How do you step back and wait for the catastrophe?

SooDoo, you have gone above and beyond in trying to help your parents. But if mom wants to act badly, you are limited in what you can do. I would worry about my father in this situation. Does she care for him adequately? Have you reported a vulnerable adult (Dad) to APS?

Refusing help is the number ONE reason elders DO have major catastrophes! If only they would say "you know what, I really could use some assistance now." But no, they would rather majorly inconvenience their family members! Oh no, I have not fallen? Ahh...say what? My mother's childlike response="I don't have to tell you everything."

I'm curious how people who can't afford help or assisted living pay for it? My Dad could really use some help (I have a post in new to caregiving about my situation) but we are told Medicare won't pay for it. Pretty sure Dad and Mom would never ok giving up their home to pay for anything even if they could find a buyer. They are living with me now but my brother runs cattle at their place. They all lived together. But he is barely scratching out a living too. They would never do anything to end up taking the home my brother still uses.

It was very good of you to do as much as you have done for your parents, considering how they act. I have put up with much less than you, and have finally distanced myself and limited my time with mom to once a week and several phone calls. I leave the rest of it to her social worker, from whom she gets some paid help and people who drive her. You've tried that, so relax; it will come to a head, and then you can help - or not.

In my & my sister's case, the "catastrophe" came & went & nothing's been resolved. Three & a half months ago my mother fell out of bed. She waited about two hours, lying on the floor, for a phone with which to call me & my husband because our father has dementia & wasn't able to find the phone. She refused to allow us to call 911, but relented once we weren't able to pick her up. Her arm was broken, and after spending the entire day with her at the hospital, she was being discharged & had a small stroke. She was admitted, sent to rehab after a few days, then released on the condition she have 24/7 in-home help. She treated the aides worse than any human being should be treated, hurling insults & calling them the worst names. The VNA were in place for therapy & social work, but once her arm was healed they were discharged & she fired the aide who was still brave enough to be there. She met with the director of the home health agency & treated him the same way she did the aides. Things have deteriorated to the point where we refuse to speak to her or go to their house--she repeatedly told us to get out, to never come back, that she never wants to see us again. She called us "evil" & "worthless" & bad-mouthed us behind our backs to my husband & my nieces. She told one of my nieces that we should be able to put up with her abuse after she gave us "the moon & stars". We finally realized it's what she must truly want; why else would she keep saying it over & over? And why would we subject ourselves to her unending negativity, verbal abuse, and insults when she's made it more than clear she doesn't want us there? We tried--oh, we tried & tried--to no avail. For several years we did their laundry, grocery shopping, whatever they needed that we could do, we did. It's clear to us that they should most definitely not be alone in the house, but, because of the abuse, we WILL NOT give up our lives to live with them, and even if we were foolish enough to do so, there are certain aspects of caregiving we are completely unwilling and unable to do. Our mother has mentioned assisted living, but not seriously. She's an extremely narrow-minded person with very strong ideas about people & who she wants to be around, and is convinced those are not the kind of people she'd be "subjected" to in an ALF. We know the time will come again when we hear either from her or someone at the hospital emergency room that another accident has happened. I live & work near their house, and every time I hear a siren I'm convinced it's headed there. It's a disgusting situation, but we feel our mother has completely brought it on herself. We're more than willing to help where we can, but not under the circumstances she's created. What makes it even more complicated is that they also own the house next door to them, and rent the first floor. We've told them we'd help with any selling/moving involved if they ever make the (right) decision, but at this point I don't even know about that. It's tragic that so many of us are forced into these horrid situations, and when there's a toxic parent involved it makes it that much more heartbreaking. Sorry I'm not offering any advice or suggestions. I guess I'm looking for some myself. Best to all of us.

House in the East Coast and in the West Coast, going back and forth??
but cannot afford help to come in or to redo a shower?
Changes to be made to that budget, I am guessing.
How to step back......hmmmmn.

