Another cruel blow Dad is in the latter end of PSP he now has lost the strength in his arms. So can no longer use the steady and has to have a hoist to be moved. His legs are locked bent and his whole body is ridgid and locked down. He can no longer move to assist in caring for him. Its already taken his communication eye sight he can’t do anything himself anymore. He lays there with his eyes shut locked in his body just listening. Now and again we may get a shout from him but not on a regular basis. The only thing I am grateful for is that he is in no pain he still enjoys his food even though its mashed and doesn’t really understand what’s happening. Gave him 12mths to live 3mths ago. Sorry I dont write or respond on here often as I find it hard I just needed to get it out of my system. Hoist being fitted today my mum is in tears as this is a huge step backwards and obviously she is clinging to any hope that he may get better 😩 hugs and thoughts go out to everyone eho has lost or is supporting friends or family with this wasting disease ❤️ Xxx
Downward slope: Another cruel blow Dad is in... - PSP Association
Downward slope
Hugs to and your family, we are not far behind you xxxxx
The downward slide is so very hard to watch. I know exactly how you feel.
Big hugs to you my lovely ❤️ Xx
Sorry to here this Nemo.
It's heart break after heart break.
I hope he's still getting 'good times' things to brighten his day.
Warmly
Kevin
Thanks Kevin yes it is just as you are trying to cope with one heart break along comes something else. We go down to see him most days around working I still chat to him as normal so hopefully that brightens his day either that or he is happy when I have gone for the peace and quiet 😂 take care xx
These diseases remind me of the saying 'like watching a train wreck in slow motion". I hope the hoist will make things easier, I know it did for me.
Best Wishes....
Ron
Yes I can totally relate to that Ron thank you Dad will be able to go in his fav chair again as he has been bed bound 😊 best wishes to you xx
So sorry to hear that your dad is in sharp decline, the same happened to m husband not long before he passed away and I found it a blessing that he didn't have to suffer any longer. It may sound harsh but I felt that his suffering was so unbearable for him and I know he welcomed death. Could that be the same for your dad do you think? We in the western word aren't too good at facing these situations and want to try everything to keep people hanging onto life, I'm not sure it's the kindest way, I always felt that I would care for Ben to the best of my ability, make him feel loved, try to keep any pain and discomfort controlled as much as possible and then let nature take its course. That's what he wanted and had his advanced care plan in place with words to that effect. I'm still reeling 4 months after loosing him but still feel it was the right thing for him and feel no guilt about that.
Sending lots love and support
Kate xxx
Hi lovely sorry for your loss I totally agree Dad had a really bad sepsis attach in March and we were told he wasn’t going to make it. He did make it but his quality of life was destroyed he could no longer walk feed himself he was trapped when he came out in June since then every day has be something either very small or big deterioration. In my heart it sounds wrong to say but my head says he should have gone in March we had had a lovely family meal the night before it would have been a shock but what my Dad is going through now is awful no quality of life and what it has done to my mum mentally knowing the amount of time Dad has left is unbearable to watch. I remember when we went to the consultant and he asked Dad if he wanted to know his time scale he said yes and when he said less than 12mths he let out a huge sigh he has since tild me it was a relief for him to hear that. It gives me a bit of peace that when it happens Dad will be released and be happy. He already knows mum is in good hands with me and she will be looked after which also put his mind at rest. Sending huge hugs to you ❤️ Xx
It's a fine line we tread Nemo, I miss Ben so much but could never wish him back to more suffering. His journey was relatively short, just 3 and a half years from diagnosis so his decline was quick and he was just 66yrs old. I feel for your poor mum, it's not easy seeing your partner taken over by the ravages of this disease and all that caring for a sufferer of PSP brings.
Much love
Kate xxx
A big hug Katie.
Luis
Thanks Luis, hugs a bit scarce when you're home alone.
Kate xxc
True. It is not my case but I can see around me that loneliness is a tough subject that awaits us at the bend of the road. I see family, friends, collaborate in NGOs, reading workshops, painting, history, excursions, activities of the parish, help for the dependent, traveling with friends, etc. they can be a balm.
In Spain there are 2 million people living alone, mostly women. It is a hard subject that must be worked on and overcome.
Good Morning Nemo
I remember all to well when mom entered this stage.
My heart goes out to you and your family - this disease is a heart breaker.
I wish I knew the right words to share but I do not. With mom I talked softly and read to her.
I have a dear friend that works with Hospice and she said Now is when you enter her world. That is what I did - hard to explain. Sending HUGS - Granni B
Dear Nemo,
I am so very sorry that this awful disease is running its full nasty course with your dad. My husband was spared the worst (which your dad is experiencing) and although his death is a heartbreak, it's nowhere near as bad as suffering through this horror. It is so unfair!
