I don’t know what to do about my folks (super long)

[Ginevra]

Bear with me; this could get jumbled. 
I don’t know what I *should* or *must* do where my parents are concerned. The tricky factors are:

1) disabling disease

2) lack of financial resources 

3) the state of their current resources

My mom has Parkinson’s, metastatic breast cancer and severely deteriorated dental health. My dad is in better shape and “only” has some heart troubles and diabetes. 
 

Their house is dilapidated and filled with stuff. (In recent history, one sibling did un-hoard a lot of stuff but they still have emotional attachments to things well beyond what is merited.) Also, my dh has done work there because a lot of the infrastructure stuff is literally falling apart. So he had run plumbing and done stuff there but it is almost at tear-down level and we can’t rebuild their house. 

A couple years ago (pre-pandemic), they almost bought a house very close to my sister’s house. I would have liked this because of the location near a sibling and they could just sell their home and be out of that problem, but my sister said the way this went down was super wacky and my folks have almost no resources for closing costs and movers. And they were shocked at the thought of moving in, say, a month, and they have, as I said, a lot of excess stuff. Sister also reports that they have no concept of how the reduced space really translates for getting rid of stuff. 
 

My mom and dad also play a tit-for-tat game with each other like, “Well I’ll get rid of my fabrics and crafts when he gets rid of his three thousand books.” 
 

My home *could* be renovated in such a manner that one or both could live with us. I am not opposed to this and have considered converting part of this house before. However, we would still have the issue that they need to get rid of at least 80% of their stuff, which would only be harder to make them do if they were not forced to sell their house. I can easily envision their house just becoming the storage house until they die. 
 

Their income is: a small pension from the railroad job my dad was in for thirty years and SS. The only asset they really have is their house, though that is not saying much.
 

My sister and I were talking through scenarios and she pointed out that if my dad died first, my mom would have to immediately move in with *someone*. She could not stay in that house alone as disabled as she is. Even now, that house is terrible for them even as a pair; I do not think it is healthy and it for sure is not sanitary. 
 

Planner that I am, I would prefer to have a set up in place that could go into immediate action. Actually, if I had known they would have bought that house near my sister except for being short of resources, I would have legit *given them* money for closing costs and moving. It would have been cheaper than adding a handicapped bathroom and renovating my own home. And they would still be able to keep more of their stuff by moving to a house than they will if they have to move in with me. But now that ship has sailed because the market has increased way beyond their ability to buy. Even renovating is something I don’t want to do in this market. But if one of them dies, it will force the issue and the remaining parent would immediately have to do something. 
 

One thing that would be good if they actually lived with me (or my sister) is nutrition/food. My mom’s dental health is so bad I don’t think she can eat many things. Her diet is very poor and my sister says she pretty much just eats sweets. (Like donuts or easy things to eat.) Also things like laundry would be much better if they lived here; I would happily do their laundry. 
 

Part of what makes this difficult is that my parents are avoiders who brush off concerns instead of solving them or braining through them. They get overwhelmed by not having a solution and they “rely” on their religious beliefs to avoid solving problems. “Oh, I just believe God will make a way.” That kind of thing. 
 

I do have another sister whose house is actually already feasible for them to move in; she had that in mind when she bought the house, however this sister and my parents are barely speaking because my parents have such an issue with my trans nephew. They cannot accept it and I think cannot even *be around* my nephew. (They continually beg off occasions where we are all there, like yesterday’s TG brunch at my sister’s.) I think this is something they also think they will just pray and it will be magically rectified and then they can be around this kiddo again. 
 

Ok. Sorry for all the rambling; it’s not that I expect anyone here can fix this any better than what I and my sisters already see as the options. Oh, one more thing: when my parents were trying to move, it was a “secret” and only the one sister was allowed to know the “secret”. I learned about it because the real estate agent happens to be a very good friend of mine, so she said something about it before she realized it was a “secret”; once she realized it was a secret, she (the agent) asked me not to tell my parents I knew. So at the time I didn’t have any influence over the house shopping, which is a pity because I would have gone to major lengths to make that happen as it seems like the best option. (But it’s not an option any more because that same house would cost probably $150,000 more now.) 

If you read all this, thank you. I am up for solutions if anyone has one or BTDT scenarios if anyone wants to share. Mostly I just needed to dump my cache because I was up hours early ruminating about this. Hugs are fine, too. 

[Eos]

(((Hugs))) to you, @Quill What a tough row to hoe.

 

[Innisfree]

Is their present home equipped for living on one level? And, what do they want to do? Do they see the same problems you see?

I've btdt, not exactly, but close. Two story house, no first floor bathroom, hoarding levels of stuff, elderly and increasingly infirm parents. In our case, one wanted to get rid of the junk and move, the other was highly resistant.

We forced the move. It was necessary for health reasons, but it was very hard, at first because it was just a ton of work, but long term because the resistance and unhappiness didn't go away. So, I'd listen closely to what your folks actually want. You may still have to move them, but think about possible emotional outcomes.

Many hugs. 

[Guest]

Their house is one level, except the laundry is in the basement. My dad hangs the laundry around the basement to dry, which is not a good solution because there is mold and humidity problems down there as it is. 
 

