Just found out my aunt has significant dementia, and her husband passed away.

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MauleSkinner

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MauleSkinner
I’m kind of at a loss here, looking for some help…

I got a call from my mom a little bit ago…my dad’s youngest sister (age 75) lives about 800 miles from the closest relative (me). Apparently the neighbors hadn’t seen them for a while, so they called the police to do a wellness check. They found her husband dead on the floor (apparently deceased for at least a few days), and my aunt said she didn’t know who he was, he had broken in, and had been lying there.

They took her in for evaluation, and at this point it’s likely she’ll have to go into some kind of memory care.

They don’t have any kids, but my brother has power of attorney. Unfortunately he now lives in Germany and is currently in Switzerland. Bottom line, my wife and I will probably be the ones to go deal with the immediate issues once she’s released from her medical and mental evaluation at the hospital, since she won’t be able to take care of herself. Obviously my brother will need to authorize whatever we do.

So…how does one go about finding and selecting memory care facilities? She has a sister, also in memory care, in another state. We’re considering moving her up there, if nothing else so that there’s family nearby…my younger brother and a couple of cousins.

Her husband has a sister, and we know where she lives, but we don’t have any names or contact information. I talked with the investigating officer and let them know where, so hopefully they can find her. At this point I assume they’d put her in contact with my brother.

I talked with my brother, and he can get there probably Tuesday, so my wife and I will head down there tomorrow or Friday.

Anyway, so many things swirling around right now, any thoughts on how to proceed would be appreciated.

In the meantime, we’re giving thanks for neighbors who care enough to check, police officers who were on the spot, and the health professionals in whose care she is now.
 
Look for assisted living facilities near you--as close as possible because you will be making many trips there.

The quality of the facility depends greatly on the management. Take some tours and watch how the other, more capable, residents are spending their day. Talk to a few who are still coherent and see what they say about the care they receive.

You'll end up paying several thousand per month. If your aunt doesn't have the resources to pay for the care then she'll be stuck at a Medicare facility which, likely, are not as good, unless you, and other relatives, are willing to bear the cost. Use any and all assets she had to pay for her care.

Powers of attorney have limits. You'll also need separate medical and general POAs. Nothing requires anyone to accept the POAs, they may each have their own process. SSA, for example, does not accept POAs and require you to go through their process before you can make any significant change, like changing the account to which the monthly payment is deposited. If the POAs have not all been properly established, you may be required to go to court to have her declared incompetent and a guardian appointed.

Once she is moved, family must visit often to monitor the care she is receiving.

Find an estate attorney have pay him to review all of the paperwork. Wills, trusts, POAs, etc. I paid for one hour of an attorney's time and it was very helpful. He later handled all of the estate paperwork when they passed. Start that relationship soon.

I went through this with both of my parents. If you'd like, I'd be happy to have a phone call to discuss what I learned. I'm busy tonight, but am free most of the weekend.
 
First things first. Take a big, deep breath. Next, whoever has the medical power of attorney needs to be ‘making’ the decisions for others to carry out.

Here’s the unfortunate part we’re going thru with my dad’s dementia care. In some states, it matters not the diagnosis of the individual; they still get a choice whether to be placed in a facility capable of caring for them regardless of who holds medical power of attorney.

Finally, memory care and dementia care can be two different things. Whatever facilities are being considered need to be appropriate for the diagnosis.
 
@Larry in TN , thanks, good points. I’d guess that my brother was in contact with the attorney’s office that made out the POAs. I’d assume they would be as good as anyone to review the paperwork now?

We definitely understand the need to have her near family that can supervise/monitor her care. I have no idea of their financial situation (they were both retired teachers), but with no kids of their own, there will be no issues with all of her money going into her care.

They have a condo that will need to be emptied out and sold…we’ll have to figure out how to find the things that she can take with her to give her some comfort. I’m assuming at this point that she won’t recognize any of us. Bonus if she does, but we probably need to plan for the worst case.
 
TCABM said:
Finally, memory care and dementia care can be two different things. Whatever facilities are being considered need to be appropriate for the diagnosis.
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Yeah, we really don’t know what the specific situation is right now. Theoretically the evaluation she’s going through now will tell us, and we can proceed accordingly. Of course, this being the start of a holiday weekend, I would expect the time frame for the diagnosis will be a little longer.