These stories make me so sad. Brings back bad memories. I agree with Countrymouse.
I'm only 55 and am stuck in my ways. I hate change. I had that blanket when I was a toddler. Old, ratty, torn, probably smelly too. My Mom was smart though. She bought me a doll. It was called Teary Deary Doll. She managed to slowly get me to attach to it. She tossed out my Banky as I called it. Then the Teary Deary Doll was replaced and so on and so on. Maybe that's an idea for caregivers. Don't make the change an all or nothing thing right off the bat. Just start with small changes and gradually work up to the big ones. Of course, time is a factor when you are dealing with health/fall concerns with elderly people but maybe for future caregivers whose parents are not at that critical stage yet. Gradually implement the changes.

Maybe, someone else on here has some ideas on little changes to start off with and so on and so on. Food for thought anyway.

Caregiving is so **** hard!
Love coming here to grab some smiles in the midst of it all!!

A Little Debbie sounds good right about now...(after I eat my 2nd bowl of ice cream for comfort)

Yep, comfort blanket is right. My folks have the sofa that was there when I was in high school. I'm 62. I'll not even get into the condition of everything else in the house. Getting dad a new recliner and the carpet cleaned have been my only 2 victories in the past 6 years. I've given up now, don't worry about it, don't nag them about the nasty stuff and we're all much calmer. I really don't care anymore.

Aging is such a gradual process. My folks have been looking at this old crap their whole lives, and don't have the slightest idea there's anything wrong. And they don't understand why I can only stand to stay a few nights when I visit. Oh, and they haven't opened a window since the Johnson administration.

I wonder if this isn't the most common complaint amount caregivers: Waiting for the boiler to blow on the slow motion train wreck. I've been thinking it'll happen any minute for 6 years. It can wear you down if you let it. I've had to detach. Accept that there will be a blown boiler.

I know they don't eat right. I can't get them to eat decent food even when I'm there. I got mom an electric lift chair. She struggles to get in and out of it and uses her control button only to raise and lower the footrest. Drives me bug s...t! She's too vain to use the electric scooter at the grocery. So she just doesn't go, sends dad, with dementia who can find milk, Bologna, cheese and little Debby's and that's about it.

When I visit I always stock the fridge with some fruit, salad in a bag etc. and then throw it all out on my next trip home and then sit down and have a couple little Debby's with Dad.

What can you actually do? What will they let you do? My in laws, who are always sickly and having operations and falls and live with a loud drunk of a son, will not move, cannot get a live in caregiver (who would live with the son?), and say they are fine for now.... Both other sons have seen signs they are not, one stayed with them a week, but they will not give up their dog (old dog, thank God) or go where their drunk son cannot stay with them. So, we wait and pray.... Other than getting yours declared incompetent (which sounds like a good idea), you may be in the same boat.

"Comfort blanket"
Well said Countrymouse.

My mother lived in a tall narrow three-storey town house with terrifying stairs, one of the major factors in persuading her to come and live with us when we moved house. There had been several attempts to find her an ideal home of her own before then, none came to fruition. It is extraordinarily frustrating.

But I don't find it that baffling. Unless your home means nothing to you, is it really so hard to understand why elderly people who've lived in one place for decades are reluctant to give it up? It's like the child's comfort blanket - ragged, smelly, colourless, of no use or ornament and decidedly unhygienic (unless you can sneak it into the washer while he's asleep) - but incomparably precious. There are lots of beautiful homes in the world, of course, but if they're not yours they're just not the same.

I remember quizzing my parents and their stock answer was "oh, we will manage".

The term "living independent" needs to be changed. It's not exact especially when we are the ones doing most of the things so that they can be independent. Something is very wrong with this picture.

BokBokBok: What you explain is so typical of my most elders. It makes a tough choice for you when you'll have to go rescue them, but "oh, yes, we're fine." BS

Marymoyer31: You must have been so irate with your mother WALKING BACKWARDS into the bathroom! Did she think she was some kind of stint woman?