They did want to move a few years ago but they are very resistant to getting rid of stuff and they are unrealistic about the abilities of non-professional movers to move their stuff. (IOW, they would think it is crazy to pay someone many hundreds of dollars to move things; sure we kids could do that for free?) 

Thank you for reminding me that hoarding has psychological roots and the stuff going away does not remove the psychological issues. (I mean that; I really am thanking you but it reads like I’m being sarcastic! Not sarcastic, really, thank you for that reminder.) 

[Katy]

I think what often happens in these situations is one person will have a health crisis and be hospitalized. If they survive they go to a nursing home for rehab rather than home, and the either spouse ends up moving in. You bring less than you would to a college dorm; basically clothes, a few personal items like a framed photo & an album, a few books, maybe a favorite recliner. 

The rest is often handled by an estate sale company. They’ll throw out the junk, give you important papers, sell everything and give the family 50%, donate the rest, and leave the house in what’s called “broom swept” condition where it is ready for sale but still probably needs a good scrubbing.  The house will be sold “as is” and the money will fund nursing home care until it runs out.  Medicare/medicaid  pays for the rest. 

Edited November 28, 2021 by Katy

[lauraw4321]

I would start with trying to get them qualified for Medicaid and talking with an attorney about Medicaid planning. Medicare does not pay for long term care, but Medicaid does. 

[Slache]

You need to have a meeting with them and truly decide where they are going and when. This post is all speculating, figure it out.

After you do that I would create an action plan that involves:

1. Preparing new home.

2. Moving as much of their stuff into storage as possible.

3. Moving them and their bare necessities into the new location.

4. Selling the house.

[Slache]

5 minutes ago, Katy said:

I think what often happens in these situations is one person will have a health crisis and be hospitalized. If they survive they go to a nursing home for rehab rather than home, and the either spouse ends up moving in. You bring less than you would to a college dorm; basically clothes, a few personal items like a framed photo & an album, a few books, maybe a favorite recliner. 

Tell them this. "This is what is going to happen to you if we don't figure this out."

[PeterPan]

I'm not an expert, but from my few experiences with my dad and inlaws and it seems like *problem solving* goes down dramatically before the point where we actually think oh they're not capable of making decisions. You're probably see this. 

It doesn't sound like a house on their own is their next logical placement, and you have to be careful about gifting them assets at this point anyway because of medicare.

I agree that if you are unable to find a preferred move that they will stay and the move will be precipitous. This means it would help if you could start decluttering the house now. I've done it with two houses now, so I know it's hard, sigh. 

About the 3,000 books, just know it's possible the thrift store will not take them. You're looking at dumpsters. 

 

[Guest]

7 minutes ago, PeterPan said:

I'm not an expert, but from my few experiences with my dad and inlaws and it seems like *problem solving* goes down dramatically before the point where we actually think oh they're not capable of making decisions. You're probably see this. 

It doesn't sound like a house on their own is their next logical placement, and you have to be careful about gifting them assets at this point anyway because of medicare.

I agree that if you are unable to find a preferred move that they will stay and the move will be precipitous. This means it would help if you could start decluttering the house now. I've done it with two houses now, so I know it's hard, sigh. 

About the 3,000 books, just know it's possible the thrift store will not take them. You're looking at dumpsters. 

 

I know the last paragraph for sure. I’m actually facing something like that for my many homeschooling books which are in much better condition and more recent than most of my dad’s books. Books have almost no value at all now. 

[Guest]

22 minutes ago, Slache said:

Tell them this. "This is what is going to happen to you if we don't figure this out."

My sister has said something like this but it does no motivate them. They just ignore reality. 

[Starr]

In my experience it's not possible to have a conversation that amounts to anything. They live like they are living until the health crisis changes things. It's just too much to process. I've seen it with my family, friends families, and church families. If you are able and want to have one or both of them live with you having your house ready would be helpful. On the other hand you might put the money into it and they never live there. It's beyond frustrating. I send you all the hugs and sympathy. 

[Ottakee]

Yes to seeing if they qualify for Medicaid.  They might also qualify for free is stamps.   Would senior meals on wheels be an option?  If they have a senior center in their area, maybe you could make an appointment to talk with the social worker there who will know the resources in their community.

[Slache]

4 minutes ago, Quill said:

My sister has said something like this but it does no motivate them. They just ignore reality. 

I'm sorry. I was there frequently with my MIL and eventually gave up.

[Farrar]

The cases I've seen where older people were transitioned out of their homes somewhat against their will all involved a true unity of adult children/supporting family and community with a plan. Like, with my grandmother, when her two adult children and all her adult grandchildren just said, no, sorry, you're not going back to that house, you're moving in here, we're doing it this way, then she was backed into a corner. She couldn't drive herself anywhere else at that point. She was stuck with the only option she was presented with. And while there was some resentment, she also just... went. Times when I've seen adult siblings bicker over solutions or go in and try to be really collaborative with the elderly parent when it's really past the point of having lots of options - those are times I've seen it fail and the elderly person ends up having deteriorating living conditions and/or dying at home in way that might have been preventable.

