What to do with my husband?
I will probably have to move back to NM where my family is. I have to work full time. My husband, Mark has COPD, had lung cancer (NED). He will need hemodialysis and a chest tube drained. He will be getting a leg amputated so mobility will limited. I do not drive in the big town, but could in smaller town. I know he will be mostly immobile. If I move how could I help him find a place for full time care. We currently live in Dallas and would need to move to NM. He would need to wear adult diapers or might be able to get on bedside toilet. I do not want to abandon him but cannot be a full time caretaker. Advice?
There are 24 years age difference. I have been caring for him helping him transfer in and off bedside toilet. I am just worried what to do if he needs more care and I have to work full time. I wan to move closer to my family where my mom could watch and we could get home heath to drain his chest cathader. I am worried finding transport for hemodialysis.
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I would research facilities in the area where you are planning to move.
Contact Council on Aging in the area. They are a great resource and will help guide you through this process.
Wishing you and your husband all the best.
I think that you need to have a discussion with the doctor that is absolutely spot on honest. I can't know the prognosis here, but things do not sound good. Attempting a move this dire is almost impossible to imagine. I don't think you will find many willing to accept his care from doctors on. I don't think you will find good dialysis facilities. I am afraid for such a move.
Where do you now live? Have you access to transportation. I think that you may be looking at staying put, and even at considering placement where you are for your husband. Perhaps even learning to drive by hiring a driving instructor where you are.
Is there ANY chance at all your Mom, who apparently is considering helping you in care, would relocate to YOU for some time, or is that out of the question for someone already perhaps sacrificing too much?
I will just tell you that dealing with lung cancer severe enough for the need of a chest tube and hemodialysis, is more than ENOUGH. Negotiating a move like this is just beyond my imaginings.
You are going TX to NM. If hubby is on Medicaid at all have you looked into differences in the States? Sorry to assume, but with upcoming amputation you are looking at SO MANY dire diagnoses for him, including an ongoing COPD.
My best out to you. I hope, whatever your decisions are, you will keep us updated. Your profile makes mention of five dogs. To be honest, I just cannot imagine the amount of overwhelm you currently have WITHOUT a move.
I am looking ahead to the long-term and I don't want him to feel I left him, but I am being honest that within about five months I will need to move back to NM for my mental health. I wanted to care for him (we have been married 15 years, btw) but all this is just too much and I do have to work full-time to pay for things! It would really be hard to place him and me move, but I have considered it the worst. I could fly up to visit from time-to-time. See, I can drive in small areas but not the HUGE areas with massive traffic in Dallas. I am from a smaller town where I can drive.
I am looking at the worst he would probably need a nursing home or hospice care. The doctors have not said hospice but it is probably what is looking like.
Check into what kind of doctors and care your husband needs and whether they even have them where you're going.
Texas, where you live, has many small towns where you could be comfortable driving. I’m thinking of towns not far from Dallas, such as Gun Barrel City, Corsicana, and Tyler, where there is a good size hospital with good care. Check into such places and the skilled care facilities there. With husband in a care facility, much of your burden could be lifted. There’s employment in the towns I mentioned. People are friendly and you’d find resources to help you.
To me that makes more sense than moving close to family in another state and giving your mother more than she can handle. The family trauma and expectations may not be worth it.
Good luck, and I’m sorry for this sad situation.
My Husband and I moved my MiL from the east to NM in December, she had lung cancer and was massively underweight. The trip was rough on all of us and once we got to NM she was admitted to the hospice here.
I found that the difference in services in NM was and is awful compared to what she had back east. Before making the move, make sure that all the services your husband needs are available where you are planning to move. Line up doctors before the move so he can be seen as soon as possible after the move.
I will say that even knowing then what I know now, I would have came home, and still given her the choice of staying back east in a NH or coming back with me.
