PSP Association
5,630 members7,685 posts

Heartbroken

My mother who has psp has a chest infection and hasn't responded to treatment her potassium level dropped to 2.6 normal is 4 and were giving her chewable tablets to try and increase the levels. She told the dr she didn't want to be here anymore but they said they would review her. 4 day's later they came to see her and she told them again that she no longer wanted to be here. She is trapped in a body and cannot do anything she can't feed herself and has constant care around her. I told the drs to respect my mother's wishes the same as I am doing she has that right. They have now withdrawn all her medication and we are taking it one day at a time. It's going to be sad to loose my mother but she has no quality of life and she has guts to do this. On top of all this I am grieving for my husband that I lost to cancer after being ill for only 6 weeks.

33 Replies
oldestnewest

So sorry to hear this, you must be devastated so much going on in your life at the moment, you can only take one day at a time, so happy you got the doctors to respect your mums wishes. Sorry to hear about your husband, must be very hard for you at the moment. Sending you a big hug. Yvonne xxxx

1 like
Reply

Thank you x

Reply

I am so sorry. This is so hard for you but your Mother has made her decision. None of us would want to live as she has done? She is a brave lady. You need to hug her and tell her you love her as she is still inside that body and can still hear you.

Hugs to you and take care.

Marie x

2 likes
Reply

Such a cruel disease for everyone mams decision at least she could tell the Dr's she wanted out of this. It will be a blessing for her x

Reply

York God bless your dear Mum and you too. You have been through so much. You will never forget her or your dear husband. They will forever be in your heart. Life does go on although it might not seem like it right now. Your Mum will be free of PSP just as your husband is free of his cancer.

When all this is over you need to rest because you must be worn out? When you start to think about the future you will know you are getting here. I am still thinking and wondering where there is! We will all get there together though.

Love to you.

Marie x

Reply

At least they will be together x

Reply

Dear York,

You have been vigilant for some years here; I read your post from 3 years ago. It sounds like you've had a pretty tough 3 years if you've been looking after Mom, and dealing with your husband's illness and death. I'm so sorry for your gruelling time. Did you lose your husband recently? How are you managing?

So much sadness must seem like the light will never return, but as I listen to our "graduates", our "tribal elders" here on this site, I realize that there is life - although life different - at the end of all this. They help me have faith to stay strong and carry on and trust that life different will come to me and will be what is right at that time.

Prayers for light, for you and your Mom, York.

Hugs XXXX

Anne G.

Reply

My husband died on the 11th October 2017 so still very raw. He was 61 and we had been together for 32 years and was my soul mate. A very kind gentle giant and anyone who had the pleasure to meet him were blessed x

1 like
Reply

Thank you my husband helped look after mam and I think when he died it was a real blow to her. She missed him going to see her every morning he was the first person she saw every day.

Reply

Wow,that is just so unfair,do hope your mom has a peaceful journey.Try to take care of yourself

(((((Hugs to you York)))))

Dee

1 like
Reply

Me too and may sound cruel but sooner rather than later she's suffered enough bless her. Yes it's going to be sad but also happiness for her to be out of this cruel journey x

Reply

Sending you massive amount of loving strength.

Praying that your Mum has a peaceful & not a drawn put process of passing. Pleased the Drs have listened and allowed her this final decision.

You've so much to deal with. Please take care of yourself very well

Xx

1 like
Reply

I am trying, just got back into eating again lost over half a stone and I'm only little to start with x now it's back to long day's at the hospital

Reply

I am so sorry for your loss. Losing your partner is horrid. I lost my husband on 29 November 2017 to PSP.

You are in such a horrible place right now. The consultant withdrew all medication my husband was taking. It still took some time for him to leave me. You are doing the right thing for your mum. PSP is a cruel and unrelenting disease that knows no bounds.

I hope you can find the strength from somewhere to help you through this.

I am sending my heart-felt love to you.

Take care of yourself.

