has anyone experienced the final stages of this horrible disease. please read below. thank you cathy

[cathy]

my mum is in final stages of this horrible disease. we have been told twice now to prepare for the worst but she has rallied round. she goes into really deep sleeps and her obs get dangerously low. has anyone else experienced this.?

[jillannf6]

hi cathy

no i have Psp but am not at that stage yet

if you look on the Psp website there are lots of entries from relatives/carers who ahve lost loved ones to Psp

jill x

[cathy]

thank you jill. i have found alot of information on this site not necessarily answering my question but its great that i can read about others as we feel so alone as a family. i wish you all the best

cathy x

[LizzieF in reply to cathy]

Hi Cathy

I have been reading your questions/comments with interest because your mum's situation sounds similar to my mum's.

She was diagnosed with PD in 2005 but I had my doubts as the symptoms didn't seem to fit. In 2007 she was diagnosed with PSP. I am her full-time carer and have assistance four times a day from a care agency.

I have now been told that the cognitive part of her brain is gone, she is 'end stage' and depending on her ability to fight infection she could last just a few weeks or a few months. She has been bed-ridden for 18 months now, she had a PEG fitted in April of this year which she had agreed to in 2010 with her consultant neurologist. I was initially against this because I wanted her to maintain her independence for as long as possible, but early this year she started to refuse food, was eating less and less and began to lose weight. So I had to relent and set the wheels in motion.

She cannot speak, smile or laugh and is a shadow of her former self. She suffers with dry eye for which I use hypromellose drops and has recently started sleeping with her eyes open which exacerbates the problem. She has also started sleeping with her mouth open too causing dry mouth and has developed sores on the roof of her mouth. I am using Biotene Oral Balance Saliva gel to relieve this. Today I had to call in the GP (who also works in the local hospice) because mum looked very poorly and had a nasty discharge in her pad. She prescribed Trimethroprim to clear it up. She told me that with each infection mum will become weaker, sleep more and finally slip into a coma.

In spite of all this she has the constitution of an ox! She has bounced back from serious falls and infections several times. I have had flu, colds and swine flu in the three years I have looked after her and mum has never caught anything! It's almost like the body is saying it doesn't want that because it's got enough to cope with! Her heart and lungs are fine but there has been a query about her kidney function.

It's terribly sad especially knowing how she used to be: sewing, drawing, painting, embroidery, tapestry, baking etc. In all this she has never once complained about pain, discomfort or the hopelessness of her situation. She has accepted her lot, she is a very brave lady!

I hope they sort things out with your mum Cathy. It's a cruel disease and no two sufferers are alike. I think you will instinctively know Cathy when it is your mum's time. Best wishes and take care.

[ashav]

Hi Cathy,

Yes we did with my dad. But the thing is there are no set final stages in psp. every one has different final stages. for alot of people the feeding tube , etc is the final stage. I think my dad, an ex airforce officer, had probably in his mind decided he will not wait till that stage. you while his balance had almost gone, he was still walking with the help of an assistant. he didn't want a wheel chair. he did have all the problems, eyes closing for long time, swallowing issues but he didnt get to the feeding tube stage and am glad about that. He loved food. woould have not been happy about that.

for him his last stages were the lack of bowel motions for days together, which built up toxins in his body.

In my opinion, having seen both my parents succumb to 2 different dreaded diseases (PSP and Cancer) , you should have the faith always. never believe this is the last stage. You will make them happier and healthier that way :).

Ash

[cathy in reply to ashav]

Hi ash thank you very much for your reply. im sorry as i hope you didnt think i was cold saying final stage. mum has been in hospital for about 5 weeks now. she was admitted with pneumonia and she with medication came through it. but since then she has had three other bouts of this and each time she goes into a very deep sleep almost like a coma, and we are told by the doctors to prepare for the worst. then if like a miracle mum fights it off, this even amazes the medical teams. this is just as so difficult for the family as we are trying to deal with being told that kind of news to then have to bounce back again. mum is basically bed ridden now, she was advised to have a peg but has declined so is being risk fed so the chances of her choking is very high. its a very hard time for us all and i keep asking if this is normal for someone to go into a coma like state but as the consultant keeps saying he has not treated many patients with this condition therefore is not sure. finding this site has been a god send for me as i can at least share my feelings concerns with people that are either carers or the person.

cathy

[Hidden in reply to ashav]

Great attitude..... my dad also has PSP and we really try have all the FAITH we need to make this life as positive as possible. Support around helps.