(1) I wish every British patient/family could video the experience of their loved ones and take the videos to their MPs and say "Enact legislation - Do something about this! What if it was YOU or YOUR husband/wife/mother/dad..." At least give patients the option.
Having said that: Canada DOES have the legislation, but if the patient doesn't express the wish when they are communicative and cognitive, they are SOL. Still, it's a beginning
(2) You mum sounds like she needs some extra care, and maybe some gentle reality? Would it help if she knew how close your dad is to the end? It would be awful if she were shocked and 'missed' doing something or saying something to him that she would if she really knew the score?
Forgive me, if these comments don't resonate - I don't mean to be offensive.
Hugs to you XXX
Anne G.
Hey lovey your comments are not offensive in any way at all 😊 I agree Dad is totally competent to make that decision he has a refuse to resuscitate form at the house and has also stated in his Power of Attorney that he just wants to go. I do hope they change the law I am a carer myself and I look after some people where the choice would be a godsend. I know Dad’s days are very few now and I would rather know where we are and try and prepare as much as possible. I cant deal with what if’s. Mum on the other hand just refuses to face reality which I understand Dad has been there for her since she was 15 shes now 70 she is so frightened. The hoist was fitted yesterday and she has now broken down and is no longer coping. We have the carers and OT coming today to reassure her. My fear is I will lose her after Dad goes. There is no right or wrong way to deal with what this disease puts you through as a family. She has refused any outside help from anyone although she does talk to me about her feelings which is good. Its good to talk about what we have or are going through to help others 😘 Very sorry for your loss ❤️ Xx
I fear that my husband is in the same stage as your dad. I will hold you in my thoughts.
Hugs,
Pat
A big hug.
Luis
Nemo this is so sad to read. Keeping you all in my thoughts and prayers. Love Nanny857 x
Hi Nemo 14
There are times you hate this terrible disease , watching your love one going downward,all you can do is give them love and the best possible care.all the best, Peter and Kathy
Yes I agree that is all I can do is support them both as much as possible ty both ❤️ Xx
Thanks everyone for your comments they all matter and have lifted me up from the dark side knowing we are not alone as a family. We are all on here for the same reason and my thoughts go out to you all and sending big hugs to all of you and your families ❤️ Xxx
Sorry to hear your news Nemo.
My brother is in a similar place.
I know he wants to be with my dad on the other side but I just can't help him.
My mum is 88 and this has taken its toll on her too having to watch her son go through it.
I guess all we can do is be there for them both and try to stay strong ourselves.
Thinking if you all.
Sue x ❤
So sorry to hear what your family are going through, love & strength to you all. xxx
Hi Nemo I am so emotional reading your post right now and the lovely responses that I cannot even think of what I want to say. I am thinking of you and your Mam and Dad. Hugs to all of you, you're in my prayers xxx
Ladyalone
Nemo,
Prays of strength and comfort coming your way at this difficult time of the disease. I understand how you have to step away from this forum occasionally. I do too. The stories of the heartbreaking decline of loved ones just are too painful and bring back the pain of seeing my beloved wife succumb to this terrible disease.
Wisdom and strength,
Bobby
Nemo14, my heart goes out to you, your Mom and your Dad.
My husband is not there as yet but what you are now going thru is my biggest fear/concern. I know the possibility/probability is coming.
I know many people won't understand until it happens to them, but I pray for an early "release" before my husband gets to that point as well as he does also.
God bless you for helping to take care of your Dad and Mom.
When you have to watch and take care of someone you love with this devastating disease, well, you suffer right along with them. Strength and prayers to all.
My heart aches for all of you. I wish I had something wise to offer, but I don't. Just prayers for a peaceful end to suffering.
Marilyn
I’m so sorry, and can sympathize with both you and your mom. My husband can still use his arms to hold on, but sometimes bends his knees and hangs with his “Sit and Stand”. It’s not good ! A hoist seems to take away another little part of their dignity. I also dread the struggle . Rigid limbs are heavy and notbeasynto move. I’m sure your mom must be physically and mentally exhausted. Both your mom and dad are blessed to have such a caring daughter. I’m sure you are a sense of love and strength
Hi there, so thinking of you, it is an incidious illness, Leon never had the extreme rigidity, except in his wrists which gave him immense pain. All my thoughts and hugs go out to you. Marg H Howlong N.S.W. Australia xxxooo
Severe leaning - new way to get patient into bed.
Corticobasil Degeneration Advice Needed?
Refused CHC today for my FIL has anyone got any advise how I can appeal?
