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After much difficulty on their own with medications, stairs in the house, keeping up with bills, house repairs, yard work, eating proper meals, my parents (My mom and step-dad for over 35 years), decided that they were ready to look into other options.
First, we tried some at home services. We had tried meals on wheels, Visiting angels, yard service, in home therapy services etc. My mom would usually tell these service people to leave or be rude to them. She did not want anyone in her house or anyones help. Another difficulty was that my mom was beginning to dislike all of her long time neighbors, yelling at some of them and flipping others off. Not a good situation and a new behavior. She also thought she could still drive.



About my parents-
( My mom has a lung disease. Often out of breath, very skinny and weak with bad vision too. My dad has prostate cancer which has begun to spread into his bones. Both parents have a Dementia diagnosis as well. For over 2 years, I have taken my parents to their numerous doctors appointments and heard the doctors tell them that they should consider an easier and safer life in an assisted living facility.)



My parents and I explored many different assisted living options, visiting them, having tours and having meals in the dining rooms so we could talk to other residents, and going to some performances too. etc... . They were excited to participate in the bus trips to the theatre, stores, etc, they looked forward to the entertainment, social experiences and the dining room meals too. They chose their 1 bedroom apartment on the main floor as they have a patio. On moving day, my brother took them out for a really fun day trip and lunch while my husband and I hired movers to help us with the task of moving and set-up. It was a frantic day but all went smooth. When they arrived at their new home, a little confused, my dad said "Honey, I think this is our new home!" "Look, all of our things are here". They were thankful and happy. For the first week or two. and off and on since then. It's been 8 month now and they are angry with me and want to go home. They think they were kidnapped! For so many reasons, that they don't understand, they can't go back to their home.



In addition, 2 month ago, my daughter and son-in law moved into my parents home. It had been vacant for 6 months and I was going back and forth to change the lights, make sure that no one had broken into the house, make sure nothing was freezing... Very stressful. I learned from neighbors that for insurance reasons, a house really can't be left vacant.



One of my issues- I can't tell my parents that their grandkids are living there because they will think the worst, that I am taking advantage of them. Or maybe my kids are. Or perhaps they may think, great!, we can move back home and the kids (Who have full time jobs and school) would take care of them. I would never ask my kids to do this. It would be a full time job.



I also worry what others are thinking. I know my mom makes some calls, letting others know how much she hates it there and wants to go home. She has even complained about elder abuse. I have asked their close friends and our family to please keep this secret about my kids living in their house. I know this is putting them all in an awkward situation too.



Please share your thoughts. Living with anxiety and constantly questioning myself. I am driving my husband crazy. What would you do? Am I doing the right thing? I am the POA for both of them. Are there any kind of support groups for us adult kids? I sure appreciate this group!

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I really appreciate each one of your responses to my post, "I am always worried what others may be thinking about me and my decisions." Each response was thought provoking and helpful to me. I will add a couple notes here-

I am sorry I didn't add this as most responses suggested that the kids pay rent.
They are paying monthly rent. My daughter deposits it into her grandparents account each month. They are also responsible for the upkeep of the yard and maintenance of the house. It actually looks better that it has for about 3 years. My parents are told that the kids are helping with the upkeep of their home- just not that they are living there.

I have been told by my parents accountant the it would not be beneficial to sell their house or a rental cabin they have until one of them passes. This is due to the initial price paid and the difference in current value. WA State.. For this reason we are holding on to these properties for now.

I do call my parents lawyer when I have a question such as, "Is it okay if I make necessary repairs to the rental cabin?" I have been told yes, because it is in their best interest to keep thing up. (Something they were failing to keep up with) Their lawyer is not an elder law lawyer but does seem to know the answers to my questions. Would there be a benefit to using an elder law attorney at this time?

Thank You ALL.

I have a list of great suggestions that I will get to work on.
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NeedHelpWithMom Jun 5, 2024
You’re welcome. Best of luck to you.
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The only ‘right thing’ you are not doing, is telling the whole truth. You are asking “friends and our family to please keep this secret about my kids living in their house”. That’s more than embarrassing for everyone involved. You know “this is putting them all in an awkward situation”. It’s not just a ‘therapeutic fib’. Nothing else is wrong, but you need to tell the truth sooner rather than later, and let everyone else off the hook.
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We all have those moments, I actually was talking to my mom's neighbor this morning, found out my POA brother is in Texas for work for 2 weeks, never told me and just came back from Iceland. But tells moms neighbor.

