Final stages

Hello everybody,

We had a meeting with a team of doctors etc at the hospital where my mum is being treated for a very resilient urinary tract infection and they have pronounced her in the final stages of PSP.

As we all know, as knowledgeable and well meaning as doctors are, even they don't have all the answers with PSP. He feels she is 10 to 15 years into PSP now but she was only diagnosed 2 years ago. We feel that 10 years is an outside figure and that it is probably more like 8 years. I guess that is irrelevant as there is no doubt that in the last 2 months she has gone from walking with assistance, saying the odd word, having a great appetite and still managing most foods to a skeletal, bed ridden shadow of herself.

The decline started with aspiration pneumonia, now this infection and she is eating about 4 or 5 spoonfuls a meal and seems unable to open her mouth without almost prising it open. She swallows so slowly and mostly she just sleeps. She has lost 18 kg (almost 40 pounds) in about 2 weeks.

It is difficult for us to take this on board because the decline has been so fast! There is a part of us which believes that if we could just get her home, feed her up, get her strength back up then she could get back to where she was before.

The hospital are telling us differently. They say she will never put weight back on, that with a progressive illness, people do not bounce back from infections as they don't have the resources. That they just plateau at a new (and lower) level. They are saying that the best thing to do is not to fit a PEG but to let nature take its course, that she will eat less and less, get weaker and weaker and pass away.

We are so confused and want to do the best thing. I think my dad is leaning towards having the PEG fitted as he would feel so guilty to let her 'starve'. I am trying to think what is best for my mum as I feel he is making the decision from an emotional place, of course he is. It is such an emotion-filled time for us.

The doctors also told us that she will have dementia for certain at this point, but even this, we are not sure of as she cannot communicate with us. We don't want her to suffer and we don't want to give up on her.

What we are wondering is if anyone has had a similar experience and their person with PSP has rallied and generally got a little better (strength, alertness) after having a PEG fitted and gone on to have some quality of life?

Cate

22 Replies

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  • hi cate

    i hav ePSP an dhav opted not to thave a PEG fitted when the item ocmes as i do nto want to be kept going wihtout any qualithyof life

    it si so difficult ot make the decision and i do not feel it is worhtwhile my going on 4 theskae fo others

    sorry not to hav eanyyhting positive eot say but i am thinkign fo you your muim dad and family

    lol JIl

  • I have been reading through past posts on the site - there is a wealth of information already there which answers my question. It seems that some people have experienced the PEG as quite positive and if we think that it will not necessarily prolong my mum's life/suffering beyond what she should reasonably endure, but will make her more comfortable, then it does seem to make sense.

  • Jill, thanks for your insight. I think my mum probably thought much the same as you but she never wrote it down and now we don't know. I think you are right that if we make the PEG decision, we will be making it more for ourselves than for her. It is just hard to make the decision for someone else so you have done a wonderful thing for your loved ones by stipulating your wishes. This is something that I am going to consider doing in the near future too.

    Cate

    xx

  • Cate, I'm not sure this is helpful, but my husband made up his mind after watching some documentary about end-of-life measures. His position is like Jill's on this. Sorry, I don't know exactly what he watched, but for your own sake you might want to look on line for PEG pictures and articles---just so you know for yourself what is involved.

    Bless you as you go through these difficult days ahead.

  • Hi Cate

    I know what you are going through, as our family is in a very similar situation at the moment. Although my Dad is at home with 24-hour care, we are getting to the stage where we have to decide to fit a PEG or not. I do not believe that my Dad would have wanted it, but my Mom will have to make that decision as my Dad cannot communicate with us. It is very sad and I dont think my Mom is ready for this final chapter. I wish you the very best whatever you decide to do.

  • Hello Cate

    So sad, so hard for you.

