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Hello again. I am here to vent and hope to find some direction/advice...


I know this sounds horrible, but I am leaning into making the decision of not putting a lot more time into helping my husband's older family members anymore. He is close with them (they have no other family members who can/will care for them) and had been struggling to help them on his own at first, but they do not communicate with him well—I think because the wife thinks men should not caregive and perhaps they push one another's buttons. We live a day's drive away and have several young children we are raising so this is...a lot.


After seeing everyone suffer for over a year arguing and ignoring each other as our older members continued to decline, they asked me to step in. The wife was opening up to me. This was the only way my husband would know how they were doing. So I agreed to help. I researched the local resources, got everyone a bit of information (articles, blogs, etc...), and talked/listened to the wife a bunch. They all asked me to do more, because they are...paralyzed dealing with this on their own. I love them so I was happy to oblige at first. We visited them and took them to their Department of Aging to find more help. My husband said they really appreciated it and hope we come up again, but they haven't really done much on their own after we left (that was about 3 months ago). It's like the wife just wants to sit and wait to be rescued.


Aside from loving my husband, I actually care about these folks dearly and I want to do my best to help, but I'm fried. His older family members haven't really been proactive about taking care of their health to begin with. That is totally human for a lot of people (it's normal to hide from scary stuff versus facing it), but helping them feels like dragging an anchor right now. They also have been super unkind and rude to everyone else in his family so they drove away local people who could have been a network/community for them/us.


Lately, they have been making super irresponsible choices. They have been putting themselves and older family members in direct risk of catching COVID19—even though we both asked them several times to be careful (and explained how/why). This has been the straw that broke the camel's back for me. I know I need to be there for my husband and our family, but I am so frustrated.


I will be heartbroken when an emergency happens, and I will still help, but I want to set boundaries ASAP. Our part of the family and my own health should not be sacrificed, because these folks choose to be self-destructive, selfish, and toxic.


The wife is caring for her husband who is a lot bigger, and he has developed dementia for well over a decade. They didn't seek help for it until a couple of years ago when we pressured them to look into it and talked to their doctor (husband showtimes).


Every time we see them, the wife is more off...both physically and mentally. If they don't get sick this year (they seem to think they are invulnerable right now), she will likely end up hurting herself or having a stroke or heart attack in the next six months to a year.


How can we plan for when these people end up in the hospital and cannot safely return to their home?


How can we plan they transfer to a home quickly so they do not end up in ours? The husband is loud, and sometimes he can get quite nasty. I can deal with him well in small doses (I've learned the art of redirecting topics with a dementia sufferer), but I don't want to have any of us living with it—not even temporarily for a week.


I know this is a crazy time as everyone is getting sick and probably we will be jumping through hurdles and things will not go as planned (even if we plan well), but if I have an idea where we could start it would be so helpful.

Whatever you do, do not take them into your home. When the inevitable emergency happens let the social worker know that they have an unsafe situation at home and no you cannot assist with anything. They will need to be placed and force the social worker to do their job.

I certainly understand they whole 'waiting to be rescued" mentality. When my father was living on his own he was like that. I was fine with helping him with things he could not do but I refused to help with things he didn't feel like doing. The more I helped the more helpless he acted. You have to learn how to say no and not feel bad. I found that getting angry at their lack of consideration for the work you have done helped.
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TinaBurger Mar 29, 2020
Thank you! We will stand strong. I'm glad we started talking about it, and thankful my husband is on the same page as much as he loves his aunt and uncle. We're going to check with their local resources. At this time, I bet facilities/hospitals will be continually changing how they operate which is really a lot, but realistic. Stupid pandemic! :(
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Unfortunately there is not much you can do until the emergency happens.

Maybe research facilities that can meet the needs of both, an AL with memory care type facility. Find out what is required for move in, where I live it is a needs assessment and a TB test showing negative.

When the emergency hits, and it will, someone will have to go to the hospital and say, UNSAFE TO DISCHARGE HOME! Repeat until someone helps you. I had no authority for my dad and it was a nightmare, but persistently telling everyone that I needed help because I couldn't meet his CARE NEEDS got me local help.

As Ahmijoy said, try to get Medical and Durable Power of Attorney's for both of them. Be sure that they state the state statutes on the form for DPOA, this will help when dealing with a financial institution.

