I am an only child and both my parents are deceased so I have no immediate family on my side ..... I have lots of cousins but it’s not the same. My husbands dad is still alive, I try not to lean on him too much as he is late 80’s and went through this on his own almost 6 years ago when his wife died of cancer. I have spoken to palliative care counsellor and the chat helped that day. Last couple of days so many different things are happening that I am struggling to cope with.
he was admitted back to hospital on Wednesday evening as he had lots of issues standing and walking. He was placed on Lasix and his ‘weight’ decreased by 10kg within following 36 hours. Since then he is constantly passing large quantities of fluid but there is little changes that I can see in his legs. Yesterday morning palliative care nurse gave us offer to have him home on Tuesday provided he is cleared on medical aspects. Around mid day he had abdominal tap inserted but it was unsuccessful regarding draining lots of fluid as he has some type of a do all blockage, this will not be able to be investigated until Tuesday or Wednesday next week as Monday is public holiday. Due to having to stay in hospital for unknown period of time he became very angry last night and aimed most of the blame at me and told me not to come back unless I can bring him home urgently. Last night he refused to eat anything saying he has nothing to live for and wants to die.
Today his head was in a better view but got very upset and started crying when I said the blockage has to be investigated before any other decisions can be made. After sitting in a chair for approx 2 hours he was exhausted and his nurse suggested he go back to bed for another sleep ...... he is now spending approx 15 to 18 hours in bed each day. I found out yesterday that his legs are getting quite weaker, weaker than I was aware they are. He is approx 110 kg but is unable to standup from oncology chair without assistance of 2 nurses. This afternoon when the nurses got him to his feet he grabbed me arm and said help me. He can do not much more than shuffle when trying to walk and on ivy nurses are not letting him walk (with their physical support) any distance more than half length of his bed.
he has begged for me to bring him home and have assistance at home from palliative care nurse for next 2 weeks (hospital bed would be supplied free) but I don’t know this is going to be able to happen now. He tells me he would not be able to get into my car. We have 3steps at front and back of where we live which he would not be able to climb. His memory and comprehension is starting to fail but majority of the time his mind is quite alert. He is terrified about going to palliative care unit in our town as he visited his mum nearly everyday in 2014 for approx 3 weeks until her body finally gave up and she passed away. He has said if he has to go to palliative care unit he will not eat as he can’t cope any more and wants to end everything know.
i wish I could bring him home and I am in so much emotional turmoil knowing that this is getting impossible plus also knowing that my husband will probably starve himself to death within next few weeks
I’m so sorry to read that your support network is so small, Patches.
Your doing it tough, and I have nothing meaningful to say except, I’m thinking about you & the hell this insidious disease is putting you through.
Have the medical staff suggested a grief counsellor? I know your in Victoria, but here in NSW, there are free, trained counsellors attached to the hospitals. The majors anyway.
I know it’s Labour Day Monday there, but I think you should make some enquires on Tuesday.. You & your husband sound like you're in a dire situation. You in particular need to get help.
Having lived through this myself, I can’t stress enough, how important it is to get yourself sorted mentally & physically. I tried to be stoic and do it alone, the result was a big “F”. No matter how good you think your coping mechanisms are, you are ill prepared.
Seeking trained help, is not being weak, it’s actually being strong. Admitting you need help is the beginning. It’s great you can empty your head here, Doing that creates a space for more thinking, planning & grieving. It is a very good thing to do, the only problem is, there isn’t any spontaneous interaction.
One on one with a professional and getting feedback can only be a good thing. Those experts know of groups, individuals and professionals who can offer support and guidance.
I hope your husband can get some immediate help, especially with pain relief. He sounds like he’s in a bad way and I feel for him. Being angry from time to time is an emotion which gets a reaction. From his viewpoint , I guess any reaction is better than nothing.
I’m sorry I can’t offer more, I’m just not qualified Patches. I hope someone better qualified & a little smarter than me can give you something better.
Once again, we think about you & your husband & wish you all the best.
Palliative care team in our town has a palliative care counsellor who I have seen once and he was great. We have not set another appointment as yet but I will request another appointment soon
Patches there comes a time with PC where some patients can have palliative care at home all the way through but others need to be hospitalised for their own good as well as their carers health,hopefully they will be able to drain the ascites soon ,I can understand your husbands thoughts and words it’s a very very stressful time in his life with his body so ill he is responding to the meds,the cancer and toxins unfortunately there is no answers to what he is going through,it is a good thing that you will be talking to a counsellor for your own health,thoughts are with you both,
At at this stage we are expecting hospital bed to be delivered to home tomorrow. If this happens he will be transported home in ambulance. Hoping he is able to be at home for next 2 weeks. Toward end of that period we both know we will need to made decision regarding him being able to be at home or not but it will allow him home.
His dad, son and myself are hoping he will be able to stay at home until he passes away but we also know that this might not be possible and that we may have to make hard decision to have he moved to palliative care unit in our town.
Hi Patches, I haven’t been terribly flash over the past week myself. My woes pale into insignificance, compared to your bloke & you of course. I’m please you thought to let us know.
Patches, has there been a time line for your guy? Is he being managed with intravenous pain killer & topped up with the endone, or is that the major relief?
I hope, for your sake, you don’t have to watch him suffer too long. For him, I just hope he can get a spring in his step conquer the beast within.
my love & best wishes go out to both & I’ll check in for any updates, your comfortable sharing.
Keep strong Patches, there is a army of people who are crossing fingers for you
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