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!
With regards to attorneys, you will likely have to consult one in their state.
Do not let them move in with you.
Consult the Area Agency on Aging if you have one in your area, they often have a social worker on staff. They can help you with resources.
Work with their doctors if you can so he/she can help with getting care as the need arises.
Having POA is huge. We don't have POA and parent won't give it to us even though paying the bills has become cumbersome for them and a few have become delinquent.
Take care of yourself and your family. This path is rough, if you need counseling, please seek it. I did.
Best Wishes,
You should really try to get the children of those parents involved or any of their relatives. But if you can’t then you’ll need to be the decision maker since you have POA. There are a lot of things to look at if you put them into a care facility. Like finances, how much money have they saved. Those facility’s are extremely expensive. Don’t get in above ur head to where you are risking your own family’s security/future. I’m almost for sure that attorneys or anything about legal decisions need to be with the state to which they live not your state. I must admit that even though my mom gave me such a hard time with her disease I’m so thankful that I embraced what I had to do and faced it head on. My mom and I laughed, we cried, we talked about the good and bad things we did in life and to each other. And we forgave each other for our mistakes. Mom passed away peacefully at home with me (her only child) and her brother, her last living sibling by her side. Keep talking to their family to get and stay involved. Love and care for their parents. And bless you for being there for them. Take care of yourself always Your health comes first.
If they decide they can't meet your care level, they can either evict you or require you to pay for full-time caregivers.
A memory care facility that doesn't add "levels of care" fees would probably be a better choice than assisted living.
The cognitive test is good to have done, so medicare and health insurance can see the reason they need more care. Because, it is their primary care doctor who much sign papers for admittance to assisted living.
I thought my husband would walk away, fight, rebel, etc. Instead he didn't know the difference. When your loved one is committed, you cannot visit for 2-3 weeks so they get used to the new "house"/hotel. That worked well, he didn't ask to go home, I took him to a living room area in the facility and told him this was my new home and we found a TV to watch.
I can't say my husband was very argumentative on going to the facility, he was often argumentative and belligerent to me. It seemed at once he was there, he changed. It was not assisted living, but they checked on him at least every 2 hours or 1 hour. They came in and supervised his bath, so he didn't know much different. You have to start somewhere, and the test is first, frank discussion with their doctors, and support from them, as well. Good luck. Remember , lots of truthful fibs. New home, vs assisted living. Neighbors moving in vs more sick people, etc. Caregivers helping you vs him. Start with primary, and any referrals he/she recommends and get appts as soon as you can. With your distance, it may be difficult, but better to get it done soon rather than suffer with the problems from a distance. Good luck.
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...
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
The adult protective service worker can determine if they are safe and do not present a danger to themselves. Let him drop in once in a while and get back to you. Their is no place like home unless the want to make the change. Your standards for living are different. It is hard to rely on professional assesment.
You are right...do not bring them into your home. That will create many problems for you and they will continue with their lifestyle. If they are safe and not creating a health problem for themselves...let them alone. You can still .....if you want...distance and just have a friendly visit. The a.p.s. worker evaluates.
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.
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.
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.
Are they safe to live by themselves?
Seems to me from your message that they are probably not.
Are they healthy?
Other than the dementia and COVID risks it seems that they are.
Since 1 question is yes and the other is no... your parents probably need another living option. You may have to start with a doctor's appointment to diagnose dementia or impaired cognitive function in both of them. At that point, your POA can kick in. I agree with you that an assisted living facility near you is probably a good start. You can start screening them online and make calls to interview the management.
Praying you can get them the help they need before an emergency happens.
Seems to me from your message that they are probably not."
I believe you are correct. I've seen too many flags that make me believe they are probably in danger. The biggest one is they really don't have much of a community or actual friends from what we can see. Then I have noticed things that were...off...in their home. I'm not the neatest person nor am I am in any ways conventional at that so I really do not judge how others keep their homes or live their lives, but something (more like several somethings) feels wrong when we visit. My gut has always been dead-on in situations in the past, and the biggest mistakes I've made were not listening to that part of myself.
Right now, it's very easy for me to picture the caretaking parent having a life-threatening emergency (probably exasperated by stress and strain) and getting really, really hurt, because the other parent is not really with it enough to call 911.
Yes, they visit their doctor regularly for chronic issues, but the caretaker has no other help and it has been very painful to see the impact this has on them physically (and mentally) when we've visited. They won't let anyone come in. I believe it's like they are in this place that if they take help they fear the other parent's condition becomes more real or that they are failing as a caretaker.
Good suggestions have been given to you by other commenters. I wish you all the best as you work through this situation!
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.
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!!
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.
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.
"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.