Ex husband in hospice in my home. Bed ridden. I need help with bowel incontinence. He has a urine catheter.

Which is it? Profile says hospice wants to place ex husband in your home.

Question says he is in your home.

If he isn’t in your home, refuse to take him into your home if you don’t want this responsibility.

Where was he living before? Alone? In a facility?

How did hospice handle his bowel issues?

Best wishes to you.

Few questions for you.
Who is “they”?
If he is an ex you have no responsibility to take this on. And no one can “force” you to take someone into your home.
The Hospice Social Worker can help in finding other options that would be suitable.
IF you do want to take this on Hospice can show you how to care for your ex. You also can have HIM pay for caregivers that can aid in his care

I'm kind of with the others here, wondering why you have stepped up to take care of your EX husband. You obviously are a much bigger person than I am. But all that aside, I'm gathering from the wording of your question, that he is already in your home, so here's what I will share. My husband too was completely bedridden, with a supra pubic catheter, and under Hospice care in our home, for 22 months. I had to hire an aide to come every morning to put him on the bedside commode so he could poop. It did take a little while to get his body on that schedule, but once it was, it worked like a charm. I can tell you it's much easier cleaning someone up, when they are standing(or in my husbands case, being held up,) then trying to clean them while they are laying down. The aide would hold him up, while I wiped and cleaned him.

Also when the Hospice aides come to bathe him,(which they normally come twice a week) if he has any poop in his diaper, they are required to change him and clean him up. I hope that was helpful, and I wish you the very best.

I am sorry to be so confusing. All of this has been put on me at 4 pm yesterday. I am trying to help with him because he has no family, children or friends. He is not here yet. The hospice case worker is telling me sometime, next week they will try to get him here. He is in Georgia and I am in South Carolina. So he will have to be transported via ambulatory vehicle. I still work full time from home. He is a vet. I am in a tizzy to get things in order on a holiday weekend. He has asked the hospice worked to come to be with me. I would feel horrible if he died alone. The hospice worked told me they did not bathe or help with toileting. That I would have to hire someone to help with that. He has no savings. I mean not even one penny. He has SS and Medicare. I am not being a martyr. I am trying not to be selfish.

Wait. Please stop and think long and hard. You are NOT being selfish if you decide not to do this. It will be much easier for hospice to get him a placement now, then for you to try and do it later.
Caregiving is hard enough when you’re NOT working a job, let alone when you are trying to give your attention to outside employment as well, even if it is in your home.
My FIL, given two months to live, was on hospice for 18 months. Can you seriously see yourself being able to do this for that long?

Seriously reconsider this. Once he’s in your home and the hospital has shifted responsibility onto you, it will be so much harder to place him elsewhere if it becomes too much.

I help my paralyzed father with his bowel movements but I was extensively trained by his spinal cord rehab to do so and we have a tidy routine for it. And he is a sweet person so I don’t really mind. I am not otherwise employed and he pays me (not a lot, but still) as his caregiver. But it is still not fun.

Doing all this care this for an ex you hadn’t been with for years, out of your own pocket, sounds unsustainable to me.

Thanks for clarifying for us.

First and foremost, you have a beautiful heart! I respect and appreciate that.

I understand that you don’t wish for him to die alone. I understand that he is poor. I understand that he has no one else. That does not make it your responsibility to care for him in your home.

I have a question for you. Do you want to do this? Even if you do, it doesn’t sound like it’s practical to do. You work full time. You won’t be able to care for him.

How do you know exactly when he will die?

He is on hospice. He needs a lot of care. There are many hospice organizations. Some are better than others.

Think long and hard about this. If you are just doing this out of guilt, please think again. Guilt is not a reason to do this.

Trust me, you will regret it. Stick around, you will hear stories from a bazillion people who regret their decision to care at home, myself included. It’s so hard.

Of course it is your choice. I support you no matter what you choose.

Just know what you are signing up for!

Are you planning on hiring additional help?

Speak to a social worker and the nurse before taking this on.

Charleston, he can go to a hospice facility that can be paid by Medicaid.

Do NOT take him into your home. Be his advocate, be his kind visitor. Do NOT become his 24/7 caregiver.

