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

  • Hi Jules, Back lawn had a good soak tonight plus veggies and sole sunflower. Pets both in for the night thank goodness as cat can be a bit lacksadisical if given the opportunity and I choose to stay up to get him in. Suggestion put bed somewhere where hubby can watch TV with ease and PowerPoint/extension cord as may be required for pressure relieving mattress. We had a cordless door bell with portable unit I could take with me to kitchen / bathroom etc that hubby could press if wanted me when I wasn't stuck next to him like superglue. Gee wish the PM facility was in place. Had all requirements for care in lounge when hubby moved there, saves wear and tear on your legs. I am a great "planner" by nature and already have lists made out for things happening in March. I have a bit of good news I would like to share. Son gets married in March. Mum (88) and 2 of my sisters are travelling out here for the wedding. ( I have 4 sisters and one brother) They booked the flights after hubby passed but wanted to put off telling me till Christmas thinking I would need a "lift". Sis no 3 came out in July to support us for 3 weeks which was a great help and words will never explain how much we both appreciated it. Just someone to hang out the washing, walk the dog, cook tea was such a help. I can never repay her. Tomorrow I have quiet day planned, will stay off the roads as too many maniacs will choose to drink and drive, do gardening and more blooming admin. Will get dog out for a wander as the next 2 days will be too hot for his paws. Ok honey will sign off for now. If I don't chat tomorrow all the best for the New Year to you and yours. Big hugs Kathy xx "
  • Hi Jo, hope you had a nice relaxing Christmas and your man waited on you hand and foot. I watch. The U K weather with interest and honestly don't know how I would cope nowadays. I have spent more of my life out here than at home - notice how I still classify Scotland as home. I had a lovely time with the family doing heaps of gardening with them. Made myself vey popular when went out and turned their sprinkler off at 1 am, the young ones had forgotten they had turned it on. Bit funny as I bought them an 2 hour timer tap which obviously hadn't been connected. Haha. Gave the pets tablets last night and cat was very clever "finding" tablet and avoiding it. Mmmmm getting low on bribery foods suitable for pets and no way was I opening a camambert cheese for him. Brain wave... He enjoyed his tablet in pate, what a tough life he has. Pets asleep on big bed waiting for me. Tomorrow I will need to comfort them if fireworks going off but that is doable. Will spend it on my own with them, but that's ok. Little sis birthday Jan 1st so will give her a buzz. Oh well will meander off to bed soon. Thanks for listening. Big hugs Kathy of the no paragraphs xx
  • Hi Kathy, it's lovely to hear from you. (Sorry haven't been on the forum very much over the past few days.) I did have a lovely Christmas, thank you. I actually headed off to my mum's in Shropshire with my two children (24 and 22) while partner stayed at home with the animals (he didn't think it was fair to ask someone to look after them at Christmas) After some reservations about this arrangement, it seemed to be the most suitable - I got to spend Christmas with my family and he got to spend it with three crazy animals, two tubs of snacks and a partridge in a pear tree! Haha! We came home on Boxing Day (son drove!) and thankfully, arrived back before the heavy dumping of snow on South Yorkshire! It's really weird to read your posts about high temperatures and garden sprinklers while some of us are shovelling the White stuff! The dog loves it! His first snow - almost as enjoyable to witness his delight as it was many years ago to watch the children 'discover' their first snow! Your cat sounds as clever as ours, finding tablets in the food! We've sometimes had to resort to getting the vet to administer worming tablets - even he doesn't relish giving one of our kitty's her tablet - a very naughty Torti! You will of course be celebrating the New Year ahead of us - and thanks for the reminder about the fireworks. We'll be locking the cat flap and walking the pooch a bit earlier tomorrow evening. I'm not really a 'New Year' gal, probably be asleep before the bells (two cats and a dog upstairs on the bed!) I'll wish you a Happy New Year now, Kathy, as I'll probably get my timings all to pot and it'll be Jan 2nd with you if I wait! (I love watching the fireworks from the Oz off the Sydney Bridge - I'll never forget the spectacular display in 2000 ! ) well, I'm rambling, though hopefully without paragraphs, it's not as obvious! Haha! Bigs hugs across the miles to you, lovely lady! Xx
  • Hi Kathy

    Tried replying yesterday but lost it all when link failed grrrrrrrrrrr!  Like you would love to have previous PM facility in place as it felt easier to chat 'off cancer topic' - maybe one day!

    Beautiful frosty morning here again today.  Yesterday I was out  by 6.45 a.m. and it was so pretty and peaceful (despite living in commuter belt of Middlesex) - wish I had had my camera with me. All the leaves and branches looking very seasonal.  Tomorrow we are promised mild and damp so will make the most of today if I can get out.

