How does a family determine whether it is appropriate to maintain healthcare in the home?

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My mother in law has been living with my husband and me and our three children for 15 years. She had been widowed for already a decade before coming to live with us, and she has been disabled all of her life. Over these years, we have seen a gradual decline in her health, having had multiple surgical procedures and being in and out of the hospital for various reasons. Following a recent hospitalization, a catheter was administered and they sent her home with it. Today is day one for us to figure out how to manage everything, which ranges from helping her get from place to place, make all of her food and empty the catheter bag, along with making sure she gets the right medications. We are quite literally overwhelmed as a family & I continually ask myself whether this is a healthy existence. Our kids are ages 10, 12, & 15 and all of us have experienced emotional struggles and a few of us are definitely dealing with some levels of depression & seeing our own counseling. The issues that come with taking care of an elderly person are vast and impossible to predict. Quite frankly, I am her primary care giver and am maxed out. How does a family decide that it is time for a change, & whether it is even possible for a change to occur? Additionally, if the elderly person refuses to make a change (as in assisted living), does that mean we are completely stuck? I certainly feel stuck right now. Thank you for your help.

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Oh I so feel where you are right now. I've pretty much have just zoned out of life and anything that I once cared about. my MIL has been living with us for 22 years, 10 years prior she was divorced and 10 prior to that she had had a minor stroke. She has been mentally the same as day 1 of living here, but she has said the same exact things as she had said 22 years ago as she does now. The one thing that has been constant is that she has gotten lazier without trying to help herself to take the burden of of us all ever since she came here. She's always said, and still say's, "just tell me what to do and I'll do it", but even back then she would move at a snails pace, and I SWEAR to you she'd move slower than she would ever move until you would have no choice but to take it from her and do it, especially if it was something that was needed for dinner, like the wrapping off the Kraft Cheese. She would literally move so slow, and she would pick the cheese off so it wasn't in one square piece but pieces of the slice, and she'd space them out on the plate in a bunch of pieces and say it was all stuck, YET she'd throw away the rest when she though she'd have enough to look like there were 4 pieces on the plate! This is just ONE example of the things she'd do because she wanted the easiest way out of doing it. I've honestly never in my life met anyone who moved as slow as she did (20 years ago when I first me her), or lied as much as she did, or would answer in whatever way she thought you wanted to hear the answer, or would say the same thing over and over to convince you that this is the way she wants YOU to believe her. She'd say, (for 22 years now), "I'll just sit over here so I don't get in your way", "it'd be faster if you just did it", "if you'd just show me how to do it, you wouldn't have to do it"- YET, she'd PRETEND she couldn't do it, and unless we made it a point to POINT it out to her that she can and will do it- she wouldn't do it. NOW, my husband IS DOING EVERYTHING FOR HER! He's not even saying anything anymore about trying, he's just doing, and now I have to serve her her dinner, put her mediation in box and he hands it to her, she undresses herself and my husband runs the tub for her helps her in the tub, she sits down and cleans herself, he helps her out, gives her a towel, sees to it she put her diaper and clothes on, she sits down in her chair and never moves until he goes downstair and tells her to get in bed. next day, get up mom, gets in chair sits there until he comes home.... I just can't and WILL NOT BATHE HER! It's all I can do to even look at her anymore. She has cost me my marriage, I've raised my grandson there where he's lost out on any life. My husband could have done so much more to have made this easier to where I would have done more. BUT i'm talking about recently, NOT ALL I HAVE DONE up until this point, of washing her clothing, cleaning the poop she trailed everywhere, cleaning the toilets, rugs, SHE NEVER washed her hands! Left her dirty plates, bowls, cups dirty- never changed her sheets unless forced, omg- I can't go on. I'm just lost, done, over- The dog had a terrible bacteria infection when taking her to the vet, I asked WHY? The vet hemmed and haughed and said, well I don't know. Then I take her to the doctor and guess who has a bacteria infection and gave it to the dog? She lets the dog lick her dirty pee legs, sits up on her, in bed-- OH DEAR GOD! This is MY LIFE! So I'm right there with you with feeling completely stuck! I've been on this communtiy for a couple years now. I generally vent, THE SAME thing, and I truly am sorry for dumping on everyone and then fleeing, because I'm sure some have left advice that I've not returned to but I TRULY do thank you, I'm just coping, and barely hanging on... just like you and I'm sorry for giving you no advice at all. But, God Bless You!
Love,
Lee
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Reply to Leelor
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We are in the same boat unfortunately, and without a paddle. Although, my mil with alzheimers has only been here since November 2017.

