How to navigate parents staying in their own home? They both made it clear that they want to stay in their home.

Can your parents move closer to you? My parents moved here because I was often going on a plane to help out, since they were in another state. They intially moved because my dad's health (COPD), was getting worse, but about 9 years after he died, my mom developed Alzheimer's, and she moved in with us, (not easy, but more doable than trying to be a long distance caregiver). When I thought about getting some help here, I thought I'd tell my mom that the woman was a nursing student, and she was doing research on women who played golf (the way she did), women who were accountants, (since she was), etc. My mom too would have been resistant to "help." I even wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." If your parents are resistant to moving, you could tout all the nice things about your area. Best of luck.

There is a list called ADL ( activities of daily living). Its a good indicator of what your parents should be able to do while living at home.

So glad you have a caregiver starting. We started my mom and aunt at first with a part time morning sitter and a part tine evening one.

In the meantime do as much online as you can, order home delivery meds, groceries, supplies. Pay their bills online. Fill their pill boxes several weeks out.

Call Elder Care in your area to schedule an assessment & see if they quality for help.

They need a life alert of some kind and if you can install a monitoring camera.

Same for us. I visited 3 times a week. Spent the night some. Asked the next-door neighbor to look in.
My Dad said he didn't need any help. I hired someone to come in and drink coffee with him and maybe do some light cleaning. At least that's what I told my dad. I told him she was a friend of mine. As far as the home care people...that's another thing, but they deal with all kinds of situations and can handle it. You tell them what you told us.
At some point, when one or both begin to fall, drive recklessly, or something that can harm them, you can cross that bridge of more care. We managed to keep our Dad in his home until he died, but I already had a sweet lady from church helping (I paid her), the doctors were aware etc... until we had to call hospice in. Once you have to call hospice, you and / or siblings will have to step in and take some time off to be there. Hopefully, that's a long way off.

Let them stay in their home AS LONG AS there is help coming in. Tell them gently but firmly they must have OUTSIDE help to do this - which you will oversee & help with. Ongoing decline has to be monitored: perhaps they can stay there until one of them goes. Do some forward thinking about that; at the same time cross that bridge when you come to it! You must not give up your life, to give
some aid & care to those you love!

The recipients of help cannot dictate what they want. The care givers should decide what is best for them.

Staying in your home means being independent enough to do what needs to be done from personal hygiene to yard work. My father's need for control stalled many a plan that would've helped both of my parents. Your parents don't see themselves as needing that much help, although they maybe miserable. In my case neither of my parents thought a bathtub stacked high with feces smeared clothing was a problem. The stack was 4 feet high. You and your sister need to have some serious conversations with your parents and with each other about what needs to be done and what you'll be willing to do even on a temporary basis. Contact that private home helper and get some references from this website. Perhaps contact an eldercare attorney.

Dealing with it right now. Only child and relative who happens to live close (was planning on moving).

My parents have some money and planning in place....except what the plan was when they were unable to care for their home 1300 sqft..plus equal basement and 3 acres of lawn mowing and 100 ft of flower beds. Oh and no longer being able to drive from their rural town 50 miles round trip to doctors etc. Small details. They were aware that I was divorcing TWO years prior to the event and I would need to work to support myself.

I guess their plan was me although they never even bothered to mention it. Dad passed four years ago and mom, the sicker of the two, cannot drive and (of course) can't mow the lawn. We are managing but only because I have to set aside my plans completely to make it work.

If they've made it clear that they are staying...then they need to have a clear plan that they can articulate to do this. "We have money" is not adequate because you cannot hire everything done unless you have ALOT of money. You and your sister then need to draw up your boundaries and explain the limits of your abilities. If they are unable at that point to "maintain", you cannot rescue and they will have to do something else.

For instance, my hard boundary is moving someone who cannot adequate shower, dress, get out of bed, change diapers etc. I physically cannot do these things, period. I can clean, assist with meals, shop, drive, mow and even change the oil in the tractor....but I will not do that type of physical care. My mother and I are having the conversation right now....she is home recovering from a broken hip at 85, If she cannot get independent to a certain level...she will be doing something else. I cannot fill in every single gap.

Its presumptuous for parents to assume children are able to just step in to that level....and without asking or discussing.

Take control with love and kindness, but firmly.

