Dad refusing help, so do I just quietly plan for eventual "disaster"?

Ginger, you have some great advice. The note to the EMS about your parents' health is a good one.

My mother and my MIL were very different in how they aged. My mother would ask for help, would allow us to do things for her, wore an emergency alert pendant, used a shower chair in the bath, used her walker.....and even gave up driving on her own. MY MIL is just the opposite. We have "securtiy" cameras that we can monitor for my very stubborn moderate dementia MIL who refuses almost all help. We tried the alert necklace and she would not wear. Have tried shower chair, but she insists on getting in the tub to bathe - I rather suspect she has not bathed, just washed off with a wet cloth for months now as she got stuck in the tub about 5 months ago. May or may not use her walker. My husband is an only and we are her only family, rest are dead. We had to take her car keys and DL away from her as an unsafe driver. We have tried to put in extra grab bars and other safety features as much as she will allow. I have to take her to the grocery store or pick up groceries for her. I take food I have cooked over once or twice a week, but I live 10 minutes away and have retired. I get her frozen meals and help her choose the right things from the store. Like cat food. Or fresh fruit. Or grab and eat deli items.

Make sure all legal papers are in order. You can leave numbers for senior help, for grocery delivery, for services they could use in a place they can find them. That leaves those decisions for them to make, which may make them feel more in control. I think the elderly fear losing control.

Scoping out other options for when that emergency happens sounds like a good plan too. And then, you just have to live your life. There will be that day.

I have had to walk away from what I know will be a train wreck. They don't listen and weave a story they way they want it to be. My parents are a similar age. Opposite health situation. Hoping my mom will truly call 911 instead of trying to help dad up when he falls again.

GM, I read your post & thought Whoa! Hello my sister! Except she is more than 1 hour away (& not ordering groceries as far as I know).

I've accepted what is. (It has taken 5 years or so to get here too).
I have a rough outline of a plan - I wish it was more than that.. but accept I cannot plan for every eventuality.

You have a good contingency plan.

You are ready to seek help (which is key) & will find what you need when the 'crises' does happen.

My only variance to your plan is I have changed my mind from being willing to step in to take on Mother short term if needed in a crises, to not doing so (due to my own limitations).

I hope many people including myself can support you as changes do happen.
Take care, (((hugs))).

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?

You have a well thought out contingency plan. You have tried options to improve and stabilize their life. You have accomplished SO MUCH by being "selfish". If selfishness is keeping their needs as well as maintaining your physical & mental health. Do not second guess your decisions nor discount your value.

The next situation will direct you into the next stage.

It would be smart for you to start making plans now, do your research, visit facilities, talk to people while you wait for the “disaster.” Then, when it does happen you will be somewhat prepared.

Know where all the paperwork is, policies, insurance, etc.

Maybe get your parents on a waiting list for at least independent living, if not assisted living. Then when something happens, you've got that paperwork already done, etc. If dad went to the hospital, she could go to AL. You need to live your life too and shouldn't be planning that you will have to stay there for as long as needed. That's a lot of pressure on you.

Do you have POA for them? If not, dad sounds like he competent to sign the papers.

Every few months, I would revisit the ideas of online ordering of food and a housecleaner. I always told the help that they were not to leave on my mom's say so (she had mild dementia) because I am the one that needed the help. Her rooms needed to be cleaned and I was not going to do it. She needed help with many many things and I could not do it all. So the help was for me. Tell him you are tired of worrying about them and you know it is too much for one person to do.

Good luck

I do not think you are selfish at all, see if there is a social worker at the medical facility your parents go to or find an elder care association, Aging Care can assist you. My mother who is 90 was pretty much independent. Her Alzeheimer's has gotten worse. She is more confused and delusional these days. She also has rheumatoid arthritis. We do not live together because she did want me to live in her house with my pets, she had a caretaker during the day. She recently started falling and is now in a long term care assisted living nursing skilled place. Sadly it took a crisis to get in there. She swore she would die in the house she was born in.
About a month ago she fell in her bedroom, her caretaker could not get in the house and my grand son came to the house to let the caretaker in. My mother had barricaded her front door and had fallen in her bedroom, she had a medic alert pendant but would never wear it. My son and caretaker tried to get her up but my mother refused their help. So it was call 911, off to the hospital and then she got placed in assisted living. She does not have home overnight care so she will have to remain in long term care assisted living. Whatever you do start planning because that day you need a plan may come sooner than you think.

