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My husband and I have been with my 90 year old parents since before Thanksgiving. It is now January 2nd. My husband had to go home to work in another state. My mom got a respiratory infection and was sent to the hospital due to fluid in her extremities and low oxygen. She’s now on oxygen. I stayed behind to care for her and help out my Dad. I thought that she would get better in a few weeks. It’s not the oxygen problem that she can’t deal with when I leave, it’s that she can’t reach back to wipe her rear because she’s too heavy in her stomach. Granted she’s sitting on a high toilet seat with grab bars, but even before we got that, she didn’t want to wipe herself. Then she wants me to bring her a bed pan into the kitchen while my Dad was cooking in the kitchen, also outside on the common area balcony in front of her door, in the living room - to urinate instead of walking to the bathroom. My Dad said she gets out of bed on her own, wipes herself upfront and gets back into bed by herself. When my wonderful husband told her Mom you need to start trying to become independent again like you were, she went crazy on him and told me go home to your husband. He is the most compassionate person in the world. My mom said to him I want to thank you for you giving up your wife - what does this mean? For how long does she think I’m going to stay around just to wipe her? She said I would never have your father to that. I don’t like to use my father’s car so I’m trapped. I also brought my puppy who needs exercise. She told me don’t be long walking him. Also, she’s supposed to be losing weight and she’s eating cookies, etc. So why do I have to wipe her if she can’t reach back because she’s heavy and she’s not helping herself? My husband and I are in our 60’s and about to retire and she won’t even walk to help herself! It’s so unfair! I bought her a tool to help her reach back and she doesn’t want to try it. If she can’t wipe herself now, I can’t just live with her to just stay around to wipe her. So sorry everyone! PS I had breast cancer and need to go to my doctors too.

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Go home and let them be mad.
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It sounds that the simple answer to the bottom wiping problem is that if she can’t do it herself, then her husband your father does it for her. No need to be shy. He’s almost certainly seen a lot more of her naked than you have. If ‘she would never have your father do that’, then her alternative is aged care. You do not have a live-in care giver just to wipe your bottom, mother.

It sounds as though you and your husband have been a bit too ‘good’ for a long time. “We never took a vacation without them! We visit them for weeks at a time because they live far from us. We talk on the phone everyday and we love them dearly”. Have you ever said No? Do they expect that you will always do everything they need? There is a good book called Boundaries, which might be a good thing to read. Starting this when they are over 90 is a bit hard, but it’s never too late to stand up for your selves. Courage!
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Go home. You don't need to wipe her butt. And asking for a bedpan in the kitchen is totally disgusting. It's time for her to be in a facility. Get her on Medicaid and quit spending to pay their mortgage. Turn your abusive brother into the authorities.
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BurntCaregiver Jan 2023
@Bridget

Amen to that. You're the star if this thread for sure and are giving the best advice that can be given.
Maybe the mother is not ready for a care facility yet. Homecare may be the perfect solution for her. If she and her husband need to move to a senior apartment with a cheaper rent to be able to afford homecare, that could very well be a realistic option.
Many people in this life get elderly and have never learned the valuable lesson that what they NEED is often very different than what they WANT. I learned this lesson very early on in life and am glad of it. People who learn this know how to adapt.
Human beings like we are now (homo sapien) learned how to adapt to their changing environment. That is why they survived to become us. Refusing to adapt is why all the other forms of primitive man were selected by nature for extinction.
Like primitive man, many of our beloved seniors also refuse to adapt. We call it "stubborness". So families will ruin their own lives and families the way the OP is trying to give them what they WANT instead of that they NEED.
The OP and others caught in such a situation NEED to walk away and go back to their own lives. Maybe make a call to APS to get the stubborn senior on their radar. Then go.
Neanderthal only ate meat. When meat became scarce the ones who refused to also eat plant foods, died off. Adapt.
The OP's mother refuses to adapt to anything. Won't stop stuffing herself with cookies and getting bigger which makes her situation even worse. Won't "allow" her husband or anyone but her daughter to assist with her toileting needs. She refuses to even try out the wiping device her daughter bought for her. She's going to have a very hard time because her daughter needs to go home today.
I will always tell a senior that nothing will get them a one-way ticket to a nursing home faster than being stubborn.
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This is from the OP:
"...we told her she should go to the Rehab facility for a few weeks and she will heal and learn - she screamed crying. We said it’s not a nursing home - she said NO..."