I don't know what your solution is. It sounds like you're past the collaborative make a long term plan point. They're already at the deteriorated living conditions and lack of safety point. But you and your siblings may not be able to easily solve this. And your mother's health makes it even harder. I agree that you need a plan though. 

[marbel]

I'm sorry, Quill. No advice, just hugs and commiseration. We are headed that way with my in-laws, who live 750 miles away in an overstuffed house in a small run-down town with minimal services. I just figure there's going to be a crisis and we will all muddle through it somehow. That is not the way I'd like it to go down, but it seems inevitable. Some parents don't want to feel 'bossed around' by their children, even when it seems obvious they need help.

[Selkie]

1 hour ago, Quill said:

I do have another sister whose house is actually already feasible for them to move in; she had that in mind when she bought the house, however this sister and my parents are barely speaking because my parents have such an issue with my trans nephew. They cannot accept it and I think cannot even *be around* my nephew. (They continually beg off occasions where we are all there, like yesterday’s TG brunch at my sister’s.) I think this is something they also think they will just pray and it will be magically rectified and then they can be around this kiddo again. 

Would it damage your relationship with your sister if your parents moved in with you? I can see how she and her family would want nothing to do with them, so it could mean the relationship between the two of you would become very strained if your parents are living in your house. 

[Bambam]

I have not been in this situation, but reading through it, it sounds like moving them to a new location right now would be difficult.
So, I'd put some alternative plans into action:
1. I'd start researching the local rehab and nursing homes so if/when something happens, I'd have a good idea where they should go and where they should not go (of course, that probably also depends upon availability, but still)
2. I'd wonder if we could start moving some of their stuff to 'storage' to make more room in the house so it is easier for them to move around. This could be done in stages. Now depending upon what the children want to do, 'storage' could be a storage location or a dumpster. Of course, they could result in problems later (aka, Dad wants his special book on X) 
3. Are there any laundry services in town that could pick up/deliver? If so, a subscription (Is that a thing?) to that for several months would be a lovely Christmas present. If not, maybe you and your siblings could take turns picking up their laundry, doing it at home, and returning it? 
4. Re meals - I'd check into Meals on Wheels or any other service like that in their area. That would help a great deal.
5. I would contact any local elder assistance services in town to see what they suggest. 
6. I might contact the local hospice organizations, explain the house situation to them, and ask if hospice has any rules about that. Because if someone is in bad shape and put on hospice, they come to your home and set up things there. It sounds like that might not be feasible? I don't know a lot about this, but I'd check it out just to have that base covered.  Although if they got put on hospice, that might be a convenient time to move them? But it sounds like sister that they have problems with would be the best location (and in which case, they would have to tough it - better with family, IMHO)
7. Also - re the estate sale companies, check them out. The ones in our area won't do really packed/bad smelling/hoarder houses. The ones a relative contacted also have a minimum amount of money they get out of the sale - so it is at least $4000 or XX% of the proceeds.  So for that relative, there were auction houses in the area that came and picked up stuff (but not hoarder level at all, just a regular house really, but not enough stuff to make estate sale practical) and took it and sold it. The auction house then sent a check with her portion. She was pleased with that (and it was nice because they hauled everything up from the basement so she didn't have too!). 

It sounds like health issues are a real problem, so the idea of moving them from one house to another really isn't going to solve any of those problems.  

[Guest]

13 minutes ago, Selkie said:

Would it damage your relationship with your sister if your parents moved in with you? I can see how she and her family would want nothing to do with them, so it could mean the relationship between the two of you would become very strained if your parents are living in your house. 

I don’t think so. I think my sister would be relieved someone else is providing shelter so they don’t have to. My sister and I have had several conversations about the parents because my dd is the Golden grandchild, to such an extent as anyone is. My parents’ inability to lavish anything on any grandchild has been the only thing checking that favoritism as far as I can tell. 

[Laura Corin]

Unfortunately I  suspect that nothing might happen until there is a crisis that will force one or both to accept changes.  Just think through in advance how you want to respond to the various scenarios.

My mother only moved after she ended up in hospital and her house was declared unliveable.

Edited November 28, 2021 by Laura Corin

[Scarlett]

(((((Quill)))) 

I agree that there is actually very little you can do until they have a crisis and they are forced into a change.  Except I would definitely look into getting them all the government benefits they qualify for…and even that is sometimes impossible without their cooperation.  

Her dental health is alarming.  That can kill a person.  Will she go to the dentist and allow you to pay for it? 

[Granny_Weatherwax]

No advice. Just lots of hugs.

[Miss Tick]

I don't know the ins and outs, but it is totally normal to be on the list for a "preferred" nursing home or supportive living place and then turn down offers that come up before people are ready for them. So you could shop around for "someday". I'm more in the professional care nearby is better than living with direct relatives camp, though.

[mlktwins]

Been through this and want to send big hugs!!