My dad was the healthy one, and he was Mom's caregiver. He was so tired and burned out and sad that his world had become so small, but he was devoted to my mother and determined to fulfill his vows. I helped out weekly, and he and I would quietly plan road trips we'd take "later" without saying that meant after Mom was gone. I was going to widen his world again.

He fulfilled his vow not only "in sickness and in health," but also "until death do us part," but sadly, it was his death that parted them. He was perfectly fine, then he was diagnosed with cancer and gone in the span of six weeks. I was left with having to move my mother to a nursing home three days after my dad's funeral. She lived another 2 1/2 years.

Please help your dad by taking control or at least backing him up and guiding him. Mom is out of the decisionmaking loop now.

If you have your parents' legal authority to make the decisions then for their sake you should take control and put your foot down.
Let me tell you there has never been an elderly person who didn't make it clear that they're staying in their home as they age. So you're not alone. No elder goes willingly into a care facility and most won't even discuss with their family the possibility that they might have to go into one. That's when you just do what has to be done.
If your father still has his wits about him then deal with him, not your mother with dementia. Let him know that he cannot allow her to make decisions anymore because she's incompetent with dementia, and that if he doesn't take some kind of control in the home you and your sister will have her put into facility care. Your father needs to know what things like APS are. He has to understand that if there's refusal to accept outside homecare help the situation at home will get bad. Then social workers and nurses come and they both get put into a care facility whether they agree to it or not.
I've seen this happen many times in all the years I worked elderly homecare. Seniors who were coping well enough in their homes and had both homecare aides and family help who got "placed" by court order on the recommendation of some over-zealous social worker or visiting nurse who wants that company bonus, and gets it when they can place someone. I've seen how a home safety assessment gets done. If there's a step somewhere without a railing or a narrow doorway, the house is deemed unsafe for the elder and they get placed. Then their house and assets get liquidated. Then Medicaid gets the bill. Yes, it's a racket. The nursing home, memory care, AL, and even homecare is such a rich and powerful industry that they pretty much make their own laws. This is why seniors before they're elderly really need to understand that being "stubborn" about not accepting help, and families who obey incompetent seniors to prevent fights will result in exactly what I'm talking about.
Please show this post to your father. The person writing it has been in senior homecare for almost 25 years and have seen just this happen to many elderly individuals and couples alike. He can't let mom with dementia decide anything anymore.

There is no right or wrong, or easy, way to proceed. We went through a decade long stressful elder care situation with both of my in-laws, who were very resistant to help in any form unless it came well disguised from a family member. Several crises occurred resulting first in them moving to "independent" living that actually had built in help up to 90 minutes a day. Then after more crises, we added 24/7 caregiver agency which was 15-16K a month on top of their IL rent/fees (this was 8 years ago -we are currently looking at 24-30K a month). After 6 weeks they refused the 24/7 help and literally 2 hours after the final caregiver shift, they both fell and pulled a bookcase over on top of themselves. When I received a call at 2 a.m. on a holiday that they were both in an ambulance on the way to the hospital, I thought it was a family member pranking me (in retrospect, LOL)! After that, back to 24/7 fees until they could be in a double occupancy room at a nursing home on the other side of town. MIL died after 2 1/2 years in NH and FIL lived a total of 5 years in NH. None of the family would have predicted they would live into their late 80's, mid 90's! FIL passed about 2 months before he'd have to go on medicaid. Could your parents afford skilled care in home if it came to that, and for how long? Who will provide breaks for the home helper, and consider that your parents will not always be capable of monitoring the trustworthiness of the helper(s). What happens if the home help has an emergency and there is suddenly no coverage?

At the beginning of all this drama, their family physician advised to move them into a living situation that could provide all levels of care all the way to the end of life. And by end of life, the situation should provide all the medications and medical care needed for the worst situations. Many care facilities who advertise "end of life care" are not accredited to administer certain types of drugs, especially psychoactive drugs. We wish we had followed the physician's advice from the beginning because each change in their care level, and especially the 2 moves across town, was extremely stressful.
I wish I could say we are wiser as we are currently trying to care for my own 91 year old dad who has progressing dementia (he lives alone in a house, with some help, 30 minutes away). But, we are fumbling our way along, living from crisis to crisis once again. I am constantly stressed. So if I could go back and advise myself 6 years ago when we moved my dad to be near by, I'd say "Find a nice living situation that can provide step wise increases in care all the way to the end...". And then, if I'd only listen to myself!