    My mum is doing it the long way, sometimes she coughs and chokes a lot and can only take half a dozen spoonfuls of pureed food before she is exhausted, and sometimes she rallies and takes a fairly good feed. Her weight is now 34.5kg and I wonder at her ability to survive, she is obviously hungry as her insides rumble like anything. I can't understand anything she says now, and she has just about given up trying to communicate, I sense a patient, waiting mode settling on her.

    We discussed the PEG a few weeks ago, but after reading the posts here, and discussing the risks attached for one so weak now, we decided that the best we could do for Mum is to make her feel as comfortable as we can.

    This is where I am struggling as I feel I could make her more comfortable at home, or with hospice help. I would like to bed bath her myself, (I know I do a good one!) and I would feed her more frequently as you do babies when they take so little volume.

    Mum's skin is so dry and flaking off I feel she needs creams or oils or fluids applied to try to rehydrate her externally. I do that daily when I visit. One of the staff does massage and I asked her if she would massage Mum's skin regularly, paid and in her own time but the home have disallowed that, saying there is a conflict of interest, which I can't understand

    I am not critisizing the staff as I know they are trying hard with low staffing resources, and they are kind. The jobs are done but I feel with some of the staff they are just jobs, there is no finesse. They just don't know Mum and don't have the time to cater for her individual likes and needs. She is left sitting in the lounge for too long when she desparately needs her bed, she is left with food on her chin and lying rigid in her chair, almost falling on the floor. Sometimes there are 2 televisions and a radio on the adjoining sittingrooms, so noisy with other vocal residents vying for attention. My main aim these days is to take in home made soup, local ice cream which is her favourite, and going in at meal times to help feed her and to make sure she gets to bed after her lunch for peace and quiet and rest.

    I'm sorry this has been about me when you are obviously finding life so difficult, but I suppose I'm saying that dignity, privacy and comfort come high on the list of care needs and you are doing your very best to achieve these, no-one can do more than to just be there and care and love, and you are doing all these.

    My thoughts are with you, take care of yourself too. Brenda

  • Dear Cate

    My husband Dave is at a similar stage to your mum, he made the decision not to have a peg fitted three months ago when he was able to communicate. Watching him now fading away and so ill is heart breaking and part of me wants to reverse that decision he made but have asked myself and family for who? therefore I have to respect his wish as hard as this is and pray that the end comes soon and peacefully.for him.

    Very hard decision for your dad and family to make

    Best wishes

    Rita

  • Hi Cate,

    I'm afraid I don't have anything to add to the PEG discussion, knowing that this is a subject I might need to face very soon for my partner. I just wanted to say my thoughts are with you and your Dad and know how difficult this decision must be for you both given the rapid progression of your Mum's PSP.

    Janet xx

  • Dear you,

    I just tried to write you a response. It was not nice. It was not nice because I lost my brother to this disease. I lost him in less than 3 weeks ago.

    good luck

    j

  • My husband passed away in April from PSP He made the decision, when he was able to communicate that he did not want a PEG fitted if and when the time came. After a fall he was admitted to hospital and had a serious bout of pneumonia, we were told that he had little chance of survival however he rallied round but he could no longer eat without choking, he was asked again on two occasions by the paliative team if he would like a PEG fitted but quite clearly said no. He was allowed to eat what he wanted if he could manage but whilst in a hospice he became very poorly and passed away quite peacefully.

    Of course I have bouts of feeling very guilty and ask myself, should I have tried to pursuade him to have the PEG but then I still read the blogs and the forum and feel that if I had pursuaded him what quality of life would he have had - I just feel so sad that he was diagnosed two months before his retirement - my heart goes out to all PSP sufferers and hope that one day a cure will be found