[Althea-c in reply to Hidden]

Love you Lee 💛🙏

[Hidden]

Hi Cathy

Not very long before my husband died he wanted to see the Neurologist because he wanted to ask him how he would know when he was in his final phase. I asked him why he felt this way and he said, "Because I feel that I am in my final phase". The Neurologist told us that in his final phase he would fall over more and more and that his speech would become more slurred. I don't know what obs are but he did fall asleep a lot.

I hope this is of some help to you.

Kind wishes

Lina

[Louise-Alabaster]

Hi Cathy - dad had pneumonia and that was how he died. He was so very very ill - could not speak, he hardly moved at all. And his breathing just went very laboured one evening and he never woke up again. It was very peaceful - at least this awful disease did give him a peaceful end - he was asleep alot as well. I hope it isnt the last stage for your mum but make sure you tell her you love her every time you see her xxx

[cathy]

hi louise, thank you for your reply. as i explained to ash above this is a very difficult time for the family. mum is in hospital and has been for 5 weeks. she was admitted with pneumonia and three times now we have been told to prepare for the worst as she goes into a coma like state and the hospital have said each time we are looking at the nxt 48 hours as being crucial. its almost like mum goes into a deep sleep to get rid of the infection and then wakes up again. each time she comes round it has taken its effect on her as she is deteriorating due to lack of fluids etc and with all the morphine she is definitely a bit confused but she is still with us which is great but for her she looks so sad and i think has really has had enough. im so pleased that i have been able to share my situation with people who might be able to share similar things that i can at least share with my family to help us through this very difficult time.

thank you once again

[maggieh]

Hi Cathy and everyone,

Richard my husband died in a neurological care centre, in April of this year after 7 years of PSP. He had had numerous infections in the last 2 years and each time his body became a little weaker. In December and then again in March this year he had a urine infections, the last of which would not respond to oral anti-biotics. Richard did not want any hospitalisation and did not want PEGtube feeding. For the last year his eyes had been almost always shut, he could not speak, walk, his swallowing was becoming more difficult and he was doubley incontinent. Despite this he stayed cheerful with a cheeky sense of humour. The last week or two though it was clear he was deteriorating. Four days before the end, he stopped being able to open his mouth and he got agitated when we tried to coax him even to take a drop of thickened liquid from a spoon. I asked him if he had 'had enough'? He indicated that 'he had'. He then went off into a deep sleep. The head nurse was called and then his GP came to see him. When he showed signs of agitation, and time came to keep him comfortable and relaxed, a syringe driver was got ready with a cocktail of medications. This was fed into his arm through a tube and Hyoscine was added later when the secretions were building in his throat. After many hours, myself, his step-daughter and his two favourite carers and our little dog by his bedside, his end came quietly, quickly and peacefully - just the way he wanted.

No two people ARE the same as has already been said. Usually though, death is NOT a sudden thing. There is a slow decline, when they become more apathetic, weak and sleepy. They tend to drift into a sleeping world more than a waking one.This is what I had been told may happen and with Richard he followed this pattern.

We had spoken with his doctor and care centre about his ending of life wishes two years before. It was all recorded and signed on an End of Life Decisions Form, so at his end his wishes were adhered to (including the donation of his brain and spinal cord for research into PSP/CBD).

I do hope this has helped in some small way, but I know this roller-coaster ride is very exhausting one, for all of you. I myself found it hard to find any reference as to how the end would be, and I vowed if I was able, I would speak out if I felt I could. It was the one thing that scared me more than anything. How would the end be like? Would I be able to cope? Would he choke?... So many questions. Thankfully though, if I can say "It was a good end", it was. His battle was at last over and he is now at rest.

Thinking of you all.

Maggieh

[FranR in reply to maggieh]

Hello Maggie,

Sorry for the loss of your lovely husband.

