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Where to even begin?

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Hello, I have been lurking here for a while. I'm looking for a little advice. I apologize if some details are vague. I am trying to respect the privacy of the people involved, but I feel like a deer in the headlights right now so if I can get ideas of where we can start to help these folks right now in this crazy time, it'll really help.

We have two parents who need care. One has been diagnosed with dementia. The other is showing signs of not quite being able to make healthy safe decisions (has done things like allowing the spouse with dementia to drive and screams at their pets—very, very out of character for this parent who usually is a very sensible, kind, pragmatic person), but still seems coherent to the point we are debating whether or not assessment is needed at this point.

It's very possible that depression is at works, but it is clear this couple will need other adults to step in very soon. We have been trying to help them for a while—and we've been trying to do it in a way they can make choices for themselves. It was starting to actually turn around for the better. Then COVID19 hit. :(

They are over a day's drive away. Travelers from our state are ordered to quarantine if we come to visit. Then in our state, out-of-state travel is discouraged.

On top of that, the only reason this couple may be taking proper COVID19 precautions right now is their state mandates it. They still do things that make me shake my head, and I think they tell me what they believe I want to hear. Initially, they did not take COVID19 seriously at all when it started. This means if we see them, we are potentially taking a health risk and we cannot afford to do that as one of us is high-risk, and we have kids.

But we are very worried as we are expecting an emergency is going to happen sooner than later. Before this all came down we were trying to help them find resources close to help them find ways to stay in their home (unfortunately they would refuse people coming over to help as the parent with dementia has paranoia and is *very* loud), but now it's a lot harder. The parent with dementia has a lot of health issues which were serious before, but now causes COVID19 vulnerability. The other parent also has some health issues and is being worn down very quickly having to do all the caretaking. There are other family members near them who could have helped, but they were driven away by the toxic behavior that came with the dementia.

We've been given the responsibility of being their POA, and we do it because we care about and even love these people—even though they aren't the easiest to be around right now. We would like to be able to keep an eye on them better, but we know they *cannot* live with us. We have orthopedic issues ourselves (for one of us lifting is completely out of the question...the other of us is *tiny*), and they would raise hell with our lives. We started thinking about looking into local assisted living or even memory care that is actually local to us.

It would take a lot to talk them into considering this...we may even have to have a social worker or judge step in, but we can't see any other way if an emergency happens and they no longer can care for themselves.

We want to start exploring facilities near us. I know this is a hard time to do that (tours are probably out of the question for the time being), but we want to set up an emergency plan, and perhaps have something set up so we can move them right away if an emergency happened where they couldn't go home alone.

What are good things to look for and ask when contacting homes/facilities to find out information? What needs to be done if someone can't continue to take care of themselves safely on their own? What can we do to prepare in case that happens (and it likely will)—especially since we are such a distance apart? Would this be a good time to find an attorney? Also, if we got an attorney, which state should we look for one—ours or theirs?

Thank you!

Behavior Change Care Decisions Parents

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Its hard to be a POA a days drive away. Do you have both Financial and Medical for both of them? And if you have kids, how old are they?

If the one has Dementia and needs more care, your POA overrides the spouse being able to make decisions for him/her. If ur POA reads that your responsibility starts when the person has been deemed incompetent to handle their own affairs, then get a letter from the doctor stating this. Then you will have the ability to place them. With the one whose personality has changed recently, that person may have a UTI and that is serious. They can become septic. This person needs to see a doctor and be evaluated. Testing to rule out Dementia. Could be a diabetic, low potassium, thyroid...there are all kinds of physical problems that look like a Dementia.

I would call Adult Protection Services in their area. Explain your situation and ask if they can go in and evaluate them. I may also talk to a lawyer because there seems to be one who may need placement and the other may become a Community Spouse. The Community Spouses assets need to be protected if Medicaid for longterm care is ever needed.

I would try to enlist a family member to at least be your eyes and ears. You can't do everything from a day away. Hopefully APS can help with some resources.

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Thank you for the information!

"If the one has Dementia and needs more care, your POA overrides the spouse being able to make decisions for him/her."

I had no idea! We'll take a look at it this week. I'm thinking at this point, we need to write down a list and take baby steps. It's just overwhelming with everything that's going on.