You need to set better boundaries with your parents.

1. They need to live somewhere they can afford, not where you pay the mortgage.

2. They need to stop giving your abusive brother money. He needs to be turned in to law enforcement for elder abuse.

3. Leave. Call Adult Protective Services in their community and report them as vulnerable elders.
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There is a larger issue at play here: your Mom is in decline both physically and maybe even cognitively. When you say she doesn't want you to leave, or even be gone long to walk your dog (which is irrational) -- in terms of dementia this is called Shadowing. Has your Mom ever had a cognitive exam? I would start here so that you know what you're dealing with and will have better context with which to figure out how much you want to be involved.

You pay their mortgage. Below you said they've gone on every vacation with you. So it is no surprise they see you and your husband as their retirement and care plan. Have you heard of "co-dependent relationships"? If not, maybe it's time you had a session or 2 with a therapist so that you can see and protect your personal boundaries (and those of your husband as well).

I agree with others who recommended a bidet. I also agree with others who pointed out that your Father should be her primary caregiver -- if he can, at 90. But they are both losing ground to aging and health. You just got a small taste of what is to come. This is unfair to your long-suffering husband. HE is your priority, not your parents.

Think long and hard about continuing to stretch yourself financially by paying for their mortgage (hopefully the house is in your name? If not...why not?) Have a scripted talk with your parents about the boundaries of your caregiving efforts. Tell them you'll help them simplify their lives so it is easier for everyone. This may mean they hire (not you hire) day aids/companions to assist them.

Your Mom will get mad because you are about to shatter her assumption about who is going to pander to her in her decline and be her Wiper. It shouldn't be you. It can't be you. Defend your marrriage and husband. With no kids, you will certainly need all possible assets to support your own aging decline. No one can be assumed into caregiving. You have to agree to it and know the terms. That hasn't happend in your case but it's not too late to reframe the future. It will be hard before it gets better. If you know this going in, you can hang on to this hope. Good luck!
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maximus1 Jan 2023
Thank so much for your advice! I finally said NO I cannot stay - I’ll be leaving in a few weeks. I can’t believe I did that! The only problem is that my Dad will be 95 on Feb. 23rd. My mom will be going ballistic once again because if I leave in a few weeks I’m certainly not going back to Florida for his birthday! Read my other posts. I have been with them for every single occasion since I came out of her womb for weeks at a time. We can’t do this anymore- we’re both drained from it. I dread telling her that we won’t be there for his birthday. She has been guilting us forever! My mom would never leave her husband! I’m missing my 34th wedding anniversary which is special because we were married on Friday the 13th and it’s going to fall on Friday the 13th this year. Once again, I’m giving up my life. My mom did a lot for her kids, but she would never ever leave her husband, not even for HER mother! My husband wanted to take me away to Europe to see castles because I love history after my breast cancer chemotherapy because he was worried I wouldn’t make it in the future. I told him I can’t do it alone with him because Mom and Dad may get upset that we weren’t going with them. I don’t know whether I’m crazy or really a nice person!
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Feeling a bit hippy here but here we go...

Move to the centre of the triangle.

The three corners contain patterns of behaviour: Swooper (Fixer), Victim & Persecuter.

When you feel charged to react, magnetised, pulled into one of the corners - resist!
Stay neutral in the centre.
Be like Switzerland.

When Mom takes the Victim role, says poor me, you're leaving etc.. she wants you to take the Fixer role. To stay & fix her problems.

When Mom says you don't care about me, your husband is mean etc she has taken the Victim role again. This time making you/husband out to be Persecutors.

It's a merry dance of communication. Around the triangle it goes, like magnets pushing each other.

The way to stop being controlled like this, to be pushed around like a magnet, is to move to the centre.

Be neutral. Dis-engage.

