We enter new territory. Since Ian's total colectomy 3 weeks ago, he has been having real problems swallowing, and chokes on water etc. I am about to collect some thickener from the farmacia. He has little appetite and his speech has pretty much disappeared, all in a short space of time.
We are home now and the doctor is very kind, but I want some honest answers please, although I know everything is different from person to person.
From the heartbreaking experience of those of you who have already walked this path, how close am I to losing my beloved? He is just wanting to slip away. I know it, but we have always talked honestly about his condition and I would love some support at this stage so we can have appropriate 'conversations'.
Big hugs to you all out there.
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JCRy
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Hi Juliet, I suppose the quick answer, is not what you want. Who knows! Of course Ian is going to be down after such a huge op. Whether it’s permanent is another question. Steve lost his speech a good 18months before he died. He kept up a reasonable appetite until a few months before, when his swallowing started to go. The last month he barely ate anything. All you can do is love him, hold him, tell him you love him and if he is ready to go, you support his decision. You know what I am going to say now!!! Please look after yourself, make sure you have plenty of help and you are well rested as you can be. This is time for you to start doing the most important role, be his wife again, not a carer. Let others do the physical side, only you can love him and make him feel safe. I managed this for the last three days of Steve’s life, it was very precious and kept me going through those dark and lonely days afterwards.
Sending very large hug, loads of strength and much love.
All I remember is that after he had died I could remember that I often hugged him and said how much I loved him because of the advice I remembered from my friends on this site. That is all that matters in the end.
I found this phase of the disease the most difficult.
The normal eating had stopped and the surgeon was saying my wife was not well enough to have a peg feed.
I went to bed fearing the worst.
The next day I visited the hospital about midday to find her sat up in bed with an ng tube up her nose and a big smile on her face. A junior doctor had fitted them during the night. That simple operation gave us an extra five years together.
Hi Juliet, I am so sorry to hear that Ian is having problems swallowing. I experienced the same thing with my mum in July and she was unable to swallow and i too was asking the same question as you.
I don't know if this will help you in anyway.
The GP put end of life care in place and district nurses and palliative care team came daily. They put in a syringe drive in place to administer morphine.
Mum went 3 weeks lying in bed, with no food and only small sips of water then out of the blue, one morning she asked to get up and she seemed to revive a little although like Ian she has lost her speech.
Shes been managing to have some puréed food and drinking through a straw again and has wanted to get up each day.
She has been this way now for 4 weeks but in the last week mum has once again been unable to swallow any food and it is falling out of her mouth. She is also dribbling all the time.
The district nurses are going to review again tomorrow.
It is so hard to tell with this illness what will happen as you say each persons experience is so individual.
Like others have said look after yourself too, It's such a difficult and distressing time.
I think any major surgery will hasten some decline, but sometimes there is no other choice. I know it did for my husband. Hopefully his swallowing will improve with time.
Everyone is different. John gradually ate less and he ate his last bit of food on the Friday and he lasted until the following Wednesday evening. We were just moistening his lips. He was in no pain and did not need any medication. The doctor said his swallowing had just gone. Just take care of yourselfxx
I agree that the surgery created quite a setback. I think the doctors underestimate this because they know so little about PSP.
I don’t know if it is the anesthesia or just the trauma in general but it does seem to be something that science needs to study. I know this does not help you in your present situation.
The best advice I can give you is what I have heard here many times- to take one day at a time! That became my mantra both before and since the loss of my beloved husband.
Thanks, Jan. I do think the tube through his nose to tummy affected his swallowing muscles, but not much can be done about that. They didn't put in a bag, so we are now dealing with at least 8 nappy changes in 24 hours as the colon absorbed water...now there is a free flow of liquid being evacuated!
With his stiffness and fragility, it is all quite a trauma for him.
A day at a time is always what I say to others it really does work.
Sadly, my daughter is unable to visit us, due to Covid. We live in Spain and she can't come over because of the quarantine on returning to the uk. A nuisance, but I know I'm not alone with this problem. A day at a time majes everything bearable and do-able!
Hi Juliet, so sorry Ian had to undergo major surgery. That would take a lot out of anyone. I hope and pray the thickener helps and along with pureed foods he gains some strength. Will managed on this for over a year and then one day his swallow just went completely. As you say everyone's journey is different and this evil disease is so unpredictable.
I also hope you are getting some practical help with Ian and emotional support for yourself as well as some rest.
Sorry I haven't answered your question as to how close you are to losing Ian, but he is with you now, so just keep loving him, telling him and showing him your love. Let others take over the role of caring if it's possible, and you can become his wife again. I think you will find comfort knowing, that when the day comes and Ian passes on, he left knowing your love for him. It will also give you some comfort too.
Dear Juliet. I cannot say it better than Anne has said. I know it is not what you or any of us want to hear but it must be such and effort for Ian especially after such a major operation. My love goes out to you both. I know how much your hug meant to me when I met you just after Nigel died so I am sending you a big hug now. Love AliBee xx
Would you believe it, he managed a Weetabix for breakfast today, a horlicks, and a bit of cheesy potato for lunch just now without coughing at all! What going on! How long it remains inside remains to be seen. Have a bowl close by just in case!
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Strength
Update on Michael...CBD
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Recommend a neurologist/medicine review? 