The person who contacted my brother did state specifically that she’s in a “safe place” right now, so that gives some comfort.
 
Very sorry you're dealing with this. Get her moved either near you or near another relative that's willing to step up, as she's going to require lots of attention.

MauleSkinner said:
...we’ll have to figure out how to find the things that she can take with her to give her some comfort.
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Forgive me for stating the obvious, but safeguard anything valuable - jewelry, cash, credit cards, etc. Robbery is very common in elderly care facilities. Inventory everything, give copies to all concerned, and stash the stuff in a safe deposit box.
 
Sorry to be a downer, but be aware that the care provided by some facilities is related to how much family monitors the care provided. Not all, but some places need to watched like a hawk.

Note that it's entirely possible that she will recognize some people some days and not others.

Caring for, interacting with a dementia patient requires a huge amount of patience on your part.

I pray that you will find her the care she needs.
 
Cannot emphasize the part about patients with frequent visitors get better care than those not visited at all. We witnessed that when my dad was in a memory care facility.
 
I've been involved in helping a good friend as POA who has nobody else to be her advocate. Someone needs to take her to medical appointments and monitor the effect of the prescriptions. Nurses at memory care facilities pass the meds but don't evaluate whether the drugs are making things better or worse. I've caught them using nurse practitioners to prescribe meds my friend had just been weaned off of by her doctors, even though I had explicitly withheld permission to use staff doctors or the facility's pharmacy. Lots of other "catches" too.
 
First, I am very sorry to hear about this situation. It is fortunate that the neighbors did call the police for the wellness check, and that the right services and people are involved. The transition to having the previous generation needing care is an extremely difficult one. My mother got to the point where she was no longer able to live on her own and we moved her out here last year. While not memory care (at least at this point), the facility where she now lives has memory care, and a friend's mother is there. So, I've been through similar recently.

As others have said, the best option is for her to be moved near some family. If she didn't remember her husband, she likely won't remember who any of you are. However, this will be important because some family member will become the legal guardians. Medical appointments will still need to be had, and someone will need to take her to those and determine the proper course of action and care for her. And, as mentioned above, the residents who get visitors get better care. It's not necessarily intentional, but it's a lot of little things. They will not give you (I use the word "you" to mean whoever she ends up near, whether you specifically or another family member) reports or keep you informed, it will be up to you to keep watch on things. It's good to show up somewhat randomly and at unexpected times. The people there should know who her family is, and be asked questions regularly about how she's doing.

You haven't mentioned (and probably don't know, at least not for sure) how much money there may be to pay for any facility. This is important to figure out, as the costs are going to be highly variable. While good care can exist anywhere, there are a lot of details that will vary, and you do get what you pay for. But, there's only as much money as there is to pay for such things, and so you have to be practical about that.

Since she's going to be in memory care, that's the primary item to be concerned about, but presumably she will eventually also end up needing nursing facilities, unless she dies of something more suddenly. It would be best to find a facility that you expect can care for her until she passes away. Where my mother lives now has independent living, assisted living, memory care (in the assisted living wing, but it's got its own section), and then skilled nursing, which has both a memory care wing and a normal nursing wing. Obviously you only need memory care and nursing to worry about, but you don't need to look for a facility that only does those. My mother started where she is in assisted living, and the facility was recommended to me by a friend whose mother moved directly into memory care.

If you (or whichever family member she moves near) have friends who can provide a recommendation on places to look at (or avoid), then that's one of the best things that you can get. Beyond that, a general Google search is a good place to start, view websites, and start calling and asking to take tours. The people you come across will tell you a lot.

It's overwhelming and emotional to deal with. Bringing my mother out here and moving her in was the hardest thing I'd ever done. We're 13 months in, and it has gotten easier, there's a routine now. The first 6 months is the hardest. Eventually, things get settled into a routine. There will be harder times and easier times.

But first off, breathe.
 
Hate to ask this, but having been down this road 3x already -- is the money "right" ? memory care is about 9 grand a month currently and will outpace inflation.

If not, you need to plan out medicaid eligibility. We leveraged an Elder Law attorney and would have utterly failed at navigating that shiz show otherwise.
 
You have my true sympathy, as we have been dealing with this for quite a few years now.

