This is my third attempt to write this blog today... It should have been the day my lovely Dad came out of hospital where he has been the last 6 weeks, 60 miles away from his home n family.
It's been the hardest day for me so far, don't ask why, maybe that after the district nurse came to inflate the mattress for the hospital bed my Mum now has in the dining room, was the fact that my Dad is coming out on a stretcher. Not the way you'd expect to be coming home! A man who upto Xmas was playing 18 holes of golf twice a week n was just complaining of being a bit tired afterwards.
He was diagnosed with mesothelioma just 15 days ago and it's turned my world upside down.
Today I've felt very anxious and tense. I was the one who pushed to get Dad home as I felt being in a room alone with only a frosted window wasn't helping his mental state whatsoever, he needs to have his family around him to help. But as the equipment arrived, bed, mattress, commode, wheelchair to follow plus the phone calls about us emptying chest drains, administering morphine and the fact that they didn't recommend bed sides as he had tried to climb over them in hospital and pulled out the drains and catheter, no, he doesnt have dementia, just drugs given to quell the pain. I did question whether we were doing the right thing, maybe me just being a coward.
Writing this does help in a way too relieve how I feel, after keeping a stiff upper lip for the family. Sorry if anyone who reads this gets scared but the fact is it is scary ... But I have to cope, be strong, for my lovely wonderful Dad who has always been there for me.
The hospital rang this afternoon .... They couldn't get the transport arranged, now it's tomorrow, we had to phone Dad and disappoint him yet again!!
Julie
FormerMember
Thanks Lisa, it's just having the support of someone who knows, for the bad times, I only need to speak to someone to get help, but I feel useless... I'm not sure we can cope but would feel dreadful putting Dad back in hospital. I know, it's all new and frightening, we must give it a few days to settle, see what support we can get then review.
One day at a time sweet Jesus, hey no ... I'm not overly religious but I did use to like the song
Julie
Well you've got through the weekend even with it's ups and downs. Hope the new week brings renewed strength for you.
Nursing a family member at home needs all the support you can get. Have you got a macmillan nurse, regular district nurse home visits, some voluntary marie claire sitters (they will sit all night with your dad so that the family can get rest) ask your district nurse to urgent refer you. Also carers to help with basic hygiene needs. Regular GP visits at least twice weekly.
Whilst the above is set up, you need all your family members who can give a few hours here and there to make up a rota 24 hours to be there when needed. I did alternate on call nights with my sister. So if dad was unsettled in the night mum just rang the one on call and out we went to her. I suppose this depends on how near you live to your parents.
These are just ideas and things that our family put into place but ofcourse you must do whatever you feel is right for you and your family. At the end of the day you can only do your best and your mum and dad understands that.
Thanks for the help Jan, we saw the district nurse today for the first time since Dad has been home, she was very good and had time to discuss our concerns, which did help a lot.
The next step is to get Macmillan or St Barnabus involved so Mum can get some sleep at night. We are waiting for a call to see if anyone can stay tonight. One drawback of having a small family is the lack of available sitters. My son has offered to stay over and sleep downstairs with Dad tonight if nothing else can be arranged. My husband works a long day from 7-10 most weekdays so he really needs to rest too. I can help as well by doing a late shift then n early morning if necessary. But being with Dad all day is exhausting in itself. This morning while I'm about mum has pottered about doing a few jobs (endless washing of bed sheets) then this afternoon were all just sitting chatting. We have had to laugh at his comments as he can clearly see things we cannot, we,ve just had a cat on the windowsill, according to Dad. As I said before we would cry if we didn't laugh!
The weekend was tough and quite honestly I was unsure what day it was... But hopefully things will get better on the caring front.
I feel so guilty as I pushed for Dad to come home as I knew it was what he wanted, now mum is fast asleep in the chair, bless her.
Hopefully we will be able to look back and say " we did our best" that's all we can hope for.
Thinking of you all, n from the bottom of my heart I thank all of you for your support.
Julie x
Day 4 of caring at home... Had a busy morning with Dad, constant stream of the medicals but now time for my daily community fix.
Last night my son & i stayed with mum n dad, basically to give mum a good nights sleep and try to ensure dad didn't get in too much mischief with his drains n pipes. He was a bit agitated at times but settled from about 3ish so I had a doze in the chair.
Looking like the same will happen tonight, the community nurses come and tell us they will get help but come tea time they ring with the news, "sorry carnt get you anyone tonight". Maybe I need to get tougher!
Hopefully we are getting fast tracked... I've also asked for options if we get to the stage were we need dad to be admitted for more care than we can physically give. I don't want to go down this route if possible.
Truthfully, we are all scared, scared of losing loved ones... But I don't honestly feel its my dad laying in this bed now. He is such a proud gentle man and would hate to think he would end his days like this.
On a positive note, despite him being really not with it today I did sit and hold his hand this morning and remind him of the things we used to do when I was a child, that made him smile. I also describe his lovely colourful garden in which he takes great pride. I'm trying really hard, love you Dad.
Thinking of all of you and wishing you all the best
Julie xx