I told my daughter when I get older and if I give her any trouble, she is to do me in. She said I would have to sign a waiver first. LOL. But seriously if anyone has the magic answer as to why our elders are so stubborn, I would like to hear it.

Maybe consider a motion activated video system. Some are not very expensive and give the comfort being able to see what's going on when you cant be there. My mom lives with me and I use a video baby monitor so I don't have to jump up with every noise, and it has given me relief. Some systems will send the recording to a website. I recommend making sure they agree to it.

"The land of legal competency, practical incompetency" COULDN'T be more accurate! I am going thru the EXACT same thing with my 85 year old mother. She lives in a 3 story home with bathrooms either upstairs or downstairs. She has been in and out of the hospital and rehab 5 times in 6 months...has used up all her medicare paid rehab days and it is only June! She is supposed to use a walker or rollater at all times, and has injured herself already once doing stairs.....fortunately not too severely, but thought she had a broken rib. Even that wasn't a wake up call for her. Unfortunately, even though all her doctors, therapists, hospitals, etc. have vehemently stated to her that she should not be living in that house, and that she even needs assistance with daily activities (showering, dressing, taking meds, etc.) and that AL is her best option, they can NOT prevent her from going back home as long as she is competent. She even got Adult Protective Services involved to stop us from harassing her about going into "a home" as she puts it. We had her approved for a wonderful one-bedroom AL apartment in a very expensive, resort-like senior community. The apartment was just waiting for her upon release from rehab this last time, but NOPE, wouldn't go. It is very frustrating to me because she has the means to go somewhere with the very best ammenities, care, etc. but won't, even though we are willing to spend her money to do so. SO, I finally saw an elder law attorney to find out how to protect ME from this bad choice. Basically, he said I should resign my POA over her healthcare, which will prevent me from being held liable in the event something happens to her....even though he also said the liklihood of that actually ever happening was less than winning the lottery! It also has given me the ability to walk away from her peacefully, because now I legally have no say-so in what she does. I was already at that point, because I know that I have done everything possible within my abilities to help her be in the best place possible for her, but still wasn't successful. I keep telling myself that you can lead a horse to water....Anyway, you need to just "let it all go." You have done your part, but again, you can only lead a horse to water. I know it is hard....there is guilt, sadness, worry....all those fun emotions that creep into your mind every day. But you just have to keep reminding yourself that you have tried your best and can't do any more than that. This is how they are choosing to live the remainder of their lives, sad as that choice is, but it is their choice to OWN. Also, death is inevitible. I think sometimes we forget that, esp. with the elderly. We fight with them to try to keep them safe, alive, etc., but maybe we need to step back and just let nature run it's course....so to speak. No one lives forever and if someone doesn't want to accept the help we are trying to give then we have to let nature just take over. Sometimes it's a disease, sometimes and accident, sometimes they go peacefully in their sleep.....and sometimes it is just letting whatever happens happen that ultimately claims their lives. I hope you can find some relief and peace as I have. Just keep reminding yourself you have done your best and you can't do any more. It is out of your hands until they are willing to listen or accept the help you are offering.

"Play ball with me or you're off my team," e.g
they're on their own.

Another poster put this very well: Legally competent, but real world not competent at all. Horrendous!