My in-laws refused to move or renovate their house until it was an emergency and MIL kept falling.  They finally installed a chair lift as I was looking at/researching AL facilities.  They did not tell us they were having it installed.  They refused to put in a walk in tub that we researched and wanted to have installed.  Towards the end, they were not able to get in and out of their tub to bathe.  They did have a stand up shower, but never had the tile fixed in it (for over 30 years) and, by the time they were willing to have it fixed, we were in a new pandemic with two 94 year old's.  FIL said they were going to take them out of his house in a body bag and that is what happened - to both of them.  At 94, they were still getting around with walkers, but over the course of a week and a couple of minor falls each, and they were both done.  There was no moving them anywhere.  So...24/7 caregiving came in (at $600 a day) and hospice.  They were both gone very quickly.  As for the stuff, I think they were just overwhelmed by it all (they grew up during the depression) and refused to even let my husband help them go through it over the past few years.  We are still dealing with cleaning out the house over 6 months later.  

I was able to force a move for my dad to an independent living apartment building (mostly elderly live there).  He would not do AL at all.  My house is not conducive to an elderly person here with all our stairs, tubs, etc.  And...it honestly would not have been good for my dad or my family for him to move in here.  So...I moved him with the things he loved most, split up the stuff my sister and I wanted (not much), and had an estate sale.  Fixed up the house and got it sold.  All of this over 10 months.  He was so concerned about all the stuff, but he is happy living in less cluttered space and not have all the maintenance on his house to deal with.  I don't think he would still be alive if he had stayed.  I now wish I had forced AL, because 3 years later, he is currently paying for 24/7 care (at $600 a day) to stay in his apartment.  His next move will be to a nursing home, but we are trying to avoid that for as long as possible.  He is a very difficult man to care for -- he makes it hard on all of us (caregivers included).

Thankfully, both my in-laws and my dad had planned for retirement well so the financial burden piece was not something we had to deal with.  As dad is burning through his money very quickly now, it may become a problem down the road depending on how long he lives.  He is almost 87.

Like PPs have said, it will likely take a crisis for them to make a change.  And...you will be along for the ride.  My goal is to not do the same to my children as DH and I age.

 

  

[Faith-manor]

Gently, you can't make them do anything and need to prepare for/steel yourself for the worst. The reality is that you cannot make them move, you cannot make them make changes, and believe it or not, the disabled person left behind after a spousal death Ina pusher downer hoarder home, will not leave. My son in law's grandmother is in exactly this situation, and she will die inside the house. There is not one thing the family can do about it. The only way around it is if they end up hospitalized, the hospital sends them to rehab, the rehab says they cannot live independently, and a social worker manages to get them agree to a nursing home. Sometimes they listen to social workers and medical professionals say more than they will listen to their kids.

So I wouldn't plan. The chances are bizarrely remote that one of them will ever live with you or get rid of their stuff. This is something you will be dealing with after both of them are gone. In son in law's family, the siblings will hire a local company to come and fill dumpsters with all the junk, and then run an outdoor estate sale with anything of value. The house will be sold at auction likely just for the value of the land it sits on because it will not be worth a dime due to its condition. They are stealing themselves for finding mom dead on the floor. She is adamant she will not leave because she will not get rid of anything, she will not move. It is her legal right, and this is very common with people who live in these kinda of conditions.

The prep and planning is really for you and your family emotionally, and just having a plan in place for what to do in terms of disposal of the stuff and property.

I am very, very sorry! I wish I had better news. We are dealing with "determined to age in place elders" at the moment, and it isn't going to end well and there is not one thing we can do about it. Sigh.

 

[City Mouse]

This is a lot like what I have been dealing with except that my parents have more financial resources.

Check their county for services for the elderly. Where my parents live there is an Agency on Aging (I think that is the name). Ours offers meal delivery, transportation services, even housekeeping and some home care. Sometimes they help with home repair as well. Most of the services are income based. My parents had to pay a bit because of their income level, but even then it wasn’t much. Some things they didn’t qualify for because they had too much money, but that doesn’t sound like you will have that problem.

You can also look for senior housing in their county. This is income based public housing. How much they pay is based on their income. There is probably a long waiting list, but maybe not. There may be assistance with utility payments once they get there.

I am dealing with hoarding as well. Would your parents allow you to rent a large storage unit for them and pack some of their “stuff” into storage. I know this doesn’t solve the long term problem, but it helps with the immediate issue. Once the stuff is in storage, it was easier for my relatives to very gradually get rid of stuff.

In my case, my mother refused to accept help in the home or to deal with her hoard until my dad decided to move to assisted living last spring. She had to accept some help after that, but things have gotten very ugly since.

As others have stated, I assume that she will fight moving until her next medical emergency when I have made sure the children who live close know to tell the hospital that she does not have needed help at home and they can’t provide that level of care needed. So mom will probably end up in a nursing home because she refuses to make changes now.

 

Last resort is to contact their state Adult Protective Services. It doesn’t have to be an abusive situation for intervention to occur; however, the state could take “custody” of the elderly person and family could loose the legal right to make decisions for the parents. I havent had to do this yet, but I did threaten my mom with it if she refused to allow someone (a paid helper) to help her bathe. (Long ugly story about her not showering for over a year)

Edited November 28, 2021 by City Mouse

[elegantlion]

My parents played the tit-for-tat game with stuff for years. It didn't stop until my dad passed away. My mom ended up having an auction, selling the house at the same time. She was in great health, but moving and downsizing took a huge toll on her mental health for a while. A lot of what the auctioner refused to sell went in the dumpster - which was hard for her, and she was prepared to deal with it all. Knowing how traumatic it was, I'm not sure I'd force someone to level of downsizing without their acceptance of the process.

