Well we got all we needed in place - carers ,equipment ,etc - and then Tuesday I asked the doctor to visit and she dropped the bombshell !
She was so pessimistic about Valerie's condition she arranged for an " end of life " pack of medications (morphine etc) to be kept ready at home and for the district nurse to come in daily to check on her and administer anything that was needed.
I really can't accept that we are at that stage - after all I'm only a husband of 60 years who knows her so well. But I'm not a doctor and she has stopped eating.
I'm praying the doctor is wrong and I'll have Valerie for a while longer - I'm doing all I can to get her to drink and I'm still trying to get her to eat a little food . Not much success with that as it tends to stay in the mouth.
I've never been a religious person like Valerie but I do pray for her now . I'd love you all to join me in that.
Bryan
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bryval
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I'm so sorry to hear that Brian. It was so nice to meet you when we all met in London a couple of weeks ago and I'm sorry you have had such a difficult time since then. What you describe is pretty much exactly what happened in my husband's case and I do hope you are well supported by the nurses as we were.
Bryan, you are in my thoughts and prayers. Perhaps Val has decided she doesn’t want this to continue and the only thing she can do is stop eating. This is how my darling was. He wanted me to stop using the PEG and refused to swallow yoghurt or ice cream, holding it in his mouth or pushing it out with his tongue. It’s so hard for you looking on though. My prayer is that however much time you have left together, Val is painfree and peaceful and that God gives you the special peace only He can give.
Hi Bryan, so sorry that you have arrived at this place. It was a shock, when I was told the same news, although I was waiting for it to happen.
Rely on the nurses and carers to do their bit. You just concentrate on doing the most important job. Loving her, being her husband. Only you can do this, don't waste time trying to do anything else.
Once I accepted what stage we had arrived at, the time left became very special. As crazy as it sounds, it was the easiest part of PSP, a privilege to be able to spend time, holding his hand, telling him I loved him. I am so grateful to everyone that was around, Steve died with me being his wife, not the exhausted, bad tempered carer, that I had become.
This is very much like my dad was and he was also prescribed End of Life medication, most of which wasn’t required but it is comforting to know that they are there if they are needed. Now is the time to just be together. Thinking of you both at this difficult time and wishing you both peace. Ruth x
Bryan I am so sorry to read your news. This is PSP. One day you are going in one direction thinking you know what life will be like and then you discover you have no control. So very sad for you. I will certainly say a prayer for you both. You are a very kind and loving husband. As Anne said let everyone else do the caring and just hold her and tell her you love her. You won't ever regret that I promise you.
Sending you lots of love and strength st this time. May you find peace and cherish the time. I'm so sorry this has now arrived and you have to face what is happening.
Dear Bryan my heart goes out to you at such a sad and difficult time, the replies to your post, from people who have gone through the same experience will help to,prepare you for whatever the outcome of your lovely wife. As Bev says she has probably has enough of the terrible disease and wants to be set free. Ben too has a pack of 'just in case' drugs, he was quite poorly a while ago and the doc took me to the side to say be prepared, I was so concerned that I requested the pack and feel reassured that it is there if needed. Ben doesn't want hospital admission so that makes it extra scary for me. I'm not one for prayer but I will say one for you both.
I'm sorry to hear you may be joining me in this stage. I too find it hard to believe how suddenly we found ourselves at this point. Only 3 weeks ago it was same old routine, we'd finally got a decent wheelchair and ramp and were making plans for outings then wham! Refusing a meal, then eating fairly well, then taking ages to swallow , up and down on the roller coaster until suddenly aspiration pneumonia and nil by mouth since. That's now 2 weeks. No fluids since the drip was removed 4 days ago. We're home with the "just in case" pack of meds wondering how long we have left.
I do feel for you with the abrupt way you have been advised. Certainly PSP can surprise us with its ups and downs and Val may yet turn the tables for a little while but doctors do develop a pretty keen eye for such things.
Fortunately Jon is very peaceful and enjoying visits from friends (as far as I can tell). I feel he will continue this way and I hope with all my heart that it is the same for Valerie.
Oh Bryan I am so sorry to hear your news. You are doing a marvellous job of looking after Val. Just take each day as it comes. Sending you a hug and will pray for you xxx
Bryan, I am praying for you and Val. If you have come this far with her, give her lots of hugs and all the love you can. Believe me, you will not regret it. I am so glad I did with my husband until he passed two weeks ago with PSP. Joyce in snowy Minnesota USA
So sorry Bryan, we are having similar conversations at the moment, so I understand how you are feeling. Trust your own instincts - after all, you know Val better than anyone else.
Bryan I am so sorry to hear this. Dealing with this disease is heart breaking. We are constantly questioning the what ifs and it's so hard. Even though we know what is coming, and we try to prepare ourselves, we are never ready to admit the point we have reached (me and my family certainly find this true of ever 'milestone' we have reached).
Wishing you and your wife much love and support. Thinking of you xx
Dear dear Bryan, reading your post has brought back so many feelings we had with mum. The end.....or the lead up to it.....seemed to be so sudden. A week or so before I would never of dreamt she had such little time left.
My heart goes out to you. Spend every minute with your dear Val and recite your lovely memories. May she be pain free.
Bryan, I will say a prayer for you both. I hope Valerie is pain-free and comfortable. I hope you continue to find strength as you go on this journey. B x
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