Do Not Go Gently into that Good Night or "It's Life Jim, but Not as We Know it"

:grouphug:

Continuing to keep you in my prayers :grouphug:

Physiotherapist arrives. Not from Whiston Hospital I hasten to add but from St Helens. She is lovely, very kind and efficient. She does some stretching exercises with Alan as he sits in his chair. Arms, back and upper body. She asks for the zimmer frame and gets him to stand. The effort and concentration from him brings tears to my eyes. This man who was always fast on the rugby field, he had a sidestep second to none, who could score tries and run for ever is now struggling to stand upright. He's had enough and he sinks back for a rest. A few minutes later and he does it again. His effort is so obvious, his aim is to please. He sits down and she asks him to raise each knee, marching on the spot she calls it. He copies her but slowly and sometimes does the left leg instead of the right. I give him a hug and Aleksandra calls it a day. She has visited three times and this is her last session. I will now have to apply again, go on a waiting list and....wait! I know what to do and will carry on with the exercises as I have been doing for the last few weeks. I am unable to do the standing exercise with him as need another person. After a drink he lies back in his chair and immediately falls asleep. He is exhausted.

What a hero for trying so hard x

Not a praying person, but know how hard it is to struggle to do something when the mind is willing, but the body is not cooperating. All power to Super Gramps for trying. My thoughts are with you.

How did I miss this thread?! I have just read it all in my lunch break at work and now my eyes are so full of tears I can hardly see to type this. I always knew you wrote beautifully Mo but this is different because it so heartfelt and personal. Every day I see patients whose lives are being changed by illness, but what we don't see is the lives they lived before, the people they once were. Every health care professional should read this blog, it is an inspiration!

I wish I lived closer and could be someone else to visit you, but as it is I am thinking of you always. Much love xx

Like you Caro I have only just read this thread, and I had a lump in my throat when I had finished reading it, I can only say as always my thoughts and prayers are with you Maureen.

Thanks Caro and millypops. I am comforted and grateful for your comments. I know that you have always supported us from the beginning which means a lot to me.

My heart goes out to you as it is so hard to watch, but as always Maureen, thinking of you & Supergramps sending lots of :grouphug::grouphug:

Well, this is a progressive condition and things are definitely progressing. For the last three days my lovely husband has not been able to get out of bed. The carers can't use the hoist as he is unable to grasp the handles. He has been barely awake but opens his mouth when instructed for medication, food and drinks. He seems unable to open his eyes and hasn't spoken much. He just lies there and my heart is breaking watching him. I wonder what it's like for him, how he feels, does he think. Sometimes when I ask him how he feels he mumbles "All right". He never complains, never looks miserable, doesn't have pain but he is living in a twilight world, not living...just existing. My emotions are of deep sadness, frustration and sometimes anger that the love of my life is no longer with me but just lying in a hospital bed unaware of things around him. I watch cricket and rugby and remember how we shared a passionate interest together. My mind goes back to trips watching Lancashire cricket team, test matches at Old Trafford, rugby matches, both codes and I am sad that he can no longer watch and enjoy these sports that were a huge part of his life. Today I am feeling angry, unhappy and guilty. The carers point out to me changes on his feet. One heel has what looks like a large blood blister. This has certainly not developed overnight and I am furious that the carers over the weekend haven't noticed changes in his skin. I feel guilty as I didn't see it, leaving everything to the carers. I phone the District Nurses and am promised a visit some time today. I phone the Care company to relay my concerns. They have already been reported by the carer who spotted the skin changes. I phone Social Services saying I need to talk about changing carers. I am sitting with Alan, have been for the last hour and a half and he hasn't opened his eyes even when I give him a drink. He now has problems swallowing and it takes more time feeding, administering medication and getting drinks down him. A nurse was here last week to assess and advise and the GP visited also. He couldn't have communion yesterday as I was worried he would choke. The condition is progressing and quite quickly. I g o on the PSP forum to find out how people have died. It's usually from pneumonia caused by swallowing problems. I don't know what to think. I shall just carry on providing love and comfort. I hug and kiss him and tell him I love him but recently he hasn't responded which upsets me. He is leaving me and my heart breaks. I hate this disease.