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I have been on this helpful and supportive forum for a few years, and so grateful for everyone here. When I first joined, I thought my parents might both be gone in a few years, but no. They are living independently in their home still. They are in their mid-and late-80's. Mom has moderate dementia and mobility issues so she uses a walker. Dad has been plugging along valiantly managing their lives on his own for about 5 years.


Their financial plans, estate, and Will are set. The house and property outside are maintained decently. The inside of the house however is what mom used to maintain, and it is cluttered and dusty. The microwave and refrigerator are a mess. Dad is able to do laundry and get take-out meals. He has told me his is tired, and could use help, but will not accept it. I live one hour away. I have one sibling, their beloved Golden Child, who also lives an hour away but never visits or offers help. I visit to keep an eye on them, and fill gaps if I see needed.


I got parents a membership at their local Senior Center where they could get meals ordered, or participate in activities, but they never did engage in it. I scheduled a home cleaning service and monitored it upon the first service, but dad said he did not like it and never wanted them to return. During the pandemic, dad gave me his credit card to set up an online account for grocery delivery. I continued to order groceries for them on occasion for the last two years because I thought it would be one less thing dad would have to do. Dad recently got a new credit card, and said he does not want that anymore. Last year, dad could not drive due to cataract issues. He cried frequently, was emotional, and seemed overwhelmed. I drove him to doctor appointments and ensured his follow up medical care since my mom can no longer support him with that. He recovered. There was little recognition they thought they needed help from anyone, and definitely little gratitude for my time spent doing anything.


I feel like I am one step away from total disaster with them. In the back of my mind, I just started making my own action plan. I feel like dad may be the first to break. If he has an emergency and has go to ER, I will have to stay with mom for a few days until we know what dad's situation is. My life will be up-ended for a while. If dad requires a longer hospital stay or needs home care, I will have to then find an ALF where they both can stay temporarily or long term.


I understand my parents are adults and they get to make their own decisions about their life. I just feel like dad resents my "help". I feel like if he did accept what I offered, it might ease his burden and perhaps avoid a disaster that could eventually impact me greatly. Maybe that is selfish on my part.


So, I suppose this is all I can do - right? I can plan now, and just step in if the situation occurs? Am I missing any other options?



Thank you.

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If dad has to go to the ER via 911, make sure that there is signage in the home indicating mom has dementia. The best way to do this is to make up a large envelope labelled "INFORMATION FOR 911 EMERGENCY" and place it on the inside of their front door.

Emts will take mom and she will be admitted as a "social admit".

Do not upend your life. Do not stand around waiting for disaster.

If you think dad DOESN'T have dementia, you can explain to him that his lack of planning is not going to end in you rushing to their aid.

Tell dad they will be placed somewhere with no family input if he continues on this foolish path.
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Clairesmum Apr 2023
It is also possible to call the fire department where they live and see if you can register them as 'frail elders' with a notation that Mom has dementia and cannot be left alone. Most computer systems allow that sort of note in the data base, and increases the likelihood that Mom will not get overlooked and that even if Dad sounds reasonable, he will be more likely to be taken to be 'checked', along with Mom.
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That is what my brother and I did with our mother, sat and waited. We tried to get her in AL for 10 years, as she lived in the mountains of NC, alone. She refused. She refused everything we did, hired a housekeeper, she fired two, hired a companion to take her shopping and so on, nope fired her...don't you know they were all stealing from her. One even had the nerve to steal a nutcracker.

Well, she finally had a slight stroke, and became afraid of staying alone at night, she kept calling the EMT's for no reason, well, they started charging her $600 per trip. That ended that, we moved her to Fl, found a nice facility, sold her house.

Moral of the story, she loves it, friends her own age, crafts, activities and she doesn't have to lift a finger, she now says "I wish I had done this years ago".

As for temporary AL there is no way I would consider this. I would find a home that has a step-up program, IL-AL to MC. They will not get better.

Golden child, well that would be my brother, boys are the best don't ya know, we women, we are nothing but servants and care givers, There never will be any thanks or appreciation, they will continue to use you, as long as you allow it to happen.

Sending support your way.
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Ginger,

This is so sad, and yes, given your Dad is still so competent and has a right to his own (bad) decisions, this is all you can do. And you are correct that a disaster is on its way; difficult to predict what it may be.

When I was an RN we OFTEN saw the admission of TWO elders at one time when one broke a hip and the other was not competent to be alone, and there was no one to take this on. So do know that is a possibility when this happens. You do not need to give up your life. When there ARE no children the Social Workers take over and find placement. In WAY over one half the cases the couple never sees the inside of their home again. There is only rehab and placement. Sometimes the death of one spouse and the assessment and placement of the other.

