Looking for help

[Beckany]

Hi, to everyone on here im new to this site, my mum has PSP for over two years. She turned 80 in June, she is in a care home on the nursing side,mum is in bed all the time now she has no communication now she hardly opens her eyes and refusing to eat,she has been on a puree diet and is now skin and bone. Mum has terrible twitches. Dietitians want her on a peg but the doctors and us as a family don't want this as i know mum doesn't want it. We feel she has had enough as her quality of life is just not there. I am struggling terribly with this and it doesn't help that dad is also in the same home with dementia and Alzheimer's. Sorry for the long post but its so nice to find somewhere that people understand as i feel the health professionals looking after mum have no understanding of mums condition.

[AliBee1]

Dear Beckany, I am so very sorry to hear about your Mum and her quality of life now. You and your family know your Mum so much better than the Dieticians and if you are all in agreement about the peg then you must follow your own instincts. I note that the Doctor agrees with you. I know that it is a hard decision to make but if you feel it is right just allow good palliative care to help your Mum now. I am so sorry to hear that your Dad is suffering too. Well done for reaching out to this community. You will be supported by a wonderful international family of people who understand all that you are feeling. Big hugs AliBee x

[Beckany in reply to AliBee1]

Thank you so much AliBee. It's been so hard not having anyone to talk to who understands this horrible cruel illness. Xx

[AliBee1 in reply to Beckany]

I know. My husband had CBD. He had made an advanced decision that he did not want a peg so I did not have to make that decision for him. This forum helped me so much as no one ever said that I shouldn't feel the way I was feeling and who had experience to answer my questions that the medical professions just had no idea of apart from our briliiant neurologist. It was lovely to be able to talk with someone abroad if it was the middle of the night in the UK. Take care love AliBee

[AnneandChris]

Hello there

So sorry you need to be on this forum.

I totally agree with AliBee, that the palliative care team should now be involved. It is good that you have the support of your GP and the family agree with your decisions regarding a PEG. Your GP is probably already working with the Palliative team but talk to him about it.

Sending hugs to you all. xx

[LuisRodicioRodicio]

I also agree with AliBee.

Only some suggestions:

Your mum probably can still hear you. Even if a person is non-responsive, encourage each person who is significant to the dying person to go in individually and talk to the person who is dying. Say what’s in your heart. You are going to talk about the good times and the difficult times. The dying person has been processing his life — what has this been all about? We are helping that person let go.

- Dying is not a medical event. It is a social, communal event. You don’t need doctors, nurses. You just need someone who can support and guide you through this time.

A big hug and courage.

Luis

[AJK2001]

Sorry to hear of your situation but so good that you as a family feel confident in what your Mum's wishes would be with regard the PEG. My Mum made it very clear she didn't want one and I feel it was very much the right decision for her and allowed her to pass peacefully when it was her time. Stick together and get the GP to talk to the DIetician, it's not right for them to put pressure on, when you are so sure of what your Mum would want and it also sounds as if your Mum's overall state of health is probably not good enought to be confident that fitting a PEG would be successful.

Please continue to talk to your Mum, hug her and hold her hand. She is in there somewhere and it will give you both comfort.

Wishing you and your family strength. xxx

[Dickwin]

Beckany, welcome to this site! And though you know that no one wants to be here, you will find all who are here are some of the most caring, empathetic and helpful people you will meet. Also, the collective wisdom and experience here is off the charts. All the responses so far are spot on. There is nothing set or uniform about these diseases (PSP, CBD, MSA). They are all variable and the advancement of the disease progresses in each patient differently.

I am the primary care taker for my wife who has PSP. Here symptoms started over 10 years ago when she was just 47 years old. Her neurologist thinks she has PSP-PAGF (this is one of eight variants of the disease PSP). She is expected to live another 5 to 10 years and she definitely wants the PEG. She made her decision a long time ago. I would never get the PEG for myself, but I am not facing this choice. So as far as I am concerned, I only need to make sure that her wishes are kept. But as noted above, seek counsel from your Doctors, social workers, Palliative care providers, etc. They can discuss all the considerations around having the PEG with your Mom and family and let her and your family make the decision that is right for her.

I wish you luck, patience, strength, courage and much love in the trials your family are facing. Your Mom and Dad all at the same time. It seems too much to bear.

[Martina_MP]

Making decisions prioritizing your mother’s quality of life is 100% the right thing to do. The hospice/palliative care folks can make sure she is comfortable. Nourish her with your loving touch, words, and presence in place of food. Watching her in her process and letting go is a really hard thing to do. If the dieticians are still hovering, let them know their role is over.

[MRSYafffle]

So sorry to hear about your parents illnesses. It's a very challenging time for all concerned. My mum is also suffering PSP and is in a nursing home. They are fully aware of her wishes for no peg. The dietician really pushed for this last year and she agreed in the end but cried when it came to the appointment and had changed her mind as she'd felt pressured. The neurologist said she was no longer a candidate for a peg and had already made the decision so that pressure ended. The talk just kept happening each time a new medical person became involved.

Stick to your guns and the talks you've had with your mum and tell the dietician to read your mums notes.

Sending you all loads of love x