I just wanted to say that it has helped me reading your comment as Richard's particular path of psp sounds very similar to my dad's - ie he cannot walk or talk at all, and has recently shown signs of his swallow going. I am nowhere near facing up to the end yet, but it has certainly made me aware reading your comment that when the time comes it can be a release. I love dad so very much and miss him every day, even though he is still 'with' us!

Fran

[cathy]

Dear maggie thank you for being able to answer me as im sure it must have been very difficult for you to relive what must have been a really bad time. we have been told today that mum is now on the liverpool care pathway that means she is just being kept comfortable. she drifts in and out and is quite confused now, very sleepy and not really sure where she is. its so hard to make the decision not to treat this but as the doctor has said her quality of life is very poor and we are being kind to her . she was being risk fed but now she is not eating. she also mumbles so we are not sure exactly what she is saying. i just hope for her that this is all over very soon and she is lucky enough to go peacefully as its what she deserves.

cathy

[LesleyB]

Dear Cathy

My thoughts are with you. My dad passed away in June, very similar situation to MaggieH. We we were there with him at the end and we just talked to him and each other, reminisced and made sure he was as comfortable as he could be. It was as lovely an end as it could be with family around him, telling him how much he was loved.

Take care of yourself and I will be thinking of you and your mum

Lesley x

[Fiona_McL]

Dear Cathy,

I'm thinking about you and your family now, and will be in the days ahead. My mum died from PSP 4 weeks ago- pneumonia, gently and pain free in the hospital. She'd been in a nursing home for 2 years, PEG fed for nearly a year.

Look after yourself

Fiona x

[Jan_K]

Thank you all of you for being open and honest. Although Mum is deteriating gradually I hope we still have her with us for a while yet. Your honesty has helped me so much and it must be so painful for you, but it is helping me to be prepared for what is the inevitable.

Maggie...thank you so much for your help. Where do I get anEnd of Life Decision form? Mum has said she doesn't want the Peg but we have nothing written down and it has really made me think that we must get things down in writing.

Cathy...my heart goes out to you.

Fiona...big big hugs again xxx

[maggieh]

Hi Cathy and Everyone,

Just popped in to say it was The Liverpool Pathway at the ending of his life that Richard was on too. It worked really well for everyone concerned. Richard was calm and comfortable and free from any discomfort right through to the end. I too was kept fully informed at all times as to what was happening.

Julia, my daughter and I sang to him as we held a hand each (awful voices), played him his favourite Neil Diamond music, the dog lay quietly on the bed by his side and we laughed as we reminisced about happier times when the kids were small. We told him jokes and hoped he could hear us - I'd like to think he could. Because we tried to be relaxed and not alarmed he must have been calmed too so that he quietly drifted away when he was ready; maybe he thought we wouldn't notice, bless him.

And now, my thoughts are with you Cathy, your mum and your family. It's a difficult time, but one we know is inevitable. Try and stay as strong, as she has been.

Love

Maggie

[cathy]

hi maggie can you please tell me the name of the hospital you dealt with.our local hospitable today has said that mum has improved again and taken off the liverpool care pathway as she has picked up but now is not on any medication the doctors are totally confusing my family and we don't know where we are with all of this.three times we have been told she is dying and three times she has rallied round which is great for us but my poor mum is suffering now so much which is cruel. sorry but this is so difficult for us and i would really appreciate it if you can tell me where your dad was treated as perhaps they can help our local hospital.

thank you cathy

[maggieh]

Hello Cathy,

Richard was NOT in a hospital, he was a resident for the last two years at Pathfinder's Neurological Centre, in New Ollerton, North Nottinghamshire. (Check out their website) They were recently awarded three stars of excellence, by the Care Quality Commission. The Manager of the Care Centre is Dr Angela Nall.

As well as nursing staff on each unit, the Head of Carers, had also done a course at Nottingham University on 'End of Life Care' (The Liverpool Pathway). Carers were rotated too, to assist in monitoring and keeping him comfortable. What a team, they knew exactly what to do and did it in a quiet, well ordered, dignified, caring and respectful way.

