Should I be more involved even if I am not financially responsible?

Dale, it does help, thanks for responding. I think that maybe you are at the point that we "kids" sometimes reach. A time when it becomes clear to us that our parents are struggling with health/money decisions. They are still in their own minds at this point and are able to make decisions. For our family this was hard as my husband's parents made some really bad decisions. I don't know how their insurance coverage works but sometimes people want the doctors to make the insurance do something that isn't actually possible. I don't know if that's the case with your dad. As you pointed out at first, they are the ones that are financially responsible for themselves. You can't make adults with their full mental capacities do anything. In our family the parents made decisions that made their health issues worse. And that was their right. We didn't like it, it was stressful for all of us to watch. My IL's were very reluctant to spend any of their money which didn't help. Warm thoughts toward you and your family at this difficult time.

@OncehatedDIL, there is an ongoing struggle of decision-making between my parents. Each wants to make significant decisions, in some cases regardless of the impact on the other.

Again, dad feels mom's MD should stop trying to prolong the agony, and either seriously make the move to make mom go back to a skilled nursing facility, or change her mind, declare that mom's condition will not improve, and force their insurance to cover her home-care needs so that dad will no longer have the burden of having to unofficially pay home health aides to come here to take care of mom.

Mom feels she will not improve; dad wants to hope that she can improve.

Hope this helps.

Dale, I am wondering, who makes the decisions in your home? Is it your mom? And I also wondered, you said that your dad felt mom's doctor wasn't doing her job. What does your dad mean by that? What does he think the doctor is doing wrong or not doing?

As far as I can tell there isn't a case manager, but IMHO it wouldn't take much to get one.

Dale, I am so sorry that there are so many health issues in your family.Was it Mom who kind of held everything together before she got ill?

I would say that if you have a Hoyer lift, Mom's doctor is aware that she has not recovered. Does Mom have a case manager, perhaps assigned by her clinic or insurance company? That would be a person to talk to about your concerns.

Or, as Eddie and others have said, talk to her doctor, if nothing else for reassurance for yourself.

@jeannegibbs: OK, when I wrote that, it was late, and I had too many other things on my mind.

Mom does have a bedpan, and the aides take care of that.

She also has a wheelchair and a Hoyer lift, and three times a week an aide transfers her to and from the chair with the lift.

I am deeply, DEEPLY sorry for having left those things out. As I said earlier, I, like mom, dad, and other family members, have my own health issues.

Talk with the doctor. And while you're there, ask where you can hire a health aide with a strong stomach.

I'm trying to picture myself cleaning my own mother up. Not happening. I'd probably cry all the way through, and so would she from sheer embarrassment.

Do you mean to say that your mother's total elimination is in her disposables and she is changed exactly 3 times a day?!

How about this. How about restricting yourself to using the bathroom three times a day? Every day.

Better yet, wear disposables and only change them 3 times a day.

OMG

She is not incontinent, you say. She doesn't get out of bed, you say. This doesn't make any sense, I say.

I don't care what your father's issues are. Take care of your mother!!!

She doesn't get up. She can't walk. She can't convince her MD of that.

She uses briefs along with Tena/Serenity pads, and there is an underpad on the bed which an aide, or brother #4's housemate, changes periodically.

The crisis is that our relationship with would-be aides is tenuous. One of them just decided to go to a nearby college to become a full-fledged nurse, and another nurse the family knows stepped in barely in time to help. If we go to an agency to find health aides, they could charge dad twice what he has agreed to pay the current ones.

Dad, like I said before, has his own issues. He's of the belief that mom's MD is just falling down on her job. His own MD is in the same office as mom's, so I'm thinking that dad could be of the belief that they can/should work together to address both their needs. I'm sure he's brought up the issue the few times he's been to his MD, but what comes of it is up to those doctors.

I'm going to bed now.

Thanks for responding, dale.

Your mother is bedridden. Who gets her up to go to the bathroom? Is that limited to 3 times per day?

Your original post mentioned reaching a "crisis" stage with "sanitary" issues, and now you say this is just occasional "leakage." Which is it?

I'm really worried about your poor mom, when no one in her life will stand up to her husband and get her the help she needs. Sounds like her sons are more concerned with not rocking the boat than seeing that she gets the care she needs.

Have you at least talked to your dad about these issues?

I'm in my early 50s and still live with my parents, who are now 80 and 75. Mother had four boys; I am #2, #1 and #4 do not live here; #3 is here temporarily. My father is still of sound mind, and is not about to let any of us kids handle significant decisions... yet. And even when he does, it will likely only be brother #1 that takes over, tho he will get advice from #4 whether he wants it or not only due to #4's living with a former nurse, who occasionally fills in for the aides that have come here.

The aides are only here for no more than a half-hour three times a day, and they do a very good job to ensure that mom doesn't need to be changed more often; she is not seriously incontinent, just a occasional minor urinary leakage.

I can tell you that mom has spoken multiple times with her MD since your posts, mainly to work out the details of changing her blood-pressure medicine, but this may be the catalyst that gets her, or one of us, to get her involved with the topics we've addressed here. I hope so.

This has nothing to do with who is paying for what or what the insurance will cover. How many hours per day are the aides in your home? but somebody needs to take on that responsibility. she should probably be in a nursing home. Maybe mom's condition will improve. But she needs care right now, both to help it improve and to meet her needs until the improvement happens.

Let me echo JessieBelle: The responsibility of the family is to get the needs of your mother met. This has nothing to do with who is paying for what or what the insurance will cover. Mother deserves to have all of her needs, including the "embarrassing" ones met.

You don't say how old your parents are or whether you are fifteen or forty-five. I don't know which person in the household is best suited to contact the doctor, but somebody needs to take on that responsibility. Ask for a home-care needs assessment. The professional who comes out and evaluates the situation may recommend some additional rehab, either in-home or in a facility. Other in-home services may be recommended.

How many hours per day are the aides in your home? Who deals with changing her disposable underwear when the aides are not there? This absolutely must be attended to promptly or you risk sores and the dreaded urinary tract infections.

Maybe mom's condition will improve. But she needs care right now, both to help it improve and to meet her needs until the improvement happens.

Talking about "reprisals" and unwillingness to handle toileting issues and "tipping his hand" -- this all sounds pretty dysfunctional to me. I hope it isn't, and I'm just reacting to some word choices. But if the family dynamics are such that nobody can get it together enough to see that Mother's needs are met, then she should probably be in a nursing home.

The thinking of the MD is that mom's condition will improve, plain and simple. The problem is, she came to that conclusion before mom went into the SNF, and is probably too busy or too something-else to look at the report the SNF sent to her.
As to sanitary, the aides dad has been dealing with of late change her briefs (without huge improvement in her lower-body movement she can not get to any toilet, not even a commode) and periodically bathe her.

The responsibility of the family is to get the needs of your mother met. I am having a problem understanding what the hesitation might be about talking to the doctor. If the current doctor is not meeting your mother's needs, perhaps it is time to find another doctor. One option that you don't have is not meeting your mother's sanitary needs. If you are referring to baths, you can often hire personal attendants to come in. They are usually quite affordable. If you are referring to toileting, please tell us more about the problem and someone may have some good suggestions for you.