanced/end of life stage
My mum is 70 and has PSP 😢