Please make the hospice coordinator aware and have him placed in a hospice ward or center. You don’t have to take him in.
There is nothing wrong with the way you feel about incontinence care. Many folks can’t cope with cleaning up bowel movements.

If you take him to your home he will require 24/7 care. Hospice will tell you someone will need to be with him all the time. Yes hospice may provide a bath aide but only 1-2x/week. That’s all they have resources for. The burden will be on you.

Work to have him transferred to a dedicated hospice unit. Medicaid will pay. Medicare will not cover the cost of the room, I believe (I could be wrong).

The State of Georgia would love nothing more than to get him to you in South Carolina!

Tell the case manager that, for personal reasons, you cannot go forward with their plan and accept him into your home. You do not owe them or your ex-husband any further explanation. I agree with Barb - "Be his advocate, be his kind visitor. Do NOT become his 24/7 caregiver."

Congratulations on your sobriety!

Don’t place your mental or physical health in jeopardy by taking this on.

Why can’t he stay where he is? Aren’t they concerned about him traveling?

Please politely refuse to take this on this responsibility. Listen to your head and others here, not your heart. I admire your compassion, but really, as your nurse friend said they are trying to dump the problem elsewhere. If you did take him in, I think you'll quickly realize you are in way over your head. The State of Georgia has a responsibility to ensure his safety, what you can do is be his advocate and make sure that he is taken care of, but not in your home.

Charleston; I understand that you have a big heart. But right now, you need to practise some self-care and self-preservation.

Your ex's medical issues are the problem of the State of Georgia and the Veteran's Administration. You are an EX wife for a reason, I assume.

Do NOT accept what the hospice worker is proposing. "I can't possibly do that" is all you need to say. "My circumstances don't allow it" is another good line.

We have another poster whose husband is in a similar state; he was also supposed to be "almost dead". He is still here and kicking several months later.

Please. Don't do this.

Charvesting, you are NOT being selfish. You are being practical.

Thanks for your response.

I understand that your faith brings you comfort. I find comfort in my faith too but you are not obligated to be a caregiver to him.

I pray as well. I prayed for help with coping as a caregiver to my mom. I eventually had to end caregiving because it became too much to handle.

You have a full time job that needs your attention. Do you really want to do this or are you doing this out of guilt? Guilt is not the right reason to do this. I made that mistake and it nearly killed me.

We are not all called to be Mother Teresa. Mother Teresa was a beautiful caregiver. Keep in mind that Mother Teresa had her order of nuns helping her. Mother Teresa also suffered with deep depression. There is a price to pay with extreme sacrifice.

I don’t think this is a decision to rush into and regret. Is this what you truly want to do in your heart of hearts?

You can support him without being his caregiver. He is your ex. You do not owe him anything.

I can’t believe the hospital wants a complete stranger to them to agree to take this on, sight unseen, with no training on how to care for a frail patient, how to manage his catheter, how to safely move him, managing his oxygen, feeding him, etc.

AND they are trying to tell you his caregiving really won’t be a big deal because he’ll be sleeping a lot?! That is a load of baloney, I’m sorry.

Speaking of sleep, will you be needing to get up at night to turn him every few hours or otherwise assist him?

Charleston,
Let’s just look at the sheer volume of hours that caregiving for your Ex will take. You have mentioned emptying bags. Catheters. Toileting. There is also bathing and grooming. Will there be meals involved? A feeding tube?Add up those times. Multiply it by time and a half, for days when things don’t go to plan.
Then, add up the hours that you are SUPPOSED to sleep. Subtract time that will be devoted to your Ex in the middle of the night, should that be the case.
Would you be able to work and deliver cakes in the time there is left? Also, hired people call in sick. That would leave you on duty, leaving the potential for you to have to break contracts.
Just some more thoughts for you to consider. I wish you the best.

NYDaughterInLaw is absolutely correct in this matter.

This happened to myself and a couple of my close friends awhile back, (pre Covid).

A friend of ours was single, never married and was diagnosed with colon cancer. He lived life on his terms. He was a very nice guy but wasn’t the type of person that planned for the future.

He wasn’t improving much to his cancer treatments.

He had a serious stroke and wrecked his car and landed in the hospital full time.

We were asked to assume POA by his doctor because he had no living family.

We were asked to bring him home. We refused but continued to visit him in the hospital.