Today, I am currently working on writing up a personal care giver agreement between my mil and my adult daughter to care for my mil in our home. As far as boundaries go, I am so much harsher than my daughter. I know one day this won't be able to continue (and I know it shouldn't now, as my daughter has a 4 year old, and the husband doesn't do much of anything for his mother other than work his butt off). It seems like, in our case, there's sooo many hoops to jump through.

Best of luck with everything!
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Reply to Lostinthemix
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Can you call the discharge dept at the hospital and see if there is a possibility of getting her back in for rehab? That your family is unprepared to do this level of medical care?there may be a 72 hour window of opportunity, so do it now.

You can also call her doctor and ask him to prescribe rehab services.
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Reply to BarbBrooklyn
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Well. The first thing to note about boundaries is that everyone has to keep to them. Are you likely to get full co-operation from your husband? I don't mean that to sound as if I'm narrowing my eyes at him; but it can be difficult to break the habit of a lifetime, and I wonder if he has had much practice in saying no to his mother. Is that fair, just to wonder?
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Reply to Countrymouse
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Thank you all for your ever helpful responses. It is imperative to know we are not alone on this journey of caregiving. We have been able to acquire some outside aids to come to the house a few times a week for now. However, the underlying issue (that one of you pointed out) May be that there is refusal on her part to consider an assisted living or skilled nursing facility. One big lesson learned this week - Caregivers need to make a concerted effort to talk to the DOCTORS when an elderly patient is in the hospital. Not just the nurses. Although we were visiting her while she was in, we never coordinated with the Dr, and when he recommended she go to rehab, she told them she refused to go. If we had been present at that conversation, it is possible the tides might have turned and we would not be dealing with all of these things post surgery in our HOME. Yes I hear all of you loud and clear that we need to make a change in our family structure. However, because of her refusal to go, I think we are again stuck and may remain stuck. So next question- How do you set those boundaries & how does one determine how to make a drawing point?
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Reply to beckyciab
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If there are siblings, they certainly have no say if they aren't involved. What I meant was to bring them into the conversation about what will happen since it's time for MIL to move on and out. Maybe one of them will take her (I know; not likely!). Maybe there is a nice Assisted Living near them. I think this family has done it for way too long now.
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Reply to CTTN55
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If MIL is cognizant of her surroundings, it certainly is time for her son to have “the talk” with her. Most seniors I know would never want to be a burden on their children to the extent of sending them to therapy. 15 years in one place is enough time to become very settled. However, Seniors aren’t the fragile china tea sets that a lot of people want to treat us as. We didn’t get this old by being easy broken. You need to tell Hubby to man up and speak kindly but firmly with his mother. If someone told me I had outstayed my welcome, I’d leave a smoke trail out the door. Probably before they told me.

Think of how long your kids have had to live in the midst of a hospital room. Medical supplies, hygiene procedures, etc., all right in front of them. My grandson is 10 and I would never ask him to witness the things I have to do for his grandfather.

Your husband needs to do the speaking, but present a united front to MIL. The longer you wait, the worse it will get. Or, do nothing. Maintain the status quo until the bottom falls out and you’re left wondering why you weren’t proactive when you read our advice.
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Reply to Ahmijoy
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My brother took my mother and dad in 21 years ago. Dad had Parkinson's and passed 14 years ago. Mother was able to pretty much care for him with support and he passed at home.

