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.
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.
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.
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.
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.
* 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.
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.
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.
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.
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.
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.
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.
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 💙
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.
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.
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.
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.
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.
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.
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.
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.