Well I vented on him a bit and after I'm like crap, is my brother going to here what I think about him. Maybe who knows but end all be all what's it matter, when my mom's gone, they will all be out of my life.

Point is we all have these moments, and if any of you don't please tell me your secret.too.
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Anyone who was not hands on and worked to the bone does NOT get a vote.

Anyone who doesn’t know the whole list of challenges and struggles you’ve all been through does not get a vote.

Anyone who is just being a nosy body advice giver does not get a vote.

YOU are doing the right thing.

Keep on keeping on!
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Evamar Jun 4, 2024
Cxmoody,
Please copy that and paste on as many post as you can, because you are so right!
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I'm for selling the house. Someone will eventually tell your parents that the grandkids are living there, and all hell will break loose. Your daughter and her husband should be encouraged to make their own way rather than expecting housing from the grandparents.

You could block mom and dad's phones so that they can call and receive calls from only certain people. They probably would never figure out that you did it.

You did a great job in finding your parents a nice place to live. They seem like people who will always have something to complain about, and right now that's you. Step back and don't be so involved. Don't hover. Don't think you can make them happy because that is not going to be possible. If you're not around so much, they may get more involved in their community and find something else to think about other than how miserable they are.

Good luck, I hope you can see the sense of not getting so wrapped up in them that your life becomes only about them!
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waytomisery Jun 4, 2024
True ….at some point someone will let the cat out of the bag about the grandkids in the house , especially if they come to believe it is the reason for not letting the elderly couple go home again .

There always seems to be someone around to plead the case of an elderly with dementia wanting to live on their own.

My sister wanted to live temporarily in my parents’ house and not pay rent . She was having a new house built and had sold her current house and had to get out . She didn’t want to have to pay rent anywhere . She wanted to just pay the taxes , utilities . I said “ No way “.

I sold Moms house quickly to avoid complaints from anyone else in the family about sis living in it , it also wasn’t fair to my widowed mother in AL . God forbid my mother found out someone was living in her home when she wanted to go home .

My sister also had a husband 2 kids and 2 large destructive dogs who would have chewed up the doorway moldings like they did in my sister’s home .

It was also wasting my mother’s money keeping up the house . I changed the locks , cleaned it out and put it up for sale before sis could try to move in .
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So I will tell you what became our mantra when we started caregiving for my FIL - because EVERYONE has an opinion - even if they only know the information from a demented mind that doesn't even know reality from fantasy. And everyone believes they get a say - even when they don't offer to help - they offer to share their thoughts and opinions of what you should be doing. When you are a caregiver - the best thing you can do for yourself is to develop the thickest skin you can. You are doing what you know to be best. If no one else is offering an actual solution in which THEY are doing the work, they don't get even an iota of a vote or opinion, period.

And remember this...courtesy of Dr. Seuss.

"Those who mind don't matter. And those who matter don't mind."
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There is a lot on your plate. A lot of issues.
If you are also adding to the plate consideration of what others are thinking of your decisions for your parents, who have dementia and can no longer make their own, I would consider counseling for yourself. Give yourself the gift of a good cognitive therapist who will support, and help you work out what is important.

As to your parents, they have had their lives.
You have done your best for them.
You aren't responsible for their conditions nor for "doing" anything more; they are safely in care now. Don't expect happiness. After all, can you honestly say YOU are happy? No, of course not. Unhappiness is a part of our lives, especially at the end of our lives. The losses are inexorable and inevitable. You didn't cause it. You can't fix it.

I wish you the best.
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Shell
Your feelings, your parents feelings, the anxiety you all are under and the denial your parents are experiencing are all part of the many issues with elder care … with or w/o dementia.
Some parents confabulate and tell wild stories to others and embarrass their caregiver children. Sadly you have to endure and tough it out. The dementia will progress and they will move on to other symptoms. And their life has been hijacked, just not by you. .

As you said, it wasn’t working for them at home. You did what was necessary but it is good to tidy up the details.

Start with yourself and get your anxiety under control. Finding a certified elder care attorney is very helpful with reducing anxiety because you will understand which of the actions you have taken need adjustment, if any. Most of us haven’t done these things before and can’t imagine all the things that will pop up. It’s good to be validated and if you are making mistakes, better to learn sooner rather than later.