It takes practice.
(I am still leaning).
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polarbear Jan 2023
Beatty - I really like the way you organize thoughts, so logically and easily understood. You're so good at drawing pictures with words. You're probably my 2nd favorite writer on this forum.
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Look, I don't mean to be rude. But without actually wanting to change the family dynamic, it will never change.

Even a good therapist to roleplay & look at new communication styles won't get anywhere if no-one wants to actually change.

Many people are happy with their super-close family relationships. If you are Max, well, own it!

All the advice in the world on how to unmesh is most probably useless for you.

So I'm changing my tune.
To options that may be more realistic for your situation.

A. Action. Find an AL. Either your town or theirs.
Find it. Arrange the funding. Move them in. Sell/rent our the condo.
*Make the changes*

B. Be their Maid. Wait for the next crises, birthday or whatever reason sends you back to the folks. Just stay. Make peace with it. They are late 80s/90 - may only live 6 months or 5 years more - so share that time together. You may need to leave your DH behind, this does happen. But it is an option that people do take.
*See it through to the end*

C. Check out. Disengage from any responsibility. Let them age in place as they wish. Wait until a crises forces them into hospital / a NH.
You stay home too, doing what you do, making your daily calls to them. It doesn't really matter where they land, right? You can still call morning & night.
*Let the world decide for you*

If you WANT to take action, but lack the skills/knowledge, seek out people to help you. There are agencies that specialise in finding ALs & elder law/financial services too. Find a Captain for this ship.

If you want to keep the peace & make no waves, do that.

But know choppy waters lie ahead. You have been warned.

I wish you all the very best with your choices, towards action or go with the flow.
Take care, Beatty.
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To all of my new friends! My mom started to tear up saying we need you here - you are leaving in 2 weeks? Can’t you stay? That’s not enough time - dad needs you too. I held her arm, looking at her in the eyes and said mom I need to go home - I have to see my oncologist. She then said ok then a few weeks, to which I replied ok a few more weeks, but then I go. She asked me who’s going to help me wipe myself? I said mom, the occupational therapist will teach you. I understand where you’re coming from - I had sciatica and I forced myself with pain to do it. You can do this - you will heal with the oxygen problem, and even if you don’t, this is the only thing that you need to fix. You can learn, people with back braces learn. Then when the therapist came she told her my daughter has to go home and I can’t have her do this anymore. I’m so embarrassed. Today she got up to urinate and didn’t ask for a bed pan. My husband said she’s is scared to be alone and she may have a little dementia. My husband and I love her so much, even though she’s a task master, and we’re scared too for her - but we also need our life back. Emotionally, we understand she needs us, physically we can’t help. We will never abandon her emotionally. Thank you so much for the wonderful advice! Can I keep in touch with all of you? I hope this is reaching all of you - I don’t t know how to post a general post.
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Isthisrealyreal Jan 2023
Well done! Progress has begun! Yipee!
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Max, max, max! Your life is not over unless you choose it to be. I think there is some Italian drama here. You have been living a big segment of your life with your patents who subject you to an emotional roller coaster ride. And you are catastrophizing - fearing the worst of what is to come.

This is not good for your health. I'm going to give you some hard words here as you have some hard choices to make. I can see you are worried about your cancer coming back, Good! Then do what you have to do for your own survival and reduce the stress in your life. There is evidence that cancer thrives on stress. Use more of your resources (time, energy. money, caring) for yourself and your hubs. Latterly, when my mother spoke like that to me I was out of there and in a hotel. Eventually I didn't stay with her any more. Your body is saying NO! (Book by Dr. Gabor Mate "When Your Body Says No"). Your health can't afford this!

Your mother is not in her right mind, your parents are not independent, and they do need assistance from professionals now, not some vague time in the future. So your mother wiped her own bum. Good, but that doesn't solve the larger problem that they are becoming more and more dependent. What you can do, as their next of kin, and as other posters are saying, is investigate facilities that will provide care for them. Facilities have equipment and staff who are trained to work with 200 lb. ladies with atrophied legs. Get the paperwork in order - POA etc. Look into Medicaid. Get some therapy for you to learn to deal with your life better. You don't have to sacrifice yourself on the altar of their wants.