  • This is such a difficult time for you. We were there nearly a year ago. My mother-in-law was literally starving. The form of PSP she has seems to be quite slow. It had become obvious that she could no longer eat in the normal way as it was just too dangerous and exhausting for her. All the options were explained to her and she chose the PEG. We were surprised as her quality of life had become so challenged that we had guessed, quite wrongly, that she would want to be allowed to just fade away. The will to live is astonishingly strong. Even though she was very weak she came through the operation very well and nearly a year later she is still with us. She has even come through the extreme emotional trauma of losing her husband of 65 years. Now, the fact that she is still here brings many challenges to all of us. She has thrived physically. Put on weight, enjoys being fed (over night) and recently has started to have extra Fortisip types of food put through her PEG food by the carers when they give her water and medicines through the day. In fact, it would appear that she has a sensation of taste and flavours from this food even though it is fed by PEG. Chocolate is her favourite. The down side of this is that with the regained strength comes the illusion that she is getting better. As with many PSP patients she has strong legs but no balance. She has launched herself out of her chair 5 times in the last two weeks. She "thinks" she can walk although she hasn't for over 3 years and has carers 4 times a day to help her with all bodily functions. She can do nothing whatever for herself but still insists that she can walk unaided. She is still able to communicate by squeezing our hand or waggling her feet. As a result of tumbling out of the chair so many times in the past two weeks she looks as though she has done 10 rounds with Mike Tyson and has quite rearranged the contours of her head. We are exasperated beyond belief and scratching our heads as to what comes next to try and keep her safe. She has also had repeated infections including an e.coli blood infection that she caught while in hospital! UTI's are a constant threat. She just keeps going anyway. And she still has a wicked sense of humour.

    And so, what I am saying is, of course, there are no straightforward answers. You will have to go forward and choose to do what you feel is best in your heart and head for your loved one. My MIL has had an extra year because of the PEG at a better level of quality that she was having before.

    All best wishes to you and yours.

  • Hi Cate,

    Sorry to hear about your tough situation. My Mum got stronger as a result of the PEG. She was down to about 6 and a half stone in January, and fading fast. Once she got the PEG she got stronger in a very short space of time, and now exercises every day on a cross trainer and a rebounder. Her quality of life isn't great, but I wouldn't say its terrible by any means. The good thing about the PEG as well is that I have been able to fill her.up with supplements of different kinds, and I feel that these have been helping her to get both stronger and saner!

    Personally, I don't buy into all that doctors say, and I choose to believe that the possibility is there for Mum to recover. Maybe Im not being 'realistic', but the hope gives me the strength to get through the day and do what I need to do. And who knows in a year's time what may have changed. Believe me, I do understand the difficulties of it all, but in my opinion, you would be best off supporting your Dad and going for the PEG if he is up for facing that challenge. I just asked my Mum what she thought, and she is also of the same opinion.

    Best wishes,

    Andrew

  • Cate, It is my understanding that a PSP patient can aspirate from saliva so even on a PEG there is a risk of pnumonia. Also, if they gain strength and you begin some small mouth feedings they could aspirate from that. At least that's my understanding. My wife doesn't want a PEG when that time comes. We are not near the end at this point and hopefully have a few years left. My first wife died from CJD (brain virus) and she was kept comfortable with IV fluid (not nouishment) and on a cath with Hospice help and some drugs until the end. Tough decision to ever make but pray about it and then make what you think is the best decision you can make FOR THE PATIENT and not for family. God Bless!!

    Jimbo aka Jim P

  • Hi Cate.Unfortunately, i can't help with the PEG issue, we haven't faced this problem with my father yet.I just want to wish that you soon be able to get your mother home, hospitalization is not good for psp patients.Our neurologist told us in the last visit we had that it has been observed that even few days in hospital are affecting a psp patient badly and i can confirm this from my father's experience, he had been hospitalized for 9 days in March.Best wishes to you and your family, John.

  • Cate,

    My family and I find ourselves deliberating these type of decisions and less important decisions and at some point, be it a family member or someone outside the family will remind us to include her in the decision. My Mom can no longer talk but we ask questions in a "yes" "no" manner and she gives us thumbs up if the answer is yes. Sometimes it takes a little time for her to respond but she always does. Just throwing that idea out there for you, if your Mom is still coherent, consider asking her what she wants.