It is very important that any and all financial decisions can’t look like gifting in the event of the need for involving Medicaid. I am sure you have done the math and know how long your parents can foot the ALF bill w/o needing assistance or their house sold.

The kids living in the house and under what terms needs to be discussed with the attorney. Since you have POA, it may be in your purview to make any and all decisions on their property. You must read the POA and discuss this with the attorney. Hopefully your brother approves of all you are doing and is helping.

The best way to handle the anxiety is to exercise, meditate, journal, sleep well, eat healthy, find a therapist. Don’t ignore it. Check out the Alz website and look for local groups.

Speak to your parent’s care team about calming meds for them.
Have you spoken to hospice? That might be appropriate at this point.

I would not dwell on the house with your parents. If they report that neighbors saw your grands there, I would say yes, they are helping me look after things and move on. Try to leave them reassured, not with more questions. Their anxiety will increase when they sense you are anxious. Do whatever is necessary (and healthy) before you visit to make sure you are in a good mental space.

I am sorry you are going through this difficult time and that your parents are so ill.
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waytomisery Jun 4, 2024
Good point about Medicaid look back and the kids living in the house potentially looked as gifting .
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Good job in getting them the proper care that works for them and you.

My Mom lives in the house next to mine. She's 95 and has started physical and cognitive impairment, but she's lived in the neighborhood since 1997 and the neighbors know her well, but not well enough to know that she's in the beginnings of dementia: poor decision-making, sundowning, paranoia.

The other day she erroneously got a package meant for her neighbor, whose house is higher up than hers and has a super steep driveway. Rather than simply calling me up to take care of the package, she nearly killed herself walking there trying to get it to them. Another neighbor spotted her and helped her walk back down the driveway. I had to contact them to let them know I was unaware she was doing this. She'll even attempt to shovel her driveway in the winter if we don't get over there fast enough, and the neighbors will fly over their with their snowblowers. Again, I have to keep explaining to them we're not leaving this "poor old lady" to fend for herself. Even though we're next door, I'm on a corner and can't really easily see her comings and goings from her home.

I too think you should sell the house. This is also for the sake of your parents' ability to qualify for Medicaid in the future, should they need it. Please consult a Medicaid Planner for your state so that you don't get blind-sided. Also, those kids may not budget as if they are paying rent. Then one day they will need to move and may be in a bind because they didn't factor in paying the high price of rent elsewhere. They should as least be paying FMV for rent to your parents and keeping the house up in good condition.

There will be judgment by others and you'll never be able to control or get ahead of it, but if they're not people you know, care about or and love, then who cares? You can't let stuff like that paralyze you. Don't spend your limited emotional energy on things that haven't happened yet. Save it for yourself, your husband and kids.

I'm glad this forum has been helpful to you!
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You’ve done well in moving your parents and looking out for their best interests by having them in a safe place. Don’t discuss this with them again, put “this is your home” on repeat anytime the subject of leaving or their old home comes up. A dementia diagnosis means they will lose the ability to reason and make good decisions, don’t expect them to understand or not want to argue. Just don’t fall into arguing back. Personally, I would not have relatives living in their former home. The home should be sold at fair market value and the money from that used to pay for their care. This can not only look bad, but cause issues for you down the line. Please learn to stop worrying over the comments and thoughts of family members and friends, they haven’t walked where you are, and if they aren’t wise to dementia, that’s on them
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First, I hope that your daughter and son in law are paying rent. Fair market rent. This income will go toward your parents continued care.

Second, your parents will probably have to move to Memory Care. 2 things that I see might be a problem. The first floor with a patio sounds great but one or the other may be able to wander away.
Also with a diagnosis of dementia the trips and activities that sound so wonderful on the initial tour probably won't happen. With dementia people's world becomes smaller and they feel less comfortable in groups and away from their familiar surroundings.

You have done everything that you can trying to make things easier for your parents. This is what a good daughter does, this is what a good POA will do. Please do not let anyone second guess you or tell you that you should have done something differently (like I did in my first comment...sorry about that)

This is a good support group.
You can ask at the facility where your parents are living if they have a Support Group. many IL, AL, MC facilities have Support Groups and if they do you will meet others like you that have parents or siblings living there and it will give you a common bond to begin with.
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waytomisery Jun 4, 2024
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You Can get free consultations with elder attorneys . The fact is you are doing your best in Making the right decisions . Eventually They May Need more Care than assisted living . Get a Therapist . We Can Go back and forth In what we did right or did wrong - all it creates is anxiety . A House is a Big responsibility so it is good you Have People Living there . Dementia Only gets worse . I Think you Have done Plenty for your Parents they should consider themselves Lucky to Have you . It really sounds that you have done more than enough .
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You did the right thing placing your parents . Why are you worried about that ? You haven’t said that anyone is telling you to let them go home ?

