How to manage/ watch for deterioration

Bless you. It must be so harrowing watching your husband deteriorate. I have that experience still to come. But I am very glad you are in touch with the Hospice,  as we found  our local one to be invaluable. 
You can only trust that the professionals will do their best and make him as comfortable as possible. Thinking of you both. 

Thank you so much xx

Charlotte33,

I am so sorry to hear about your husband.  What a horrible situation for him, for you, for your young daughter.  I can relate to your situation; I understand the stresses and worries especially at late-stage/end-stage of a devastating cancer.  Mania years ago, I went through it with my mom.  Now I am experiencing similar with my husband, not nearly as young as your husband.  My husband has rare blood cancer, and his immune system is depleted.  He also has extreme pain due to extreme osteoarthritis in leg and knee.  As you know, it is heart-breaking to watch a loved one suffering.  Now just tonight, he told me that he didn‘t think he was ever going to feel better.  A number of months ago, the haematologist said that it was a matter of months.  Indeed, I have been noting a gradual and perhaps not so gradual decline in so many ways.  Continual shortness of breath, so he walks very little know.  Movement and balance have become an issue.  Generally he has no appetite and eats/drinks virtually nothing.  As you noted with you husband, nausea and vomiting often consisting of just bile.  He‘s tired most of the time.  So yes, it seems thing are on the decline.  He speaks in dozing mood, often unintelligible.  

He had infection/fever at beginning of new year.  Since then, things have been quite bad.  Last night his fever spiked to 39.9.  Doctors recommend hospital; he refuses.  So it is my responsibility, which I do willingly, to take care of him.  I feel so alone.

I am so sorry you are going through this too. It’s such an awful and lonely place to be. Things have actually deteriorated since my post. Long story short is he had fluid on the lungs and after an op to drain one side suffered from adrenal crisis and wound up in ITU for 5 days. He came home on Monday and things are very hard. His mobility is bad and we have a bed downstairs and a commode (which we’ve had mixed success with). He needs help with everything as he can’t stand unaided. He is unable to walk to our downstairs toilet and unable to wash so we have a carer coming in daily to help get him washed and dressed. Oxygen sats have started dropping again and so we also have home oxygen downstairs. 

We have discussed his resuscitation status with his dr and the hospice are arrnaging for us to have a just in case box at home now. His pain is increasing and he cries out through the night so may be going into the hospice for a bit next week to see if we can get on top of that. It has been one of the worst weeks of my life. This morning we had to tell our nearly 4 year old that her daddy won’t get better and will die. Just taking one day at a time at the moment. 

Thinking of you too at such a difficult time xx

So sorry to hear how things have deteriorated and that such a burden of responsibility falls on you. I would not refuse a hospice bed  if they are offering as they  have all the facilities to make your husband comfortable and manage his pain. You have a lot of emotion to deal with as well as the practical chores and it cannot be easy for your young child either. 
Let them help you both and don’t be alone xxx 

Charlotte33,

Your trials and traumas are heart-wrenching.  I trust you have other family support and help.  I wonder if I have the strength and resilience to continue with my challenges, yet somehow,, I keep going.  I imagine you probably wonder the same, yet you keep going for your husband and your daughter as well as yourself.  

I am drained.  My husband‘s fever is spiking again and he‘s had uncontrollable shivers most of the day (something doctor says actually elevates the body temperature).  I insisted he take paracetamol.  He resisted but took it.  Shortly thereafter he was sick in a bucket.  Also I am absolutely exhausted … long day yesterday, then up a lot of the evening with ill husband.  I hope it doesn‘t happen again tonight.

I am exactly the same. Each time something happens I feel like surely it will break me but then I seem to find reserves from somewhere to keep going.

The fever sounds worrying, is it worth speaking to 111 for some advice?

I am also finding the evenings tiring as I am up with my husband a couple of times a night and my daughter usually wakes to come in with me at some point too, so always a disturbed night. Stay strong - you are obviously a very resilient woman xx

Thank you so much. In some selfish ways I am hoping he does agree to go into the hospice as it is exhausting looking after him, even with the carer coming in (which is a big help getting him washed and dressed). I honestly have so much respect for long term carers, I don’t know how people must do it without feeling entirely cut off from the rest of the world. I also feel like he will be more comfortable there and get more rest, as our daughter is very kind and caring but is still a four year old and plays loudly etc and wants to talk to him and be with him whenever she is home xx

I‘ve definitely considered that. I have done that in the past.  At best of times, he is difficult.  As patient, he is even more so.  I told him that he had to work with me, to help me, cooperate … otherwise I wouldn‘t be able to cope and care for him.  Then he‘d get somebody else caring for him … and he most definitely would not like that!

Exhaustion takes toll on all of us.  Young child alone is exhausting and energy draining … add in your other challenges.  People say you have to take time for yourself.  In my experience, it sounds good and reasonable; however, actually finding the free time for self can be virtually impossible.  Sometimes, the demands begin first thing in the morning.  Other times, at inconvenient times in t he middle of the night.  As much as I might feel bothered by some of these demands on my time, I think about the alternative …. I certainly do not want not in my life.  As hard as it is at times, I do my best to give him the best care I can with respect and love.  From what you have said and posted, it is obvious that you do the same for your husband and daughter, a difficult balancing act. Keep strong ! XOXO

It sounds incredibly tough for you. My husband has been similar in the past with not wanting to accept help but has changed over the last month and I am glad as I just couldn’t do this otherwise. I think it is definitely worth getting some professionally advice on the fever if you can. 

I feel the same and everyone means well by telling me to take time for myself but it is easier said than done with the usual routine, apts, home visits, calls etc. occasionally I don’t even have time for a quick shower. 

it is a very difficult balancing act, one I wouldn’t wish upon anyone. Thank you and sending positive thoughts and strength to you xx