You must realize that auntie's behavior is indicative of some mental decline, executive function is one of the 1st things that go, meaning that she can't start or follow through with ideas and plans. She is also showtiming, past actions prove their desire for the impression of wellbeing to any and all. So she is probably not waiting to be rescued, she can't implement plans and that is not going to improve, it will only get worse.

One thing that I found very helpful was just knowing that he would be going to a facility if he could no longer care for himself, that it was going to be hard and no one would be happy about it. Get an agreement with your husband about how things will look when the time comes, you don't want to find out later that you are on different pages.

Knowing that they are going to be angry, non compliant and against any thing that takes them out of their home will help you to deal with the emotional consequences that will happen, it's okay that they experience this, it truly becomes about them being safe. They will adjust and learn to live wherever they are, regardless of what they say, this will not kill them. So don't own any of the guilt or manipulation that will be slung around to get their own way.

Great big warm hug! This is such a rotten situation for all. Best luck getting them taken care of. Good job knowing that you will not be moving them into your house and knowing that you need to look ahead. You are far ahead of lots of people in similar situations.
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My suggestion is to call APS. Explain the situation. Telling them all you have tried to do from a distance. These are vulnerable people. If APS finds they cannot be alone, allow them to take over. The Court will assign a guardian for them. In my opinion ur too far away to have POAs. And depending on their cognitive decline, they may not be able to assign you anyway.

You and hubby have tried. This couple just won't or can't move forward. If something drastic happens, tell the hospital or whoever you have no authority. That you can't possibly take them in because you have a young family and jobs.
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TinaBurger Mar 29, 2020
Thank you, JoAnn - Next week, I will speak with two people who work with elderly folks/dementia patients and live in the aunt's/uncle's region. I will let them know everything we have seen the past few years—especially recently. If either or both make a case for us to contact APS, we most certainly will. At this point, we both realized this is beyond our capability to handle alone. While we do not want to take away our family members' rights, we have a responsibility to stop them from seriously harming themselves or someone else.
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With all of this COVID-19 going on, caregiving is far worse than it used to be with isolation necessities. Unless you are willing to totally isolate yourself and stay with them 24/7, avoid this at all costs.
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TinaBurger Mar 29, 2020
Nope. Not going to happen. This is why we are considering having someone check in on them.
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Thank you, NeedHelpWithMom.

While I'd like to distance ourselves from them (and I have no problem doing this with abusive relatives), it is not an option. These folks are my husband's aunt and uncle, but they raised him so they are very much his parents. They are his closest family. He has no siblings, and they had no other children—though he has cousins who live locally from other aunts/uncles.

They used to be decent people before this all went down, and they even could be very kind. I think the aunt had been covering up for the uncle's increasingly inappropriate behavior and normalized it (even to the point she picked his side when he'd start arguments with people about insane things) so that drove a lot of people away.

But when his aunt opened up to me about her feelings of shame and loneliness I felt bad for her. It's terrible what a stigma there is with dementia! At the same time, the poor woman seems to be her own worst enemy. If she had been able to open up to people instead of trying to make everything look "normal" I think they'd be better off.

But I digress... I guess I'm looking for ideas of an in between solution—something to prepare that helps us to make sure they get care during an emergency, but keeps us from being sucked in. Does that make sense?
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NeedHelpWithMom Mar 26, 2020
I’m sorry. I know it’s complicated. My situation became complicated too. It’s also heart wrenching. I understand. I cared for daddy, mom, my brother. I burned out! I don’t want you to overextend yourself like I did. Take care of yourself. Hugs!