She knew she couldn't stay in the house where she was because it was too much upkeep. She bought a house and ds and I lived there with her. Ds still does. My mom went from a 4000 sf house to a 2500 one shared by me and ds. It is still crowded -  not horder level, just grandma's got too much stuff level -  and I'll admit on a superficial level all the clutter bothers me. So, if you're considering moving parents in with you, be prepared for that. 

We bugged my parents for years about downsizing at least the stuff. My dad was stubborn and refused to acknowledge some of his goods were really not worth anything - sentimental or otherwise. 

Not sure I have any advice except to say it is hard to deal with. 

[Guest]

43 minutes ago, Scarlett said:

(((((Quill)))) 

I agree that there is actually very little you can do until they have a crisis and they are forced into a change.  Except I would definitely look into getting them all the government benefits they qualify for…and even that is sometimes impossible without their cooperation.  

Her dental health is alarming.  That can kill a person.  Will she go to the dentist and allow you to pay for it? 

No. I know and I agree she could die just from her teeth alone. But she will not address this; it came up when she was first going through surgery for breast cancer. She was willing to have an abscess addressed because they would not do surgery with that infection present. But that was like nine years ago and AFAIK, that is the last time she had dental care. 

[Slache]

15 minutes ago, elegantlion said:

My parents played the tit-for-tat game with stuff for years. It didn't stop until my dad passed away. My mom ended up having an auction, selling the house at the same time. She was in great health, but moving and downsizing took a huge toll on her mental health for a while. A lot of what the auctioner refused to sell went in the dumpster - which was hard for her, and she was prepared to deal with it all. Knowing how traumatic it was, I'm not sure I'd force someone to level of downsizing without their acceptance of the process.

This is why I said storage unit. You can literally "get rid of" everything with very little emotional pain. Then you have access to everything and can get rid of it when the time is right.

[mlktwins]

What you could do, if you haven't already, is get access to their medical info (HIPPA forms) for each of their doctors.  Make sure you or a sibling are able to speak to the doctors and nurses about their medical care.  I now have to care my dad's POA and Advanced Medical Directive in my purse.  It has come in handy 3 times since July when he fell (the thing that precipitated him needing 24/7 care now).  Make sure you know where important papers are.  If they will let you be involved in the finances, that would be a good thing to have all the info on.

My in-laws, who were always on top of things financially, started paying some bills late, etc.  Huge stacks of mail starting to form.  They finally allowed me to take over all their bills, I set up on-line access, I got all their financial paperwork organized, etc.  That was in December 2020.  They were gone a few in April and May of 2021.  It came in very handy to have the info we needed to see what their expenses were and what money was available to pay their medical/hospice bills.  It also came in handy when we had to create and submit the inventory to probate their wills.

I do all my dad's bills, taxes, etc. too - since I moved him in 2018.  I was reconciling his check book before he moved and realized he was running late on some payments, writing one numerical dollar amount and a different dollar amount written in words so the checks were coming back to him, etc.

  

[Scarlett]

44 minutes ago, Quill said:

No. I know and I agree she could die just from her teeth alone. But she will not address this; it came up when she was first going through surgery for breast cancer. She was willing to have an abscess addressed because they would not do surgery with that infection present. But that was like nine years ago and AFAIK, that is the last time she had dental care. 

I find it interesting she dealt with the breast cancer but won’t deal with her dental health.  

[MercyA]

[footballmom]

Big hugs, Quill.  I don’t have any meaningful / new ideas to bring in.  FIL always said if MIL went first, he would never step foot back in their home bc he couldn’t live in that house without her.  He passed first, MIL isn’t taking care of her health, hasn’t decluttered anything and refuses to consider another place to live.  All the children / spouses now work FT and we can get her to appointments but can’t make her take care of herself or her stuff.  It’s hard. 

[Guest]

22 minutes ago, Scarlett said:

I find it interesting she dealt with the breast cancer but won’t deal with her dental health.  

Well, actually, when she was first diagnosed, she was talking like she would just die. She was acting like/talking like she wouldn’t treat it. It was due to me and her doctors basically pushing her along the steps that made her carry out treatment. She’s very passive. But cancer care (around here at least) is very directive. You are assigned a nurse case manager right away and that person kind of just pushes you down the path with the needed appointments and such. Plus I was driving her to everything so she just went. 

[readinmom]

When we moved my mom in with us, siblings were of no help.  One sent a moving van for things he wanted, and we decided to put everything else in storage units so we couldn't be blamed for missing items later. My mom pays for the units, and we will keep them until that day comes.  We hired a consultant who came out to our house, helped go through what would work from her current belongings, what had to go based upon the size of her room.  It was easier hearing it from someone else who had the experience of moving, the elderly, downsizing.  

Keep in mind, my mom is a treasure, has a heart of gold.  Not anything what some of you are going through.  However, we are the only ones who do anything regarding her, her appointments, etc.  Others like to tell us what we should be doing (ha ha) but I've grown a thick skin in recent years.  