Went through it. Dreamland fantasy that he was going to ever get out of bed and walk again - they spent over a hundred thousand dollars on a specialized wheelchair for obese people, a "nothing but the best" van retrofitted for the wheelchair he would never use to be wheeled into and locked into the driver's position so he could drive - despite sever neuropathy of his feet that caused them to jerk and lose sensitivity (it was somewhat of a blessing that he became totally disabled before killing or maiming himself, his wife, or others). She had dementia, would drive and get helplessly lost or head for her childhood home where she thought she still lived, leaving him with no alternative but to call an ambulance to be brought to the hospital as he was totally dependent on her for his every need, being confined to his bed. When she finally was in a (thank God minor) accident in the middle of the night in another state, he had to face that it was more then he could manage, and she went into assisted living while the help she refused to allow into the home was finally able to go in and help, including removing years of outdated groceries, a refrigerator full of stinking, rotting meat (he had been warned not to eat anything prepared by her, as it was likely rotted and she could mistake poison for seasoning - no one had any control over what she brought into the house or in disposing of old food). She "washed" him with bleach by accident on several occasions, but he could not overcome her opposition to help. They had to be moved to another state, rather than stay in the community they loved, because of neighbors and others who were "helping themselves" to their money and belongings - and nothing could be done because he was of sound enough mind to make his own decisions - no matter how ill advised. One neighbor was given over $20,000 a year (that we can document by checks - there were also a substantial number of cash gifts, and charge card charges for things for the neighbor). Once moved, the phone numbers of the criminals that kept begging him for money were blocked so they couldn't call asking for money, to stem the financial bleeding. Anyone who can make decisions, or who, if on the day you show up to court for guardianship or other legal method of helping, they have a sudden clarity of thought and can answer some basic questions to the court, will be allowed to continue on their self destructive course. It is the most frustrating, nerve wracking, heart breaking experience to watch and be precluded from helping if they don't want help.

Perhaps the reason they refuse to move is the thought of cleaning everything out is just overwhelming, and they are paralyzed with fear at the thought of that. Your mother may be embarrassed with the condition of the house, and doesn't want others to see it. She may feel if she doesn't think about it, she doesn't have to deal with it. Unfortunately, I don't know how to concur that. Good Luck!!

I agree with Tattoochick, it doesn't get easier once our parent(s) are in Assisted Living, Memory Care, or a Nursing Home. The emotional damage has already been done. There are still sleepless nights, and panic when the telephone rings.

I think it is a very common story for most of us to just wait for that phone call that says our loved one is n the hospital. I had to step away from my mom was verbally abusive and just did not care about how much of my life I was giving up for her.

As for me, it was actually her firing her in home aide and the police being called for her to finally give in to assisted living (which only after a month became memory care). I know she needed the help, put it had to go that way. You can't feel guilty, trust me it doesn't get easier once their are in an ALF, Memory Care or Nursing Home.

I have warned my out-of-state brothers that it will be a crisis that will make my mother move out of her condo. She has agreed to a fall-detection button (an upgrade from the one she has to press). She has talked about hiring a cleaning service for months. She should have someone there to monitor her showers. She has very poor balance, neuropathy in her feet, no sight in one eye, atrial fibrillation, history of TIAs, etc. She is a fall risk. Almost 91 years old.

I'm sure my brothers would love it if I would volunteer to be my mother's home health aide (be there when she showers) and housecleaner. I refuse. I don't want to do for her, because she has made it quite clear that my time is worthless. No appreciation = no service. I was roped into becoming her taxi service, and had to set strict boundaries for that.

One of my brothers visited her this past weekend. He said it's like she lives in a prison. It's stuffy and dark (she keeps the blinds closed). It's her choice, though.

She talks about assisted living, but we know she's not serious about it. When the fall happens, she will be hospitalized, then in rehab, then in a facility that she will have little to no say in choosing. And under no circumstances will I agree to provide any care so that she could remain in her condo.

BokBokBok,
I know this must be so frustrating. I do wonder about something you said in your first post. You said that when you talk with relatives, you feel that your parents' refusal to move is your fault. Can you explain? I don't understand this. It there something the relatives are saying that causes you mto feel this way?

