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Sad rant

1StepForward2's picture

Just a sad rant.  I have no bios. Married 12 yesrs. DH has 3 grown sons 28, 33 and 39.  Like most step mothers I was caring and gave a lot and got nothing in return (no acknowledgement of my birthday or of any kind really).  I disengaged so I wouldn't be disappointed anymore. 

DH was diagnosed with a terminal lung disease and his only hope is a lung transplant for which he is currently undergoing intense evaluation.

His sons are aware of his diagnosis. DH downplays it tho not to worry them but it would be so nice for any of them to reach out to me see what is really going on and if they can help in any way. The only one who would help is the oldest who lives 9 hours away by car. The other two are 16 hours away.

If DH has the transplant I will be his primary caretaker.  Its a very stressful time right now. Would he nice to have some family involvement and not have to deal with this alone.

sandye21's picture

Is there enough money to afford a 'helper' to come in and assist you with the care of your DH?  If the Skids are like this now, you probably won't want to be around them if they do come over to help.

1StepForward2's picture

I like "be careful what you wish for", haha. How true. I need to look into home care for  him thru insurance. We were told by the team at the hospital that insurance doesnt cover it but it looks like it could be. My neighbor offered to help so at least I can get a break at times.

JRI's picture

I'm so sorry to hear your sad news.  How upsetting, you must be worried to death.  Do you have any other family near? Sister or brother?  I wonder if there is a support group for your DH's condition? It seems like there are many medical people on this site. I bet they will have suggestions.  Thinking of you and your DH.

1StepForward2's picture

Thank you. I have no siblings and DH's sister is estranged. No orher family. Will look into home care if qualifed. A neigbor offered to ne a backup so that will help. 

JRI's picture

My aged mother was caregiver for my disabled sister, long story.  My sister has passed now but in our journey we found help many places.  For instance, her cleaning lady's niece had once worked in a nursing home so they hired her for awhile.  They used a commercial service, in home help, all were good.  I'm not sure what other help you need or qualify for but they had Meals on Wheels.  In our medium-sized city, there was a brochure with many government-sponsored services.  And, yes, contact your health insurance company.  It is so tough to figure out this stuff when you are emotionally overloaded.  It is hard.

Kes's picture

I am sorry about your DH's diagnosis - but I think you may as well discard the idea of his sons being any help and support.  I would encourage you to get in touch with any support organisations for the diagnosis DH has, either local - who may be able to suggest sources of practical help - or internet forums similar to this one. 

tog redux's picture

Honestly, provided everything goes well, he won't need a ton of care. The first couple weeks after he gets out of the hospital he will need help cooking, etc - but they get people up and moving around pretty quickly after transplants and while he will undoubtedly be tired and sore, he won't be bedridden and needing round the clock care. You'd be surprised how quickly people with transplants bounce back, again, provided they are reasonably healthy other than the organ that's failing, and everything goes as planned.

But - if he does need help, get a friend to help out, don't count on the skids.

1StepForward2's picture

For this. I am on a lung transplant forum and some people do say that. As caretaker I will need to be with him 24/7, manage his meds, change feeding tube, change bandage, help him shower. Seems overwhelming right now. I will be taking a class.
Maybe you know why the doctors and even the social worker say insurance wont cover home care for this. DH has Medicare and an excellent supplement. When i called Medicare there is coverage for a limited time (nurse will change bandages, etc) but has to be approved by the doctor. Really wonder why this is being discouraged. 
As for sks I struggle with what to do if DH doesnt make it to transplant.  I think in that case I would have to let them know or at least the oldest.

tog redux's picture

I did help a family member post transplant, but it was kidney, not lung - lung is a much more serious transplant, though the recipient I helped did have a double nephrectomy, which is far more significant surgery than just a usual transplant. No feeding tube, though.

I'm guessing these are all things that the recipient or his/her caregiver can do, so a nurse isn't needed.  The person I helped was in his 40s, and since your DH has Medicare I assume he's over 65 - the age difference and the seriousness of the surgery might make your DH need more care than the person I helped.

1StepForward2's picture

For this. I am on a lung transplant forum and some people do say that. As caretaker I will need to be with him 24/7, manage his meds, change feeding tube, change bandage, help him shower. Seems overwhelming right now. I will be taking a class.
Maybe you know why the doctors and even the social worker say insurance wont cover home care for this. DH has Medicare and an excellent supplement. When i called Medicare there is coverage for a limited time (nurse will change bandages, etc) but has to be approved by the doctor. Really wonder why this is being discouraged. 
As for sks I struggle with what to do if DH doesnt make it to transplant.  I think in that case I would have to let them know or at least the oldest.

JRI's picture

I sense that your underlying concern is that the SKs aren't being supportive. It sounds like you took on the mother role so now its very disappointing.  There is probably nothing you can do about it.  To put a charitable spin on it, perhaps they dont know what to do or say.  I would let them know about the main events, like, "Dad is going in for his transplant Monday".  See what happens but don't depend on them.  Perhaps they will surprise you.  In any event, the main concern is what's best for your DH and you right now.  Goid luck, let us know how it goes.

Rags's picture

I can't comprehend family abandoning a parent during a health crisis.  I moved in with my parents for a few months after my dad was Dx'd with prostate cancer to help with his post surgery recovery.  My mom is having her pace maker replaced tomorrow afternoon and I am heading up to their home in the AM to be there for her procedure and to be of help for a week or so after her procedure.

Certainly all families are different, but it is beyond me when they do not come together for a health crisis.

JRI's picture

All best wishes for your mother and hoping for the best outcome.  Take care.

Hesitant to try's picture

As another poster suggested, I'd at least give them a chance to step up and do the right thing. Let them know you're worried and could use some assistance. If they suprise you and are helpful, great. If they don't, nothing lost. I understand your DH doesn't want to worry them, but they're grown men and they can help. I was the primary care giver for my former husband as he battled cancer and it's exhausting in every way. You need to get help lined up. If it can't be his own children (as it should be), then I hope you find other support. Very, very sorry about his diagnosis. I hope all goes well with the transplant!