Palliative care at home

I am new here, nursed my darling husband  of 30 yrs at home palliative care for past 12 weeks till he passed 07/10.  Diagnosed start July with sciatica ended up being bone cancer of back L2 and sacrum, primary lung , adrenal gland with brain mets. Privileged to look after him though it was tough, was administering sub cuts for last 2 weeks.  Have some handy hints to assist with how to turn as he was 6 foot 3 and I am less than 5foot tall.  Nothing would stop us from providing best care possible , thankfully supported by nurses once a day a great palliative care team

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    Hi Jules, yes am sitting out back with dog having a cool drink, sat down to remember I forgot to put the wash on, oh well will do it soon.  Recycle the water via window to a big bin then it goes down the back garden to water a mandarin tree.  Yes definitely a bit of the Scot in me!!

    Can understand how you feel after yesterday, nice you could spend some time with mum though.  How long are you out in the mornings at work is it 4-5 hours?

    Good news re the loo .  I can understands hubby frustration at not being able to carry out these jobs any more.  When mine got upset over things like that I would get teary, but other times when he would get glassy eyed, he would say - don't get upset they are happy tears, talking about the grandkids etc.as the cancer got to the adrenal glands there were no more tears left, he couldn't cry..  He was an ex nurse and ex miner so he knew what lay ahead. Now off to get the wash on and water the veggies.  Have a good shift.virtual hugs to you too

    Kathy xx

     

     

     

     

     

  • Hi Kathy

    Am using my imagination and thinking of your lovely weather (we have had torrential showers this morning so got a bit damp when I went to the launderette!!). On the plus side its mild for the time of year and I still have roses blooming in the garden!  Having done the mundane chores am having a coffee break.

      I work three days 8.30 - 1.45 and to be honest it is keeping me on an even keel just now.  Due to medication and now a painful 'ulcer on his cocyx(? sp)' hubby is sleeping quite a bit .  We have nurse coming in to treat/dress it but its in an awkward area.  We are still planning our Friday evening social night out (I go out with the wife whilst hubby goes to the pub with her husband) They are friends we have had for many years and are wonderfully supportive.

    We have a local artisan/farmers market this coming weekend in our local town centre (about mile walk) so am aiming to go along (great for gift ideas and yummy cheeses(though I should be watching how much of that I eat - oops).  Take care of yourself Jules

  • Hi Jules, How amazing you still have roses blooming in November. Does hubby have to sleep on side to avoid friction on his coccyx? Your Friday night going out sounds great fun.. Wish you hadn't mentioned the markets though, now I fancy some camambert, like a whole one. I can say no to chocolates with ease but savouries I would hoover up, wouldn't touch the sides on the way down. Gardening planned for tomorrow (what else) plus dog walk as it has cooled down a bit and haven't had the lad out for a few days, the hot asphalt could damage his paws. Nothing much planned but that is all good a bit of chilling out will be nice. Hope you have a great weekend Jules Kathy xxx
  • Hi Kathy

    Hubby has always slept on his sides but now can only do one side (cancer growth is mainly on the righthand side and this makes it to uncomfortable to rest on).  He is finding better relief during the day by laying on the floor (rather than sitting on the chair) and is currently snoring in front of the fire even though he has the motor racing on! (I have the radio on through headphones on the laptop).

    Our daughter and grandchildren visited this morning (and gave me a lift back with the shopping which was a nice surprise) so visit to market (will think of  you now when I visit the cheese-man) will be tomorrow now. I try and get out for a couple of hours each day whilst it is possible.

    Hope you managed to take the dog out for a stroll and am sure the garden will be a welcome place to relax (though sounds like you enjoy 'working it').  I enjoyed the times in the summer when I could sit and read and listen to the birds.Now, following lots of rain its too soggy to do much other than look at it here!