My father in law (a 100% fantastic guy) passed about 4 years ago. He had dementia and cancer, and watching his decline was horrible and heartbreaking. We did our best to help my mother in law move on with downsizing to a condo and hoped that she'd be able to reboot her life. Unfortunately though, she started showing signs of cognitive decline, and before too long we had to make the decision to move her to assisted living. She's been in memory care for a couple years now.

To complicate things, we live a couple hundred miles away. My wife's brother still lives close to his mom, so we decided to look for a facility in that area.

We got recommendations from my mother in law's heath care team, as well as friends who have gone through this. We set up tours of our top 3 facilities and spent a couple hours at each one. The thing that gave my wife much peace of mind, was returning later in the day to see how things were actually running. Admittedly, we only did that with our top pick after the accompanied tours, but the second look during off-hours did help confirm the choice.

Hope this helps a little.... it's not a very fun process.
 
I agree with others that you take a moment to breathe.

The man that is our EAA chapter president owned two facilities along with his brother. He told me that he got into the business because when his mother needed care he went looking and was not at all pleased with what he found. The one facility had a memory care unit and he talked of the many ways that they worked to help these patients.

As has been said, quality care depends greatly on the management and owners of these facilities. Again, as already mentioned, theft is a nasty concern and cameras in the rooms found at times it was the staff doing the stealing.

May the Good Lord help you as you reach out to help another!
 
Larry in TN said:
You'll end up paying several thousand per month. If your aunt doesn't have the resources to pay for the care then she'll be stuck at a Medicare facility
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Larry in TN said:
NO, A MEDICAID facility. When my Mom exhausted her Medicare entitlement she, or more correctly my brother and I applied to Medicaid on her behalf. Yes, dementia here, too. The application was about 6 inches thick. We were advised to hire a consultant to fill out the application package, and we did.,Money well,spent!
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Sorry this last paragraph is by me, the undersigned. I fumble fingered separating it from Larry in TN’s original txt.

-Skip Miller
 
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I am currently living a similar nightmare, as my wife of 50 years disappears before me due to Frontotemporal Dementia.

I try to avoid being the dead husband found on the floor after a long-overdue police wellness check, by using a free app called Snug. Each morning, I must touch a button in the app by a predetermined time-- if I don't, the app automatically notifies my emergency contacts, and they will call or visit to check on me.

www.snugsafe.com

Snug Safety - Free Daily Check in service for seniors living alone

Have peace of mind that someone will know if you need help. Over 10,000,000 check-ins so far. Featured by AARP Magazine.
www.snugsafe.com www.snugsafe.com
 
Appreciate all the input. I’ve taken a few deep breaths, and it’s not quite so overwhelming. Almost, but not quite.

My family is in agreement the consensus here…she needs to be near family members who can help ensure her care. The largest concentration of relatives at this point is in the town where her sister is in memory care, and my cousin has contacted them to check on availability if that’s what she ends up needing. My mom is also in that area visiting my younger brother for the next month, so she can help scope things out.

Fortunately my aunt and uncle had the good sense to select my older brother instead of me to be point man on this. He’s a lot better with this stuff than I am, and has also gone through some of it with his in-laws. My wife and I will probably be heading out over the next couple of days to get things figured out locally until my brother gets there.

Another bit of good news is that my sister-in-law has connections in the medical field where my aunt is, something that has turned out to be quite an advantage dealing with my father-in-law’s medical issues.

We’ll definitely get through this, but I greatly appreciate your thoughts, prayers, and suggestions.
 
MauleSkinner said:
The person who contacted my brother did state specifically that she’s in a “safe place” right now, so that gives some comfort.
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I hope this is true. I don't want to alarm you or assume the worst, but rather help illustrate other possibilities so that you can be aware.

A friend's dad has Parkinson's and suffers from dementia. Around this time last year, it was still mild--he was 95% himself, but occasionally threw a non sequitur into conversation. He could still take care of himself pretty independently, but he lived with his wife so had help when he needed it.

On New Year's Eve, he fell and broke his hip. They got him into surgery on NY Day and repaired it, and he handled the physical recovery well--he was back on his feet surprisingly quickly.

But he was never himself again mentally. At first the docs said "give it time--Parkinson's patients often take a couple of weeks to fully bounce back from anesthesia". Unfortunately, that never happened. His new baseline was about 50% himself, and 50% completely out to lunch, and he switched between each pretty rapidly. He stayed in long-term rehab far longer than he needed to for his physical recovery because of the concerns about his safety (due to his mental confusion) when back home with just his wife to keep an eye on him.

One morning, the nursing staff found him out of his bed and bothering his roommate. They led him back to his bed and tried to get him back into it, but he wasn't having it, and got aggressive trying to avoid it. During the flail he caught one of the aides a glancing blow with his closed fist, and was deemed "too aggressive" to stay at the LTRF. His wife, who was not very savvy in such things, was talked into voluntarily committing him to a psychiatric hospital. She was led to believe he would get focused assessment and treatment for his dementia there, while also still getting physical treatment as well.

That was not the case. In the short time he was there (4 days), he declined both physically and mentally. The clothes he went in with were never seen again, and he was discharged in disposable pajamas. They could not provide documentation on when his existing meds had been administered, but they had started him on a new antipsychotic that his wife had not been informed about. He was not given any PT and was kept under restraint in his bed most of the day. His wife was not permitted to see him until the 3rd day, and it was clear then that his hygiene had been neglected. His confusion and discomfort was extremely evident during that meeting, and he cried and said he wanted to go home--something that would have been unimaginable just a couple of months earlier before he fell.

His wife and daughters immediately tried to get him released after that meeting, but the psych hospital dug in their heels and resisted. They spent several hours arguing about it that same day, but it ultimately took a 2 hour phone call including an elder care attorney the next day to get him released from that place. They were treating him like a source of funds to improve their profits without doing a single thing to improve his quality of life, and in fact taking actions that were ruining it.

I hope your aunt's "safe place" is much better than his psych hospital was.
 
It sounds like your family is on the right track here. If there's another relative in memory care, the ability to have a second relative in the same facility where you know the quality of the care (and, of similar importance, be able to visit two relatives with one drive) is very beneficial. Hopefully they'll have space or otherwise be able to get her in quickly.

While she may not have any children, the fact that there are multiple relatives who can help her care is also beneficial. Doing all this on your own is awful (ask anyone who's done it). But, coordination is also key so that it's understood who has what responsibilities, and also make an effort to make sure it's distributed. It's often times very easy for the one who's the most local to take all the burden. But, it does require coordination.

Best of luck, glad to hear things are moving in the right direction.
 
Jim_R said:
I hope this is true. I don't want to alarm you or assume the worst, but rather help illustrate other possibilities so that you can be aware.

A friend's dad has Parkinson's and suffers from dementia. Around this time last year, it was still mild--he was 95% himself, but occasionally threw a non sequitur into conversation. He could still take care of himself pretty independently, but he lived with his wife so had help when he needed it.

On New Year's Eve, he fell and broke his hip. They got him into surgery on NY Day and repaired it, and he handled the physical recovery well--he was back on his feet surprisingly quickly.

But he was never himself again mentally. At first the docs said "give it time--Parkinson's patients often take a couple of weeks to fully bounce back from anesthesia". Unfortunately, that never happened. His new baseline was about 50% himself, and 50% completely out to lunch, and he switched between each pretty rapidly. He stayed in long-term rehab far longer than he needed to for his physical recovery because of the concerns about his safety (due to his mental confusion) when back home with just his wife to keep an eye on him.

One morning, the nursing staff found him out of his bed and bothering his roommate. They led him back to his bed and tried to get him back into it, but he wasn't having it, and got aggressive trying to avoid it. During the flail he caught one of the aides a glancing blow with his closed fist, and was deemed "too aggressive" to stay at the LTRF. His wife, who was not very savvy in such things, was talked into voluntarily committing him to a psychiatric hospital. She was led to believe he would get focused assessment and treatment for his dementia there, while also still getting physical treatment as well.

That was not the case. In the short time he was there (4 days), he declined both physically and mentally. The clothes he went in with were never seen again, and he was discharged in disposable pajamas. They could not provide documentation on when his existing meds had been administered, but they had started him on a new antipsychotic that his wife had not been informed about. He was not given any PT and was kept under restraint in his bed most of the day. His wife was not permitted to see him until the 3rd day, and it was clear then that his hygiene had been neglected. His confusion and discomfort was extremely evident during that meeting, and he cried and said he wanted to go home--something that would have been unimaginable just a couple of months earlier before he fell.

His wife and daughters immediately tried to get him released after that meeting, but the psych hospital dug in their heels and resisted. They spent several hours arguing about it that same day, but it ultimately took a 2 hour phone call including an elder care attorney the next day to get him released from that place. They were treating him like a source of funds to improve their profits without doing a single thing to improve his quality of life, and in fact taking actions that were ruining it.

I hope your aunt's "safe place" is much better than his psych hospital was.
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As I began to read this post I thought about the medications. In my experience I mentioned above, the Parkinson's medication has a profound effect on the person's mood and physical ability. Too much and she gets "antsy", can't sit down and tries to walk with serious freezing of gait issues. In fact, before we weaned her off several other drugs, which necessitated cutting back the Parkinson's drug Sinemet, too, because it became too strong, she had fallen numerous times breaking bones and detaching her retina. Not enough Sinemet and she has swallowing problems and tight muscles, causing her to lean to one side dramatically. I am the only one at "ground zero" that knows her baseline and can tell the doctors when she needs a medication adjustment. Strangers, like nurses, don't have a clue and only try to pass the meds within one hour of the prescribed time. We found by an LRT (levodopa response test) that Sinemet made the "freezing of gait" problem much worse. Other drugs, like Seroquel, made a horrible negative effect on her, but was used by nursing staff on a PRN basis to control her. It increased her falling, though. I've been a nurse's nightmare since getting involved but my friend has no new broken bones since then, either. Instead of seven meds, she is now on just one, Sinemet, at a very low dose. I hope this is helpful information.
 
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Well, we’re headed to Albuquerque today…not sure what we’ll be able to do since my brother holds the POAs, but we want to be there to advocate for her. She apparently walked out of the ER about 0100 this morning. They’ve got her back, and now have someone with her at all times, according to the person I talked to.
 
BTW, is someone also looking after arrangements for her husband? What was the cause of death?
 
MauleSkinner said:
Well, we’re headed to Albuquerque today…not sure what we’ll be able to do since my brother holds the POAs, but we want to be there to advocate for her. She apparently walked out of the ER about 0100 this morning. They’ve got her back, and now have someone with her at all times, according to the person I talked to.
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There's POA, and then there's medical directives. From a legal perspective, both matter, but the latter is really what is relevant here.

The reality that I have found is that medical professionals understand when someone is in need of help and unable to make their own decisions, and they also understand when you're family who is there to help them. I've never been asked to produce medical directives for my mother, and when my wife (who is not listed) has been the only one with my mother during certain issues, nobody has questioned her, either. While for most of us these circumstances are things we only see a few times in our lives, for the professionals you will see, this is a regular occurrence and they understand.

I wouldn't volunteer that you don't aren't listed on the medical directives (and do you really know you aren't? You may be), just introduce yourself, explain who you are and that you're there to help your aunt and the general family situation, etc. I expect you will be treated well and they'll be glad to have family there.
 
Ted said:
There's POA, and then there's medical directives. From a legal perspective, both matter, but the latter is really what is relevant here.

The reality that I have found is that medical professionals understand when someone is in need of help and unable to make their own decisions, and they also understand when you're family who is there to help them. I've never been asked to produce medical directives for my mother, and when my wife (who is not listed) has been the only one with my mother during certain issues, nobody has questioned her, either. While for most of us these circumstances are things we only see a few times in our lives, for the professionals you will see, this is a regular occurrence and they understand.

I wouldn't volunteer that you don't aren't listed on the medical directives (and do you really know you aren't? You may be), just introduce yourself, explain who you are and that you're there to help your aunt and the general family situation, etc. I expect you will be treated well and they'll be glad to have family there.
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Good points, Ted. Thanks.
 
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Advanced mental decline is a very terrible thing I wish nobody had to experience or witness a loved one go through.
 
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Half Fast said:
BTW, is someone also looking after arrangements for her husband? What was the cause of death?
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He’s at the medical investigator’s office, and beyond that they have prepaid funeral plans. At least that part appears to be under control. We’ll touch base with the appropriate people when we get there, of course.
 
May I add my prayers for you and all concerned. What I also found to be a benefit was keeping a spiral notebook handy with all relevant phone numbers starting on the back page and working forward. Add dates when something important happens. Dealing with my own parents’ decline, it was the only thing that kept me organized.
 