I might also add that while not visiting the house is a good idea in one way, it might deprive you seeing when the situation makes a turn for the worse. How are they at taking medications, avoiding spoiled food, proper hygiene, bathroom clean? If they can't really maintain their own household, it might be some evidence of incompetence. I might consult with an attorney in their area to see what evidence you need, IF you were to attempt to take legal course. That way, you know what is required. Sometimes, poor judgment is a first sign of cognitive decline and not memory loss. Sometimes, courts consider the ability to keep one in a safe environment, free from dangers, etc. I'd find out the standard in their jurisdiction. Plus, what does their doctor say? I would think the doctor would be quite concerned.

I can totally sympathize with all of these stories. Our parents live half time in NJ and the other half in FLA. They were in FLA (west coast) since January of 2017. My mother got sick and refused to go to the ER after weeks of battling an upper respiratory infection. She ended up there anyway when she couldn't breathe. They admitted her found she had a pulmonary embolism and she started acting disoriented. A UTI was found and she received antibiotics, but was coded as a fall risk and eventually restrained due to her constant battle to get up and walk out. The sitter at the hospital left her unattended and she got up to leave, fell on the floor and sustained a subdural hematoma above her eye. She was in the hospital for over 4 weeks, then went to a rehab facility for another 4 weeks. My sister, who lives on the East Coast of Florida, took them both to her house to continue her rehab. They recently demanded to go home (west coast) to take care of some financial business, taxes, etc. Mom recently fell again, trying to go to the bathroom on her own. She was WALKING BACKWARDS into the bathroom because her walker did not fit through the door. It's just a matter of time until something tragic happens, but they refuse any help. My sister went back and picked them up for appointments they have on the East Coast and frankly, I hope they stay there. They want to fly up to their condo in NJ in August. Their condo is very small, not outfitted with a proper bathtub for them to use but they won't spend any money to replace it with a walk-in shower. I'm afraid one or both of them will die and we have to have them transported back up to NJ. $$$$$

I can totally sympathize with all of these stories. Our parents live half time in NJ and the other half in FLA. They were in FLA (west coast) since January of 2017. My mother got sick and refused to go to the ER after weeks of battling an upper respiratory infection. She ended up there anyway when she couldn't breathe. They admitted her found she had a pulmonary embolism and she started acting disoriented. A UTI was found and she received antibiotics, but was coded as a fall risk and eventually restrained due to her constant battle to get up and walk out. The sitter at the hospital left her unattended and she got up to leave, fell on the floor and sustained a subdural hematoma above her eye. She was in the hospital for over 4 weeks, then went to a rehab facility for another 4 weeks. My sister, who lives on the East Coast of Florida, took them both to her house to continue her rehab. They recently demanded to go home (west coast) to take care of some financial business, taxes, etc. Mom recently fell again, trying to go to the bathroom on her own. She was WALKING BACKWARDS into the bathroom because her walker did not fit through the door. It's just a matter of time until something tragic happens, but they refuse any help. My sister went back and picked them up for appointments they have on the East Coast and frankly, I hope they stay there. They want to fly up to their condo in NJ in August. Their condo is very small, not outfitted with a proper bathtub for them to use but they won't spend any money to replace it with a walk-in shower. I'm afraid one or both of them will die and we have to have them transported back up to NJ. $$$$$

Evermore99 I'm not even part of your family and I am stunned. Best of luck and healing to your dad.

Living 45 minutes away from my grandmother helps with us. We are just waiting for the next disaster to happen. My dad was diagnosed with stage 3 colon cancer and we can't go over to her place anymore to help her out. When we told her that he had cancer and he was going into surgery, her response was that as soon as he was home after surgery, he was going to clean her gutters and do her yard work. Mom and I were flooded with that and said that she would have to either do it herself or she would have to hire someone to do it for her. Needless to say, she had a fit over the phone and hasn't spoken to us since. Could she still be mad? Yes but we think that she is afraid that my parents might ask her for money, even though my parents have savings and other things to get through. My dad's health is much more important than hers. We just continue on with our lives and when the next crisis hits, we will force the hospital force her to do something because we refuse to do anything anymore.