    Wishing you a relaxing weekend.  Regards Jules x

  • Hi Jules, How wonderful that you had visitors this am. The little ones bring such joy. Yes dog got out both Saturday and Sunday for walks as weather milder so he was happy. They don't ask for much and are so loyal and loving. I managed to add to my compost bin today a layer of mature horse manure which will compost down nicely through time, bags a bit heavy but I managed it and also got out to the front lawn on hands and knees weeding. Achieved a bucketful and thought I'd call it quits for the day. I do enjoy the fresh air. Hope you had fun at the market. It is good you are able to get out for a few hours, very important that you do when you can. Australian cheeses are all pealy wally looking-anemic looking, they don't have any orange cheese, guess you can't have it all ways. Hope the nurses can suggest a better type of cushion for hubby and get it arranged asap. Take care Kathy xx
  • Hi Kathy

    Glad you managed to 'add matter' to the compost heap and dog walking was more comfortable.  I like to be outside too (have never driven so walk when I can).  Spent two hours wondering the market/shops yesterday and bumped into friends and family doing the same! Lovely to see all the local producers showing off their wares.   Managed to keep myself from buying the cheeses (supposed to  be on limited portions because of cholesterol levels grrrrrrrr).  Our eldest grandson loves 'red cheeses' and have to keep it in the fridge for his lunch when he is coming though to be honest he will always check the fridge out before deciding!

    Off to work in half an hour and hubby should have nurse popping in today so will leave him a reminder to ask about cushion.  He managed quite well yesterday so am hoping his back will  be looking a llittle better when she changes dressing.  We will see how we get on at his Consultant's appointment tomorrow but am expecting a drop in weight again (to be honest not sure where he can lose it from!!). Unfortunately he is not making much of an effort to make the most of the 'shakes' they are supplying, even though he finds them pleasant enough.  Everything is such an effort for him bless him  but we just cannot replace the loss he feels in having lost the ability to work- so hard for him.

    Hope you have a good week ahead. Look after yourself.  Hugs  Jules x 

  • Hi Jules, I am glad you had a pleasant time wandering around the markets and so good they are being well supported. Hope hubby's back is improving. My hubby had one on his hip at one point, that was when I demanded a pressure relieving mattress from domicilliary care. Some type of dressing was applied and left on for a week and the sore cleared up thank goodness. I don't think we will be able to comprehend how someone does feel at no longer being able to work and do the the things they used to. This cruel disease takes away our choices and control of so many things. A wobbly start to the day for me with tears flowing freely on the way to work, resembled a panda by the time I got there but came good by 10 am and was able to stay at work and do my job. Maybe I had too much time on my own over the weekend I don't know, however am determined the rest of the week will be better. Hope the appt tomorrow goes ok, thinking of you both Kathy xx
  • Hi Kathy

    Have to say think you are really brave even going into work and that wobbles for us all just show we are 'human'.  Of course, I cannot put myself where you are yet and grieiving is a long and sometime very painful process but your forum buddies are hear to listen/support when you need us.  Goodness knows I have relied on this for over two years now and no sure where I would be without be able to 'share' with those who understand this cruel and controlling disease.  I had my wobble at the consultants this morning (strange as I usually control myself when at his appointments) but  you are right about having no control over the situations we find ourselves in and the consequent frustrations that brings.  Needless to say support worker was great at listening and hubby made no comment bless him.  Still trying the step by step coping mechanism but emotions have to be let out otherwise the 'head would burst'. Sending virtual hugs. Jules x

     

  • Hi Jules, was there a slogan years ago weebles wobble but they don't fall down??? Must have related to a toy I think in my youth.... Good to see results of latest check re no increase in meds. Don't understand why a different cushion not considered as if the present one was working hubby wouldn't have the issue. Yes if we didn't cry we wouldn't be human and I guess a necessary release. Also pleased support worker was supportive, you have to take your hat off to these people, they really do have a vocation in life, not for everybody. Sitting out the back with hose dripping at base of veggies, girlfriend last night inspected the rainwater tanks and knew what we needed so off to hardware store we went and for less that $20 we had all the bits and bobs required and in no time at all she had everything sorted. So now can use stored rain water and not mains that is charged on usage. Very pleased indeed. Am like Jo using an I pad and can't do paragraphs but could do smiley faces if I understood what they meant haha. Can't wait till the pm comes back. Does hubby like hot chocolate? You can add half a flake, marshmallows and aerosol cream to it to add calories. A very naughty drink if extra calories not wanted. Hope your day is good today Jules Virtual hugs Kathy xx
  • Hi Jo, something funny happened tonight and I know you have a wicked sense of humour. Picture it, me sitting out back, quite contentedly, watering garden, moving hose now and then, on iPad that doesn't give us paragraphs grrrr, came inside to wash up pet bowls, bit sad when you do more washing up for pets than is there for yourself, anyway back to the story, discovered had no hot water. ****note to self *** if you unplug water heater to charge mobile remember to plug back in !!! Thought you would appreciate what a dork I can be. Hugs Kathy xx