Our friend understood that he couldn’t come live with us.

The state of Louisiana found a NH placement for our friend. We went to visit him at the nursing home.

He had not saved money for his burial and the state placed him in Potter’s Field.

The state will handle these situations. They will try to find someone to help as they did with my friend but if refused they step in and find placement.

Talk to a hospice social worker and explain that you cannot care for him anymore and they will put him in a hospice facility.

Update...
I have been praying off an on and doing research and getting experience from your wonderful people. The first call I got this morning from the hospital case worker, Richard, said that it would be around $9000 to transport him here, to Charleston SC. He suggested a hospice center 5 minutes from the hospital. I googled them. It appears to be very nice, up to date and clean. They only do hospice. It is not a skilled nursing facility. It sounded like it is covered by hospice, Medicare and Medicaid. I mentioned that Nic is a Vietnam vet as well. He said the hospice center will get all of that paperwork started after they talk to Nic tomorrow. The name if the center is Columbus Hospice. Have any of you ever heard of this center?
https://www.columbushospice.com/tour
I had to make that call to Nic and explain to him. I cried. I didn't want him to think I was getting rid of him. That I was only thinking of his comfort. And that I could not afford to hire outside help to help me. That hospice only came 3 times a week and that I would need more help to keep him comfortable. He understood! Hopefully he will be going to Columbus Hospice this week. After that call, I had to call the vet where his dog is being boarded. Again I cried, explaining to them the situation. They were so very kind. They love Balto(a beautiful Malamute husky). They have adopted Balto, for themselves. They will place him, only in a home, with a full background check. They actually came to the apartment where Nic was living to get Balto. I trust them.
But all of you have helped me clam down and make clear headed decisions. It has only been 3 days since all of this started, but it feels like a month.
Thank you for all your experience, strength and hope!

Charleston,

I am so very proud of you! You made the right choice.

My oldest brother died in an ‘end of life’ hospice facility. The entire staff was incredible! They will offer a social worker and clergy as part of their services. The hospice nurses are fantastic and he will be kept comfortable.

Thanks for keeping us posted. Please check in at any point in time.

You have a lovely heart! I understand your emotions but I am so glad that you thought it through and realized it wasn’t practical to do.

I envy your baking skills! I heard a beautiful story today of a woman who has a bakery and has been baking birthday cakes for children during Covid.

Dunkin Hynes heard about her generosity and donated $5000.00. Very sweet of them to do.

Charleston, big (((((hugs)))))))). You are doing the right thing by Nic. Hospice centers are, by and large, awesome places.

I love that Nic's dog's name is Balto. There is a statue of the original Balto here in NYC.

It just never ends...I just got off the phone with the hospice worker that will interview Nic tomorrow. She says the hospice center is only short term (as in 2-3 days) if his pain management is more than the center is equipped to handle. Longer if it matches their criteria. I can not get the same answer from anyone. Nic was working up until August, which is when all of this started. He is still receiving COBRA insurance. So I can not be on Medicare or Medicaid. I am now having to research, if he can be terminated from work while he is in hospice. So right now he has work insurance, and they cover hospice. Then it depends on what the doctor says about if his symptoms are manageable at the center.
My heart goes out the all of you that have been in this swirling, vortex of confusion and incongruencies.

Charleston,

It doesn’t matter what they are telling you. They WILL find a place.

They aren’t going to throw him out in the street.

They are baiting you. They know he can’t be alone.

They pressured him for someone to go to. He gave your name.

You have told him that you can’t do it. He understood.

Stick to your guns. Don’t cave, and change your mind.

Trust me, they will locate a facility. May not be hospice. It may be a nursing home but that’s fine.

He can request hospice at his nursing home if he desires their services.

Another update...
Finally, they have he accepted into River Towne Nursing Center, in Columbus Ga. Just a few minutes from the hospital where he is now. His Medicare is in place and I signed and sent back the Medicaid paper. I have been told that hospice will be coming in 3x a week. So he will have the doctor at the center and those nurses and then the hospice doctor and hospice nurses will be coming into as well. I am not a fan of nursing homes. I have heard such horrible things. But I find a little bit of comfort knowing the hospice team will be seeing him as well. I had made plans to go see him, but they will not let me in because of Covid. I promised him a long time ago I would take care of him when he got old. He is 15 years older than me. I feel like I've not followed through on my promise. I just don't want him to die alone. We are ex's for a reason. But he is a human. I would never wish anyone to die alone.