Will they like it? No, of course not. Your job is not to please them, or make them happy, but to help get their needs met. Remember wants are not needs. Sure they love living on the water. Unless you can afford to hire enough 24/7 caregivers to keep them where they are, this phase of their life is probably ending. As we age our needs increase and our wants have to take a back seat more and more. That is life. I am 85 and, believe me, my needs are increasing and I have to make decisions based on them, not on my wants. At some point, I will likely need to move into a facility. Do I want to? No, not at all. What do I want? I would love to live in a villa in Tuscany. It's not going to happen. And there is no way on God's green earth I would expect my daughter to put her needs behind mine and look after me so my wants could be met.

Up to 40% of caregivers die before the people they care for. They put off their own medical care, they don't get enough help, they live in a state of stress - in short they don't care for themselves. You are the poster child for this. Again, you have some very important choices to make.

Two quotes by Paulo Coelho:

 "When you say “yes” to others, make sure you are not saying “no” to yourself"

and

“What's the world's greatest lie?... It's this: that at a certain point in our lives, we lose control of what's happening to us, and our lives become controlled by fate.”

((((((hugs))))) to you and prayers
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BurntCaregiver Jan 2023
Well said, golden. Well said. I hope the OP takes your very sound and excellent advice.
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Max, I have a personal trainer and this morning she was telling me her elder care woes with her in-laws. She was contrasting the way one of her BILs handles HIS parents with how her husband and his siblings deal with the same issues.

When BIL's parents started having fender benders, he went them and said "Mom, dad it's not safe for you to be driving any more. He took their keys.

When it was clear they shouldn't be living alone, she sat down with them and said "this isn't working. You need to move to AL". They picked one out and he helped them move.

Her DH'S family, by contrast, hints, makes vague statements about "not getting any younger", engages in long backs and forth about whether they should wait to go to a nice AL. The MIL has dx'ed dementia and her husband/caregiver is worn out. If he is hospitalized, they have a huge emergency on their hands.

BUT they are SO afraid of hurting mom and dad's feelings!

Max, be direct with your parents. I am a big believer in the idea that God/tge universe sometimes gives us a "trial run". This phone call from dad about his hernia? That was your wakeup call.

If mom can't be left alone without supervision if dad goes into the hospital overnight, then it's time to move them.

You need to have a direct, honest and short conversation about this with NO attention paid to your mom's histrionics.
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BlueEyedGirl94 Jan 2023
I think about this all the time with FIL. Since BIL and SIL moved in with him BEFORE he went downhill - we watched him decide he wanted to be dependent rather than need someone to take care of him first. He was independent when they moved in (their own need) and became dependent because they were there.

DH and I are all in favor of finding a Skilled Nursing Facility for him now- but they would need to move out of his home in order to prompt him leaving - as long as they are there he will not leave.

But if they don't proactively choose to leave, and something happens to them - there would be a mad scramble - because DH and I already know that we won't be moving in with him to provide care.

As it stands right now he is coming home from rehab tomorrow and we have a lot of concerns about the differences between what he and the staff are telling us he is capable of doing and what the staff and the doctor are telling us in the discharge paperwork. If the staff's verbal information is correct -he will be fine to come home. If the discharge paperwork is accurate - we may have some issues with him when we get home.

And if we have issues - we will be scrambling to find care if he isn't capable of helping himself in certain areas (specifically transfers and toileting) because neither BIL nor SIL can assist and we are an hour away. Not to mention he is 300lbs so realistically no one can really help.

DH and I talked about it today and outside of calling for an occasional lift assist if he only struggles periodically - if it is consistent and he is not able to do what they claim....we will have to hire 24/7 caregiverS (as in two at a time) to assist until we can find somewhere to move him - because if he can't transfer or toilet himself that is the line we drew a long time ago on what constituted able to stay in his home vs having to move him.

Because it isn't possible to find immediate placement and if he can't transfer he will literally need placement immediately. So the only option will be in home caregivers.

People often don't realize that they can go from having the situation completely under control to an emergent situation literally in the snap of their fingers and at least have to have a couple of emergency options to cover the gaps. Even our emergency options are for different scenarios these days.
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