The kids are young, but old enough to know what's going on (we've been very upfront with them about their grandparents in age-appropriate terms). It'll be a over a decade before we are empty nesters. They are out of school right now through December doing virtual learning. That has actually been going well. We are both fortunate to be in fields and with companies that let us work from home.

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Hello. I absolutely agree with JoAnn's questions about a UTI. Behaviors that suddenly flare up are usually a sign of something else going on. I would ask them to see their physicians right away. Then I would probably call their physician and see if you can speak with the Doctor and express your concerns. If they agree to see the Doctor he/she will be prepared for their appointment and can discuss options.

I would also seek information about Assisted living, location, medical care services, cost, amenities. I'd be happy to help discuss some options that are available, and questions you need to be asking. I can also help you prepare to discuss options with them. Please let me know if you would like some help.

Don't feel like your alone because there is help out there for them and YOU!!

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Thank you! Ironically, I gave this as an answer to someone else here. XD

But we'll check that again. Apparently, they are close to their doctor and get lots of checkups, but who knows how true that really is. We've had a bit of phone tag before with the doctor about a year ago. I think we'll give it another go, though. It would be good to get a dialog going with them right now.

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Speaking from personal experience with my parents who it took 2 years to get them to move to get help, and who didn't want to give up driving.(but thankfully aren't anymore) In my state, I can go on-line and report anyone who I think should not be driving anymore, and the DMV looks into it. I didn't do this for my parents, but the facility that are at did and my parent lost their license.

A lot of facilities are doing virtual visits now so that you can see what everything looks like. Some questions you could ask:
1) Do they allow pets?(many facilities don't) If they do allow pets, would you be able to hire a pet sitter or you help take care of the pet?
2) Prices(they have a monthly fee for living there, but some things they do cost extra on top on the monthly fee.
3) Do they have a social worker that you would work with to check in with your loved ones and you to help.(because things will continue to change)
4) Do they have transportation to take your loved ones to doctors' appointments? Transportation to take them to social events? If yes, is there a fee?
5) Do they have doctor's that come into the facility to assess patients?
6) Would they give you contact info for a family who has a loved one there so you can hear first hand their experiences with the facility.

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OMG, thank you, thank you, thank you! This really, really helps give us a place to start. I tend to be the one to find 411 for everyone, and that makes a big difference before we really dive into making these decisions. This is so overwhelming, it helps to have these step-by-step questions at hand.

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A lawyer will tell you that you don't have a legal right to force your parent to move if they don't want to move--no matter what type of POA you have. The only way you can have a legal right to move your parent is if you have guardianship, which is a lengthy, expensive process and the court might choose a paid guardian rather than you. However, a lawyer will not tell you what many people do without guardianship: fib, pretend, sugarcoat, promise, cajole, spy, sneak, and take action on every level without asking the parent. When one of them ends up in the hospital, it's possible to have them discharged to assisted living or other facility, if they are not safe at home. Meanwhile, both parents are extremely vulnerable to scams, exploitation, and manipulation from strangers and even so-called friends. Do something soon, before their money dwindles away on scams, before "helpers" start helping themselves to household valuables and even furniture. (Someone I know: his father had a handyman he trusted, and the handyman not only stole coin collections and tools, he also took all the furniture and replaced it with second-hand furniture, then the handyman charged the father $thousands for the "new" furniture and for hourly moving fees.)

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"However, a lawyer will not tell you what many people do without guardianship: fib, pretend, sugarcoat, promise, cajole, spy, sneak, and take action on every level without asking the parent. "

Ho-hooooo.... Sneaky! Feels a bit like parenting. XD

In a sense, it is quite the same I suppose. And like how I parent my kids, I feel a strong need to give them as much of a choice as safely possible—even if it means just giving them the option between two or three. I absolutely love (and respect) these people—even with them being difficult right now. They are scared, sad, and in pain. Most of us do not do well like that. But I digress.

You're very much correct. Thank you for this reminder. I wish "opportunistic" kinds of people in our world were not like that. I hope I can do right by these parents in finding them safety and letting them feel like they can also have some control, but I know we'll have to step in to a large degree, too. I wish this was more openly talked about versus being treated like a horrible, shameful secret.