Charleston,

If I were giving out a prize for the ‘biggest heart’ I would give it to you. I really would.

You’re the kind of person that all of us would like to have for a friend. You are loyal. You are true blue.

You have had your own challenges. You met those challenges, with flying colors.

I have no doubt that people helped you along the way.

No one makes it through life without the help of others. If they say they did it all on their own they are lying.

You seem to be the type of person that never forgot their struggles and is humble and gracious.

I can imagine that you are extremely grateful and sincerely would like to pay it forward. I admire that more than I can put into words.

Like anything else though, there are exceptions and we must force ourselves to look at the entire situation.

No one is a ‘fan’ of nursing homes. I can appreciate that statement.

The fact remains that nursing homes are a necessity in our world.

You are correct, there are awful stories. There are good and bad stories with everything. Take comfort in knowing that he will have hospice.

You have not failed him. He understood that you couldn’t care for him. He knows that you are a human being with equal importance to him.

They pressed him for a possible caregiver and knowing how caring you are, he mentioned you.

No one wins if you sacrifice yourself for his care.

Allow him to be independent and have dignity. Allow yourself to remain the positive light in this world that you are.

My brother was an addict for the majority of his life. I would have loved to have been able to see him succeed like you are in your life. Allow your ex as your friend to admire that extraordinary quality in you.

I am sure that you don’t take your sobriety for granted. Your ex doesn’t either.

The last thing that you need is additional pressure in your life from caregiving.

Even with the help of hospice it is a challenging job.

Unexpected challenges arise at the most inopportune times while caregiving. It is truly exhausting!

Sorry for the lengthy message but I saw my brother struggle so hard with his drug addiction and eventually die from HepC. It warms my heart to see a success story like yours. You deserve the life that you fought for. Don’t you think? You have earned it.

I spoke too soon...
He had too much in the bank for the facility they were going to send him too. So he doesn't qualify for Medicaid. They keep saying they can't help me. So what do I do now. They have to find him a place. He has Medicare, but I read that Medicare doesn't pay for a skilled nursing facility. So am I understanding all these people in nursing home have saved money. What happens when their money runs out? I have been sick to my stomach all day. I just spent $103 faxing 42 papers over to the facility and then they tell me they can't help me. What if i just flat out say I'm not willing to be involved any more?

Charleston,

You have made your decision. Your ex has accepted your decision.

Therefore it is not your responsibility. I know that you are concerned. I understand that you care about him.

Nevertheless, you do not have to care more about him than you do yourself. I don’t think he would want that for you.

Tell them that you have discussed the situation with your ex and explained that you cannot care for him.

Remind them that you have explained your circumstances and you do not wish to be contacted in the future regarding your involvement in his care. It is not an option that they should be considering.

They will find a way to find a facility for him. He may have to forfeit his money but that is his issue not yours.

I hope it works out as best as it possibly can. Have faith and remove yourself from the equation.

Take care.

Charleston,
If you had changed telephone numbers, they would have to find another solution. You don't have to be that solution.
Colleen

Final update.
Nic passed away yesterday morning at 3:50am. The nurse called to say friends and family should come to the hospital. When I told her I was in Charleston I get a flight but I would not be there until 5pm. She said she felt that it may be too late. So she held the phone up to his ear so I could tell him I loved him and he was a wonderful man. I really hope he heard me. She said that he passed peacefully. It just eats me up that I wasn’t there to hold his hand and kiss his head. He kept it shaved and I could always smell his essence. So I flew out anyway and went to the hospital to pick up his things. Then I went to the hotel and came to the funeral home this morning. I wanted to see him one last time. But he wanted to be cremated and they don’t embalm for that. I would not be able to see him in time to get everything else done. But the man was kind and let me know how sick Nic was & that I should prepare myself for that. So I didn’t see him. I went to his apartment to gather up the things I wanted shipped to me. I thought maybe I could smell him there. But he hadn’t been there for a month so his smell was gone. He didn’t smell bad. He smelled like Nic.
Thank you all for advise and kind words. I have certainly learned a ton in these last few days. Thank you.