Dad really needs to be in a nursing home, but Mom keeps stalling. Any advice?

I've got to take issue with that, Llama, if only because one of the most problematic areas of all is elderly couples who won't admit to needing help *because* they are afraid of being moved out and split up. Well, they're not wrong, are they? Too often that's exactly what happens. So they leave it too late, they don't get any help, and the net net is that one gets carted off to the NH and the other goes into LTC.

Without trying too hard, I can name one couple and at least four relatives who stayed at home and independent well into their nineties; plus two ladies who are currently doing exactly that. The trick is to provide services that not only aim to keep older people at home, but are seen and known to do that. Then older people won't be afraid to access them.

There is nothing intrinsically wrong or foolish about wanting to stay in your home, where you have devoted time and trouble over decades to getting things exactly as you like them. It doesn't make any difference how nice a facility or care home is. It's not home. I think back to helping a friend to pack up his things from his family house after his mother had been moved into care, after a bit of a struggle. In her sitting room, from her chair, with her needlework basket beside it, out of one window you could see her garden and out of the other the church where her husband was buried. Not my family, not for me to say, but I thought about what it would have taken to keep her there and the truth was that it wasn't impossible, it wasn't prohibitively expensive, it was just much easier to move her out. Saved all that tail-chasing getting social services involved, paying for support, worrying about her, having to deal with it - ship her out, and then all you have to do is write a large cheque and visit twice a month, internally grumbling the while about your inheritance going down the drain. Don't worry, I held my peace! I just thought it was a shame.

With our parents' generation, unfortunately, it's a case of having 20:20 hindsight; but we've got no excuse. Planning to move into care is a good idea, I just wonder if we'll stick to the plan when it comes to it. We might find our own armchairs have got too comfy to leave.

If your mom continues, she will likely get sick herself and not be able to continue his care. As long as she is competent, I'm no sure how you force her to have him placed in a rest home or Memory Care unit. Will she allow someone to come in daily and help her? Are there funds for that? You might check with PACE in your state. They provide help for those who should be in a nursing home but remain in the home.

I don't know much about an ostomy, but it sounds like it's not healthy for your dad to be removing and tearing it up. Can your dad get some medication to help with his anxiety? Also, what if he wore an adult onsie, that buttons in the back. He would not be able to get his hands on the bag to remove it. That might help a little.

I think I might have a serious sit down with your mom with all the siblings and be very serious about your concerns. If you feel real strongly, you might say you are going to seek guardianship and have dad placed for his own welfare. She may call your bluff, but maybe she will agree if she thinks it has come to that.

Gee. I'd sit down with mom and say " mom, i can't do this anymore, my husband and baby are more than a fulltime job. You're probably not thinking that you're being selfish , but that's what it comes down to, selfishness.. taking me away from what i need to be doing. Dad needs to be in a facility, because if you, mom, die or become disabled, you're leaving ME holding the bag."

In your shoes, I'd be angry.

Unfortunately, not much you can do except be supportive. If mom is competent and POA, then all decision making is hers to make. I think many of us feel for the caregiving parent as we can clearly see they are emotionally and physically worn out; yet continue. Many older parents take their vows very seriously and think asking for any help or placing in residential care is being selfish or not true to "for better or worse". The only thing you can do is to continue to support her decisions and planting the seed that "maybe it would be best for you and dad to get some extra help in at night, etc. so that you can be more of a loving wife and spend quality time with dad vs. just caregiving. She may eventually allow you to help her find outside help. Do they have money to pay for some night time CNA hours in the home? I know its expensive; but might be worth looking into. Also, VA benefits (if dad or mom was a veteran) may also be able to offer financial support.

As for you; you aren't selfish to cut back on helping mom. This is what she has chosen and she has the resources to get in some help or assistance likely. It's not up to you to take up the slack. You need to be there for your husband and baby and that is the way its supposed to be -- especially when we live out of town. I think driving up once or twice a month is about all you can do. The other sibs might be able to swing an overnight to help mom one weekend a month.

I'm so sorry you are going thru this. YOu seem like an extraordinary wife, mother and daughter!

Be sure to give yourself a break and not feel guilty.

Phew. Difficult.

While negotiations are ongoing, you could ask a continence care specialist nurse (ask whichever team takes regular care of his stoma if you don't know of one) to advise on better products. Looked at from his point of view, he wakes with an uncomfortable foreign object attached to his body and removes it. He can't reasonably be expected to grasp in the moment why he shouldn't. I don't know, but maybe there are ways and means of preventing this miserable routine for your poor mother - it can't hurt to ask. And while you're at it, see if you can't get this person to argue with Medicare. I once had a similar type of Kafkaesque conversation about incontinence pads, working out how much urine my mother was permitted to produce daily and what implications that had for keeping her hydrated; but it wasn't quite as unreasonable as 26 stoma bags per month. Who the heck came up with that? And what do the manufacturers advise on hygiene??? If you can get a good fierce nurse on the case maybe it would help.

