Care at home

My partner has Stage 4 colon cancer, secondary cancer in liver and lymph nodes.  Secondary cancer diagnosed more than 18 months ago. He's not undergoing any treatment right now and is generally quite well at the moment with the most significant side effect being tiredness.  We have been discussing what care he wants when he gets to a stage when he isn't well and we both would like him to be at home rather in hospital unless it's absolutely necessary.  I'd like to be more prepared on what to expect as the illness progresses to a point where treatment is no longer viable/effective.  Can anyone advise what the likely symptoms/side effects will be as the illness progresses?  What care will be required at home? What symptoms/side effects require a visit to hospital?

Any advice would be welcome.

Thanks KAT

Kat,

My first husband passed from prostate cancer several years ago.  Before he passed, we faced this very same decision making process that you are in wiht your partner. First, you need to consider your context.  In our case, we were living on a ranch in Northern Canada, and as such, I had to do a lot of research on what was available in our immediate area in terms of public health-care and home care support and support from our local community groups (Churches, etc.). 

I'm not sure, but your handle "ozkat" suggests that perhaps you are from Australia?  I suspect if you are, you will have a lot of support without so many hoops and obstacles that I'm currently facing with my second husband.  Let me explain. 

My second husband is an American and was diagnosed with Stage IV colon cancer, shortly after we were married.  Like deja-vu we are discussing the same thing.  What should we do?  First, I figured anything we do must be dealt within the context our current living situation in Southern California.  I've discovered the "context" is very different down here in the USA vis-a-vis Canada.  The USA lacks a lot of the basic universal public support we take for Canada.  I've discovered that my husband must be "approved" by a US Disabilities Act in order to qualify for extra services from the State of California.  I'm currently doing this right now.  And I've been in touch with the Veterans administration as well, as he's a Vietnam vet, and may qualify for benefits and help there.  In short, I'm currently figuring out what "support" he qualifies for within the context of the California/US system -- basic things like home nursing care, hospice care, what equipment can we acquire like lifts, beds, bed pans, wheelchairs?  And what about public transportation and mobility services?  Things like special care handivans?  Taxis?  It has been my experience that doctor appointment will continue to happen up until nearly the end.  How is your partner going to get to them?  And how can your partner get to them if s/he doesn't have you around.   

Indeed, I'm here and seemingly very healthy, but what if something happens to me?  We're not young anymore!  So, we must have a comprehensive backup plan if something happens to me, as I'm my husband's primary caregiver.  We're asking ourselves who in our family (or social network) can we depend upon in a pinch?  Tough, as my husband's family is from the Midwest.    These are important questions.  And what about public transportation services -- taxis and special mobility needs for doctors appointments, etc. 

Special equipment for the house, things like beds, bedpans, wheelchairs.  -- these are expensive things, and while these "things" were readily available "for loan" at no cost in Canada for anyone who needs them, I'm unsure what to expect in the USA.  Will his HMO pay for this stuff?  What is he entitled to?  These I'm discovering and will add to this thread as I research them. 

So, if you're interested, I'll list what I've find.  

In terms of health.  Pain management may be an issue, as too access to liquid nutrition.  My mother passed from lung cancer (mets from colon cancer) but she had no pain when she passed. She was 88.  My first husband who passed from prostate cancer was in tremendous pain, as he had mets to the bone.  My current husband is up and very healthy looking, but we both know he's lucky and this current streak of being NED may not last forever. Indeed, we're both old and know that all "life" is terminal.  

Well, I must run.  The husband is rooting around in the fridge and for those with neuropathy, you can likely know the yelling for HELP that's going on now.

Paula Jean   

Thanks Paula Jean for such a comprehensive response. You've certainly had your share of life's challenges.  Your response has given me quite a bit to think about.  Yes we are in Australia and appreciate that things might be easier here compared with the US system you have to navigate.  Would appreciate any other info you might want to pass on over time.

 Thanks again 

Hi Ozkat,

My brother lives in Brisbaine. His wife (my sister-in-law)  passed away from breast cancer about five years ago.  They lived in Coff's Harbour at the time.  I'll ask him what services she was able to access within the context of NSW (and Queensland if he knows).  I'll post to this thread any points he may be able to pass along.

Paula

Hello...

           When I was taking care of my Father and we had Hospice come in....they took care of all of his needs. The hospital bed, Oxygen....pain meds and even Ensure drinks. I live in the northeast U.S. if that helps....Hospice was heaven sent when we needed them. As far as doctor appointments ....once hospice came in my Dad was checked by the nurses everyday and they reported to the doctors. He was to sick to go to their office.  God Bless.....