If moving them in with you is a real possibility I would start with an outside professional organizer to guide the process.  For what it's worth, my mom has never once asked for anything out of storage, ever.  She has also decided to get rid of some things she brought with her due to space.

Praying for you, Quill...   These times of life are very difficult.  

[Faith-manor]

23 minutes ago, Quill said:

Well, actually, when she was first diagnosed, she was talking like she would just die. She was acting like/talking like she wouldn’t treat it. It was due to me and her doctors basically pushing her along the steps that made her carry out treatment. She’s very passive. But cancer care (around here at least) is very directive. You are assigned a nurse case manager right away and that person kind of just pushes you down the path with the needed appointments and such. Plus I was driving her to everything so she just went. 

We don't have that here. This is a very medically underserved area. No one gets a case/nurse manager. So passive patients due tend to just go home and die. Not much of anything happens until they qualify for hospice, and even that is not robust. Hospice is limited here to a once a week RN visit, and a once a week CNA visit for a bathing and a few other personal care things. State Medicaid and Medicare do not pay for hospice care in a hospital or free standing hospice facility, but they do for nursing home. Sometimes they agree to go to the nursing home, many times they do not. The worst thing for paramedics in our area is the very high volume calls of finding elderly people dead for days in their homes. They are usually found when a neighbor calls the police requesting a well check, ie. haven't seen anything stir across the street in several days, and there is an old, sick person living there alone call. I wish we had a better system. But this is not something our national and state leadership have been willing to throw resources at, and what little there is, tends to be on the chopping block when budgets get cut because wealthy politicians and the companies that control them can always pay for someone to take care of their elderly family members. Regular people are not important enought to be considered.

[prairiewindmomma]

The “must do”? Nothing, really. Legally, if they can still make decisions, they can choose to remain in rather challenging circumstances, even if their decision making is not rational. 
 

“Should do”? I think you have done a remarkable job trying to help them despite their own resistance. I would advise you to really consider all of the implications of bringing them into your home. I think you all would likely be happier and healthier if you instead use your energy now to explore having them qualify for Medicaid, Meals on Wheels, and look at nursing homes that take Medicaid patients and see what their wait times are. You are likely going to have a family crisis at some point soon where you will have to collectively make a lot of decisions all at once. Doing the prep now, and getting your sister on board with that info may help future you if you are a planner.

[Guest]

Faith-Manor, I’m so sorry. I know we are spoiled for world-class medical care where I live. In less than an hour from my door in multiple directions, I could meet with medical specialist who are known throughout the world. It factors into my thoughts about where else I am willing to live because I know it’s something not all parts of the country have. 

[Faith-manor]

3 minutes ago, prairiewindmomma said:

The “must do”? Nothing, really. Legally, if they can still make decisions, they can choose to remain in rather challenging circumstances, even if their decision making is not rational. 
 

“Should do”? I think you have done a remarkable job trying to help them despite their own resistance. I would advise you to really consider all of the implications of bringing them into your home. I think you all would likely be happier and healthier if you instead use your energy now to explore having them qualify for Medicaid, Meals on Wheels, and look at nursing homes that take Medicaid patients and see what their wait times are. You are likely going to have a family crisis at some point soon where you will have to collectively make a lot of decisions all at once. Doing the prep now, and getting your sister on board with that info may help future you if you are a planner.

This.

And also, if you want to do something to get them some socialization, see if there is a senior center nearby that offers meals. Despite being a rural, underserved area, we have a community center in the county seat that offers a seniors meal every Wednesday night. It is good food. Several churches and civic groups, including the culinary arts 4H club, support it and take turns providing the meal. The handicap van for the county does pick folks up for a $2.00 fee. You could see if something like that is available, make a donation to the organization, and then provide the transportation money. Ours has community social workers who eat there at least once a month and it puts more eyes on the elder. Sometimes they have music groups and special speakers so it feels like a really nice seniors event.

[Carol in Cal.]

I don't think there is anything inherently wrong with them leaving their house as their de facto storage unit if they can afford to live elsewhere.  I wouldn't worry about that, personally.  I would assume that one way or another I would be working on the 'stuff' issue eventually, and that it would be easier if they weren't around to object.

I would not let them move into my home with a ton of stuff to clutter up the whole thing.  If I had the room to let them move in, I'd consider it, but I'd set it up more formally in terms of rent and care costs, just to prevent the possibility of an elder abuse issue if they needed 24/7 care that I physically could not manage down the road.  And I'd just say, there isn't room for that in your room, over and over, if there were things that they wanted to move into the common areas.

In the meantime, I'd stop and think about what would make their current situation more reasonable.  For instance, could you fit a stacking Speed Queen washer/dryer set into a spare bedroom or closet?  If so, it would move the laundry to a better spot for them.  Since the house is a tear down, it wouldn't matter to future purchasers.  Same for other issues--I'd think through what smallish changes would make their lives more liveable and push for those.  Sometimes localities even have funding for some of that for low income seniors--my inlaws got a lot of energy efficient installations due to programs like that.