This just can't be predicted. It seems to me you are doing all you can given they are neither able to cooperate with any help offered.
What a terrible worry for you. I would begin twice daily check ins at this point, because there will come a time when you need wellness checks.
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Beatty Apr 2023
My 'disaster toolkit' contains this Note to Self: if one falls, fails, fractures - do not be there in person, do not be the body on the spot left with emergency care caused by lack of planning by others.
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This would be a good time to gather information about ALs, memory care and SNFs. You can start showing parents brochures if you think it might help them realize reality (it probably won't). You could go visit a few.

Based on what you learn, you can decide where you'd want them to be - halfway between you and sibling? Or closer to you?

Start investigating local real estate companies and estate auction houses, since you'll probably want to dispose of things once they're in a facility. Having a plan will make that so much easier when the time comes, and you don't have to tell anyone - spouse, sibling, relatives - that you're scoping it out. That way you don't get in the middle of a firestorm before the inevitable happens with your parents. And believe me, everyone wants to suddenly get into the act in these situations, whether their opinion is wanted or needed.

Congratulations for making your own plan to stay a step ahead. You've already figured out a situation in which a lot of people would still be wringing their hands and sobbing that "I don't know what to do I don't want to make daddy mad I don't want to make mama mad I don't want to take their dog to the pound and I don't want to kick my drug addict (uncle nephew aunt sister) out of their basement!"

You won't necessarily HAVE to stay with mom if dad ends up in the hospital. Find helpers in the area who can do that, explain to them that you might need them on an emergency basis and tell mom at the time that disaster strikes that one of them will be staying with her. Then go home. The last thing you want is your life upended for months while you wait on mom, deal with the hospital and rehabs, and have to be away from your home and the comfort it provides. Your mom or remaining parent will HAVE to do what you say if you're in charge. Or else they can go live with Golden Child.

It is okay to walk away. It is okay to say no. Your parents are working themselves into a hole despite your best efforts. That might have some unfortunate consequences for them, but all the consequences aren't yours to fix.
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velbowpat Apr 2023
Fawnby,
I have found that many people suddenly have an opinion or stake when money is involved.
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My dad (86) refused help also. He made the only caregiver that we could find in their tiny town so mad that she quit with no notice. His friend, who lived nearby, took over...only because we offered to pay him what the caregiver was being paid...out of my dad's funds. Long story...not going there.

Anyway that lasted about 3 months, and then my dad's dementia took a turn for the worse and was calling the poor guy literally 30 times a day, so he finally could not take it any more. He was not safe on his own, his drivers license was months gone, though he still drove anyhow, but now was getting lost or having "car problems" (I think he was flooding the car all the time, and leaving lights on so he battery would drain). He didn't even recognize the inside of his own house or his friend one day. Adult protective services told us they couldn't do anything.

He finally consented to be taken to an adult family home (they actually owned 25 houses that also offered lock-down memory care in one of them). I promised to take care of his dog, and I drove to his place (3 1/2 hours one way) with the lady that owned the house he was going to. It was a sad moment when he asked me as we were leaving his house if he had to go, and I told him there was literally no one to take care of him in the little town he lived in (in a gated community no less), and with a hospital that just had PAs and had to fly everyone out to a hospital that actually had doctors that actually knew what they were doing when there were real medical issues.

The adult family home ended up being less than 15 minutes from me and he really liked it at first (had a nice patio with chairs on it), until his sundowning became too bad to where they did have to move him to one of their lockdown houses which luckily was only 4 miles from me, so I was able to visit him several times a week and even bring his dog to visit.

The whole thing was very sad. I wish it didn't have to end the way it did, but I knew that even if I quit my job I couldn't give him the care he needed. He really needed 24 hour care at that point, even though he was very ambulatory. Sadly he was extremely stubborn, and the dementia had reduced him to around a 9 year old level (and sometimes much less).

Going back to the previous year, taking care of him became too much for his wife (my step-mother, 78) of 50 years. She was 10 years younger than him, but ended up passing away 10 months before he did (which is when we started going through everything I wrote above). Prior to her death, I think they kept each other going, and he was able to show-time really well to hide his dementia from my sister (who lived 16 hours from them) and I (3 1/2 hours away). If we had lived closer, maybe we would have picked up on the issues sooner, but he kept telling me not to come visit him because "our place is a mess...we're doing remodeling". Not so much...that is another super long story I won't go in to here.

I will say that my sister and I tried for years to get them to sell and move closer to one of us, but it all fell on deaf ears. They had sold the house they lived in (an hour and a half from me) and bought in to two trailer parks (winter in Arizona and summer in Washington) about 20 years ago, so it's not like they had raised their family there. They finally did not have the mental or physical where-with-all to make the trip back and forth, so just stayed at their Washington place, until the end.