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I just wrote an entire response for you and it disappeared.... Let's see what I can do again. I also had a parent out of town who showed signs of needing some direction (notice I didn't use the word "help".) I hired a Professional Geriatric Care Manager in her city to be with us along this difficult path. You see, I am a PGCM so I know of what I speak. There is a National Association and, I am sorry, but I didn't look up the exact new name of the organization but you shouldn't have any trouble finding it. If you do, please get back to me. Be sure whomever you hire is either a Nurse or a degreed Social Worker. Everyone who has ever taken care of a family member things they are qualified and they are NOT. The person can be of service for all that you need. Including speaking with their doctor and finding an attorney and helping you make the decision of where your parents need to be living if that is an issue. Since you have their POA do you have both the Health Care and Financial parts? Do you pay their bills? Do you have access to a check book if necessary? You have no idea how much I commend you for your caring concerns. I know of so many adult children these days that have forgotten to Honor thy Mother and thy Father. Good Luck. Write back if you need any additional information.

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There’s lots of confusion about what is required Legally to get elders into care. Some reluctant elders who are borderline competent may be able to fight it legally and guardianship may be required but usually when it’s clear to one and all that facility care is called for I think few places would insist on guardianship.

In my case with two parents I had POA And later guardianship, but the assisted living said all they needed was a letter from their doc stating they can no longer care for themselves. It was quite obvious to anyone that my parents could not be in their home.

I moved mom directly from the hospital to assisted living after a bad fall. I cajoled dad in with her a few days later.

You have to do what has to be done at this point.There will likely be anger and tears. Don’t hesitate to fib to help the process. My mom was in assisted living JUST TILL YOU GET BETTER. Dad came in cause MOM REALLY NEEDS YOUR HELP.

Good luck to you. This is the hardest stuff

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Lily, unless I messed it -- if you are not a family member I would still communicate with any of their adult children (that they have good relationship with) of what is going on, even if they aren't local to them. They may be able to help where you can't. Definitely try to contact and engage those nearest them (neighbors, friends, church/place of worship, etc.) so they can step in during an emergency. Do they keep a hidden key outside their home so EMTs or APS can get in if no one answers the door?

Good suggestions have been given to you by other commenters. I wish you all the best as you work through this situation!

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Actually, I am a family member. The relatives living close to our ill parents are friendly but not super close to us. We had a chance to become closer during reunions, but those stopped about a bit over a decade ago after there were falling outs. I tried to bring it up to them, but they dodged it. It's obviously hurtful what happened...

But from what I gathered, our parents who we are caring for became toxic with our/their other family members who lived close by. The dementia parent would start unpleasant "debates" with everyone (family, even strangers in restaurants, etc..) which almost always turned into one-sided bullying—often about politics or parenting. One family member is actually scared of the parent who has dementia!

They would get like that with us, too, before we learned how to "argue" with a dementia sufferer (distract, redirect, distract, redirect ;) ), and if we hadn't realized what was going on with their health it probably would have lead to estrangement as our kids are old enough now to know things are not right and we wouldn't want them caught in the middle of an ugly argument.

The worst part about these arguments is the caretaking parent would normalize the dementia suffering parent's behavior and even take sides—even after the most cruel and preposterous things were said. When we started to talk to them about health/neurological concerns, the caretaking parent disclosed to me of being really scared and ashamed "family would notice" the ill parent was not acting right. I'm guessing that's why this happened.

But unfortunately now no one else wants anything to do with either of them. While those local family members (who could have been a big help to us) are friendly with me and my SO, they are cautious. I wish they understood and we could have their help and (more importantly) family connection, but I can't blame them—and it feels kind of awkward to approach them since we never got to know one another very well before this happened.

