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Husband is mostly bed bound. Taking care of incontinence and stroke issues. Getting dependable care has not worked.


I hate having to care for him after many years of not being cared for or provided for by him.

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If you were not cared for or provided for by your husband for many years, why did you not divorce him? Trying to care for someone who's bedbound and incontinent is a very big job, and one that's too big for you to accomplish alone, I'm sure.

Now that he's bed bound from having strokes, your choices are to either keep hiring in home caregivers through an agency, or have him placed in Skilled Nursing permanently where others can care for him 24/7. You can apply for Medicaid to fund his stay in Skilled Nursing if you cannot afford to private pay. Consult with a Certified Elder Care attorney for guidance on that matter and to find out how to keep your home intact for yourself at the same time. You don't want to be left destitute so your husband can live in a nursing home! That's where the EC attorney can be helpful.

Wishing you the best of luck finding a solution to this issue.
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AnnReid Aug 2022
Should coulda woulda, quote Judge Judy.

Too late to benefit from what happened in her past history.

YES to the lawyer! And the best she can find.
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You don't have to care for him if you don't want to. Place him in a nursing home.
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Justperforming Aug 2022
He refuses to go to a nursing home. As long as he is mentally competent and wants to go home, a nursing home/rehab cannot keep him. He was brought home by an ambulance a few weeks ago after rehab.
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Yes, I should have divorced him many years ago. He doesn't deserve any of the care I am giving him. But, I am a forgiving person, mostly at the cost of my own self respect.
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LoopyLoo Aug 2022
Why? It’s never too late to change your mentality.
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If you reach the end of your rope with all this, which would be understandable, go see a lawyer about filing for divorce or legal separation now. See what your options are b/c in reality, you are not tied down to personally caring for this man 24/7, whether he 'wants to go into a nursing home' or not. Sometimes that choice gets removed from a senior after a series of strokes leaves them bedbound and incontinent and no reliable caregivers can be found to care for them.
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Ok, I am not a lawyer & I will ignore any past obligations (or lack of) affecting the present. Let's focus on now.

These are my observations;

1. Wives do not need to 'obey' in this day & age.

"He refuses to go to a nursing home. As long as he is mentally competent and wants to go home, a nursing home/rehab cannot keep him".

Ok yes (as deemed competent) he can choose his living arrangements BUT he must choose from real world options.

So he CAN refuse a NH.

But he CANNOT make YOU be his caregiver. See the difference? You are a free adult able to say no, this does not work for me.

He then must find himself an alternative full-time care arrangement. Round the clock staff - either in his home or in another place.

2. We could assume, expect & hope a spouse cares for us - but the reality is it is up to THEM, based on their decision & limitations.

3. *Care* can be provided in many ways. All day servitude with your own 2 hands is NOT the only way.

4. Move your focus from 'he refuses' to what you will & won't do. Then tell him. Simply. Make it crystal clear.

Eg The facts, what you will do, what he can do.

The facts are the stroke has changed everything. Your care needs are very high.

I have arranged an elder Social Service for a Needs Assessment. This will help us. This will highlight what you need. Then assist find the help you need.

You can help by being reasonable. You will be able to have a say, state your preferences & decide from what is available.

Best of luck, Justperforming.
Take the reins now!
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Cover999 Aug 2022
"For Better or Worse..."
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Your option after Rehab was to tell them you could no longer care for him and discharging him to home would be unsafe. Then they can transfer him to LTC. He will have no choice if he is 24/7 care and no one is there to care for him. Next time ur in this position tell them you can no longer care for him. Do not let them tell u they can get you help, it will not be enough.

You need to see an Elder Lawyer to go over your options. One is having your assets split. Husbands half going towards his care in a facility. When gone, he applies for Medicaid. You keep the house and a car. You are given enough of your shared monthly income to live on.
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Tell him he gets the same care he provided for you. As far as that "for better or worse" comment, sounds like he broke the vow a long time ago. You know what they say about karma.
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I told my mother when she first started declining, "I'm sorry, we need to find a caregiver here, or an external facility that will be able to keep up with the care you require because as your daughter with no medical training, I can't." She enjoyed the free care I was giving but my back, ankles, shoulders, knees, and mind did not.

Put it plainly. "Your medical care goes beyond what I am able to do." Expect the pushback, and then, push back. "Sorry we need a caregiver / nursing home to see about you because the current situation is not working." And leave it open, without saying for whom...
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I would find a good nursing home and visit him a few times a week. I realize it is hard knowing we are judged by others when we place our family member in a home but your job of being his caregiver is huge and overwhelming. When I placed my mom in an assisted living I felt the guilt but taking care of someone 24/7 is just too much. {ps..moms whole day is about changing pads , wet beds etc}. Good Luck.
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AnnReid Aug 2022
Who the heck CARES what ANYONE thinks of US when we live with the consequences of closing the door at night to leave yourself with someone who “stayed for his own selfish purposes”?

If you find the BEST CARE HIS finances permit and he will be cared for SAFELY and HUMANELY, YOU’VE PAID your MORAL BILL.

The rule in our house is that good care for one of us does NOT indicate enslavement of the other.

That means doing the best self care now, a realistic plan for the future, and awareness of past history that has brought our decision making to where it is.

Find the very best outcome for YOURSELF, OP, then use the best tools at your disposal to execute it.
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What a tough one for you. Putting aside for a moment "that took no responsibility for me for many years", I personally won't take on being someone's carer on my own, rather I will take part in 'some' care duties for family members. This applies to my hubby who takes good care of me. He knows this and I too have told him very clearly that I do not want him to be my carer either. I think this because it is too much to become someone's full time carer in my opinion. Too much in every way. I am not in this situation , we are both mid fifties, so easy to say for me atm I guess. I look around at older couples (my mum and dad, my in-laws, who have now passed and some other elderly couples too) whereby one person has become the other partners carer effectively and the 'carer' seems overwhelmed and resentful to me...very much so, yet they continue with this carer role out of duty....not love it seems.
Now being a carer for someone "that took no responsibility for me for many years",
oh my! I would imagine that the resentment will get the better of you. I believe when resentment festers within (you say you hate having to care for him) , it can make you ill. Number 1 rule in my book which I am doing more and more (I have done so much inner work on healing from narcissistic abuse) so is to look after ME first and .....unapologetically! Final words....put YOURSELF first! Good luck.
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Good advice here. Please remember that one person can CANNOT do it all, & shouldn’t try. You can’t do a very good job of caring for another until you take care of yourself first! Do that, then do what you can handle without compromising your well-being!
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I do understand. You sound burned out. Caregiving is very daring in every way. I really don’t know haw to advise you. Just letting you know I’ve been doing it for 23 yrs and it’s tough.
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Call whatever the aging care agency in your area is. Tell them you are no longer willing or able to care for him. Ask for assessment and help. It is a legal quagmire, I imagine. You may need a lawyer. You may be responsible for paying for his care, or part of it, depending on the legal status of your marriage in your state. My mother in a somewhat similar situation was told she would have to do so for my father. It will also depend on your finances, and his. I agree, free yourself if this is how you feel. See what your options are. You certainly cannot be made to physically to be present to care for him. The rest needs to be determined, including your home and who leaves. If money is not the issue, leave or move him. It will be cheap at any price in that case.
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If he is bed ridden, why have you not contacted Hospice? First talk to your doctor and he will advise you if he qualifies for Hospice. My husband has been with them for 7 months and they come 3 days a week to bathe him, a nurse comes once a week, and they have volunteers that will come sit with him so I can get out of the house. Believe me, I know, you cannot do this alone. Get some help....
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Feliciamcg Aug 2022
Do you get the volunteers based on income? My dad is on hospice and we've not been able to find anyone to sit with him and it's very draining!!
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@Apeter...
your comment that a nursing home will rob children of their inheritance....
Not many things get me as much as someone scrimping and saving FOR their children's inheritance.
Is that what you did when you first started working, putting money away for someone's inheritance? Is that what you did as you earned more and saved more? No, you lived your life and said I am saving for my retirement. (at least that's what most people do)
I would much rather spend my children's inheritance on ME so that they don't have to care for me.
I saved my money for my "old age" so that I can pay for the care that I need.
I know what it is like to be a caregiver, was caregiver for/to my Husband for over 12 years as he declined with dementia. I would not want nor expect that from my kids.
Inheritance be da***d (sorry funkygrandma) I will spend my money for my care if I need it. If I don't then I hope that I will spend what I have on what I want, if there is anything left they can have it.
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PeggySue2020 Aug 2022
Oh, so we are redacting “dam” now? As in Clark Gable telling Scarlett o Hara “Frankly me dear, I don’t give a dam?” G rated in 1939.
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I saw this situation with my parents. Dad was NOT a caregiver in any respect. He expected my Mom to wait on him hand and foot which she did, up until dementia intervened. He then berated her mentally and made living with him terrible. I made a cross country move back into their home to help, after Mom fell getting out of bed during the night breaking her arm and pelvis. I cringe at the thought of how long she laid on the floor crying for help (possibly for hours) while my Dad SLEPT across the hall with his door closed to her. He was so out of touch with helping anyone! I managed to help for almost 2 months when I reached my limit. I was going day and night with only a couple hours of sleep. Mom was up and done every 15 minutes to 30 minutes 24 hrs a day. Dad would not help at all. Mom entered his bedroom nightly, turning on his ceiling light and telling him it was time to get up for work, lol. He never so much as rolled over. I couldn't do more as a 24 hr a day caregiver. I moved in with my sister and returned to my parents home at 7am to 8pm, so I could rest. Dad held out for just over a month, before he said it was time for LTC (which he had "promised" Mom he would never do). He made that "promise" to himself and no one else. Mom would never have expected him to care for her, because she knew how he was. He expected her to get a glass of water for him if he was sitting watching tv! After she passed away over 2 years ago now, his health began to rapidly decline as well. I live 35 miles from him and my sister lives 2 miles away. She is not a caregiver what so ever and makes no bones about it. Dad leaned on me alot. I took him weekly to shop and out to eat, seeing him gradually decline with his ability to use a walker. He could not tell where he was placing his feet so he was constantly stepping on his own feet. Hence his many falls, and breaking a hip after being tossed from his riding lawn mower! Several times when I arrived to take him shopping he would be asleep in his recliner still undressed and when I woke him he didn't know why I was there. Didn't matter that I had phoned him 35 minutes earlier. He was in total refusal about long term care, calling it "prison". After note: he rarely went to see Mom for the year she was on LTC. / One day I arrived to take Dad shopping and out to eat and again he was in pajama pants and sleeping, unaware why I was there. He'd must have been in the chair all night or more, from his looks. His lower legs were reddened and swollen. He just would not use the foot rest on his recliner. I contacted his MD and got an appt, and he was admitted to the hospital later that day. My sister and I made an appt with his MD while Dad was in the hospital explaining what was happening at home. We live in a rural area so 24 hr home care isn't easily or even available, and no way was I becoming a 24 hr caregiver again with Dad's mental abuse. I do not know how his MD made Dad understand going home alone was not an option any longer and we weren't going to stay with him, so once he was discharged from the hospital he was directly admitted to LTC at his own request. What a relief it has been to know he now has 3 meals a day and when he falls he has medical attention asap! We knew he'd never never go willing into LTC, but continue to depend on us for entertainment and every need. After 4 years of this, I was ready for someone to take over. Don't beat yourself up over this. He needs more care than you can provide period!
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Justpreforming,
I cared for my Husband and as he declined I said I would care for him at home as long as it was safe for me to do so.
Safety was my #1 factor in that decision. It encompasses a LOT.
If it was no longer safe for HIM for me to care for him I would have had to place him.
If it was no longer safe for ME to care for him I would have made the decision to place him.
Safety is not just physical safety but Mental, Emotional safety.
Making a decision to place someone in care is not a failure on your part but admitting that their care is beyond what you can manage.
You do have options though.
You can hire caregivers that will come in and care for him.
You can place him in a facility that matches his level of need.

If at anytime he is brought to the hospital you can talk to a Social Worker and make it very clear that he can not be discharged to home as it is no longer safe for you to care for him.
If you wish talk to an Eldercare Attorney to help determine what your best options are, make sure all your (by your I mean both of you) paperwork is in order.
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It’s no good caring for anyone who has failed to fulfill the role of husband. Decouple your finances by getting a divorce and a settlement. Then just move out and let him find his own answers. You will both be happier. Otherwise, your disdain will turn to loathing and wishing him dead.

Go forward immediately by first making a complete and comprehensive list of your assets. Do the absolute minimum to care for your husband. Then screw up the courage to select a female attorney and make an appointment.
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You do not have to care for him and nobody can force you to.

If he is mentally competent, explain to him what you can and can not do to help him. Ask him if he has finances for home health aides or will go to skilled nursing facility. Then, help him get that care.

If he is mentally incompetent (most likely the case), get him into a skilled nursing facility that will take his finances, Medicare, and/or Medicaid.
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You certainly have earned the right to independence and the freedoms to pursuing happiness. A caring facility will take good care of him.
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You are not a "care giver". You are doing chores. You are a potentially a abuser. Apply for Medicade. They will transfer assets to you along with a portion of his income. You can keep house and car. D Kelso
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cignal Aug 2022
an abuser? is that a typo? she's the abused.
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Good Afternoon,

Yes, I agree with deedee2travel why not call on hospice or palliative care. There are programs out there that coincide with the level of need at the moment.

In all honestly, the men get afraid when the woman gets sick. If the woman goes first usually "Harry" will wear the same shirt everyday and eat battered chicken wings in front of the large screen tv. They don't fare well.

You're a great daughter to be doing what you are doing. You also have a very good grasp of the situation on hand. You know who the players are. There comes a time when the homecare options may be exhausted especially if you are the "solo" caregiver. It sounds like you need to make a change and want to weigh your options.

You certainly should be commended as you have gone above and beyond your call of duty and seems like you have never left your post, nor has anyone stepped forward to relieve you. This is common in most families. I would give hospice a call.

You don't want to go down with the ship.

My prayers are with you...
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Grandma1954 Aug 2022
Hospice or Palliative care is great but it will not replace a caregiver. Hospice will have a Nurse come 1 maybe 2 times a week if necessary. A CNA will come generally 2 times a week. A Volunteer can be arranged but the Volunteer will be there for a maximum of 4 hours and the Volunteer can not do any "hands on" care.
If you are talking about Hospice in a facility that is not covered by Medicare, Medicaid or other insurance. that will cover the "medical" aspect but not the cost of the facility.
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Sending prayers your way. Look deep into your heart and maybe an answer will be there. God ways is to just care for them but, if your heart is not there just put him in a care home or something or you can have someone come to the house to care for him.
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Good Afternoon,

I have read through many of the responses and they are valid and interesting. Everyone comes from a different background, family, finances and yet a lot of us also have a lot in common.

I don't watch a lot of tv, however, what I do watch I try to make it worthwhile considering there is a lot of junk on tv--I am trying to be a lady using the word junk.

I heard two talks recently by Joyce Meyer and Dennis Prager.

Joyce Meyer is one of my favorite authors. Her background was absolutely atrocious. She is first to admit this on television. She did make a remark, we have a "duty" to care for our parents and check on them. Care doesn't mean give up your life but it does mean to care, just that, provide their needs. She went on to say God commanded it.

Secondly, Dennis Prager gave a talk on Fireside Chat and his book is on the Amazon best seller list he is explaining the bible in layman's terms. He said the following:

In regards to parents...

You are to love one another..."Honor" thy mother and father so that you will live a long life. Dennis said this is the only commandment that said not to "love" your parents but to "honor" them. He then went on to say Jesus knew that not everyone could or would be able to love their parents. But Jesus did say love your neighbor as yourself.

I found the aforementioned so true and I agree with it. I had wonderful parents. I cried my eyes out when my dad passed suddenly when I was in grad school many years ago. Fast-forward 25 years later, my 83-year-old mother has Lewy Body Dementia. She is in my bedroom in a hospital bed. There were no better parents.

In all honesty, if you didn't believe in God or Jesus you couldn't care for someone that didn't do for you what you thought they should have. The Lord knew this because every one of us travels a different path.

I just found this profound.
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Grandma1954 Aug 2022
If you for whatever reason can not provide appropriate care yourself I still feel you can "honor" your parent or loved one by trying to find the best care that will meet their needs. This does not mean that care has to happen in your home or their home. It can happen in a facility that has been built to accommodate the needs of a person as they decline in health both mentally and physically. In a facility that has trained staff that is available 24/7.
To care for someone in an appropriate manner, in an appropriate place IS honoring them
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Is he on Medicaid? You could connect with a social worker to discuss his (and your) options. It sounds like it's time for him to move to a senior facility where he can get a greater level of care.
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Keeping religion out of this, if you don't want to take care of your husband I am sure you have your reasons. And, so, don't let anyone guilt trip you into believing you should. Would it be possible to find a place for him? Good luck
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Ireland, caring, morals and altruism are not restricted to Christians. Your judgment that “if you didn't believe in God or Jesus you couldn't care for someone that didn't do for you what you thought they should have” condemns most of the people in the world – including yourself. Pie in the Sky is not the nicest motive.
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For you, not just a comment to someone else:
Your husband is 72, so you are probably younger. Did you work? Many husbands think (perhaps wrongly) that providing for a wife is largely about supporting them and the home financially. Why didn’t you divorce earlier if you felt nothing for him? Why now?

What advice do you want? Divorce him? Separate your assets? See if you can get him placed in a facility? Just walk out and get a job? Perhaps you need to think about the ‘least worst’ option.
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Justperforming: For whatever reason, you did not end your union with this man years ago as 'he did not care for you or provide for you.' Place him in a nursing home.
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I scrolled down to see if you had given more information and it appears that you are still married to him and still living in the same house. If he refuses to go to a long term care facility and you have not been successful in bringing in care, your only option is to leave him and the home. If you do not have your own money from a job or otherwise, you will need to divorce him so that you can get your half of the marital assets.

For you to feel this way, your marriage must have been bad. This might be just the thing to force your hand and do what you should have done years ago.
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