Just registering my "ditto" to not having your mom drive the decisions and working on your dad to help him see that the romanticized dream of "aging in place" will be mostly you and aids orbiting around the 2 of them, and the loneliness and boredom and stress that comes with being cloistered in your own home.

Take your dad to visit some nice places (without your mom). His generation remembers some very nasty NHs so he needs to see the reality of places that have activities, events, transportation and distractions (for your mom) so he can picture himself regaining some of his former independence from her.

I think the argument that circumstances will eventually dictate where they go and when is a rational one, and it may help to have him read some of the posts on this forum by adult children who are struggling to provide realistic care for their resistant parents. The caregiving arrangement must work for both parties: the receivers AND the givers, otherwise it is not working. It cannot be onerous to you, ever, or you will burnout (or even become ill from the stress) and then where will that leave your parents? He needs help seeing that you're not giving him the bum's rush into a warehouse for old people but giving him power in choices of his own making and timing.

Don't be discouraged if he brushes off your first or even second attempt to broach this subject. He needs to bring his thinking around and it will be slow after a lifetime of entertaining a faulty vision of how he thought it would go.

Also, to stay in their home they will need scads of money -- when even 1 person needs 24/7 care (and some of it may be medical) it will exceed the cost of AL, MC or LTC. Plus, hiring aids privately makes them an employer in the eyes of the IRS (in many states so check theirs) AND will require a lot of your time managing schedules, even if you work through an agency.

I think you should also be honest about just how much time you wish to devote to keeping them in their home, as it can be substantial -- especially 2 people.

Lots to ponder. I think having him read some of the posts on this forum will be potent, as he can't deny the testimony of another, if he is a reasonable man (and he's getting worn out by your mom). I bet he never envisioned "losing" his wife to dementia for many years, either. I wish you much success in moving him towards a workable solution for everyone!

It becomes what they need not what they want. If staying in their home means family now has to be responsible to mow the lawn, do upkeep on the house, clean, cook, etc..then they are no longer independent. If family was not there, they could not live on their own. So staying in their home is not doable.

What parents need is very different from what they want. Go with what they need.

My “boss” was herself the family caregiver, simultaneously serving as the president of a local bank, volunteering several hours a week, retiring, then focusing on dressing and looking like a model…..

We saw minor bumps and bangs on her cherished car, and I convinced myself that it wasn’t serious, but quite soon after we began receiving calls asking for “little”helps (ran out of coffee, 17 cans of string beans, can’t find her dentist’s office in the small town where she’d lived and worked her whole life, then the falls and bumps to herself, and ultimately, the fear of being by herself in the big old family home). But “You both have your own families and responsibilities and I don’t want you being involved in anything more because of me…..” And of course, we already were.

So we tried what was referred to as “a week in assisted living”, and learned, almost immediately upon her entry there, that her confusion was at least in the moderate range of dementia. So her independent days were numbered, even before we picked up on any signs…..

I was a major mover for the assisted living trial, and I felt like a guilty assassin as the one who stole her freedom, her independence, her life. In a matter of months, I realized that I’d been her hero.

Until the pandemic, her life there was a place of comfort and peace. She then suffered two separate COVID infections, and absent from the only family she had surviving, AND the expected ravages of her age as well, she’s now in hospice care.

I’ve made peace with my sad role in this, and you will have to do the same.

SAFETY for both of your parents has to be considered first, then comfort and consistency (impossible during COVID). Hard hard choices, and as Barb has so concisely stated, unless you assume responsibility for the choices, some else ultimately will.

LMR, yes, I've been there (with Mom) and witness to several aunts and uncles.

If mom has dementia, she should not be driving the bus.

Can you talk to Dad separately and get agreement that something needs to change? Because chances are good that HE will burn out, fall ill or die before mom without help in the home or a change in living arrangements.

What would happen if you and dad found a wonderful AL and planned a move, not telling her about it beforehand?

What happens when help comes in FOR DAD?

Sadly, if she is stubbornly resistant to change, you do have to wait for "the event" which will take away their choices.

Explained that way to dad ("you have have your choice of places now, or the decision will be made for you, by strangers in a hospital"), would he be empowered to take action?

I would leave mom out of the conversation entirely. You can't reason with dementia.

In my experience, you can sometimes "put your foot down" IF your parent trusts that you have their best interests at heart. Thank God, my mom trusted us enough that when we told her it was time to move, she didn't put up (much) of a fuss. Not so with Aunts and Uncles. Non-demented parent died first in both cases. Very sad.