I think these are all valid. However, implementation is incredibly hard for folks whose LOs will fight tooth and nail or have many quirks that make straight forward advice almost impossible. For example, there is not tag I can put on my mom. She had 10 pairs of shoes, at least (down from wayyyy more) and we never know what she'll wear. There is no way I can iron on my number on clothes or get her a bracelet. She will run away because the D word or any implied impairment is not ok with her. He judgement is pretty much shot but her ability to fight me for very single little change is not. Including getting a medical POA(let alone durable), which she still refuses to do. Thanks for doing all you can.
Yeah that combo where judgement's gone but fight's still there is brutal, your advice works for logical humans not someone whose brain sees help as attack. Forget tags and bracelets she'll rip off, get Apple AirTag sewn inside coat lining or shoe insole where she can't find it, tracks her when she bolts and she never knows it's there. Medical POA without her signature, talk to elder law attorney about emergency guardianship if she's refusing care she needs and can't understand why, judge can override her refusal when cognitive impairment's documented. Stop trying to get her cooperation 'cause that part of her brain's toast, work around her instead of through her, she doesn't need to agree she needs to be safe.
Guardianship is exactly what I did, with the help of an attorney who knew elder law. The hardest part was waiting nearly 4 months for the process to complete. Once I got guardianship, my sister and her adult children flew out to help me move mom to my house. Parked by the curb, mom refused to get out of the car, my sister sobbing. I knew exactly what to do...start cooking eggs and bacon. I set the table and went out to coax her with the promise of bacon. By the time she took the last bite, she had forgotten her apartment and was checking out her bed in the spare bedroom. As far as she was concerned, this was her new apartment! We had a wonderful time, many happy memories.
Bacon. That's the move nobody writes in the guardianship handbook. Four months of legal process and what actually worked was eggs and a kitchen that smelled like home.
I was lucky, while waiting for guardianship approval, in that the people at her 55+ senior's apartment kept an eye on her. She didn't wander far after a couple of falls scared her pretty bad. She had sold her car and lived in town within walking distance of several businesses she frequented. Folks had my number, and her bank called me once saying mom couldn't remember how to get home. I came right over!
I suppose I could get 20 airtags. Though I make sure she is never unaccompanied for the most part so not my main concern. I do not attempt to get cooperation anymore. That was a rough learning experience. Have spoken to an elder law attorney. Got those emergency plans in place. Though durable POA for someone like her is not a great idea through the law since, in it's not emergency, it takes months, and thousands of dollars that, frankly, seems like a waste when I maneuver in other ways that have been efficient. (I'd rather save it if she should go I to hospice or memory care.) I was speaking directly to your advice. Most of it doesn't work when a person is combative or maybe offer some more nuanced advice? I've seen most of these on other forums.
Good you stopped chasing cooperation, that's the hardest lesson and you already learned it. Twenty AirTags overkill but redundancy's not crazy when someone's a flight risk, one sewn in coat one in shoe means you're covered if she ditches either. Durable POA dragging through courts sucks but at least it's moving, emergency conservatorship's faster if she ends up in hospital or has a crisis where decisions gotta happen now not six months from now.
Appreciate it! Truly. Thanks for putting this up. It would have been so helpful when our...journey? ... started. And you're absolutely right. Redundancies have been part of the norm here.
Hi so I have no practical advice to offer and I wish you strength for this very tough situation.
I’m replying to let you know that - from the writing style I think this is written by an AI.
That’s why it’s not really grappling thoughtfully with the difficulties of your specific situation (mom has a lot of shoes) and keeps saying “an AirTag” in “shoe insole”.
I usually keep it to myself when I spot AI tells but when it’s about medical advice and your mom’s life/health it feels important to say.
May things go as well with you as they can. My best friend’s mom has had dementia for the past decade and I’ve seen how rough it is on the whole family. I would suggest seeking out a Reddit forum dedicated to dementia to get advice from real people who’ve lived through it. xxxxx
Timing changes everything. The same advice hits different at month one versus year three. Children know their parents best. Nobody else is in that house at 2 AM.
Yup. Yup. Yup. All of this. Finally placed my mom in memory care 12 days ago. Hardest thing I’ve ever had to do, but it was her or me and then she’d end up there anyway. Attorneys and a family friend advised me that even with a POA for healthcare I still needed conservatorship. After spending $1000s of dollars I find out they were wrong, so now I’m having to dip into savings. Word really needs to get out there about what to do and when. Your article is a great start. Thank you!