((HUGS))

Please don't become the slave. The more you are there for their needs, the more Dad will expect out of you and the more he will insist that everything is fine since you are filling in the gaps.

Yes they are adults. However, you have to allow them to live as independent adults in order for them to understand the reality of the situation.

From my point of view, if one of them ends up in the hospital, that is the perfect opportunity to get them into an AL or MC unit for good. So as someone mentioned below, start researching where you would like them to go so that if the time comes, you can take them there.

If you don't want to put them into an AL or MC unit, then start researching your caregiving options so that if the time comes, you will know what to expect from outside help and their fee structure.

Try to find options where you are not "hands on".

Once you have a plan in place, your angst will subside....at least a little bit.

My parents did not put their affairs in order for a very long time and frankly now it is too little too late. They are going to outlive their money and I resent they chose not to take any action to better prepare for their final years. Throughout the years my sisters and have been dealing with our parents’ declines they were always suspicious and nasty when we made suggestions about going into assisted living or to get help in or anything else for that matter.

My takeaway from the misery I am living through is to make sure I am not a burden to my daughter if, God forbid, I am unlucky enough to get to 94 with no end in sight.

GingerMay: You cannot live 'on pins and needles' waiting for your parents to have a medical emergency, else your own health suffers and you are good to no one. Your father is a contradiction in stating that he wants help, but then pulling back and refusing it. You have done well so far. Perhaps it is due time for managed care facility living for both.

Hi, Personally, I looked into living arrangements before there was any apparent need. Places will stay in touch with you. It saves some time and angst when everything goes topsy turvy. Contact locationally convenient places. You will learn who allows people in different conditions to still live together, what level of care they offer, what they charge, etc. Separately look at ratings from medicare and google. It is VERY hard to get straight information other than PR stuff about any of them. Also, there are geriatric advisors who vary in competence, energy, and honesty. But they are helpful at times. It is a pain, but does pay off to have done it, when disaster strikes. It does sound like that that is the only way your parents will get more care, from your description. At least, when they go down in flames you will have some fire equipment.

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).

Remember they always have the right to rot. Take care of yourself.

Time to place them into a facility, whether your parents like it or not.

I think when your father says he needs help, he is implying that he wants you to physically help, not arrange for others to help like with the grocery delivery. Often they don't see that the amount of help they require is time consuming and exhausting. So yes you just might have to wait for a real emergency before you can do anything.

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.

Sometimes all you can do is let them fail and then pick up the pieces when they do. Your father is mentally competent so he is entitled to live however he wants. Leave it alone and let him continue as is until he either ends up in the hospital or decides for himself that he needs help. As for your mother, if she has dementia and at some point you notice that she is in jeopardy because your father is not able to care for her then you can start placing calls to APS anonymously and they will come to the house and check on the situation. If your father ends up in the hospital and there is no one to care for your mother they will help get her placed.

I understand how hard it is when they won’t allow anybody to help or put plans in place. My father has moderate Alzheimer’s and he won’t accept help except on his terms. Meaning he screams at me to stop helping until he needs something and then he screams at me to help. It’s exhausting and I simply won’t put up with it. So I mange the finances behind his back without him really knowing and let him continue to live as he is and wait for an event that triggers placement. Not an ideal situation, but for now the only way I can stay sane and continue to live my own life.

Just wanted to thank everyone for replying. I appreciate the helpful insights and practical feedback.

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.

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.

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.

Would Dad be receptive if you pointed out that his stubbornness will likely end in him dying first and leaving your mother with dementia alone? I'd try that tactic.

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.

You are ahead of the game thinking about it. It’s not an if, it is a when. Disaster will certainly strike. One word of advice make sure they have a medical alert system where they wear a device to get help. Dollars to donuts the disaster will begin because one of your parents fell. Mine lived alone up until this year, they are 94 and my mothers fall last year began the downward spiral. Was glad we had our medical alert system.

You have a great attitude. Hang in and good luck. Your parents are lucky to have you in their corner.

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.

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.