You can only do so much. Try not to be too hard on yourself. Set boundaries, and if it's at all possible try to get in communication with your sibling to discuss what you can and can't do to support them. I don't know how I could have done it without my half-sister's help. She was able to calm my dad down on the phone, and talk sense into him many times even though she didn't live anywhere nearby. I was the eldest, but for some reason we butted heads more (I think because I got my stubbornness from him....LOL).
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Ask dad what he wants you do say or do when he says "I need help"
Often the family does have to take a "wait and see what happens" approach.
I am wondering if dad also does have some cognitive impairment himself. Although it is typical for a spouse/caregiver to not want help because:
"no one can do things the way I want them done" or
"it will take me so long to explain what I want done that it is faster if I do it myself" or
"If I get help it will make me look like I can't manage"
"I know where things are now and if someone moves things I won't know where anything is"
And on and on and on....
Make sure that there is information for paramedics that Mom has dementia and if they take dad to the hospital she also needs to be transported.
Once you get tot he hospital make it clear that neither can be discharged to home as it is not safe for them without help.
It is possible that if the doctor and other "medical professionals" tell dad that he has to have help come in he might accept that.
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As others have said, I'm sorry you're in this situation, and yes, I think you've done most of what you can. Sadly, many people do this - they or their families refuse help, placement, etc. until something dire happens and they just absolutely have no choice. If that's where your dad is on this, then just try to plan for that disaster as you can.

And as others have said, you do not HAVE to jump or give up your life, even temporarily, when that happens. If they didn't have children, EMT/hospital/social services would still make sure they are placed safely. It might not be where they would want to end up, but frankly, if someone wants control over that, they need to do the work ahead of time. If your dad refuses to plan, then he is giving up that say.

On the practical side, build up your disaster toolkit now: phone numbers of places that you can contact for help, possible places they can be placed for care, etc. Make sure you know where all the legal documents are, or that you have digital/physical copies of them. And keep reminding your dad that helpers like home care, meals, etc. are available. Perhaps at some point he will decide they are worth it. In the meantime, try to let go of the little things. If their home becomes unsafe, that's a different story, but until then, dust is just dust, clutter is just clutter. Also, when you have the energy, when he refuses some sort of help, see if you can figure out why he's doing it. Does he not want the cleaners in because he doesn't like them in their space? Or is it because they move things? Or because of something specific they do? Then the conversation can turn to "ok, but what if we told them specifically to JUST clean X, Y, Z, and leave everything else alone?" Sometimes that helps.

Good luck.
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Beatty Apr 2023
Many excellent points.
Adding *disaster toolkit* to my vocab now.
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Re *selfish* as GA mentioned:
How I dislike that word.

I hated how it was used to control us as children.. reinforcing the idea that other's opinions of our behavior was the highest priority, to ignore our needs to maintain 'a good impression'. The social fear of being judged as 'bad parents' for bringing up spoiled selfish children 🤔

Some people scoff at & look upon notions of 'self-care' as selfish. Maybe some ARE givers & give freely to others. At the extreme end are the Martyrs (neglecting themselves).

Others use it for their own use. I met one just yesterday.. "My daughter should put others before her. She should put ME first. I'm her Mother. She shouldn't go to her job. I want her here". Twisted, right?
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Isn't there also another sibling who is in real estate? How many sibs do you have?

You wrote in another post that you have always been the scapegoat. Your parents have threatened to disinherit you.

What kind of inheritance are you looking at? If it's not worth it to you, why have anything to do with them at all? Let the Golden Child manage things for them.
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GingerMay Apr 2023
Thank you, CTTTN55. I have one sibling. She is not in real estate but did own a home care company. Oh, the irony that she cannot arrange those services for her parents now. Also, yes, I am the family scapegoat. For three years I have been Very Low Contact with parents and No Contact with sibling. I was NC with my parents too for a bit, but reluctantly went to low contact. My boundary is that I stop by parent's house every 8 weeks for no longer than a half-hour. Also, you are indeed accurate that dad did send me an email around one year ago where he wrote he did not like my attitude because I acted like I no longer wanted to be part of the family. He stated unless I changed, he would have his lawyer 'legally separate me from the family'. I know he meant 'disinherit'. They do not have much. I waited and replied after a couple weeks and told him to go ahead and do it. He just claimed he did not mean it, and was drunk at the time. Wow, when I write it all out it seems sort of pitiful. I guess I just found some more clarity.
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Just wanted to thank everyone for replying. I appreciate the helpful insights and practical feedback.
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