I cannot blame him for wanting to fight and live, and I understand he has a chance. Trust me, I would not put his care of my mother. I am mentally not healthy enough really to continue alone especially when I have my mental attacks. If you have seen autistics stem and babble and bang then this would be me when I get too stressed. I become unable to talk and paralyzed. I am not trying to abandon him, he needs care, and it is way more than I know I can offer. It used to be I simply helped him to into the wheelchair or simply mobility things, now it is most likely being bed-bound. I have to work as rent and other utilities cost money. I would be where I am for a little while, a matter of months before I could move, but I would want to see if they could help figure out something for him. Maybe they could eventually have him come where I am, I don't know, but I agree with others that he is not stable enough to be going anywhere long distance.
We are at a rock and a hard place. He is not stable enough for surgery but keeping the leg would mean the infection spread most likely becoming septic (he is on a ton of antibiotics). I do not think he realizes how many machines are helping him right now: Dialysis, IV for antibiotics (esp. blood pressure)
The patient entering hospice accepts and recognizes that his/her life is over and that he has reached dying. That he/she accepts this and wishes to be made comfortable. No more treatments and no more tests. There are even patients who refuse further dialysis, thus helping them toward this final exit.
It would be my choice rather than the misery of a prolonged fight.
But it is an individual choice in which the opinions of others, even family and medical choice is not/should not be a factor.
I found this. It's in Tyler, TX.
I have heard of someone who went there for care. As I recall, it was a positive experience in a difficult situation.
https://tyler.continuecare.org/
Tyler is a lovely town and nothing like the Dallas area.
Home health isn't an option because he requires more than just occasional bathing or feeding, this is full time lifting, shifting, etc. Can he regain some mobility to help? After some rehab and therapy, that is possible, but I am not sure how long it would take, a long time and I have to work so yeah. It's a mess ya'll but thank you for your prayers.
You are honoring his wishes and good on you for that. But do know that at some point, if there is sepsis or something similar, with all the other things going, an MD may level with you that the fight is over and he cannot make his own decisions for his own comfort. I know you have faced that in your own mind, and I think no one would suggest transplant for your hubby, ever, given his underlying problems.
I can only wish you luck, but I do want to tell you also that you are SO RIGHT in now facing that you cannot do the care at home any longers. PLEASE consider calling in the social workers now and at once to tell them that home care, even with good rehab progress, is unlikely to be for you at this point. Not physically and not mentally and not even in the equation given you will need to continue to work.
This means your work is cut out for you. You will have to contact discharge planning EARLY in the rehab to tell them this.
Your next stop is an elder law attorney because you are going to have to work on some sort of division of finances and protection of your own assets. Long term care for someone young as your husband can work down your shared finances to leaving you flat other than 100,000 or so. And that isn't something you can afford not to face now. Gather your assets statisitic and your last taxes and take them to an attorney for advice in which long term care figures for the man you love, and perhaps on going for some time.
I know your plate is full. I can't know what support you have--I hope it is lots.
But right now you need both to face the day to day uncertainty and the certainties or what is coming in terms of long term care.
I surely keep you in my thoughts and wish you BOTH well.
His state of mind is in and out. There are times he makes no sense and he is very weak (he can barely pick up a phone at the moment). He was saying things like "Hi God, let that kid cross the street" and then yesterday made perfect sense. I decided to no longer listen to his demands because I can't for my mental health.
Any number of things or combinations of things are causing confusion.
FIRST of all confusion is COMMON to ICU as is amnesia afterward.
He should not be handling business and such at this time.
I think you may consider with an elder law attorney if division of finances not a good idea.
No Medicaid does not move people across state lines.
Moreover it is a mess because Medicaid is a combo state and fed law and every single state differs completely for another. To get him off Medicaid in his current state and on it in another is a mess. I am wondering if this move thing, unless you plan separation, is not magical thinking on your part.
As to your hubby's condition, his confusion could have to do with toxins building in the blood, with poor 02 delivery to the brain, or even to some dementia setting in with all the other trauma and illness. So doctors are giving you their best guesses and they will differ according to their specialty.
So sorry things are not looking up. This is difficult and not getting better it seems.