When he was first admitted for residential care just over two years ago, he did see a new neurologist at a nearby hospital. I believe he went a couple of times, but then the hospital seemed to forget about him. I spoke to his local GP and he agreed that palliative care was really all that could be given. There were always plenty of activites going on at the care centre, he loved being in the thick of everything, he was taken out every single day (weather permitting) to Tescos and the other shops - in fact he loved it there. If Richard had any changes in his condition or had any problems, I used the PSP Website, the PSP Information Pack or I used to contact Maggie Rose our PSP Specialist Nurse for advice. If Maggie Rose suggested a particular medication, I passed this information to the nursing staff and they told Richard's GP. (They did ring Maggie Rose themselves a couple of times to verify a particular drug name and dose).We found this really worked well. Generally speaking we found hospitals were pretty useless. I found so many medical professionals still hadn't heard much about PSP. I was having to tell THEM!

It's a difficult time I know, but I do hope you are able to stay strong for your mum's sake. (As was pointed out to me), your mum can still hear what is being said, and understand all that is going on - even if she appears not to. Inside she may be really frightened so if you seem calm and relaxed - she will be too.

Thinking of you,

Maggie

[cathy]

hi maggie thank you once again for such an informative reply. im inclined to agree with you about the hospitals. they are good for making people better and don't really understand alot about ongoing support / care etc... my poor mum is like a ginuea pig they seem to experiment with. one day she is on a concoction of medication and the next when she goes into deep sleeps all this is withdrawn and she is just given oramorph and the medication for secretion in her throat. what we experienced the other day was withdrawal as she has again come back to us but in such a confused state. all day yesterday she was being sick and had a horrible headache, its all so cruel and i feel alot of this is because as good as the staff are they do not understand or have knowledge of caring for someone with PSP. we were told yesterday too that she is going to be moved to the local hospice for a couple of weeks to try and get her medication sorted and hopefully help her and our family mentally with what has been happening over the last three weeks. i have checked the site you mentioned. we dont have one of those homes near us as we live in essex but we do have a care home that im sure with guidance will be able to support mum. im not aware of a local PSP specialist team / nurse. we do have parkinson nurse but to be honest i have not found her very useful, do you think i could contact the nurse you mentioned in your message just to see if she can point us to anyone in our area, i could also just ring the home you mentioned but if you could perhaps you could give me contact details for maggie rose?

thank you

cathy

[maggieh]

Hi Cathy,

It sounds like you haven't yet joined the PSP Association (free to people with PSP/CBD and their carers) ? Could I suggest that you do so without delay as you will get loads of help and support from them.They will also send you a PSP Information Pack, details of your local support group and the telephone number of the PSP Association's Specialist Nurse who will cover your area. Parkinson's nurses are just that- Parkinson's nurses. As we all know this disease of PSP usually mimics PD in the early stages but then goes off in a different direction. Whilst Parkinson's Nurses may know the basics, they don't really know PSP in depth and that hospitals generally knew very little. I, like you, thought my husband was being used as a guinea-pig, so I decided to find out all I could for myself via the internet and through joining the PSP Association.

Maggie Rose, who helped to form the PSP Association, has now retired and another nurse has taken over her place. However, you will be told who your nurse is and given her telephone number. She will then nearly always be available to speak to you - but if they are busy - you can always leave a message and they will call you back. You can ask them them the silliest of questions and they won't mind. Even if you are feeling upset and just need someone to speak to, they are there.

By the way, one of the drugs they give for helping dry up secretions in the throat is Hyoscine and in a lot of cases, it makes people hallucinate and confused. It does its job but that IS one of the a side-effects. Morphine (oramorph) too can make you feel drowsy, nauseous and often causes headaches. Richard was given another drug whilst on morphine, to counteract that feeling of nausea.

I think you will find her care will be much better from now on, now she is going into the hospice. Realistically, they are geared up for looking after people like your mum and they will know how to keep her as comfortable and as painfree as they can. They are so supportive to families too. I hope all goes well and I shall be thinking of you over the next few days and weeks, as I'm sure many of us will who read your postings.