People may think having your kids stay at the house for a long time rent free is taking advantage of the situation though . Your parents should be getting rent or the house should be sold . As POA you are to do what is in best interest of your parents. So either the kids start to pay rent ( at a fair going rate ) into your parents’ account for their care or you sell the home and the kids move out .

You never know who will believe your parents’ stories that they concoct to go home . You can’t worry about it .

My personal opinion is sell the house . Once the house is sold they can’t keep asking you to go home . Holding on to the house is just a carrot dangling and they will continue to come up with ways to try to get someone on their side to bring them home .
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waytomisery Jun 4, 2024
In general, I never really understood why so many people hang on to the parents’ house so long . It is another thing to take care of.
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Shellanne, I think you are worrying to much what people think about you, and you letting them control you life, your thoughts.

I know it's not good to leave a house vacant, it detriates much faster. But to say the insurance company doesn't want it empty, I've never heard that before, maybe I'm wrong but a lot of people, pay insurance on an empty house.

I think counseling would be really helpful to you. I get worrying what others think, but people are going to judge, no matter if you care or not. It's just human nature, you could do everything the perfect way but someone is going to tell you that the wrong way.

You need to build your self esteem to not care. My parents my whole life centered there life on "what will the neighbors think" BS.

Sister at 18 gets pregnant, boyfriend was abusive. " Omg what are the neighbors going to think"

Mom tried to kill herself, dad says, " your not embarrassing me that way"

Get out of that trap to care what others think. You are letting others control you without even knowing it

Read self help books, maybe ones on codependency, get therapy, and maybe anti anxiety script.

I had "friends" coming to my house, tell me I should redo my kitchen, or I need a dishwasher, are you going to do anything about this or that. I finally told them, " my friends come to see me not my house, if you come to see me, great, if you come to see my house, DON'T!" Well they haven't been back, and I'm very happy about that!

Best of luck , keep us posted on how things are going
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97yroldmom Jun 4, 2024
Nacy
Insurance policies go up when houses are empty. But inexperienced dwellers w/o contracts can cause great damage as well.
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My reaction is that your kids should be paying rent, because otherwise it is easily called exploitation. Get the evidence of rent payment on your parents’ bank statement. Then tell your parents that the doctor said they should no longer live on their own, so they are renting their house to their grandchildren. The grandchildren are caring for the house and are paying rent into their account. The house couldn’t be left vacant. It wasn’t safe, and it would void the insurance.

You say that if they evict the grandchildren, they are still not in a position to return home. You could not care for them, you tried all the possible options to allow them to live at home, and they didn’t work. Have they forgotten about all that work you did to try to prop them up at home, and how it wasn’t good enough? Have they forgotten that they agreed to move? They weren’t ‘kidnapped’, have they forgotten that they loved it when they moved in. Why are they telling people that they are being abused?

You say that you will not help them with the legal work necessary to evict the grandchildren, even if they would like to. You will not help them to move. You will not help them to live in the house again. The grandchildren can't care for them either, because they both have full-time jobs. The reason you won’t help is that it won’t work. They should be glad that they have somewhere so nice to live, now that they can’t really look after themselves. The more trouble they have with forgetting things, the more important it is that they have people to care for them properly.

This won’t be easy, but it’s all true except for the back rent. You and they need to face facts, sooner rather than later. You owe the truth to yourself and to them. And once you have gone through the facts properly, you can refuse to go through it again.
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I am so sorry that you are experiencing such anxiety.

Be at peace with the decisions that you made for your parents.

Ask yourself if you would judge anyone unfairly if they were in your shoes. You would understand why they chose to place their parents.

Hopefully, others understand what you are going through. If they don’t, please don’t let their opinions bother you.

You have POA and have used it wisely.

I am sorry that your parents aren’t able to understand that they can no longer live on their own.

Have you discussed meds with their doctor to calm their anxiety?

Wishing you peace as you continue on your caregiving journey.
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