I'd consider freezing meals for two in easy to heat up containers for them from time to time, like meatballs in sauce (easy on the teeth), or tortellini alfredo (ditto), or buy them frozen lasagne meals to stock in the freezer.  Frozen or canned hearty soups are also good and easy.  That way they would have easy to reheat meals on hand readily available. 

I've seriously considered building a 'tiny house' in our deep back yard that is extremely accessible, so that relatives recovering from surgery or otherwise needing care could live there for periods of time, and so that we could use it later on when we need it, but it would cost so much to do that that I abandoned the idea.  I still think it has merit as an idea though.  Like the grandparents' houses of the Amish, it would be separate but right there, and a specific container size is nice for people with too much stuff.

Edited November 28, 2021 by Carol in Cal.

[kbutton]

2 hours ago, City Mouse said:

Check their county for services for the elderly. Where my parents live there is an Agency on Aging (I think that is the name). Ours offers meal delivery, transportation services, even housekeeping and some home care. Sometimes they help with home repair as well. Most of the services are income based. My parents had to pay a bit because of their income level, but even then it wasn’t much. Some things they didn’t qualify for because they had too much money, but that doesn’t sound like you will have that problem.

Yes, this. And I would also talk to local Habitat people. Some chapter do emergency repair as a side thing. It often has to be really bad, but if your area is more upscale, it might not need to be that bad before they'll intervene. 

You might want to know about this chain eventually. I have been hearing good things about them locally: https://www.caringtransitions.com/ 

[JustEm]

I think the first thing you need to do is emphasize to all siblings and their spouses that are involved that moving forward nothing can be a secret when it comes to your parents' future.  You guys can not effectively come up with a plan to care for them without everyone having all the information and working together.  That is clear with the way the fail secret house purchase was handled.  

Other than that, I have no advice.

[Laura Corin]

19 minutes ago, hjffkj said:

I think the first thing you need to do is emphasize to all siblings and their spouses that are involved that moving forward nothing can be a secret when it comes to your parents' future.  You guys can not effectively come up with a plan to care for them without everyone having all the information and working together.  That is clear with the way the fail secret house purchase was handled.  

Other than that, I have no advice.

Yes.  Things got much easier for us when all decisions went through the sibling Whatsapp group.  It actually brought us closer together.

[KungFuPanda]

Have you had an actual, blunt conversation with all involved parties in the same room where THIS was the reason for gathering and the sole agenda item in this meeting?  If it's all been a series of disjoint conversations with different parties, or a situation where you can easily switch to more comfortable topics, it could be argued that you have not had the conversation in a meaningful way.  What is clear to one person, and what one person thinks everybody knows, might not be reality for other family members.  

They should have mediators for this sort of thing . . . like financial planners, but counselors who can guide this meeting and get everyone on the same page.  If that's not possible, they can at least make everything crystal clear for everybody. "Yes, Mom and Dad, you have the ultimate say BUT IF you do A and B happens, your children are not going to scramble to fix it."  I'm ALL for helping family when unforeseen disaster strikes, but if someone intentionally drives off a cliff that everyone can clearly see then they cannot expect anyone else to launch a salvage operation.  Can you do an intervention with a family counselor?  Is that a real thing that happens? Can they make it like an escape room where nobody gets out until concrete decisions are made? 

[Catwoman]

I don't have any good solutions for you -- you have gotten way better advice from others here already -- but I'm going to suggest one thing that might sound a little selfish on the surface, but I think it's important.

Before you even remotely consider having your parents move in with you, please remember that if you do that, you will effectively be trapped in that house for potentially many years to come. Do you really want that lack of flexibility? Do you want it hanging over your head that even if you eventually decide you want to leave your current situation and get a fresh start, your parents living in your home could prevent that? 

You have already posted in another thread about the stresses in your house because one person won't get vaccinated and has very different views on politics and Covid, so don't overlook the amount of extra stress that could be involved if you add two more people to your household. I think that could be pretty tough even when everyone was already happy and on the same page, but if there are already some problems that need to be worked out... I can only imagine how hard that would be on you. And also, you have a good job now, and if your parents' health declines even further, you might end up feeling obligated to give up your career that you wanted so much, in order to take care of them. 

I hope you can find a different solution, because I can see this scenario becoming miserable for you. Maybe I will get flamed for this and people would say that you have to put your parents' needs before your own, but in this case, so much of what's wrong in their life is all of their own doing, and I'm just not sure that you should have to potentially sacrifice your own future hopes and dreams, unless it's something you really want to do, and you go into it realizing what you may be giving up. 

Sending lots of hugs.

[ktgrok]

Honestly, best solution (not a great one, but best) is to have them move in with you and keep their house as the storage house. At least then they are not living in the hoard, have better nutrition, etc. If that is financially possible it is likely the best option. Then clear it out after they pass on. 

[prairiewindmomma]

12 minutes ago, KungFuPanda said:

Have you had an actual, blunt conversation with all involved parties in the same room where THIS was the reason for gathering and the sole agenda item in this meeting?  If it's all been a series of disjoint conversations with different parties, or a situation where you can easily switch to more comfortable topics, it could be argued that you have not had the conversation in a meaningful way.  What is clear to one person, and what one person thinks everybody knows, might not be reality for other family members.  

