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agedbook Asked June 2017

How do you step back and wait for the catastrophe?

My parents live in a four story home. Actually they live in the chilly, dark dungeon of a basement in a four story home because my father cannot walk up stairs. There are stairs between the basement and garage and the bathroom shower has a curb. He has PD, extremely poor balance, and cannot walk unassisted. He refuses to use a walker, rollator or wheelchair. They have had doctors, therapists, social workers, friends and family tell them that the home is a death trap, but they will not move. My mother thinks he will get better and my father just goes along with it. My mother who has hoarding tendencies has filled the upper stories with piles of papers and doodads and junk she still buys by the carload. He has had many falls, bruises, cuts, broken ribs, and black eyes but acts like it was nothing and my mother refuses to acknowledge that he has fallen more than once or twice. Always she has some ridiculous excuse to explain it away. They should be in independent or assisted living, but insist they are too healthy. I tried taking them house hunting for a more suitable home, with a first-floor master bed, kitchen and garage, but after weeks of that realized they were just humoring me and have no intention of moving. I just have to wait for something so awful to happen that they are forced to move, like to the hospital and then to a nursing home. It is hard to accept there is nothing I can do. When I talk to relatives I feel like it is my fault that they will not move. How do I find peace with their decision to live this way? It is like my parents want the whole family to watch while they are tied to a train track with the train just around the corner, whistling.

Windyridge Jun 2017
Bok, you have described my situation with my folks also. We have dementia in dad and very limited mobility with mom, they refuse to move or have any help, even meals on wheels.

I've been watching this slow motion train wreck for years, waiting for the crisis/disaster that forces the issue. And I have been working barbs angle as well, trying to explain that it would be so much better if they made some choices now instead of the county doing god knows what.

No luck with that either. About 6 years ago I became the last surviving kid and was freaked out for about 4 years trying to get these guys to do anything that made sense.

I still worry. Something bad is going to happen but it's not my fault. And I don't lose much sleep anymore. Your parents and mine are in that no mans land of legal competency but practical incompetence. My Dad is refusing cataract surgery and will lose his sight. Nothing I can do.

Ya gotta grow a think skin and just ride it out. There is no easy solution for me, you and thousands of other worried caregivers. Good luck.

freqflyer Jun 2017
bokbokbok, I had to wait for the catastrophe because my parents [in their 90's] refused to move or have a part-time caregiver, more so my Mom. Any time the telephone rang and it was their Caller ID, I had visions that someone had tumbled head first down the stairs. The stress was overwhelming.

One time I told my Dad a therapeutic fib hoping to get his attention. I told him if something happens to either him or Mom, I could be arrested for not taking care of them. I thought that would be an eye opener. Nope. My Dad said "I will hire a good lawyer".... [sigh].

Where's my helmet !!  [a helmet to wear while banging our heads against the wall]

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BarbBrooklyn Jun 2017
Some people, to quote my very intelligent mom, are their own worst enemies. It's a phrase you should remember and quote to folks who tell you that you should "do something".

You can call APS and the local Area Agency on aging. They can assess and make recommendations, but they can't force help upon folks who don't want it.

If you're parents are competent, they get to make their own choices.

Something I'm told sometimes works is

" Mom, Dad, either you play ball with me to arrange care here at home or, if you wont, I'm going to have to walk away and report all this to the local authority. They may well come in and take guardianship of you, send you to a facility far away from here so, you can have strangers making decisions about your care, or you can have me. It's your choice ".

It's a tough choice to make. I'm sorry that you're dealing with this.

CTTN55 Jun 2017
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.

freqflyer Jun 2017
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.

blannie Jun 2017
I'm also sorry you have to go through this. Many of us have had to go through something similar to varying degrees of impending catastrophe. If your parents are competent, they get to decide how they want to live, however difficult that makes it for bystanders who care about them. You just have to hope that the coming catastrophe isn't too dire.

Depending on how hoarded the house is, authorities might give them some ultimatums about cleaning it up, but that's a pretty serious way to go that could result in them being evicted if it's unfit to live in.

Do you do a lot for them? If so, you could consider stopping that help to force them to consider moving, but again, that's a hardball way to go.

With my mom, her impending catastrophe was her inability to manage her medications. She was already living in an independent living facility and was more and more forgetful. I had to wait until she wound up getting clots in her foot because she forgot her Coumadin (blood thinner) for 3 days. We wound up in the ER and then to a vascular surgeon. At that point (I was doing a LOT for her), I said that was it, that I was getting in help. She knew I'd had it and didn't fight me any more. she turned out to love the folks who came in to give her the meds 2X a day - go figure. But until she wound up in the ER, she was stubborn, stubborn, stubborn.

My heart goes out to you! I know of no magic words to get your folks to comply. Come here to vent - we get the frustration you're experiencing.

Tattoochick Jun 2017
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.

Evermore99 Jun 2017
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.

AlsoADaughter Jun 2017
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!!

Sunnygirl1 Jun 2017
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.

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