This is first hand knowledge so please understand that I am not being callous, just honest on what will happen.

First thing you need to do if figure out the her insurance. Being in any care facility is gonna run $10-15k a month to start. Insurance may cover all/part/none of it for X days. After that's is self pay and they will come looking for her assets. If there are no assets then she'll be on whatever government care you can find. But they will also be coming for her assets. Yes, they will care for her, but it will most likely cost everything she has if her care is long term.

Second is some family member needs to file for FMLA. Do NOT agree to 'we'll let you take off when you need to'. Tell someone to get FMLA so there is no question that they will take off for family care. FMLA is unpaid so if the family can have multiple members get it that will reduce the load for them.

Lastly, and this is really a hail mary, but talk to a tax professional about protecting assets and how/what to claim on taxes/how to reimburse people if there is an asset pool to use. Basically if there are liquid assets, its better to pay family members for time/travel than simply wait for the gov't to take it all to pay for care. Sounds dishonest, but when the letters come the gov't isn't gonna care. They just want the assets.

Sorry I can't be more specific than this.... but trust me I have already been to this rodeo.
 
I don't know what else to say other that I'm sorry that you're having to go through this and wish you the best.
 
Larry in TN said:
Look for assisted living facilities near you--as close as possible because you will be making many trips there.
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Larry in TN said:
Once she is moved, family must visit often to monitor the care she is receiving.
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Not for memory care, but we went through a similar thing with my father-in-law several years back for an assisted living facility. He was visiting us from his place in Winter Haven when he had a stroke. The first place he ended up was around about 15 miles/25minutes away from us, and not really in a direction we normally travel. Not very far, but we didn't end up visiting and checking in nearly as much as we should. It was a nice facility, but the care wasn't all that good.
\Moved him to a place right around the corner <3miles/5minutes away, and just down the road from our church. The facility was not quite as new and smaller but it was still very nice and the care turned out to be better. More importantly, we could check in and visit much more often.

It was a blessing that he was here when his first big stroke happened. We had some good times with him for a few years and we had lots of out-of-town family stay with us for visits and holidays


Half Fast said:
If possible, have a meal at any place you are considering. That will tell you a lot.
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outstanding suggestion @Half Fast !!!!
 
A late life change in scenery is sometimes detrimental, especially to those with dementia. I have a couple examples where it has worked out well however.

Have thought about in-home care recently. Wonder how the insurance/medicare end of things is taken care of.
 
455 Bravo Uniform said:
Have thought about in-home care recently. Wonder how the insurance/medicare end of things is taken care of.
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One thing to consider in the comparison is that almost all living expenses are covered in an assisted living facility. Rent, utilities, food, etc. and it leaves open the possibility to sell the existing home, and some of the belongings, to help fund the care.

If I can afford it, however, I'd take the in-home care every single time.
 
Larry in TN said:
One thing to consider in the comparison is that almost all living expenses are covered in an assisted living facility. Rent, utilities, food, etc. and it leaves open the possibility to sell the existing home, and some of the belongings, to help fund the care.

If I can afford it, however, I'd take the in-home care every single time.
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This is some very problematic advice. If your parent is bedridden then being at home with in-home care is a WAY better option. Unless you have a WICKED good ultra platinum plan 24/7 care doesn't last long then you either self pay or use Medicare. If you start to use gov't money then they WILL come after their assets. There is a 3 year 'look back' where the gov't can undo asset transfers. So selling a house would be a problem.

If your parents has significant assets then they need to be put into a trust/transferred/gifted BEFORE Medicare is used and triggers the 3 year look back.

One thing most people don't plan for is aging parents. I wish I had done many things before the time for assisted care was needed. I'll be way better prepared when its my turn.
 
Every case is different. My mother-in-law is 102, and she lived with us 23 years after her husband died. In July, she qualified for home hospice, and we soon moved her to an assisted living facility that is very close to our home. She's incontinent and has severe memory loss. Other than her social security, she has no income or assets. With help from the local Aging and Disability office, my wife was able to apply for Medicaid, and we think she'll qualify this month. Fortunately, the facility accepts Medicaid residents. From August through November, my wife was able to use her savings to pay the $5000+ each month, and now everything is gone.
Tomorrow we will meet with the organization that will manage her Medicaid care and hopefully tie up any loose ends.
 
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