This disgusting disease has robbed her of her speech, eyesight, mobility and ability to eat.
Mum has been in hospital for 6 weeks now, she is nill by mouth and is recieving minimal fluids. We cant believe she is managing to stay with us. She is still giving us the thumbs up at times and tries so hard to keep her spirits up.
Her morphine intake is increasing and im scared she is simply not ready to go despite everything she has been through. As with most PSP sufferers she cant communicate very well but understands everything. This is hell for all involved
Feeling sad and angry at the same time .
xx
Written by
alfiro72
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My husband cannot communicate well either - or so I thought. Yesterday the hospice pastoral counselor came in and asked if he had any end-of-life issues he wanted to talk about. I thought this was going to be a total waste of time. Much to my amazement, he said clearly "Yes. Forgiveness." They went on to have a 30-40 minute conversation about an issue that had been bothering him for 40 years! It involved an accident and the death of a child. The court and jury cleared him of any wrong-doing. But he can't forgive himself! I was absolutely amazed that he was able to have this conversation. There were times when he couldn't find the words he wanted but she was very patient and could eventually understand what he was trying to say.
Maybe someone could engage your mother in some similar way and she could express why she is holding on. It sounds like it could be beneficial to both she and the family.
I am sorry to hear of this as it must have been very difficult for your husband. My mum seems very settled and has assured us as best as she can that she is not worried about anything. We pray regularly everyday and the priest has been in too. I will make a special effort with this in mind and will ask the priest to have a chat too. I hope your husband can finaly forgive himself and find the peace he needs for both of your sakes.
My mother-in-law died over 20 years ago with what was called then senile dementia - probably would be referred to as alkzeimer's now. She was a catholic but never a practising one However towards the very end Reverted to her childhood Scottish accent and said the rosary, every day. Who knowers what goes on in the mind.
I am so sorry that ur mum is in the final stages of PSP - It is not easy when the person cannot communicate at all but plz do not let her suffer more than she needs to
My heart goes out to you and your family. My mum is also classed as in final stages, although she is still managing liquidized food, speech almost completely gone and has to be hoisted from chair to bed etc.
I know in the not to distant future I will be in the same place as you are now. Sending you strength and love
Jo xxxx
I feel your pain, we only lost mum 20 weeks ago but it feels like yesterday. Mum was diagnosed a year ago when she was in middle stages and had a major deterioration in that August when we thought we would lose her. However she amazingly pulled herself out of it bit by bit and could walk again by September, it was incredible, her will to live. Unfortunately it seemed she hung on for Christmas and the day after Boxing Day dropped sharply into end stage. She could no longer speak for 2 weeks but suddenly was able to talk pretty well for a whole day. But she never spoke again and died 3 weeks later when her swallowing rapidly failed. Even then she took all day to go when she was in the final throes, as if she was still determined to hang on.My mum was the bravest person I am proud to have ever known. I will think of you and hope you will all find peace soon.
My Mum is in the same place and I share the exact same feelings you describe. Mum is fed up of living but she's not ready to go yet. Before she stopped talking we had conversations that she doesn't believe in anything after life. For that reason she's scared to let go because she cannot comprehend what will then happen. She's not yet made her peace with letting go so although she doesn't want to keep going it's the only thing she knows for certain.
We've had all her friends and family to visit and we are with her every day. We still have jokes and fun and we can still see in Mum's eyes that she is sharing the jokes. That's what I guess I hold on to - her spirit is still in tact and we're still able to reach out to her on some level.
I note your post was 3 days ago so hope you're faring ok.
Thanks for all your replys. My mum passed away very quietly last week. We are all extremely sad and experiencing shock at how she suffered from this illness...esp now that we can face up to it without trying to put a brave face on. My mother coped remarkably well and tried to get the most out of life for as long as she posibly could. I want to wish everyone the best . Take Care, God bless to you all x
Dear Alfiro72
My condolences at the passing of your mum. In your loss may you find peace and have good memories despite her suffering in the last years as a result of this devastating disease.
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