Grieving - loss

Hello fellow PD sufferers and Carers. My husband has PD diagnosed nearly 7 years ago. Until this time last year we were kind of doing okay his symptoms were well medicated and reassessed quarterly under the expert team at Kings College.
Then May 2018 he collapsed with Sepsis and was hospitalised. The blood infection was ‘hiding’ in his right artificial knee joint. It was explained to us that blood infections gravitate towards metal in a body and are extremely difficult to eradicate. He quickly went from having an acute infection to a chronic one which took 10 months to clear, more than 9 operations, many weeks in and out of hospital and nurses coming in when he was at home to administer drugs intravenous through a PICC line. This has culminated in him being unable to stand and walk. We have had to have some structural work done so that he can access a toilet at home and he now uses a wheelchair, also gaining about 2 stone in weight. His mental state through this has become fragile.
We’re now a year on and he has just been given a new knee joint but doesn’t have the strength to stand or walk and has developed fear and balance issues.
I feel like I’ve lost my husband in this last year and it’s breaking my heart. He has always been such a fighter and to see him broken and defeated is horrible. My dreams are full of him as we were and my days are hard, lonely and sad involving too many tears. I want our fight back but at the moment motivation to even get out of bed is lacking :woozy_face:

I am so sorry to read about your husband. Life seems so unfair sometimes. I have a similar tale to tell but with a different outcome.

My neighbour and friend came to my door crying. Her husband was on life support and the doctors had asked her permission to switch it off. Her reply was NO, you are not going to murder my husband. She had to fight to keep him on the machine.

Then, after some time, little by little he began to improve very sightly. He then had gangrene and lost some of his toes - in fact just about all of them - but now, he plays bowls again, does the gardening and enjoys life. He is such a lovely man, as is his wife.

I hope this will give you some hope - sometimes it does turn out well. Please keep me/us updated as to how he is doing. Keep strong - you will find the strength, you sound a strong, strong woman.

I and I am sure many others will be thinking of you and your husband and like me wishing him and you well.


Thank you Eve very much for your timely reply and how grateful am I that you took the time to not only reply but to pass on this great outcome.

Oh my goodness, you and your husband must feel like you have been hit by a bus. I can’t begin to imagine how sad you both must feel and tears are ok but you must fight back, you have both got to be strong for each other. You haven’t lost your husband, you are entering the next stage of your lives and it may be different but you can still be happy and motivated.
Wishing you happier times, you can do it x


My friend asked me over for a Coffee yesterday just after I had written to you so, I told her about you and what I had said.

Sue corrected me on a couple of points - twice - not once - she stopped them switching off the machine and secondly, not only did he loose toes but fingers too.

Sue also told me to tell you that you will find the strength you need and when he has improved you will have time to relax. She was so surprised how she coped at the time - another thing I had forgotten all about was that she was rushing down stairs to go to see her husband and tripped and fell down the stairs breaking her collar bone !!! She still has a piece of bone that you can see. A nicer, kinder person I have yet to meet.

On a lighter note - when one of his toes fell off - his dog ate it !!! Honestly its true, we did giggle at the time.

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Thank you, terrific, for your kind words of encouragement

Thank you and your neighbour - it is weird most of the time we just kind of get on with it, life as we have it, but every now and then it becomes a bit much. But your words helped so Thankyou- although I’m not sure about the dog eating a toe :nauseated_face: