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My mother is currently in a skilled nursing facility after gallbladder surgery. Her health has declined these past 2 years after many falls, several back surgeries, infection, insomnia, and diabetes and high blood pressure emergencies. I think also she's become addicted to hydrocodone. She cannot walk without assistance from physical therapy and a walker and has no control over her bowels. Her case manager tells us that she could regain control if she gets stronger, and she has improved with therapy.


The problem is she doesn't do much to help herself. She's the type that thinks a doctor or a pill can cure her without her having to do anything. She still wants to eat and drink whatever she wants. She says she's 72 and too old to care. I encourage her to do the exercises therapy wants her to do, and she says her legs feel like 1,000 pounds. If she's too tired, she cancels therapy altogether. All she wants is to go home. Understandable.


However, our father, who is in decent health for 75 years of age, has been her caregiver and it is wearing him out. My siblings and I are very concerned that he will end up getting hurt and needing care himself.


We have told our mother our concerns, and she insists that he can continue to help her. But she also insists that she can walk by herself and that she has control of her bowels: "They put these diapers on me, so they expect me to use them." We are afraid that our father will give in to her crying and take her home even though he knows that it's not best for either of them. He feels guilty.


I know there's nothing we can do about it really, and there is no reasoning with someone who's not thinking rationally. I suppose I'm just looking for others who are or have been in similar situations. It's frustrating and it's discouraging seeing my father lose hope.


Thank you for reading.

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I agree with the comment made by "Caroli1" on 3/16/22. How does 'LivinInTX" know how much pain your loved one is experiencing? My mother lived in constant pain for years. When she went into hospice the hospice doctor took her off all pain meds cold turkey - it was the worst possible thing they could have done. If nothing else, have your loved one examined by a pain management specialist who specializes in geriatric care and doesn't have the attitude that anyone who uses pain medication is an addict.
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Thank you all for responding. In the past few days, she has agreed to remain in the facility until after father can recover from cataract surgery, which is at the end of the month. Unfortunately, she fell yesterday while doing therapy, but that just confirms to me that she is in the best place at this time. She is not on hydrocodone and has not been since entering this facility, so I think that getting it out of her system has improved her judgement and willingness to cooperate. Thank you.
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Llamalover47 Mar 2022
Sumosuzie: Thank you for your update.
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You are in a hard spot but try - with the help of family and the care team at the facility to explain to him that he can not provide the care Mom needs at home at this point. Should he fall or become injured they will both need facilities. Try to explain that "for better or worse" doesn't mean nailing yourself to the cross for someone. If means doing the best you can to make sure their needs are meant. He is not abandoning her - he is putting her where she can get the best care. He can visit when he wants and be a loving caring husband, not the tired man who is tripping on the carpet as he rushes to get the laundry done so he can change her diaper. You may have to be his supporting rock on this ... in other words Mom doesn't get a chance to talk to him alone.... if you are visiting and you have to go to the bathroom he needs to leave to speak with the social worker or pick up a new menu or anything.... he doesn't stay in the room with Mom. Traditional Medicare will pay for up to 20 days fully for someone who is participating in rehab and is progressing. Some of the Advantage programs are a little less lenient with their length of time and may demand the rehab department report to them every 7 days rather than 20. If she is not participating and not improving they will discharge her from their short term rehab program. At that time they will ask if you want to take her home. They and you know that taking her home is a short road to disaster so you will need to say "no. this is not a safe discharge". If you like the facility you can ask that she stay there but having used her Medicare days in rehab.... she will be private pay in any facility (Medicare rehab days used will reset to zero in 60 days if there has not been another hospitalization). If money is a problem, they will suggest she apply for Medicaid. Do worry about Dad losing the house... it is not Medicaid desire to make the community spouse homeless but I would recommend you consult with a certified eldcare attorney to facilite your understanding of the process (which is pretty long and paper heavy (birth, marriage and death certificates, 3-5 years worth of bank statements, mortgage receipts, you get the idea). You may be able to save on attorney fees by doing the application yourself (attorney or not, the family is definitely the one that has to get the required documentation . Check with your local Office on Aging for low cost attorneys.

Or.... as has been suggested.... Mom and Dad can sell the house and move into a facility. Dad sounds like he could do independent (IL) or assisted living (AL). With Mom's bowel incontinence and other ailments she may already meet the medical criteria for long term care so you may need to look for a facility that has multiple levels of care IL on one campus. In NJ ALs have very few Medicaid beds so almost all residents start as private pay for a year or so; you need to make sure that she is guaranteed a Medicaid bed when she needs one and I would get that guarantee in writing.

Wish you all Peace on this difficult journey.
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Sumosuzie: Your father must not give in to her pleading to go home as she is in the SNF for a reason. Many individuals are caring for her there as opposed to the potential (if mom wins) ONE individual at home. Age 72 is "not too old to care." The individual authoring this is 75 years of age.
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They can live together in assisted living apartments or little houses. It would be a "win-win" for everyone in the family.
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First thing is to get her off hydrocodone. Worst thing in the world for her.
My guess is the facility routinely gives that to her and other pain meds. The sooner she can get weaned off them, the better. Ask to see ALL that they are giving her and if they are giving her lots of pain meds, ask to stop giving her them, or taper her off. That's why her legs feel like 1,000 pounds and why she may in part have apathy.

There are other pain management strategies that work better. TENS machines, KT Tape, Arnicare cream and pills. Red heat and other options. KT just came out with a new magnetic thing that really works on chronic pain. My mother had similar issues and once she got off the pain meds, is so much better and more able to move around.

Then find a good home health care person. Use an agency like At Home and ask for a few to sit with her at night so you can find a good one she likes. And then hire that person so when she goes home, your dad can use them to help him.

Just DO these things. Don't ask her. There's definitely hope, but it starts with getting her off the pain meds. They do more harm for elderly than good. And it's a cycle. Not saying she's going to get 100% better, but she will feel and act more rational when you do.
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I am friends with a health care worker who is caring for an elderly woman who reminds me of your mother. This woman has multiple health problems and is too weak to walk but insists that she will walk--even though she declines to do her exercises. She gets abusive with her caretakers and screams at them if they try to make her do her exercises. Your mother is not screaming. She's just refusing to accept reality and waiting for reality to adjust to her point of view. I'm an elderly (79 yr) lady myself who needs to exercise. But I have chronic fatigue syndrome and my legs hurt and they are so heavy and I am so tired. But I do want to improve. So I DO exercise--but cut back the number of repetitions. Most prescriptions say 10 repetitions 3 sets. I do only 3 repetitions. I live on the 3rd floor of an apartment building. So I won't use the elevator. My advice is "every little bit helps." Can she walk? Does she realize that she will get worse if she doesn't use her body? Don't say this as a threat. See if she has any desire to improve. Is she waiting for a pill? Say, while you are waiting, pill might not work if you get too weak, so, yes, legs are 1000 lb. They will get lighter if you can move them a little. That's what happens with weight lifters. They can lift more weight as they exercise. Tough situation. I'm struggling with myself. I also don't exercise when I'm really tired. Try showing sympathy, telling her how much you want her to improve, etc. So sorry for both you and your mother.
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I am curious as to whether her care manager at the nursing home is a nurse or a social worker. Some of what you reports sounds like 'false hope' to me.
Once bowel function is lost, it is hard to retrain the body, You mention a spinal infection and diabetes....if the nerve pathways that control defecation are damaged, she will remain incontinent. Her pain medication usually causes constipation, so she may be on stool softeners to prevent severe constipation.
Your mom's lack of distress/embarassment about the diapers seems like a tip off to her general attitude...I'll let others take care of me...they are paid to do it/my family has to take care of me.
Sometimes taking care of someone you love is ensuring they are safe and reasonably well cared for...in a SNF. You are right, it sounds like your dad is giving in to pressure to take her home. I'd have a family. meeting (dad, you, niece, etc) and be clear about the limitations of what each of you can and cannot do - and run through a few scenarios and try to kick around solutions, to see if he has that sort of planning ability.) What to do if she falls, what happens if he gets the flu and is bed bound himself for several days, his cooking skills, etc. This might reveal the need to locate additional resources such as hired caregivers to help with everything.
By the way, check with the ombudsman for the facility. (name and number should be posted in facility, so look around for it.) Often a SNF will indicate that if a patient is no longer in active rehab, that the person has to move to a different facility. They want to keep rehab patients as the rate of reimbursement is better.
The ombudsman can clarify for you if the SNF must keep her in the facility (maybe a different room) at the private pay/Medicaid rate, or if they can legitimately discharge her home even if it is an unsafe discharge.
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Diana5230 Mar 2022
I wish I could give you 5 helpful answer votes! That was such a knowledgeable answer and very helpful to me in my situation as well.
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It is understandable that your mom just wants to go home which is the best reason for keeping her where she is rite now because going home is her carrot. I would urge you to drive that home with Dad and have a meeting with the rehab she is in to make sure all of her caregivers understand the importance of presenting a united front when it comes to this. She may be good at convincing one here or there that she would be much better off at home and perhaps if she were self motivated enough that would be true but like my mom, she isn’t. We all tend to forget how important what we say can be sometimes which is why it’s important everyone be on the same page here. They need to understand how dependent mom is willing to be and how hard that is and will be on dad. The carrot of being medically/physically ready to go home is important rite now to keeping her participating in rehab.

While reminding Mom every time she expresses the desire to go home that she can make that happen by working hard on her exercises so she can be cleared for that, the person you really need to focus on supporting here by the sounds of it is Dad. Hard as it is not to give in to your moms pleading he needs to know that she still needs the help and care only the rehab can give and he will feel more guilty taking her home too early. I know maybe even more importantly this is what’s best for him but it sounds like he may be more apt to put his needs aside that the welfare of his wife. He is going to need constant support and reminders of this though.

My mom has a very similar attitude to yours and gave up really participating in her rehab after the stroke, once she got back into her own home, when she realized there was no chance she was ever going to drive again. It had been her last big carrot for continuing to improve. The only other thought I had is might it be time for a move for your parents? Maybe a facility that has IL, AL and skilled nursing or some combination that wouldn’t enable them to either live together for now or at least live on the same compound and make that home. This would set things up for both of them when it comes to increasing future needs, especially if your moms mobility is going to be decreased permanently.
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When somebody doesn't get it, either becase his mind is disconnected from reality or because of stubbornness, your efforts are fruitless. You should stop hitting your head against the wall. May be you want her to live another 20 years, but she wants to live only a couple of more years. Patients don't have to always agree with the caregiver's expectations. Their wishes should be respected as long as the don't have dementia.
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It sounds like your Mom needs a highly motivated and experienced TEAM to help her. She isn't motivated to participate in getting better because she is depressed, exhausted and riddled with aches and pains. If she were motivated and watched her diet and exercised, what progress is actually possible? If the progress is substantial, then the whole family and professionals (doctor, home health aide, Physical Therapist) will need to jumpstart and enforce the new "rules" at home - until it becomes a habit and real progress is made. Your mother and father cannot handle this on their own - at the very least hire outside help to toilet, dress and bathe Mom.
If her limitations are not insurmountable, then leaving her in a skilled care facility is the only other way to go. Let the professionals care for her and concentrate on keeping Dad fit and healthy, surrounded by love and family. It seems like he is desperate for emotional support - put your energy there.
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In response to Sumosuzie's problem, I would report the caretaker's comment to the facility. That undermines the facility's program completely and upsets you. Perhaps, it is a terrible place and she is doing you a favor. In that case, taker her up, but I think it was probably counter-productive and destructive at worst.
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You cannot persuade your mother to help herself; she has to want to do it. "Too old to care" is an attitude, not an age. Many of us are well over 72 and do not share that attitude.
If returning home depended on meeting specific therapy and control goals, she might comply far enough to be allowed to go home, but it sounds like she would quickly revert to being dependent on your father. Her continuing care would soon be too much for his own health and well-being. It is selfish of her to expect to be waited on instead of taking at least some responsibility for herself.
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Many elderly lack insight. They want what they want with no regard for others. Save your father! And keep her where she is safe. As a retired 27 yr clinical staff member I have seen residents adjust to nursing home life after a tough start. Have Dad visit routinely. Family involvement always helps. Where I worked staff would engage residents in activities and most adjust well. It takes some time. Good luck!
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She is not the only one who thinks that a doctor or a pill can cure any illness. Many caregivers in this forum think the same way. There is nothing you can do for an uncooperative patient, except to offer the options. Many times, the patient know that keep trying to treat the untreatable is futile.
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Seeing your father lose hope? - what are his hopes?

You may not be able to do much with your mother, but you can certainly work with him. She comes home when she is fit enough and not before. Make sure he has the same hymn sheet as you and the therapists.
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Sumosuzie Mar 2022
His hope at first, 2 years ago when she first fell and began having nerve pain, was that she would be able to walk again normally. Then, this past year as she has gotten worse, his hope was that she'd be able to walk with a walker. It was only a few weeks ago that he told me his hope was pretty much gone. We (siblings) think that he has been in denial about her condition.

Unfortunately, yesterday when I spoke to him, he said that one of her therapists told her it might be best for her to go home because the facility is expensive and she can do therapy at home. Then he said he was learning how to put her diaper on and dress her since she can't do anything for herself. I will keep encouraging him to stay strong and keep her in the facility, but like my sister-in-law said: we had better prepare for 2 funerals.
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I had the exact same situation. My mother was unable to walk, falling 5-6 times a week and incontinent. My father was her sole caregiver and refused help because she would constantly say she didn't need it. My dad placed her in SNF for respite and while she was in there, he died. He had some treatable medical conditions that he didn't take care of because he didn't want to leave my mother. When he did place her in the SNF for respite, he felt so guilty he spent 12-15 hours per day just sitting with her. My mother is now permanently in an SNF as I can't care for her. I wish my dad had sought out care for my mother before he did, but she kept insisting she didn't need it. If your dad does insist on taking her home, I would recommend a few things:
1. Arrange regular home care before she comes home. She will always insist she doesn't need care, but if it is already arranged, it is harder to turn it away.
2. Try and keep her in the SNF as long as possible, If she isn't willing to do any exercise now, it is even more unlikely she will do it at home.
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Beatty Mar 2022
I am so sorry to hear about the loss of your Father.

Over the years, I have heard so many tell of Caregivers who passed before the Care Receiver.

It is indeed sad - but I suppose the Caregiver gave because they wanted to give (because that was better than the alternatives at the time). It gave them purpose & we can remember their giving hearts 💙
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I’ve walked in these shoes… except my father was no longer in the picture.
if I had to do it over again, I would realize I can’t do it for her. I spent time and energy , debating , arguing, yelling, talking, to the determinant of our relationship. I wish I had just let her sink her ship without taking me with her. It didn’t change anything. My mom is currently in memory care. When I moved her from out of state , she got stronger because she HAD to physically move her body. I knew, she would go back to doing what she wasn’t doing before I moved her… 6 months later, she has significantly declined…

I no longer try. my mental health is better for that.
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Sumosuzie Mar 2022
Thanks for your reply.
That must have been tough. I never, ever thought I'd be contemplating putting my mother in a nursing home permanently. But taking care of her in the condition she's in requires more care than one person can give. She has said that she expects me, as her only daughter, to come take care of her. I can come out for max 2 weeks and then what? Repeat with a different emergency.
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Just make sure to let your parents know that their reality if they insist on your mother coming home is that you and your siblings (or at least you) will NOT become the caregiver(s).
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Sumosuzie Mar 2022
My father does not expect us to help. Even last year, I spoke to him about possibly moving in with one of us, and his response was that they'd live in their own home as long as possible. He realizes that my mother is a lot to deal with, and conflicts would be a certainty.
My mother, on the other hand, expects me to come out there and take care of her, and she has said she wants to live with me. But in the condition she's in, I don't see how I can do it, and my husband is a very generous man, but everyone has his limits.
Thanks for your reply.
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You say that you ‘think she's become addicted to hydrocodone’. I looked it up, as I haven’t heard of it before. I presume that she isn’t taking it for cough, just for pain, and the side effects do include being a bit spaced out. I’m sympathetic, because I need to take a fair bit of codeine from time to time, and it’s hard to get motivated when it kicks in.

Two ways to go: if she is addicted and she does move home, she may have difficulty getting enough hydrocodone to keep her spaced out and unmotivated, and she may help herself a bit more. Alternatively she may get into it even more and bring her life to a close the way she wants to go. If it’s her choice, and it saves your father, it’s not the worst thing that could happen. One way or another, she is going to make her own choices. You can't make her choices for her.
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Becky04489 Mar 2022
hydrcodone is a widely used painkiller and highly addictive. it is used a narcotic pain killer and is also used for severe coughing.
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Hmm. The situation right now- is this sort of it?

* Mom needs a gigantic amount of care.
* Mom feels Dad can do it all.
* But that is not reasonable in your's & many others' view.

Mom won't or can't see reason. (Maybe stubbornness, denial, lack of insight (anosognosia) maybe a mixture of all of these things).

You cannot reason with unreasonable people - this is what I have learnt (the hard way..)

But you can work with Dad. How is HIS reason? How is his insight to what he can realistically do? How 'tough love' can he be?

Or will he bring her home to *make her happy*? Despite knowing he can't actually make her happy? Despite this potentially endangering his own health?

If Dad CAN reason, use that.
Ask what HE wants to do. Help him get a care plan ready: either a huge team of home aides or arrange for Mom to move into a permanent care facility. Oh & make clear you will NOT be the care plan (unless you are actually planning to be 🙄).

I would try to kindly suggest counselling to give extra support for your Dad. May help give him some more tools. Through a church or faith (if he has one) his Doctor or Elder community services.
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Sumosuzie Mar 2022
Thanks for your reply.
My siblings and I think our father is in denial, or has been. Maybe now he is waking up, so to speak. He has told me how much help it is when I, or my niece more recently, was there to help.
I will talk to him today about what he wants to do. When I spoke to him yesterday, he said that he was learning to put on her diaper and dress her. That makes me suspect he is preparing to take her home.
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When my mom got sepsis and had a heart attack etc. from a kidney infection she spent six weeks in hospital and then was transferred to a rehab facility. My mom had always been the sweetest, kindest, most reasonable person but when she was in the rehab place she became stubborn and uncooperative. She refused to participate in the rehab exercises. A few times I'd go to the sessions with her and even participate myself just to get her to do it. The things they did were simple like throwing a ball back and forth to each other or kicking the ball back and forth. Everyone looked shy and embarrassed but they did it. There were people there in far worse shape than my mom. One was a man who had his leg amputated but there he was getting with the program.

I think this is one of the few times in my life I remember getting mad at my mom. I tried to explain to her if she ever wanted to live on her own again she'd need to do this but she refused. They eventually released her cause they needed her bed for someone who would try and she went back home with home health care in place which she also did not cooperate with. She ended up in a nursing home. She basically just gave up I guess.

It's frustrating but when it comes right down to it a person needs to want to succeed. Sounds like your mom would rather not be independent and continue to poo into her diaper. I feel for your Dad but he shouldn't allow himself to be taken on this ride with her at the risk of his own detriment. Unfortunately love does not conquer all in some cases.
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Sumosuzie Mar 2022
Thanks for your reply. It is indeed frustrating. My mother has never been the kindest or sweetest of people. But I did think of her as a strong woman and wonder where that woman has gone. My father has suggested nursing homes, but I'm not sure he can put her in one. She told us all this week that she feels abandoned.
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After rehab, and if it was successful, both parents could go together to AL by selling their home.
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Cubii
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You've got a hard situation. With some people their stubbornness graduates to being unreasonable. Your mother will not see reason and doesn't want to do any of the work it will take to get stronger and be able to go home.
Deal with your father not her. Tell him everything they've said about mother refusing to do her PT to get stronger. And the part about the diapers too. He has to be convinced to stay strong and do what's best for her.
What's best for her is to not let her come home until she's steadier walking and out of diapers. If he lets her come home, she will totally give up on PT and will completely neglect her other conditions and become an invalid because she will be home and it won't be something to strive for anymore. Don't let her come home.
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Sumosuzie Mar 2022
Thanks for your reply. My father knows about therapy and he was there when she said that about the diaper. We all agree, except her of course, that the facility is the best place for her right now. Convincing my father to keep her there despite her tears will be the hard part.
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Is your mother in the SNF for rehab purposes, short term, or is she there permanently? If she's there for short term rehab, and refuses to do the physical therapy that's expected of her, then Medicare can refuse to continue paying for her b/c she will not be making the required 'progress' and she'll be released. It'll be a moot point as to whether your dad will take her home b/c he feels guilty.......there will likely be no choice in the matter!

If she's there for the long term, Dad needs to KEEP her there until & unless she makes the required progress that will enable her to come home w/o killing HIM by doing so.

Defecating into an adult brief because 'it's expected of her' is a new one I've never heard before, and a big fat excuse if ever there was one!!!! Is your mother suffering from cognitive decline in addition to her other ailments, by chance? Has she been tested with a MoCA or SLUMS exam? Also, why is she bowel incontinent? Has the doctor given you a reason for such a thing?

In any event, you can't force your mother to do her PT, nor can you force her to face reality. What you can do, however, is talk to your dad about placing her permanently into managed care if she refuses to be cooperative b/c expecting HIM to take care of THIS level of neediness is asking too much, in my opinion. If she's "72 and too old to care" which translates to eating/drinking whatever she wants & destroying her body in the process, which means DAD is paying the dues for her behavior, then he has to review his options now. Expecting him to clean up bowel incontinence and get her around when she refuses PT is a huge job for anyone! You're right; he can easily get hurt and require care HIMSELF if he's trying to lift her up b/c she won't do PT and help herself get mobile again. He needs to at least call in caregivers to help him every day and if she balks at that, she can stay in the SNF and get 24/7 assistance with her myriad needs. Just diabetes alone is enough to cause severe problems down the road, especially when it's ignored; my late sister in law had her leg amputated due to ignoring her diabetes and loving sweets MORE than she loved her life. She died at 64 from Covid, but would have passed away in short order from liver and kidney failure had Covid not taken her more mercifully without pain & suffering.

Your father is likely the one who needs to have a Come to Jesus meeting with mom. I hope he can get through to her, otherwise, he has some serious decisions to make moving forward with regard to her care options. Sometimes, in situations like this, it can be too little too late when a person ignores their health for so long. Sad, I know.

Wishing you the best of luck with all that's going on.
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Sumosuzie Mar 2022
Thanks for your reply.
She's in rehab short-term. She must be making progress, because medicare continues to allow her to stay. Yesterday, my father said that she is trying now to get to the bedside commode, so that is an improvement. She started having trouble getting to the toilet on time last year. She came up with all kinds of excuses and refused to tell any doctor because she was embarrassed. So I can only guess that it's diabetes or the spinal infection affecting the nerves. Her case manager at this facility told us that her bowels would improve when/if she gains strength. What we are hoping is that she will stay there until she can walk with her walker again and go to the bathroom.
I have definitely seen her decline mentally since last May. Her case manager suggested that she might have dementia, but no doctor has diagnosed it.
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