Love and hugs

Pat x

1 like
Reply

Thank you Pat it's just dreadful moving on without your partne, and know it will be hard without Mam but it's what she needs, for her x

Reply

Thinking of you at this difficult time. My husband made the same decision in October and I know how distraught I felt. He died peacefully and I know it was right.

Big hug for you from Jean xx

Reply

Thank you Jean we've been asked to try and find a nursing home to care for Mam,but it's the one thing we promised we wouldn't do put her in a home. I only pray she passes before all the paperwork Tec is sorted she doesn't need all the upheaval x

Reply

What a strong woman your dear mother is. To make that decision must be very hard. And you are wonderful too in making the doctors respect her decision, even though you know it will mean the loss of someone you've loved from the moment you were born. God bless you both at this sad, hard time.

I lost my hubby on 24th October to PSP and that is a devastating loss in my life but for you to have this, and have to make decisions about your mothers end of life care says a lot about your strength of character. Keep strong.

Marie

Reply

Thank you Marie I am trying but it's keeping me busy which is good at the moment, stops me thinking xx

Reply

My heart is breaking for you. No words can give you comfort, so I send a very large hug and much love.

Lots of love

Anne

1 like
Reply

Thanks Heady sending hugs back to you xx

Reply

Hi York!

I have seen very sensible comments and I do not have to add anything else ... except a quote from Anne-Heady (active participant in PSP-HealthUnlocked) that I repeat myself frequently:

"Never forget to get plenty of rest, ask for help and most of all" ditch the guilt! "

1 like
Reply

Very good words. And I will try x

Reply

Words are inadequate, but please know you are in my thoughts. It is a blessing that your mother was able to make the decision. Hard as it was to let my sweetheart go, he did choose his time, and that took the weight of the fight from me at the end. Now all you have to do is love her.

I hope you have folks close to you, so you can be cared for, too. What you have been through and will be going through is so sad and hard. I understand a little. Please be gentle with yourself. Rest when you can. Love and Peace, Sarah

Reply

Thanks Sarah I have a good family supporting me and you find out who your true friends are when times are tough. I learnt a lot when my husband died. People who you thought were your friends faded away. I try to stay busy.

1 like
Reply

Dear York, be kind to yourself in the time to come, you have cared for your mum and respected her wishes, supporting her in her final decisions, which she has been lucky enough to make for herself. This will help you when you look back on this time. I hope that your mum has a peaceful passing and please accept my sincere condolences on the loss of your dear husband. Thinking of you and your mum. Ruth xx

Reply

Thank you Ruth x

Reply

Stay strong. God bless you ❤❤

Reply

Thank you x

Reply

Holey Smokes, York!!! Sending hopes and prayers your way for the strength to get through in the best way possible - we'll be thinking of your mom and how brave she is today!!!!! You will need to take care of yourself as soon as possible💗

Reply

Thank you such a lot of kind words it's a wonderful site shame it's just cruel illnesses that have brought us all together xx

Reply

York, Wow what a few months you have had, my hubby is in hospital yet again, he can hardly stand now, so I don't think I will be able to bring him home again this time, it is so so difficult watching loved ones go through this horrid illness, Leon is now in his 8th year of P.S.P his mind is sharp as a tack, he can no longer communicate except with an alphabet board, which is frustrating for him as his hands are so so crippled too. I wish he was as strong as your Mum, he said to me yesterday when I went in to visit, I woke up and I shouldn't have, I need to get out of everyones way !!!!! He hasn't actually said he doesn't want to be here anymore, he is like your Mum trapped in a body, he cannot do anything for himself, P.E.G fed, continent to a degree, but as his muscles are waisting it is so so difficult for him to even poop. Maybe T.M.I. (Too much Information) but it is helpful knowing that others suffer similarly. I feel for you, but you having posted your post, has helped me know I am not alone, this site is invaluable to us as carers, it certainly has helped me tremendously.

Cheers Marg H

1 like
Reply

I know exactly how it is mams mind is fine it's the rest of her body that crippled she cannot do anything for herself. The chest infection really got her this time and we've said if they pulled her round from this there would be another infection to follow and with no quality of life we totally agreed with her decision x

1 like
Reply

You may also like...