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Posted 6/2/2018 2:54 PM (GMT 0)
Kathy, how old is your Dad?
Posted 6/2/2018 5:34 PM (GMT 0)
Thank you celebrate life and NKinney for your input. Much appreciated. We do use a fan as he's very hot and sweaty one minute and then chilly the next... So it's a great help when he's hot.

Beth... Would you mind me asking... did the breathlessness happen to your husband towards the very end or did it happen over a period of months? Dad is not bed ridden although he spends a fair time sleeping, mobility is very very poor owing to this breathlessness... He just doesn't have the energy. It's so difficult to gauge when it's time for me to stop working...I don't know how I've got through the last few months to be honest... I teach and it's been exam time so pretty hard going. What with work and looking after Dad, I'm pretty much on my knees but very much trying to appear like I'm not. I think it might be time to take some time off work.. This time of year is such a busy time, I honestly don't feel up to it and yet can't help feeling guilty for being off work. Ridiculous I know... Dad is my priority.

Anyway, enough of my ramblings X
Posted 6/2/2018 5:37 PM (GMT 0)
Fairwind: my father was 79 in April. X
Posted 6/2/2018 6:22 PM (GMT 0)
Hello Kathy...I don't know how hard you Dad wants to fight this, maybe it's pointless but maybe there are a few things left that might be worth trying..If the Zytiga has not worked, then perhaps switching to Xtandi might be worth a try..Can't hurt...Also, I don't know how he feels about chemo, but about half the time it can be very effective..I'm doing chemo now, Docetaxel, and yes, it's no fun but it's not THAT bad either....The nasty "chemo crash" only lasts 2 days after which you feel pretty normal again....That's been my experience anyway..You can buy one of those little slip on a finger gadgets that measures blood / oxygen levels so you can monitor that ....Perhaps an oxygen concentrator is a better solution than liquid morphine..I'm just shooting in the dark here, suggesting possibilities, not offering advise ...Best of luck to you..
Posted 6/2/2018 7:03 PM (GMT 0)

Fairwind said...
...I'm just shooting in the dark here...

- - -

This reply is too much, and I've deleted it.

RULE 3!!!

Read it.

Post Edited By Moderator (142) : 6/2/2018 4:21:54 PM (GMT-6)

Posted 6/2/2018 7:56 PM (GMT 0)
NKinney.. Please don't worry, I'm not at all upset with anything that has been written. In fact I appreciate people taking the time to even read, never mind post ideas.

Fairwind... I should probably have stated that he is under hospice care, still at home though and we hope to keep it that way. But thank you anyway for offering suggestions, I know your heart is in the right place and i appreciate that. I hope my Dad is an inspiration to others who may face similar. A wonderful man who still continues to get enjoyment out of things.

X
Posted 6/2/2018 8:16 PM (GMT 0)
Kathy77, you are very gracious and forgiving.

- - -

How many times must I remind you of Rule 3? I have deleted the part of this post that goes over that line. - 142

Post Edited By Moderator (142) : 6/2/2018 4:15:07 PM (GMT-6)

Posted 6/3/2018 1:03 AM (GMT 0)
Hey Kathy,
I was in a similar situation as an educator. Do you have a summer break? I took off the last few weeks of school to be with Gary. I should have taken off sooner because I did not expect the exhaustion I would experience when Gary needed round the clock care. It isn't so much that you need to take care of Dad at this point, but you need to take care of YOU too. Also, you may need to prepare for your dad to become even less mobile. I would suggest working with hospice to get in place a walker, wheelchair, shower chair, and transfer aides. I really messed up my shoulders and back trying to lift and transfer Gary when he was too weak to do so. I also needed a hospital bed to raise his head for easier breathing, but didn't actually get it until the day before he passed! Hospice here provided people to give me respite, to give bed baths, physical therapist to practice transfers and nurse to insert a catheter. But I asked for everything later than I should have. I may be giving you information you already have, if so my apologies. In Gary's case the breathlessness occurred a few months prior to his passing, and he went back and forth on his physical abilty. But in the end he was mobile but not really lucid. That was the worst, because he was at risk of falling and would get up from bed all night long. Now I am rambling...So I will just implore you to find a way to get some rest if you are to be the primary caretaker for your Dad.
My thoughts are with you dear.
Beth
Posted 6/3/2018 1:56 AM (GMT 0)
Thank you for responding Beth. He does have a wheelchair, wheeler, hospital bed and all the other things you mentioned. He was able to walk to the bathroom with his wheeler but this past week I have noticed that even taking a few steps he gets incredibly out of breath. He only suffers with the breathlessness on movement, if he's sitting or lying then his breathing is ok. Dad is pretty stubborn, when he gets it in his mind that he wants to do something he does it... for example, showering. Mum assists him but my Lord, I don't know how he's managing and like you say.. There's the risk of falling. He's not willing to allow carers to come and wash him.. I can understand that but he probably does need that kind of support... If not now.. when/if he becomes completely bedridden. I've read many stories about end of life with PCa and everyone's experience is so different. I've read of men who at the end stages have been able to eat/drink (albeit very little) and who have not been confined to bed who have passed quietly in their sleep after spending time with loved ones. That's the best you can hope for I guess. I was just reading your journey again... I often refer to it... It helps so much so thank you again for sharing. I've said it before, you're inspirational.

With regard to work.. summer break is 8 weeks away, we are lucky because my Mum and aunty also help with caring for him, although Mum is struggling, she's a young 76, but emotionally this is taking its toll and I don't feel like I can just leave her to it and swan off to work... I'm trying my hardest to do everything but I know I'm going to make myself Ill...it's now 2.30am here and I'm still lying awake wondering what to do for the best. I need to be on top form to do my job and I know I'm not. If it was a matter of just going in, teaching and then coming back to see Dad then I could do it... but as with many jobs, It's the hours of preparation, planning, marking, assessing ... That's the part I don't feel up to and don't know how I'll manage. Work has helped up until this point, it's forced me to focus on other things ... but after having a short break with a supposed return on Tuesday and a decline in Dad's health... I'm wanting to be with Dad.

Dad sees his oncologist again on the 12th of this month. I'm not quite sure what for... I suppose at his last appointment he couldn't really say it wasn't worth coming back. I'm hoping he's kind with him, that's all. I know it's going to be a great ordeal getting him there but... Dad wants to attend.

I should probably try and get some rest now. I did e mail you a while ago, I guess it went in to your junk mail 🙈 If you do come across my e mail... It was about treatment options... as you know... we have moved on from that now.

I hope that you are doing well and thanks again for responding xxxx
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