Since PSP was suspected (now confirmed) Mum has not wanted to know what is going on.
Had she had cancer then I suspect that she would have been given all the information and choices she could make automatically.
I have power of attorney so will make her choices if necessary, but truly believe she should make these herself. Peg feed DNR’s ?
Who can I get to talk to Mum about this, or do I just leave her in the dark?
Any advice, as always would be much appreciated.
Thank you
Sarah
My sympathies. It is not something that is easy to discuss or decide upon. I found this site and looked for answers to what the future might hold.
My husband had CBD, which advanced quickly affecting movement and some mental capacity. Until hospitalization, he was generally 'himself' apart from loss of movement. Having a PEG was never suggested (and I was unaware it might be needed) and there was no DNR. When he was well he considered it unnecessary. I don't think having either would have helped him in any way, considering the fast progress of his disease. Not having a DNR was irrelevant in the end.
You will be able to see yourself what progress is happening on your mum's journey. If she is already finding articulation difficult, it may be that control of her throat is starting to be compromised.
I suggest you look from your own point of view at your mum and then talk to her neurologist about what he thinks the future holds for her and whether a PEG might help. He may not feel able to make that answer as it can be so very individual. He may however be able to advise you on how to approach your mum, or may do so himself.
You can see from this site how very different the progression can be. Keeping a dialogue going with your mum will certainly help if you are able.
I agree that it should be your mum's decision as to how she approaches her future with PSP. If you can stay in close communication with her along this road, it may be easier to make such a decision, with her approval, or based on what she has made known in the past.
I learned on my journey with CBD and my husband, that with power of attorney, when you are at the sharp end the decision may not be yours to make, but is in the hands of the doctors and specialists. That came from an English doctor working here in New Zealand. That was how it worked for us - but it may be different elsewhere.
For me, that thought removed a huge burden as that decision was taken out of my hands. If you feel you have done your utmost to keep your mum as well as possible along the way, then you may feel the same way.
For me, I could see that doctor's decision was the only option and one I was prepared to accept.
Life for a PSP sufferer however can be more protracted and prolonged by intervention such as a PEG. Then it comes down to quality of life.
Ask your mum simple questions so that you are able to get her opinion. Give her your assurance you will help all you can, and that you will be there always for her. If she considers she wants a PEG or DNR, put those decisions in writing, and then you can both relax and you can arrange the love and care she needs with that in mind.
Then you will need help as you can't do all that caring on your own. Get Hospice involved as early as you can as one day a week respite care. It may be something she can look forward to each week. Tell her that you will always be there for her, alongside the carers.
Big hugs to you both.
Jen xxx xxx
Your local hospice will help here. They provide a booklet to discuss and fill in and someone to be with you and help with this. If your mother doesn't want to know she will just not hear or not believe. We all have our coping strategies.
You need to know whether she wants to live at any price or go when the quality of life becomes unacceptable.
Its also useful to talk about funeral wishes for lots of people. It can be comforting choosing significant music etc.
If she needs to deny, I would let her.
Let us know how it goes, love from Jean xx
There is little I can add to Jen and Jean's wonderful replies.
It's a difficult situation. I wouldn't force her to face what she doesn't feel ready to face. Anything that makes her feel secure and loved will likely help. I'm sure you know all of this.
Have you asked her if she wants you to make decisions for her? That might be an opening?
If you have a nurse involved you could ask them to talk with her, in your absence. Sometimes it is easier for someone who is not so close. A telephone call to the neurology team asking if someone might visit?
Best to you, this is not easy.
Kevin
Thank you for your responses, all very helpful as usual. I have looked into a hospice but there isn’t one close by but they are in the middle of funding to build one. Hopefully mum could start spending the day there once a week. I have decided to wait and see what happens in the future and will go from there.
Thanks again all xx
Sarah I asked my husband if he wanted a DNR and PEG or not. Although like your Mum he really didn't want to know what would happen he wasn't stupid and so had picked up enough to know he was dying. He never said those words but he knew. He was adamant he wanted a DNR and no PEG. I think he felt when he got to that stage he just wanted to die. I asked him did he want me to make decisions about what happened and he said he did so I got Power of Autorney.
However everyone's situation is different? You know your Mum better than anyone? She may well be in shock and worried about the future and what it holds. Who can blame her? Good luck with whatever you decide to do.
Marie x
My husband did not want to discuss what doctors told him in the beginning regarding his diagnosis and what it meant . I tried to start a conversation and he cut me right off . He already had some cognitive issues and personality changes. I did not push it as I thought he was dealing with it the way he wanted.
His disease progression has been rapid. I am very sorry that I did not try a little harder to work with him to prepare for a future with PSP. It would be wonderful to be certain of his wishes.
Karyn
Karyn it sounds like you did what he wanted. So you did the right thing. We all torture ourselves over what we might have done better. In truth people do what they think is right knowing the person as they do? Nothing else matters in the end? You were there for him and he knew that.
Take care of yourself.
Marie x
Karen I’m sure your husband will have nothing but admiration for you. What carers and patience go through is both wicked and cruel. PSP does not come with a rule book and so we have to learn as we go. Mostly we get it right but sadly we get it wrong sometimes. We are all human. We can learn from what doesn’t go so well and pass on our experience to other. Hold your head high, you are marvellous. Big hugs to you Karen xxx
Hi,
My Wife is the same so I ask the question and if no response say what i suggest and invariably get an answer or if no answer i then say what i/we are doing
Ken
in hospital a week and staff nurse did not know my mum had psp or what it was
Not PSP related, but Mum's gone
Mum's progression of PSP