    Have taken a day's leave at short notice as two hours after district nurse visited yesterday I got a call to say the hospital bed would be delivered between 9 and 4 today and once its here I have a  number to ring so the mattress supplier can deliver too.  Great service again.  I had a move around in the lounge (early spring clean too) and have space all prepared.  He will be able to see the TV and garden no problem and no shortage of electrical points to spare.We are all open plan downstairs so already have all we need (other than commode which will hopefully be delivered at same time) in one room so no major changes were required.  At the moment he will only need it at night(or daytime naps) as he is still managing to walk around, albeit slowly and very breathless, and was downstairs before me this morning (still as stubborn as a mule but can't blame him wanting to stay as independent as possible). Actually he asked for breakfast and now has a very soggy bowl of cornflakes awaiting his attention (sometimes its lunch time before he eats but its mainly liquids at present anyway though he is still being a b.......r  as regards his prescribed shakes and you cannot nag them can you?).

    Must try and visit my Mum by the weekend - its difficult but I am sure she understands where I need to be at the moment and the residential home staff are a lovely bunch who are being supportive to our family's needs.

    Well, I expect you will be seeing in the New Year with your faithful pets for company and do wish you a peaceful and healthy 2015.  Will raise a glass to all my forum friends and send hugs your way.Jules x

  • Hi Jules, You have been busy. Some of the mattresses can make strange "groaning" noises when undulating and filling up and decompressing so don't be alarmed. Glad hubby is being as independent as he can, this is a good thing indeed. Even though my hubby was bed bound for the last 10 days the nurses made him wash his own face and hands with a flannel. He continued to flirt with them to the end the cheeky so and so. Lucky I'm not the jealous type haha. Mozzies starting to bite out the back to have moved inside to the kitchen table. While outside I could hear a koala over the back fence grunting. I have nature reserve/wetlands to the side and behind the house. Often see koalas up the trees but they can be vicious if cornered so if one was in next doors tree would only let dog out under supervision. Am downloading hubby's emails on laptop over 500 coming through, the plan is once done will try and send him a pic which I can save on that computer and hopefully post here, I pads don't do it seemingly. No you can't nag re intake just offer and leave it at that , hard though it is. I am glad the nurses are being of great support and they are certainly getting the requested equipment to you quickly. The mob who helped us were very good to doing bathroom modifications, provided a ramp out the back when hubby required a wheelchair to get outside and were going to provide a lifter to get him from bed to chair but at that point he didn't want to leave bed, too exhausted and breathing was a labour. So I speak very highly of their support, care and respectful way they dealt with us and accommodated hubbys wishes. So much gardening and maintenance to do I wonder where hubby found time to do all the rest of the stuff he did, housework, shopping, dog walking etc. interesting question popped into my mind today. If I purchase heavy items how on earth will I get them out of boot eg 25 kg of dog nibbles, potting soil, fertiliser etc. I have a sack truck but the issue would be getting them out of boot onto it. May have to ponder on that one. Looks like I am winning the battle on the laptop only 40 more emails to come through. Spent an hour and 45 mins today as couldn't get the computer to connect to Internet, spoke to 3 different consultants who although polite told me an equipment issue. After tweaking settings for a further 40 mins on my own fixed the issue. What plonkers. As a result my late lunch which was in fact my breakfast ended being eaten at tea time. Ok honey have dribbled on long enough. All the very best to you and yours for the New Year, big hugs Kathy xx
  • Hi Jo, bout 6 mins to go till midnight, dog following me round like a bad smell due to intermittent fireworks even to the loo. Sprinklers turned off for the night, gee some of these fireworks make me jump out of my seat.... Have a cousin in Telford, good memories of holidays there, Sutton Heights comes to mind and a visit to Cirencester?? Excuse spelling, old Roman excavations?? I bought some postcards there I actually still have - they were too good to use.... oops it's midnight and the noise of bangers going off is terrible, have closed doors to minimise on pet trauma. New Years resolution not to keep stuff for best but to use and enjoy. Have 3 mates coming round tomorrow avo which will be nice. Great to hear you had a lovely time over Christmas Jo. Give you a laugh, watering next doors plants while she is away, took me 2 days to work out how to open her swimming pool gate. Yesterday I just increased reach of hose output and aimed at pots out of reach. Tommorrow will be hot so will need to give them a good drink.. Her garden is amazing, but I am not a flowery type preferring veggies and cacti. Haha have 2 many cucumbers will need to start giving them away to strangers walking past house. Hate wasting food. Trying to train dog to fetch me fresh loo roll when run out but to no avail. Maybe at 11 too old to learn new tricks or I have to plan better.... Best wishes honey bunch to you and yours, hugs Kathy xx