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Palliative care at home

KathyS
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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

  • Offline in reply to jules54
    Hi Jules, I am enjoying being back at work, the interaction with customers and colleagues is good for me. I work in a call centre making payment arrangements, until July it was in the hardship area for those experiencing severe difficulties through factors out of their control eg job loss , ill health, bereavement, flood, bush fires etc. due to retrenchment now it is the general finance area, but I still love it. Work has been so supportive, cannot speak too highly of them. Two managers came out and dug our veggie plot over in August and another dept had a working bee a few weeks later and tidied up the rest of the garden . Hubby was so happy to see it looking good. The boss will give me a hand updating cv and some direction to make me job ready for the future , not sure what I will look at doing yet, buy hey it will all work out. How's it going with you? I must say the weather sounds shocking, I don't think I could handle the cold weather after 30 years of living here Big hugs K
  • Offline in reply to KathyS

    Hi Kathy

    And there was I thinking how good our weather is for this time of the year!!  Still quite mild in the Home Counties of London but a bit damp this morning.  I too find my part time job (still managing my three mornings at the moment) 'an alternative stress' and like you have very supportive workmates within the store (retail ).  They have also offered me 6mths unpaid leave if it would help in due course but taking things day by day.

      Our current problem is more to do with a leaking cistern in the loo(which has led to water running through the ceiling to the lounge) so have plumber calling today but fear it will need replacing so a bit of upheavel expected in the next few days.  Currently we are turning off water in between uses to lessen the effects (extra exercise up and down the stairs ha ha).

    Take care of yourself and sending virtual  hugs. Jules x

  • Offline in reply to KathyS

    Hi Kathy

    And there was I thinking how good our weather is for this time of the year!!  Still quite mild in the Home Counties of London but a bit damp this morning.  I too find my part time job (still managing my three mornings at the moment) 'an alternative stress' and like you have very supportive workmates within the store (retail ).  They have also offered me 6mths unpaid leave if it would help in due course but taking things day by day.

      Our current problem is more to do with a leaking cistern in the loo(which has led to water running through the ceiling to the lounge) so have plumber calling today but fear it will need replacing so a bit of upheavel expected in the next few days.  Currently we are turning off water in between uses to lessen the effects (extra exercise up and down the stairs ha ha).

    Take care of yourself and sending virtual  hugs. Jules x

  • Offline in reply to jules54
    Hi Jules, I am desperate to get an update on the cistern. Where is it leaking from? Is it not shutting off and overflowing or cracked.? Bit sad isn't it to excited over a loo problem. I like to know how things work and how to fix them. It is good that you have support from work too. The boss commented on me looking tired today, bit of story behing that.... I lay on the sofa last night with the dog and cat to watch the Moto gp and I guess by lap 3 I was asleep. Woken at 2am by a text from big brother in Scotland asking was I ok, grrrr, anyway I continued to sleep on sofa till alarm went off at 5.15am. Thank goodness I taped the race can watch it tonight. Might grab a blanket in case the same thing happens as I woke up cold it being only 10 degrees overnight. Does hubby follow the bikes? Just sitting in the kitchen at present having a nice cup of tetley, can't remember the last one I had, normally coffee in the am and water or something stronger after work, but I am really enjoying the Rosie lee. Gardening question for you Jules, how do you think crepe myrtle would grow over there? My mum is thinking of getting one. Take care Kathy x
  • Offline in reply to KathyS

    Hi Kathy

    Just got in from work to find plumber and his mate fixing new cistern in.  The old one (37yrs young) had developed a crack underneath (hence we did not notice it until the water appearered downstairs!!).  Though it will now be a mis-match suite at least they have isolated water so can do the washing up though my have to keep my legs crossed for a while.

    Falling asleep on the sofa is something I can relate to! and how rotten to be woken mid slumber!  Hubby and I follow F1 cars and his brother likes Superbikes but to be honest I like watching most sport.  Enjoy the 'catch up' process later.

    The gardening question was beyond me I am afraid (never seen this plant and am not very green fingered), hence still have the shrubs that came with the house and a lawn so a good weed twice a year is about my limit!!. Prefer sitting in it really so will be waiting for the Spring when a good book will find me outside at every given opportunity.  Lived in a flat with no access to garden until I married so not exactly the best person to give advice, sorry.