Mother has remained in the home. She has done that slow slide into senescence we all fear. Slowly inculcating her life and demands into brother's family life. The youngest child has had mother there her whole life.

The ENTIRE family, including SIL is on medications for depression. Several have been therapy. Of mother's 6 children, 5 of us have had to go the medication/therapy route. I can't blame her, but she's definitely the core problem here.

However, while the 4 remaining sibs all think mother should be moved to a SNF--she has dug in her heels and so has brother. She's not going anywhere. She's not accepting any kind of outside help, and now that brother has told me to not grace his home with my presence (I got an exception on mother's birthday)...he has literally not one person who will help him. LOVES the martyr role.

It has NOT been healthy for brother's family to have mother living there. But it has kept brother from having to "do" anything. He has mild agoraphobia, and really is only OK when he is home. 2 of his kids also have it, a little more severely. "I have to be there for mom" is his excuse, and if you bring up SNF he literally will scream at you. It's not fun.

In retrospect, having the folks live with brother was an epic fail. IMHO, but that counts for nothing.

If the care of an elderly parent is upsetting or negative to the children, it's a hard pass, as far as I am concerned. MY parents didn't care for THEIR parents. Just sayin.

Take a giant step back and look at your situation clearly. IS this healthy for all concerned? Why do you have mom (and a high maintenance sick person) in your home requiring all your time and energy? Is it out of complete necessity or guilt? Only you can answer that.

I opted to go to my FIL's 3 xs a day to feed and care for him for MONTHS rather than have him move in with us. Hubby has never and will never forgive me--but we had 2 kids still at home, one in a very fragile emotional way. They came first. Period.

This is you call. Mom will get worse, those cath bags are difficult to care for properly and while mother has one, I can state she also has a UTI all the time. You ready for that?

I wish you the best in your decision making. This is hard, for sure.
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Reply to Midkid58
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Country mouse is so perspective, please consider what is said carefully.

I can not imagine a man putting his children in such a situation. They are very young to be having such issues that require professional intervention. My personal opinion is, it is time for MIL to get professional care for all of your wellbeing. Of course she doesn't want to change anything, she's had it made for 15 years, to the detriment of her grandbabies. This in itself is enough of a rub for me to kick her to the curb. Our elders matter a great deal, they are our history, however, they do not matter more then our children. Children need loving, stable homes to grow into healthy, happy, stable adults. Something about this situation has destroyed that for them, please have a heart to heart with your husband about how to protect your children for the small amount of time you have left.

Others say to include siblings, unless they are taking her, they have no say. This is your family, your house and you. They don't get to decide anything about that aspect of her residence, only that they will do the next 15 years.

This can all be handled lovingly, calmly and without hurt or hard feelings. Make a plan with your family and then tell others, including MIL, what will be happening, she has no choice to stay, AL, SNF, other child home, etc. Staying is not an option, her care with 3 youngsters in the home is too much for 1 person, time to take care of yourself and your children.

I pray you get good support from your husband and children and MIL comes to understand that her care has been moved up to need professional care. You still love her and will visit often, she can come for visits and won't that be wonderful. Or she can be ugly and miss out on the above, her choice. Be prepared for the guilt trip of your life while getting her into a place that can meet her new increasing needs.
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Reply to Isthisrealyreal
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Becky, is it the catheter that's been the last straw just now?

Is it too late to go back to her team at the hospital and ask for a transfer to rehab?
If that's not going to happen, what about hiring a daily agency nurse for the time being?

Meanwhile.

Your MIL moved in with you when your first child was born. You say she has been disabled all her life, and at that time had been widowed for ten years. Were you glad she was coming to live with you? Were you okay with it? Were you not consulted?

I am beginning to think that your post is a bit of an iceberg and I am wondering what is under the surface.
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Reply to Countrymouse
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