Have you contacted Council on Aging for a sitter? They help a couple of times a month for four hour shifts. They help prepare meals, help bathe, will run errands, light housekeeping and so on.
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I’m so sorry you and your family are going through this. I’m not sure if I have any answers. Possibly his insurance has a case manager that could step in and help direct resources and a plan of safe care. As selfish as this may sound, a wise man once told me “don’t do today what you’re not willing to do every day after.”
it’s important you maintain sanity and a healthy relationship with your husband and children, they are your priority (in my opinion.) You dont want to fester resentment. Maybe you can do resource searching and online assistance for them, without traveling for direct one on one involvement. Call a family meeting to discuss a plan, everyone may decline but at least it shows you made an effort. If you do have a family meeting, be prepared. Look into government resources for the aging/dementia. They should at least have someone you could talk to. Caregiver burnout is truly a problem, and it’s okay to feel that way. Your health, both physical and mental, is important too!
Best wishes and prayers for you and your family.
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JoAnn29 Mar 28, 2020
I saved that saying. And its true. I know we are suppose to take care of each other but sometimes the "others" take advantage when there are other options. Thats why, since Moms passing 2 1/2 yrs ago, I have not gotten back involved. I don't volunteer, if u ask I will do. Its seems the word volunteer to some means lets take advantage. I like being in the background. You need something baked, I am the girl. An occasional clean up or out you can count on me. Donations, sure.
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I can only speak from my own experience. My mother is an hour away. We have always had a difficult relationship, and I needed to set boundaries around time I spent supporting and caring for her. So I limit my time to 1/2 day per week. I do what I can during that time, and I realize that she is going to continue to make decisions - good or bad- on her own. In this case, the bad decisions are to continue living alone and to keep driving. It creates a lot of stress for the family, as we know that she cannot take good care of herself. One thing that has helped, is that the family have worked with her doctors, to make sure that a nurse is coming once a week to check on her. They take her vitals and assess general condition. She also has a physical therapist come in, and someone to come in to do some light housekeeping. She also has an emergency button that she wears as a watch. She falls about twice a month, and cannot get up, and we are alerted. We have her signed up for meals-on-wheels, so we know she gets a daily check from that as well as a hot meal. You cannot do it all yourself, but you may, through doctors and social services, be able to provide some regular checks for well-being, as well as a safety valve for emergencies. If you have the fortitude, you may suggest that they move closer to you, into either an assisted living or small apartment, or you could provide more frequent input and support.
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TinaBurger Mar 29, 2020
You poor dear! I'm so sorry you are going through all this on your own! Yes, boundaries are so crucial! I think for us we may need to look into talking with a professional in the region about what to do. They may recommend they get homed, but it is hard to say. This is why I'm looking to a pro—it's such a hard call to make on our own, and if they need to be in a residence having heard it from someone else who works with elders in need will really help us not carry guilt (though I'm sure we will feel some) and have a better idea whether we are making the correct choice.
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As an "in law" you should not have to accept major responsibility for these older people. You cannot save them from their irresponsible actions and if you do manage to find placement for them I bet the rest of the family will resent you for it.

Who has POA for them? That's the first order of business. Whoever gets that should open lines of communication with the doctor and other local sources of help. Your contribution can be ordering food for delivery and calling them more frequently. Please don't move them to your home or move in with them.
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TinaBurger Mar 29, 2020
We have POA. And I agree, I should not have the major responsibility. I did offer to help at first. Nothing happened for a year at first when my husband tried to get them help. Everyone was thankful at first, but now it feels like they are thrusting everything onto me. Been talking with my guy about it, and he now sees I'm getting boxed into doing it—which is not fair or even healthy for our relationship with each other or them. We're going to have to seek outside help, because it's beyond our family's ability. We're also looking into planning what to do in an emergency, and we are both on the same page in regards to keeping either/both of his family from moving in—as much as we love them and want to help.
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Use this time as an opportunity to cut ties. Your profile is empty so I have no idea where you are but we should all be staying at home as much as possible.

They will need more help as they age. You have your own family to tend to. Your children need you.

Can their primary care doctor refer them to a social worker to help them plan for their future?

Best wishes to you and your family.
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I am single with two parents 87(cancer and diabetes) and 84--I visit often and do everything basically at this point. Daily I call and ask if they need anything- Friday morning I found out they went shopping to 2 maybe 3 stores, I totally lost it on them, I am already taking risks myself but for them to go out after I repeatedly told them not to and I would do everything I was besides myself. My father has dementia on top of all his other issues, when she asks him to do things he says yes since his reasoning these days is out the window, she has always been stubborn and self centered making this a particular challenge. It's been a few days, I am almost calm and thinking of calling the police department in the town and having an officer stop by next week to say something like - the governor has asked that all seniors not go out for the next few weeks unless it's a true emergency, of course for my mother not having greens and fresh bread is an emergency.
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