They should have mediators for this sort of thing . . . like financial planners, but counselors who can guide this meeting and get everyone on the same page.  If that's not possible, they can at least make everything crystal clear for everybody. "Yes, Mom and Dad, you have the ultimate say BUT IF you do A and B happens, your children are not going to scramble to fix it."  I'm ALL for helping family when unforeseen disaster strikes, but if someone intentionally drives off a cliff that everyone can clearly see then they cannot expect anyone else to launch a salvage operation.  Can you do an intervention with a family counselor?  Is that a real thing that happens? Can they make it like an escape room where nobody gets out until concrete decisions are made? 

BTDT, just because you have the convo doesn't mean that they will actually do what was previously agreed upon when the crisis happens.  And, if there are unhealthy relationships, a parent can manipulate a sibling into "switching sides" and really blow up the dynamics.  Sibling communication is really important, as is communication with parents, but when you're dealing with passive aggressive behaviors, avoidance, and anxiety, all bets are off.  If they are already hoarding to cope with the anxiety (and anxiety is what drives that behavior), odds are they will lash out or silent treatment.  Fundamentally, you're dealing with mental issues, not physical problems. The physical problems just happen to be present and driving a bit of the crisis.

[prairiewindmomma]

13 minutes ago, Catwoman said:

 

Before you even remotely consider having your parents move in with you, please remember that if you do that, you will effectively be trapped in that house for potentially many years to come. Do you really want that lack of flexibility? Do you want it hanging over your head that even if you eventually decide you want to leave your current situation and get a fresh start, your parents living in your home could prevent that? 

You have already posted in another thread about the stresses in your house because one person won't get vaccinated and has very different views on politics and Covid, so don't overlook the amount of extra stress that could be involved if you add two more people to your household. I think that could be pretty tough even when everyone was already happy and on the same page, but if there are already some problems that need to be worked out... I can only imagine how hard that would be on you. And also, you have a good job now, and if your parents' health declines even further, you might end up feeling obligated to give up your career that you wanted so much, in order to take care of them. 

I hope you can find a different solution, because I can see this scenario becoming miserable for you. Maybe I will get flamed for this and people would say that you have to put your parents' needs before your own, but in this case, so much of what's wrong in their life is all of their own doing, and I'm just not sure that you should have to potentially sacrifice your own future hopes and dreams, unless it's something you really want to do, and you go into it realizing what you may be giving up. 

Sending lots of hugs.

So much this.

What happens if you discover it's unsafe to leave them with a stove in the house? We had some minor incidents with hot burners being turned on and left hot.

What happens if you discover you have to secure all vehicle keys?

Are you really ready to deal with incontinence? Or refusing to change clothes? Or complaints about meals?

Are you ready to not be able to have friends over because Mom wants to not be left out?

Are you ready to take on driving to doctor appointments? Pharmacy runs? Drop and run hospital stays? 

How will you deal with loud tvs? People who have odd sleeping hours? 

How will you deal with being the primary social entertainment as often they will not maintain their own sets of friendships as they drive less and their friends start to die off? 

What will you do when they refuse to shower and smell worse than any preteen?

My personal bugaboo---little bits of used kleenex tucked into the sides of chairs? Commentary on how wasteful I am by not eating every bit on my plate.  Refusal to eat veggies or fruits or anything healthy while also dealing with real physical issues from diet.

--------

We've done multigenerational family living a couple of times, briefly, and it is a huge, huge strain. The only way I could do it again is side by side duplexes with a passthrough door between the units AND with them having regular housekeeping and regular paid caregiving.

----------

You can't pick up one end of the stick without picking up the other.  REALLY think about what you're willing to do. You don't have to be the sacrifice on the altar of your parents' refusal to adapt to changing circumstances.

[Guest]

@Catwoman I have thought about those things you mentioned. For one thing, I truly do not want to be stuck in this house because it’s too big and I already want to downsize when youngest goes to college. The longest I would want to still be in this house would be after ds graduates from college, which is ~ 6 yrs away. I don’t really even want it to be that long. 
 

And yes; I know my mom at least is hard for me to live with because she likes a bunch of commotion all the time and I’m the opposite. She plays the radio ALL. DANG. DAY. I know this from after her surgery when she stayed here. She likes what to me is constant noise and (over) stimulation. 

[Laura Corin]

38 minutes ago, Quill said:

@Catwoman I have thought about those things you mentioned. For one thing, I truly do not want to be stuck in this house because it’s too big and I already want to downsize when youngest goes to college. The longest I would want to still be in this house would be after ds graduates from college, which is ~ 6 yrs away. I don’t really even want it to be that long. 
 

And yes; I know my mom at least is hard for me to live with because she likes a bunch of commotion all the time and I’m the opposite. She plays the radio ALL. DANG. DAY. I know this from after her surgery when she stayed here. She likes what to me is constant noise and (over) stimulation. 

We almost made these mistakes.  Luckily Mum moved into the main house before we had done any work on an extension.  We had time to realise that it wasn't going to work and to force her into a care home. Yes, it was brutal, even though she had earlier said that she would only live with us if it worked for everyone. Those words turned out to be empty.

We have since moved house. My mother is now 97.