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With dementia, expect things to get worse, where the person may need total care like an infant if the disease progresses to the worst-case scenario. The choices are home care with aides coming in, or living in a senior facility if the loved ones can't care for themselves. You can hire aides through an agency or on your own. Agencies are easier (they take care of all of the paperwork), but will be more expensive. They may need more liability insurance if aides are coming in. Also, remove all valuables, cash, credit cards and personal papers if you'll have aides. Have their financial statements sent to your address. Some people with dementia don't realize that they have dementia. Make sure that all of the paperwork is in place for you to be able to handle all of your parents' financial and medical needs. You need to do this immediately, while the parent with dementia is still able to sign papers. (Hopefully the dementia is still mild.) They need a will, a living will with their medical directives, POA for medical and financial decisions (it sounds like you already have that), and some banks require their own POA forms to be signed. With my mother, she was OK with making her accounts joint with me on them. This makes things much easier later on. When my father passed away, my mother was willing to move closer to me to make visits easier. I don't think my father would have agreed to doing this. He wanted to remain in their house. She wanted to live in a senior facility which had more social activities and support. I drew a circle around our apartment with 1.5 hours of travel, public transportation to get there, and I also wanted a continuous care facility where she could start out in independent living and they would move her to assisted living or skilled nursing if needed. The facility offered insurance to keep the monthly charge the same, no matter which facility she was in. My mother was able to keep her car in independent living, but chose to sell it and use the facility's shuttle service and local taxis. With couples, it's a more complicated. My mother's facility allows one person in the couple to be in independent living while the other is in assisted living. My mother is in a memory care unit with advanced dementia. She is receiving hospice-type palliative care there. We changed her medical directives to "no hospitalization" because she was not understanding why she was in the hospital, wasn't following instructions and bit the nurse. People don't want to leave their homes and their freedom. It's a difficult "sell" to persuade them to move to assisted living where they will be subject to more rules and schedules. Some considerate parents tell their children to move them wherever is convenient if they cannot care for themselves. I told my mother that I would not be able to visit more than once or twice a year if she didn't move closer to me.

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Thank you so very much for sharing your experience! I know it's different for each family, but how often do you visit your mom? Did you give her time to adjust on her own at first?

We're at the point of looking at a place like that which is only a few miles from where we live. Unfortunately, they just had the beginning of a COVID19 outbreak (several staff members and a resident were infected last week).

But I'm still going to check it out. We need some where to start. This is going to be tough, but I know it's much better to look at it now than when one of our parents gets ill or hurt. I think this week is a good place for us to begin.

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A good place to begin is with their primary care doctor. Some medications changes may be helpful. The parent that does not have dementia may be depressed and sleep deprived. My parents started with in home care and that seemed to be a good fit for them. An agency has well trained and responsible staff. We did use Concierage Care and are very satisfied. They cover a variety of services including light housekeeping and laundry. This will take a great burden off the parent that does not have dementia. Good luck to you and yes unfortunately things will decline. Get started on the POA, living will, etc.

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You don't have a plate that is overflowing...you have a platter...It's all way too much isn't it? And bless you for wanting to do the right thing, being respectful, honest all while recognizing your own limitations which are so many. (Distance, age, health on top of the damn COVID). So take a deep breath, and know that if a crisis develops and others are involved, the others will be doing/caring as well. For better or for worse. In the meantime you can do some things, do some homework. So first of all, you know where they live. Call that city's city hall and ask who serves as the local office on aging. Every area of the country is also covered by an Area Agency on Aging, and they will know what resources are available even though it is going to be a handful with your relatives allowing access. You also might want to touch base with the local/closest Alzheimer's Assn...even one in your own area which will have people who know resources, and might have support groups...and perhaps that you might want to connect with in the area these relatives are in...that way the other people virtually present will know about the local resources. You also might want to connect with the local fire dept for them...give them a heads up on who is living there and the issues and that you would be a contact. Do you have keys to the relatives house? They could install a knox/lock box so that keys to the house are accessible in the event of an emergency. I think I would start, as far as attorney with someone in your own area who is a CERTIFIED elder law attorney and can either help or refer to where the elders are residing. You will need to know lots of information re financials to help make the best decisions. It also sounds like th person caregiving is burning out or has issues of their own. Probably a challenge to get that person to an assessment if the other one is unable to go with or stay home safely. It's never too early to connect with an attorney, and if the other person is developing it, you want them to be able to sign off on things before it is too late and they lose that capacity. As a last resort, there is always Adult Protective Services, but they would probably not get involved unless it was a crisis.
There also Geriatric Case Managers to work on your behalf...but I'm sure everyone is impacted and concerned about current risks as far as home visits...and throw in the challenges of your relative with dementia...
Sometimes in the midst of a situation it seems like a crisis point...it happened to me in the past month with my mother who has dementia. In retrospect, it wasn't. It just felt like it was, and in fact it WAS in the moments it was happening...but in the grand scheme...not so much.
I don't know the link but you can look places up to investigate and see what complaints there have been about a place...it's a government website...also check to see if where you're looking has a long term care ombudsmans office. Good luck...just take it one day at a time...

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