    My mother has had PSP for 10 years, she did choose to get the feeding tube about 1 year ago. She was down to skin and bones, and with the tube gained weight and is back to a healthy weight.

    I wish you the very very best!! Jill

  • Thank you everyone,

    I hate seeing my mum suffer so very much!! And when you are stuck in the situation, you can't see the wood for the trees. This is why your words of advice are valuable for us right now. Certainly, I had forgotten that she WILL do better at home. It is no wonder she is not eating as she hates hospital food. In fact when she went into hospital I was angry as she declined so much when she last went into hospital.

    Perhaps we just need to get her home and then make the decision about the PEG after a week or so. We will see if we can fatten her up.

    We do ask her to do the thumbs up and down but she is so weak that we get the thumb in the middle. If it wasn't so tragic it would be ridiculously funny how PSP mucks up every attempt at communication.

    The doctors in the hospital have told us that mum does not have the mental capacity to make her own decisions. How they know this when we don't, I don't know... I asked if they could tell from her recent MRI whether her cognitive abilities are compromised and they said no. Only from asking her questions and judging her responses. (???!)

    My mum had someone in her hospital room with her who had CJD. It seemed very similar to PSP but so much faster.Jim, I do feel for you having to go through something like this twice.

    Thanks to all for the positive PEG stories. I think in my heart that there may be little point in prolonging a life without quality but I think that my dad will chose to fit one and I will support him and hope it makes a difference. Maybe PEG's help more when someone is not in the final stages of PSP but lose their swallowing early on. With my mum, her swallowing has been the last thing to go. Maybe that is why the doctors are being so negative.

  • Hi Cate

    I don't post comments very often but do visit the site a great deal and after reading you comments I felt i had to respond as everything you said was a mirror image of our circumstances just a few months back.

    Tony was admitted with aspirational pneumonia in March and was unable to stop coughing/choking. His weight had been decling over the previous 3 months as eating was difficult and very exhausting. After the necessary acute treatment, suction machine, oxygen, he was assessed by speech therapist and it was felt he was unsafe to eat or drink.

    For the first 3 weeks a nasogastric tube was used but this cannot be used long term so the question of PEG feeding had to be addressed. This is of course the hardest decision to make and for some people what happened would be a relief as Tony was able to indicate that he wished the PEG to go ahead, this was by a thumbs up !

    Unfortunately I was not present when the medical staff put this to him as I know that depending on how questions are presented can change the way he answers. Before this disease took hold he would not have wished to continue with the poor quality of life he has but the PEG has allowed him to gain weight but virually nothing more.

    Tony now has permanent catheter and has district nurses in twice a week for bowel regime.He cannot speak, only communicates with thumbs up/down (even that is not always clear), needs his mouth cleaned 4 or 5 times a day as savila still builds up and affects his swallowing/breathing and is totally expressionless.

    Obviously this intervention has prolonged his life but with all honesty I dont think increased the quality at all. I'm sorry if my comments are negative but watching my husband just sitting in a chair or lying in bed all day with no joy or happiness in his life is heart breaking.

    My best wishes to you and your family

    Mars

  • Thank you Mars for this post, I found it very informative. My mum is nearing or entering the last stage of this illness and she has had no PEG fitted so far. My suspicion is that many get the PEG fitted in the middle stages of the illness indeed believing it is the end stage because the swallowing can become so difficult. I think for most the end stage is when the person can no longer speak, walk and becomes very rigid. I think that fitting a PEG at the middle stage maybe beneficial because it avoids the sheer effort and distress of having to feed the person by mouth, but maybe fitting a PEG in the final stages maybe rather pointless if someone is going to choke on their own saliva anyway and have no quality of life. We were also informed by a doctor that a PEG would not be fitted in my mother's case, but I think we will get a second opinion to see what the options are. Seems the doctors are just as split on PEG feeding as the patients!