Not the same thing. Medical POA names a person who makes decisions for you when you can't talk. An advance directive is where you write down what you actually want done... ventilator or not, resuscitation or not. You need both because the POA covers whatever the directive didn't anticipate.
We are filling out the very lengthy Kaiser medical directive which addresses decision making when (if) mom can no longer talk or make her wishes known. Maybe it’s a combination? It has to be witnessed or notarized. Also a POLST for the doctor. My brother has a financial POA.
POA gives executor access to LOs records and right/duty to make medical decisions.
Medical directive is about YOU…what, when, how you want things when you die or are dying ( do u want a church funeral, do you want singing & dancing at your funeral, do you want anyone specific with you as you take your last breath, etc)
Good you stopped chasing cooperation, that's the hardest lesson and you already learned it. Twenty AirTags overkill but redundancy's not crazy when someone's a flight risk, one sewn in coat one in shoe means you're covered if she ditches either. Durable POA dragging through courts sucks but at least it's moving, emergency conservatorship's faster if she ends up in hospital or has a crisis where decisions gotta happen now not six months from now.
My mom fought me on the POA, but she was surprisingly docile with her geriatrician's sociologist. She deftly backed my mom into a corner about her objections, "Well, we can revise it later if you change your mind." It came down to my mom having to say, "I just don't want to," and she was too embarrassed to say it to an authority figure. I had a twinge about forcing her to concede, but it was smothered by the relief.
The generation may be almost gone now but my Mom died in 2017 after three + years of zero short term memory and dementia. Those people who came of age during the Depression are as stubborn as can be. It would have been quite the struggle to get her to submit to these excellent helps! I have stories, boy do I.
Three plus years with no short term memory and I bet she still knew exactly how things should be done. That generation. You couldn't talk them into anything that sounded like help. Write those stories down sometime, seriously.
My parents with dementia were born in 1935 and 1936. I write here about my journey with their dementia. Stubborn is one word for it. Six years now with no short term memory. Going into the seventh season. It’s quite a show. 💜
(Please excuse if this is a duplicate. I can’t see my prior attempt to post this.)
Great list! Thank you.
Mind if I offer some lived observations?
My mother was diagnosed with dementia for years. When she finally moved in with us, we found new doctors in her new state of residence. I begged them to help reduce the 18 or 19 pills per day.
Lo and behold, the fewer her meds - the clearer her mind. No surprise. Diagnosed and “treated”for dementia, she had been quite confused in her 80s. Died at 90 - clear as a bell.
My father? We watched 1990’s Parkinson’s medicines claim his cognitive abilities.
Yet, the most startling case was my husband’s. At age 79, he was informally diagnosed with age-related dementia. “We know what it is. (Wink, wink.) Let’s get him a neuropsych evaluation.”
Three practitioners offered us the same message when he showed signs of expressive aphasia. He couldn’t talk much, word find, type, text, email… communicate with anyone other than me.
Years of sleep studies had also illustrated a pattern of extremely poor sleep: awakening himself approximately 100 times per hour.
Well, with the amazing change to Brigham and Women’s/MGH we found it was “all in his head.”
Between their MRIs (at last!), surgery, and rehab, we unearthed what his family believes may have started 60 years prior: a big old brain tumor.
On April 15, 2024, he could not write his name. He wrote A V A M instead of A L A N — and it took him more than two minutes.
Four months later, two days after an 8-hour craniotomy, he still couldn’t talk much. But within 48 hours of surgery, he scribbled out the Gettysburg Address from memory.
His handwriting was stale, and his math was questionable — “four score and 50 years ago” — but he was back. The memory had been there all along. The tumor had been blocking the gate.
During the prior decades, he had slumped into a constant depression, no matter the meds he tried. He lost a lot of adulthood and earning years to something nobody thought to look for.
While we grieve what was lost, we are jubilant for what he — and we — have gained.
So here’s what I’d add to your excellent list: Push for imaging. Don’t accept an informal diagnosis. Over a million Americans are currently living with a brain tumor, and the symptoms can look exactly like dementia, depression, or “just aging.”
Three people in my family presented with what looked like cognitive decline. Three different causes. Only one was actually dementia — and even that was largely medication-induced.
The scan could change everything.
Thanks again for your very helpful piece and this space .
He wrote the Gettysburg Address 48 hours after an 8 hour craniotomy. The memory was there the whole time. Structural imaging is recommended at initial dementia evaluation but primary care skips it routinely. Polypharmacy mimicking cognitive decline is not rare either. A diagnosis without an MRI is not a workup. It's a guess with a billing code.