     

      Fingers crossed you get a good kip tonight.  Take care.  Jules x

     

     

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    Hi Kathy so sorry for your loss. My husband also passed away on First November ,ten days now. After three and a half years doing everything I could for him I am devastated. He started off with bowel cancer and it progressed to his liver and lungs. What do I do now? I have a terrific family Network but I just can't believe I won't see him again after fifty years of being together. We have worked all of our lives and have both retired in the last few years I just can't think anymore. My husband loved his music and his smart clothes what do I do with them can't bear to think of that just now. I keep expecting him to talk to me I wanted to bring him home from hospital with the assistance of palliative care however he was too ill to leave hospital. So sorry to tell you all this when you are having house problems but it rang a bell with me. My husband was an engineer and a handyman and did most of the house repairs with my help so I will just have to do as much as I can I wish you well and hope you get stronger. I just feel as if my husband took my heart with him at his funeral Kind regards Margaret
  • Offline in reply to Alexander
    Hi Margaret, I truly feel your pain. My condolences to you and yours. I keep expecting him to email me asking what time will I be home and what do I fancy for tea. He used to have the gates open for me and a cuppa ready. I can keep it together at work - I returned 03-11 but howl on the drive home, at home in the evening and night, all quite normal in the circumstances. I think we both know they are gone but habits of a lifetime will take time to change. I also have not started moving his things, at some point in the future the time will be right but not just now. Margaret you must have done a brilliant job of looking after him for so long at home and I am sure he appreciated every minute of it. He would have got great comfort from being at home until it was no longer possible. He will always be with you watching out for you and guiding you in some way and a part of him is with you in the children and grandchildren. What great memories you must have, no one can take them away from you. We are so lucky to have found this forum with so much support and love from others. It is good to put our thoughts down and rant and rave if required. My wee mammy 88 tells me the pain lessens through time and you find the strength to go on. Hope you reply when you get a mo. Kathy xx
  • Offline in reply to KathyS
    Hi Kathy Thank you for replying. I don't want to leave the house I just keep going round in circles doing nothing of any importance. Just think how lucky you are to have your Mammy. Mine passed away also of cancer six years ago. Treasure her she sounds just like mine. I keep questioning everything. The palliative nurse says I will need some help. I have just been on line checking syringe drivers to make sure that I agreed to do the right thing. I checked every pill they gave him online yo make sure they were ok. I questioned everything even though I worked in a bank and new nothing I did spot a couple of mistakes. The hospital staff in Alex's ward were absolutely fantastic they took care of our family as well as Alex and quite a few we're crying after he passed away after three days when the family wouldn't leave his side. I hope you are switching off during the day when you are at work. Why not leave a light on when you leave home so that at least you're not going home to a dark house. I stay in Scotland so for me it Would be dark going home at night. Hope to speak to you again and you start to feel a bit better soon Margaret
  • Offline in reply to Alexander
    Hi Margaret, Just got home from work and the house is stinking hot. I live in Australia , 36 today currently 34.9 and would be same inside. After I have a shower will sit outside for a bit then water the veggies. My family is all in Scotland but we keep in touch via email and the odd call. It is quite normal to be inquisitive regarding the morphine pump and meds your hubby was on. I was the same and investigated what they were, what they were supposed to do and any side effects to look out for. Knowledge is power. I do switch off at work however today I was a bit wobbly. My elder sister came out here for 3 weeks to help out and was such an asset with housework, dog walking, taking hubby out in his wheelchair for a wander, I would go also,one of us in charge of the chair, the other in charge of the dog. Hubby loved the outdoors, listening to the birds, the odd koala up a tree, feeding the ducklings next door in the wetlands. Anyway back to why I was wobbly, she emailed over pics she had taken and of course the man of the house was in some of them. Wish she had timed it for them to come through after I was home from work but such is life. Well Margaret will nip off for this shower so I can sit out the back. Will be on here for the next hours anyway so may chat if you are here also Talk later Kathy
  • Offline in reply to KathyS

    Morning Kathy(well evening for you!)

    Logged on early this morning and am off to work myself soon but just dropped in to say hi when I saw your post notification.  'Wobby times' very understandable and its not always easy to control thoughts no matter what time of day night (hence why I was up earlier than usua).  Cannot put myself in your  personal position but think my head was still in 'yesterday' when we had our 2 minute silence for Armistice Day.  I visited Mum in the care home and we remembered Dad (passed over 6 yrs now).  He was a disabled war veteran and this date was a very important one in his life so found it very poignant.  Now I need to get into 'smiley mode' and face the public at work whilst wondering how hubby is going to be today (spent many hours sleeping/vivid dreaming again yesterday).

    On a good note, cistern fixed and flushing without running down the lounge wallp(though back balance took a hit which is what frustrates the other half (he would have done it himself in the past!). 

    Take a glass of something cold into the garden and enjoy. Chat soon. Take care and virtual hugs.Jules

     

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