It's so hard to keep my focus on what's going on with Bob, without all my emotions getting in the way. It's been a long haul. Last October we were told that it was over, he was palliative and was treated as such... it was a terrible pneumonia. Darned if he didn't rally around and pull himself out of it! Amazing, but that's the determination he's always had in life. Now he's at a point where everything that goes in feeding tube comes up and is aspirated. So...they've put ports in to admininister meds interveinously. But, still giving small tube feeds. It's risky, the doctor has said it's a matter of time, either he aspirates and dies from pneumonia or he slowly starves to death. Bob isn't willing or ready to give up the fight. Not being in his shoes, I don't understand it, the quality of life is not good. He is bed ridden, has very little communication, a finger squeeze now and again, I'm just so sad. It's been 6 yrs since diagnosis, and several yrs prior, waiting for a diagnosis. I'm exhausted mentally and emotionally. Just had to get that off my chest!
Joan
Written by
laroux
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Sorry to hear about bob but hang in there love it’s hard but you will get through as I’ve been in the same situation .keep up your good caring to bob and have time out for half hour ever so often in the day
No Joan, it's not about you. But who else do you live with, it's the person you look at in the mirror every morning, that rules your life. Of course Bob, is your main concern at the moment, but you still are the most important person in your life, no matter what is going on. Look after yourself, you are very precious and Bob needs you to be at the top of your game now and be very strong for him.
Dear Joan, Bob is one very determined man. I feel fortunate in that Ben never wanted PEG feeding or hospitalisation so his life wasn't extended, he welcomed death and said he wasn't afraid of it. It meant that when his time came I didn't have the dilemma of getting treatment and it definitely helped him to die naturally with just a little help to prevent pain and anxiety. That's how he had wished it to be and it was just over three and a half yrs after diagnosis that he passed from this world. To strange how some of us will do everything to keep going but very distressing for you.
Oh my goodness!! This could be me! Charles has been in Hospice going on two years. He's up and down and strong, He is also bed ridden, has very little communication, and I'm sad sad sad. We've been in 4 years but looking back it was beginning long before that. In hindsight I should have sought out a specialist.
The mental part is what gets me. Last night I had the caregiver spend the night (I have to pay out of pocket and have no income) but it helped. I did sleep awhile.
It just hurts and I want you to know I'm happy you posted because it helps me see I'm not alone with all these friends.
You are in my prayers. It's such a helpless feeling to watch someone that you love struggle. You can get through this. I don't know why some people go through the trials they do, but you are certainly going through this too. It's not all just Bob. You are a team and when he hurts, you hurt. When he struggles, you struggle. This is life changing and it's ok to acknowledge it.
You can do this. Keep telling him you love him. Keep holding those hands. 💗💗
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Breathing Difficulties and PSP
Psp and pneumonia
Miss you mum xxxx
It's been a tearful few weeks