I did speak to an attorney about my mom and he said the bar for competency is very low and I likely would not win even though my mother was being financially drained and even abused. My mom’s mental issues derive from strokes so there is still a lot of herself left. She refuses to let any of the 3 out 4 children that would actually help her and protect her do so but the one that always harms is trusted completely. There’s no way to work in those parameters.
The bar for incompetency is brutal. You can sit there watching someone get drained by the one person who keeps hurting them and the law says she's competent enough to allow it. That's the whole trap. You already know there's no move here. I wish I had something better than that.
It’s hard to imagine that the spectre of the allopathic ‘medicine’ (which is really a business model to generate customers) from vaccines, to drugs that simply suppress symptoms, isn’t leading to body and brain inflammation and cognitive decline
One super helpful emotional support to really get what you might be in for is COULDNT WE TALK ABOUT SOMETHING MORE PLEASANT by Roz Chast.
Nails so much of the hard and weird.
But a good elder care lawyer is GOLD - dealing with Medicaid, advance directives, POAs - all that stuff. Ours found ways of phrasing and presenting things that dissolved a lot of resistance.
Use their smart devices to snitch on them - auto answer, auto locate, heart monitor, all that stuff - total KGB agent in their pocket or on their wrist. Let big brother be your buddy.
Also, area agencies on aging have some amazing programs - respite, volunteers - and once they go on hospice, medicare is required to offer volunteer support. Can be great.
It's hard, but worth it - and hopefully you will find you are not alone. Don't hide the misery. Many people who have been through it are looking to help (like me).
Hospices are federally required to offer volunteer support under Medicare Conditions of Participation. Most families never get it because nobody tells them it's mandatory and not a favor. If your hospice didn't mention it, ask for it by name. eldercare.acl.gov finds local aging services by zip code.
My mom was really uncooperative as well changing her mind and reversing good decisions and sneaking around trying to get wine and but gold. Total nightmare. For the POA, I got an old friend of hers to witness it which meant she was now comfortable signing, and distracted. I was glad we did tracking because she got out quite a few times and it's very scary when they just disappear. She your of the medical tracker, and didn't want to carry a tag until I got it blinded out by her grand children. Then she wore it for a few weeks before it got lost. Also got her a children's watch that makes voice calls. She loved that and I could control who could call her so we stopped getting the fraudster.
The friend as witness is brilliant. You read her resistance and worked around it instead of through it. Same with the tracker... she didn't refuse tracking, she refused the object. Once the grandkids made it hers, it stopped being medical equipment. Children's watch for call control is one nobody talks about. Blocks fraud, keeps connection, costs nothing. You solved three problems by never making her feel like she had one.
I don’t offer this as a tool to help your situation, but more just an anecdote:
One time when my parents were both still in really good shape, they had a bunch of friends over, and the talk turned to what they would all do in retirement. They had ideas of all buying a house together, etc.
Not sure how it got to this, but at one point one of my mom’s friends said “Well the last thing I would ever want is for my children to try to tell me what to do”
I think about that moment so often when I am with mom. Had to be 15 + years ago
My mother just moved into a memory care facility 1500 miles away from me. I had previously moved her into an assisted living apartment and all of a sudden (like 3 months later), she was diagnosed with dementia. So I just had to fly there to take over all her finances. Thank goodness she had a POA for me. I took away all the credit cards and check books because yes, she was just buying all the things (not even understanding what it was - like subscriptions of skin care from D list celebrities she sees on tv) and sending money to my loser brother because he asked her to (to pay his divorce lawyer 🙄). I had to prevent her from bleeding money so it can go to the facility that cares for her.
The transactions that already went to your brother aren't necessarily gone. Money transferred after a dementia diagnosis is potentially recoverable. Your POA gives you standing to pursue that civilly. Adult Protective Services also takes financial exploitation reports. Most families don't know that part until the account is empty.
If you have a good relationship with her doctor, see if they will help you. My mom was much more likely to listen to her doctor, who was always very nice and respectful to her, than to me. He got her to hand over her car keys without a fight, which was pretty much a miracle. Later, he wrote a legal attestation of mental incompetency, which said that any medical, financial, or legal decisions she made would not be binding. I needed that one because she wanted to marry man in her assisted living facility, who had end stage cancer and was basically trying to get access to my mother's money (which wasn't even that much) so as to leave it to his daughter when he died! (Amazingly, the laws in Washington State said that if she was over 18 and had ID she could get married, even if she had been diagnosed with dementia!)