Love

Maggie

[maggieh]

Jan K

Hello Jan, You were asking where we got the End of Life Decisions Form from? Within a few days of Richard moving into the Care Centre, we were very sensitively approached by the Manager who said she had heard that Richard had clear ideas on how he wanted the end of life to be. She brought in the forms and read through them with us and together we discussed all the points raised. Richard was given time to think things over and when he was sure I helped him complete the forms. We went to visit his GP who read it, asked Richard if he was sure and if the decisions were his own? Richard said "Yes" they were, and Richard and I signed and the GP signed too. The Care Centre Manager also signed (I believe so, I forget?) We were each given copies and the East Midlands Ambulance Service were notified too and a copy of the End of Life documents were scanned onto their computer. After that the forms were put on one side until a later date.

During the last year, when his health was noticably declining, I asked Richard every month or two if he had changed his mind about anything and in particular, "Did he want to change his mind and have a PEGtube fitted when the time came?" and he always said "NO!" When he couldn't speak, he would signal with a thumbs down.

Hope this has been of help to you.

Best Wishes,

Maggie

[SuzieQ]

Hello everyone.

I felt such sadness reading the above comments and my very best wishes and love are sent to everyone concerned. You all show such strength in the way you handle this massive challenge and I sincerely hope that when I have to face these more advanced problems with my husband, I will be able to deal with things as positively. My admiration goes out to you all and you should feel truly proud of yourselves for the way these sensitive issues are being handled.

God bless you and your loved ones.

Take care............SuzieQ xxxx

[Annette-in-Colorado]

We are at about mid stage of the disease. Have been reading books about the loss of a loved one. Attended a workshop given by hospice. They described the last few days of life. It sounds like these sleep times will just keep getting longer. I am concerned about being overwhelmed at the end. Have done the things, wills and etc. We have been intouch with our pastor. Now I am completing the paperwork for tissue donation. Want to finish all that I can in advance. All anyone can do at the end is be there and love them. We have decided to let it happen as nature shows us the way. Nothing extraordinary will be done.

[LeighaAnne in reply to Annette-in-Colorado]

We too are in the last stages for my dad. We do not now what each day brings. He has had this disease for almost 6 years now. I would love to talk to you more about it.

[PSPA_JillL]

Just read through these brave and honest entries, just wanted to add don't forget you can call your PSP nurse if you want to talk through any of these issues.

[Antoinette]

Hi Cathy and everyone,

My father passed away in January 2010. By the time he went into hospital he had been peg fed for 6 months, could no longer walk and his vision was going. He was admitted with pneumonia on 13 December 2009. Although that cleared, he contracted another infection and they couldn't really find where it was coming from. His condition went up and down and he got quite delirius at times but thankfully he was actually quite happy and animated in his fantasy world. My sister came over from Australia in January and the doctors told us there was nothing else they could do for Dad so we agreed to start him on the Liverpool pathway and called the priest for the last rites. At the time we were praying by his bedside he was unconscious and weren't sure he would make it through the night so were very surprised to find he had rallied the next day and was chipper and chatty. I panicked somewhat and wondered if we had done the right thing starting him on the pathway but the palliative care specialist nurse said it wasn't unusual. Although he was bed bound he had this sensation that the bed was rolling toward a lift shaft so was prescriped anti halluconegenic drugs and others to make him comfortable. As I left him that night I said I would see him tomorrow to which he joked "is that a threat or a promise?" Those were the last words he said to me. The next day my sister, husband and myself sat vigil by his bedside and it was clear that his body was breaking down and it was nearly time. I had read of many situations where people who are dying wait until their loved ones are out of the room before passing so, before leaving the hospital that evening, I told Dad what a great dad he'd been, how much we loved him and that we were ok so he should get himself away whenever he was ready. He died at 11pm that evening with a friend of the family who is a nurse by his side.

As everyone has said, all experiences are different but that was our in case it helps.

By the way Dad was at University College Hospital in London and they were absolutely marvellous.

I wish you all the best Cathy. My thoughts are with you and your family.

Antoinette

[jennifer-nind]

Hi Kathy

How are you coping?

Ray's final days were very peaceful, he was in a nice care home and the local Macmillan team had been inattendance and he was having liquid diamorphine through a syrenge driver in his hand. The end was quick, calm and very peaceful, sadly I was not with him right at the end, but I did my best.

He passed in April 2010. I am now helping to set up a support group in my local area for PSP patients and their families.

It seems like a distant bad dream - PSP and eveything that went with it. Strange feeling.

God Bless.

loved Jenni

[LeighaAnne]

My dad has had this horrible disease for almost 6 years now. It is true when they say progressive. We never know what each day brings. I would love to talk to anyone who is going through this too.

[Hidden in reply to LeighaAnne]

Hi LeighaAnne, my mother is in the final stages of PSP, She has had this since 2009, misdiagnosed with Parkinson's first, then PSP in 2013...I would love to know what type of symptoms, that other people are experiencing, I fear the end is near, but dont want Mom to suffer.........this is just an awful dreadful disease.

[LeighaAnne]

My dad has had this disease for almost 6 years now. I can't even begin to tell you what we have been through.

[nannygoon]

Enjoyed reading all these replies, and have had great comfort and help thank you every one. My sister (80) has had PSP for about 4 years she is in full time nursing care. Not communicating now and has eyes closed most of the time has a few episodes of slight choking and not eating very much now. Very sad to watch as we don't know how she is feeling Just pray she has a peacefully end and didn't suffer much more.

[pamelachinniah]

Yes Cathy - My 82 year old husband was diagnosed with this cursed disease four years ago. He lost all his faculties slowly and has been in the best nursing home in Hoylake in the Wirral and has come to the stage where he has stopped eating and is on fluids which he is struggling with. He cannot recognise the family nor speak as the tongue muscle does not work anymore. All we are praying for is peace for my husband.

[Hidden]

My beloved dad passed away on Christmas Day just after his grandchildren had opened their presents. He was sat in his chair and didn't suffer he just fell asleep. He had the illness ten years I can't believe he has gone xx

[uno2eve]

my husband has psp. he was diagnosed in 2009

[roxiemcgregor]

Hello Cathy and everyone

I am presently helping my roommate with this horrible disease. I don't know the end stages. He recently has aspiration pneumonia and now has a peg tube. Still walking with a walker but getting weaker. His eyes are bothering him and are watery. Sleeps quite a bit now. He has had bladder infections and always has mucous in his throat. He uses a suctioning machine to help with this. I am feeling he is getting close to end stages but he is stubborn and insists on trying to help himself as much as he can. Other than that I really don't know much about what to expect. I hope he will pass in his sleep peacefully when he is ready. Contact me anytime for support.

[Robbo1 in reply to roxiemcgregor]

Hello Roxi , my husband is at the stage of PSP described by you seven months ago. I am wondering, what has happened since then? Rx

[Judierhinson]

I am so sorry I have experienced the same. My father's wife called pin hospice and after six weeks she killed him with the drugs hospice left her. Do not let them give her Seroquel what does proven to kill an elderly person it is a very deadly drug don't let hospice or anybody else give it to her

[2660Carol]

Hi all I just found this site sure needed it 9 months ago my Husband Ben also died from PSP disease He got told 6 years ago he had dementia with Parkinson but 3 months before he died he was given the disease PSP he was with Home Hospice and I took care of him for 3 years at home then 10 months before he passed on he entered a nursing home but the month he died in Jan 2017 I brought him home he died with family around him the last month he went down hill quickly swallowing got worse talk with a slur he was on a catherter for 2 years bowels didn't work properly completely bed bound the last month of his life he quickly went down hill to the point of not eating the last 10 days nothing yes he did have an altered state of consciousness like he was with us and then not with us this disease is the worst to have it takes all your being and there caretakers heart so very hard for the patient with PSP and the loves ones watching the disease take away there whole being thank you for listening

[Higgins1967]

Hello Cathy just like to say I am so sorry I have been with my brother start to finish he died on 27 July at 6am it was the worst possible thing I had to see he was only 58 years old it is a horrible daesie and it has effected so much just be strong and have people around you where I am on my own .thankyou hope things hopefully get better .michelle x

[raincitygirl]

Dear Higgins,

I believe you're new to the site: Welcome, although I'm sorry we weren't here with you when you were going through the struggle with your brother, and through his eventual death. I lost my loved one (husband) in July as well. There are quite a few of us who are "survivors" who still check in on this site, as we've built a strong and supportive community here.

Peace and healing to you XXX

Anne G.

[victoria54]

My dad was diagnosed with Parkinson's disease his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,am highly recommended this ultimatelifeclinic. com to anyone who needs help.