  • Hi Cate - I've been thinking about your post for the past couple of days and how I might be able to help you. First, I feel for you -this is such a hard time and you are right -the doctors don't know everything. My dad was sharp until the end and he suffered with PSP for 10yrs -just because your mom has lost the ability to get her throat muscles to work doesn't mean she doesn't understand. Your mom probably isn't that far along because 10 -15yrs is outside the survivablity rates of PSP for both men and women. I wish I would have counted how many times I was told that my dad was going to pass and didn't - it was many many times. As far as the PEG - I can only offer you our personal experience. My dad was losing weight and feedings were up to over 90 minutes so you can imagine that we were feeding him all day long - -my father didn't chose to stop eating -he just had difficulty doing it. When he was first diagnosed he said no to the PEG but I have always told him that he could change his mind - -and he did. This choice is not up to the doctors - this is your mother's choice and if she cannot make it or communicate it - it falls on the family - -deeply personal choice - -not a medical choice - -and it will not change the outcome of the disease. With that said my dad was fitted with the PEG and we were able to put weight on him and he was more comfortable --he was just not ready to go yet. We started with 5 cans per day - -but over the course 1 year we reduced to 4 then to 3 - -you get the picture - -my dad also chose antiboitics but we knew eventually antiboitics would no longer be effective. My dad then got really sick - he had a UTI that went septic and he had pnuemonia -with antiboitics my dad survived and came home. But now antiboitics were no longer effective - -4 months later my dad's body could no longer simulate food - -and he passed peacefully and very naturally. There were many times that hospice made me feel like I was cruel for treating him and not just letting him go - -but at the end of the day we have a life to live after our loved one moves on from PSP. If I was going to error -I was going to error on the side of life. I am so glad I did because today I have absolutley no guilt or any second guessing of choices that were made - -I just miss my dad.

    I hope this helps - -you'll know when the time is right.

    Danielle

  • Dearest Cate,

    Not sure I can add much more to the PEG debate but I just wanted to say I am thinking of you all at this difficult time.

    Trust your instincts!

    You are the ones who know and love your Mum the best and I'm sure you will decide what is in her best interests.

    Take care

    LOVE TO ALL OF YOU

    Kathy XXXXX

  • Danielle, thank you very much for that. I think my dad agrees with you as he has asked for the PEG to be fitted. We were waiting to hear if my mum was strong enough for the procedure and she is so it will go ahead on Monday. Posts like yours are making me feel that it is the right choice for us because as you say, we are giving her every chance and I can't bear to see her waste away. I still do have the utmost respect for those who choose not to have the PEG as who knows really, when stuck between a rock and a hard place, which is the best thing to do. I do feel relieved that the decision is made although I know that the road ahead is rocky regardless.

    Thanks again Kathy, the support you offer on here to everyone is so very valuable. My instinct is to do everything we can and not let nature take its course. I just hope its not the wrong thing for my mum.

    xxxx

  • Dear Cate T

    I know only too well the upset anger and stress that this awful condition causes, I lost my precious mum in september last year to PSP at the age of 68, she suffered for just on 16 years and was mis diagnosed at the beginning, throughout her illness she suffered with many uti's and infections and was in and out of hospital many times, we opted not to have the peg fitted when it was put to us as mum was so frail and weighed approx 4 stone, it was so sad we could see in her eyes she non longer wanted to carry on, she couldn't speak, eat, drink or any of the things we take for granted, it broke our hearts as she had been such a strong independent woman and raised 5 children. This illness is one of the cruellest I have came across the hardest thing I agree is watching them waste away, Mum passed away peacefully in her sleep two weeks after her last visit to the hospital as they would not admit her saying there was nothing they could do, we took her home and made her as comfortable as possible and stayed with her 24/7 . It is a rocky road and a big struggle with many down days but I wish you and your family well and to have the strength and courage to cope with the things that this terrible illness brings xxxx

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