Your mother stalls because she doesn't want to move. And while we can sit here and weigh up the pros and cons and rights and wrongs of her choice, that's what it comes down to. And it's her decision to make. Doesn't mean you have to comply or enable - you can fold your arms and insist she find more formal support - but you can't, as you know, just force her hand. As an exercise in patience, ask yourself: would you want to? It is hard to motivate yourself to do a practical thing that is, all the same, extremely unappealing; especially when it signals the end of your married life, effectively.

Hypothetically, would your parents have the space and resources to afford live-in help? Even in the short term? Because ironically enough, if your mother were less exhausted and desperate she might be in a more positive frame of mind when it came to planning ongoing care. I'm sorry for all the worry you must be going through, hope there's progress soon.

ChuckWestern, oh how we hate the decisions that our parents make. I know your Mom is in denial and she probably is from that generation where it is her job to take care of her husband no matter what.

I is dealing with something similar... my Dad is a major fall risk and Mom refused caregivers or any strangers to come in the house to help, and I am a senior myself so I was limited on what I could do to help.... thus that denial is now causing the death of her.... she become so exhausted trying to do her "job" of cooking, cleaning, laundry, etc. that she started falling and a major fall now has her bedridden, not knowing where she is, or even what year it is. So sad.

Thus, feel free to us my example when talking to your Mom. I hope it will be an eye opener for her.

Even though my Mom is slipping away, she is safe in a continuing care center, and Dad is at his home with the same caregivers that my Mom had asked to leave.... I am finally starting to sleep at night after being wide awake for the past 6 years !!

PS, you are NOT whining. YOU are not being selfish.

Frankly, it sounds like your dad is getting less than optimal care at home. All that flinging of ostomy bags can't possibly mean he's living in a pristine environment (let's not even talk about the impact of that upon you, your infant and your immune - surpressed spouse).

Why isn't he getting medication for his agitation? Does mom think he ENJOYS being like that? Antianxiety, antipsychotics and antidepressants meds can do wonders. I'm not talking about simply sedating him, I'm talking about treating what's causing the agitation.

One of my aunts resisted b putting my uncle in a memory care facility until her kids discovered that uncle was beating her black and blue so he could get the key to get out of the house and wander. He was finally placed, at their insistence. Aunt died a few months later of a massive heart attack.

Uncle lived on happily in memory care for several more years.

ChuckWestern, based on the details of your situation, I would be very blunt. I agree with other posters about setting it out straight. You have a full plate. You do not need the stress of having to deal with an aggressive senior with advanced dementia acting out in the home with a senior care giver. It's not even a close call. It makes no sense. He needs to be evaluated by doctor for medication. He doesn't have to live that way. But, at any rate a senior female, being able to manage a male advanced dementia patient in the home is extremely challenging. If you are going over multiple times during the week, it's not working.

Your mom knows how difficult this is, but she is resisting. I would insist that he be placed and if she refuses, I would seriously consider legal action. I'd see an attorney so I knew where I stood. Your mom sounds like she's not thinking very clearly.

Thank you everyone for your thoughtful responses. Several of you caused me to look at the situation from new angles, which has been insightful.
In response to some of your concerns: Yes, Dad is on medication but it has been largely ineffective. The most significant responses he’s had have been extreme lethargy and increased irritation. His doctor has ruled out UTIs more than once. As for sanitation, as he is bed-ridden the messes he creates are limited in range. Mom is very thorough after each bag-removal episode. She also understands that I will not come in physical contact with him or his bag. The most I can do while I’m there is try to distract him from the bag. When I am unsuccessful, the mess has to wait for her return. No, neither of my parents is a veteran. Finally, I was disappointed to find that PACE is not available in my state (but I will be writing to my governor about it); it sounds like a wonderful program.
I want to clarify that I am not angry with Mom, just frustrated. Even if she holds out for some time to come, I will not abandon her. She in no way demands that I help her. It is taxing, but I do not mean to imply that I do not (currently) have the capacity to manage it. Indeed I use the brief time we are together on my visits to encourage her and inquire about her progress on the Dad Front, not to mention using the visits as a check on her well-being. I described my little rant as “whining” because after reading several others’ stories here on this site, I recognize that my situation is not even in the same ballpark as that which others have to endure. Nevertheless, it did feel good to get it off my chest.
I think her reasons for stalling on moving him into a nursing home are varied and complex. It occurred to me while mulling over your feedback here that perhaps part of her reasoning is fear that I will not come around anymore if she no longer needs help with Dad. I will assure her at my next visit that this is absolutely not the case. In fact, my time at the house will be all the more enjoyable for not having to see my harried mother going nonstop to tend to my miserable father. I also suspect she is concerned that Dad will be sedated and/or restrained to deal with his behavior in the nursing home--most likely sedated, as he can work his way out of restraints. I believe this may very well be the case--and quite frankly I would not object.
Thanks again to everyone.

Restraints both physical and mental (medication) are not legal anymore, so I hope your mom knows that. Has she ever visited a Memory Care unit?

I would be concerned that your dad's mental anguish was not being properly treated though and would work on having that addressed. Does you mother understand that his anxiety must be very scary to him?

How do the grandchildren respond in this situation and does your mom have any time to spend with the grand kids?

The medications I have seen for anxiety have not produced sedation. There are other options. I wish you all the best.