Hi all i am new to this site but believe my mum when she was first diagnosed with PSP 18 months ago would post regularly with advice and her experiences.
This horrible disease has unfortunately stripped her of her mobility, speech and independence. She was due to be going into hospital this week for a PEG as swallowing tablets and meal replacement shakes has become more and more difficult and she has lost a considerable amount of weight.
Unfortunately She was rushed to hospital this past weekend as she wasn't responding to any of us and and her sats were low and has now also got Pneumonia.
They are going to still insert the peg tomorrow. My questions are has anyone dealt with anything similar and sorry to be morbid but the probable length of time she may have left.
Thank in advance
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At diagnosis my husband was told he had 5-7 years. He died 6 years later. He had a PEG fitted 10 months before he died after deciding he didn’t want to be fed anymore. Your mum sadly also has pneumonia. Having the PEG fitted means she can be fed so she should gain weight and receive enough nutrients to improve her condition but she will also have to fight the pneumonia. If she survives the pneumonia she may still have quite a while left or pneumonia may take her quickly. None of us know when our time will come do we. It’s so hard not knowing, wondering but take each day as it comes.
I’m sorry to hear about your mum’s unexpected trip to the hospital. It’s such scary times now and I am glad that you reached out to the group. I don’t have much to add about treatment but I’m hear to lend an ear, as we all are. I’ll be thinking good thoughts for you and your family. Sending hugs!
My husband was in a similar situation and taken into hospital and offered a peg. We had discussed it long before and he had made the decision that he did not want to be kept alive when he felt his quality of life was insufficient. He still didn't want a peg. He came home after a week in hospital and I nursed him at home with the wonderful support of the hospice. He died 7 weeks later when he refused to have any more food . He had no pain and had a peaceful passing.
Its a hard time juggling these decisions I lnow. Love from Jean xxx
My husband was like this for a few months before he passed away it was always so up and down with bouts of pneumonia. He had a peg which was a godsend as his swallowing was so bad he would never have managed to swallow a tablet. He was also unresponsive quite often and this was usually when his SATs dropped. He had respiratory issues and it was a fine line balancing the amount of oxygen to give him as he wasn’t able to get rid of the carbon dioxide so it wasn’t just a case of pushing in more oxygen. It’s so difficult and I really hope your mum manages to fight the pneumonia off and then I think you will find the peg really helps, it looks as though it is uncomfortable so don’t be alarmed as it isn’t I was always asking Steve particularly when I was cleaning and turning it but he always said he couldn’t feel anything. Thinking of you
My dad was in and out of hospital from November 19 and past away early March 20 from pneumonia. His swallowing and mobility deteriorated quickly during this period. Discussions with the medical team, especially the hospice nurses, we decided a peg was not the best treatment for him. He was catherterised and constantly pulled the tubes. The enjoyment of food was one of the last pleasures he had.
Your family and medical support will workout the best approach. Keep talking to each other, everyone is different, with no right or wrong way.
I wish you and your family well during this very difficult time. All anyone can do is their best and with love and compassion, it will be okay.
My husband opted not to have a peg, which I respected. That being said, some things to consider:
1) our neurologist's guidance was to ask whether quality of life was high enough that prolonging things with a PEG was worthwhile, or whether it would artificially prolong a quality of life that isn't 'worth it'. This is incredibly personal, with no real right or wrong answer except what you agree between you.
2) It doesn't mean that if someone is on a PEG, that they have to stop eating. I have heard of cases where the PEG is there to ensure there are enough nutrients to keep the PSP warrior strong, and they can then eat for treats/taste and enjoyment as opposed to all the pressure to get enough nutrients in via feeding.
I'm afraid no-one can answer your question as to how much time your Mum has. It is preferred that PEGs are fitted when a patient is in better health as the prognosis is then better. But you are where you are. Check with the Drs what they think the prognosis is. One hopes they wouldn't suggest still going ahead with the procedure unless they felt your Mum would benefit.
Wishing you strength to get through this difficult time. xxx
Hi. Welcome. I am glad that you found this site but sorry that you had to do so. You have already had some very helpful replies all of which I endorse. It is not morbid to ask things that other people just do not like to talk about, that is what this site is about and you will get some really honest answers. I hope that your Mum will be able to fight the pneumonia and that you can visit with her even if only through technology. You can only take one day at a time right now so my thoughts go to you and your family and a big virtual hug. AliBee.
The old bag was in a similar state four years ago, but after the peg was fitted she put on weight and has not had these problems since. There is no set lifespan , it is just about fighting anything that comes up and keep going as normal as possible. Just laugh together when things happen.
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