What to do with my husband?

It's been a while since I updated and I have been busy looking into moving, trying to stay in contact with social workers and the like to figure out Mark's situation. Anyway, he is not longer in the ICU, but is in a skilled nursing facility. I tried talking to social workers about after his Medicare runs out, but they keep stalling, and I said "There needs to plan because I cannot care for him physically or emotionally. I cannot care for him, he needs somewhere to care for him." I have reiterated this several times. He gets dialysis three times a week and is supposed to be getting physical therapy, but that is hit and miss. Right now, his attitude is hit and miss he does not want to help me with the bills because he is not there. Anyway, that's a whole different can of worms about his mental state being on and off.

Many thanks for the update, DoggieMom.
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.

So, just updating on what I can let you know, as much as I know. They moved him from the ICU, but he is still in skilled nursing. I get different answers from different people on what is causing his confusion. I am upset because he got two new phones activated and they are costing $$ I cannot afford right now. I am going to tell him that he will have to pay them with his check (he gets disability) because I am saving up for the move. I will be honest, he most will have to stay in the local area for placement. I have no clue if he could be moved to NM or even if Medicaid (which when we are not together he will qualify for) pays for that. What is causing this? Some doctors say it is the pain meds from his amputation and probably the renal failure

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.

Thinking of you and thanking you for this update. I as an old retired RN know how amputation works and how often it requires revision after revision. It is not a good situation for one as debilitated as your hubby is.
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.

So, the update is there is NO CANCER. Thank God, one good thing. He did have the leg amputated right above the knee and things have been touch and go. He had to have a revision surgery (he was bleeding too much) and he is getting blood transfusions and tons of antibiotics. I have no idea how long he will be in rehab, probably a few months to regain all the muscle mass lost from being in ICU for over a month. He will have to have dialysis for the rest of his life (not sure if he would be a qualify for a kidney or no). The kidney failure was causing the plueral effusion on his lungs, which they still have to drain or he can't breathe. All I can do is respect his wishes to live. He wishes to live, and I respect it, but I also know I am unable to care for him. He will require A LOT of care. I have physically hurt myself trying to lift him and keep him from falling and this is when he was more mobile. I know now he will require a lot to help keep his health stable.

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.

DoggieMom,

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.

He isn't ready for Hospice if he is wanting to continue to fight for his life.
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 have been talking with the doctors and social workers about his options. It would be a rehab for a period of months and then skilled nursing. They do not think he would be safe to live at a home with the mobility issues as it takes a lot of people to care for him now. One doctor told me there is a 50/50 possibility he would die within six months given all his conditions and especially the risk of amputation. They cannot operate because of various factors, too low platlet count, too low blood pressure. The operation was scheduled twice and then canceled.

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)

I'm sorry that you and your husband are dealing with this. It is tough to make the decision on staying or moving when dealing with age and medical issues.

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.

It seems as if your husband needs to be in a skilled care facility where professionals can look after him 24/7. What you are describing is way too much for you and your elderly mother to handle even with random help from family. And insurance issues when moving to another state are a real concern.

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.

I have a cousin in Santa Fe whose husband had a heart issue recently while they were there. They came to the conclusion that the health care in NM is grossly inadequate and are moving back to California for his care.

Check into what kind of doctors and care your husband needs and whether they even have them where you're going.

Don’t hesitate to call in hospice if you need it.

The only good news was that the fluid they tested was negative for cancer. He has been NED for two years. However, considering the COPD, the need for dialysis, and the bone infection, I know it is too much for me. I can stay where I am short term through summer with the help of his nephew who has come up here to help me. My mother is 75 so she could really only be emotional support (I have Asperger's when I get really stressed and too much change it is hard). Robert, the nephew is trying to help me figure it out and honestly I could make it a bit on my own financially and with Robert's help with transportation in the short-term. I would need to move to NM since my whole family is there and the place I live is too costly for me long-term. The doctor's aren't telling me he's is near hospice. He has been in the hospital for 4 weeks where they found a bone infection in the leg (hence the need for amputation.

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.

I will really be honest with you. I cannot imagine a move on top of trying to negotiate and manage care for someone with lung cancer, a chest tube, hemodialysis. The coverage is going to be so off the charts different, and finding a care facility to accept a patient this in need, especially if on Medicaid? Just unimaginable.

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.

First of all, I am sorry that you are in this situation. It’s very hard to watch someone that we love going through declining health.

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.