Most families try to fight every battle themselves when the doctor already has the trust. Smart move letting him handle the keys. And that marriage situation... exactly why the incompetency attestation matters. Good timing on that one.
This is a tough, frustrating disease. Watching your mom, drift away, always waiting for the attitude changes - anger, self righteousness, self-pity. And the way she entertains visitors in my home like it’s her own. They don’t experience what we do 24/7. We can only love them the best we know how and practice patience each and every moment. 💔💔
Great advice for anyone just embarking on this journey. We have walked two family members down this long road and now socialize with a friend who can’t remember what happened an hour ago, but, can still beat us at scrabble and retains her trademark dry sense of humor. This is such a confounding disease full of contradictions and uncertainty.
Day care and respite care are hugely helpful for caregivers. Those who can afford it should look for quality residential memory care and be willing to use it when/if it becomes necessary.
Anyone who knows a caregiver should consider what help they can offer. It can be such a lonely job.
No kidding. I’ve been virtually caring for my mom for years but we’re getting to the bad part, the end. She wasn’t as severe as she has been in the past two weeks. She doesn’t eat hardly, she doesn’t acknowledge me, she’s the last one, I lost my husband in October, I just turned 50, will be a live in full time caregiver in about a week. It’s a lot
Husband in October. Mom not eating, not recognizing you. And now you're moving in. That's not a lot, that's everything. The live in part is where people quietly stop going to their own doctor and don't notice for months. Just... don't be that person.
It is a lot. I’m in the end with my mom too. Looking for help. She’s in assisted living under hospice care, but no one does things right except for me. It’s exhausting.
Hospice nurse was with my mom, trying to bathe her. I walked in the room, my mom said, “There’s all the help I need!” She died within three months, and that was two years ago, but I don’t think I’ll ever stop being exhausted.
I also have 3 people adding another to hire with the money my mother does have to help me. I’m trying to cover all bases before she comes home. I found a hospice that comes 5 days a week. Now I’m making her house adjusted for the new life we both will have with my 3 dogs, 1 was hers but he’s been mine since approximately October when my husband passed. My mom just couldn’t care for him anymore. Just got invisible fence installed yesterday. So I also get to train dogs too lol. This is nuts!! My best friends live across the street which is AMAZING for me. I am thankful for the things that are working out. The bandaid of her being home hasn’t yet been ripped off but it is coming soon. Stay tuned. Let’s see if I go to the nut house or can pull this off. 🙏🏻
If you are the person getting older, look into the different types of long-term care insurance. My husband and I found a plan that required a sizable upfront payment, but if we don’t use it, our heirs ( or surviving spouse) get the principal back. Find a plan that doesn’t control how you spend the money for the most flexibility. Talk to your adult kids about your wishes for care in the eventuality of dementia while you are still healthy, even if they don’t want to face the reality that your body, mind or both will at some point fail. Providing them with a plan and money to carry it out is the best gift you could give kids who love you, even if it means reducing their inheritance.
Update, to all of you who were so encouraging and supportive. She’s home. She’s mostly in bed. She has started eating pretty regularly. Hospice and the aid I hired has helped so much. And I have friends close by who are invaluable. My aunt and her husband are coming in from Cleveland this weekend so I’m going to a party Saturday night. It’s a new normal, can be exhausting but it’s working. She does get scared, Ativan seems to really help. I appreciate all the kind words. It can be really daunting. But I’m also feeling oddly accomplished and as exhausting as it gets to do this, wrangle my 3 dogs and work from home. It happens and there seems to be a rhythm forming. Thank you all ❌⭕️
Update on my mom, to all of you nice people giving me the support needed at the time. I was so scared I couldn’t do this. I had too much going on, I was already dealing with soooo much grief. I was sure I couldn’t pull this off. But I’m here to tell you, it’s the change I needed. I needed to be here. I made some house changes to make it comfortable to all. I moved my things I wanted and needed only. I painted, decorated both of our spaces, installed invisible fence, and here we are it’s the middle of May. She’s doing well for an elderly woman in the last stage of dementia, she eats most days. I try to make her breakfast also most days and she eats dinner here and there. The other day I gave her angel food cake, homemade strawberry sauce and whipped cream for breakfast, she loved it. We take each day as it is. I promise you I do have the UNICORN/GOAT of in home hospice. They are amazing. They are here 5 days a week and then some when needed. I hired an aid who comes every SINGLE morning and sometimes again in the evening. I needed this too. I thought it was all for her but it wasn’t. I needed to be able to check on her. Wash her bedding, clothing, make sure she’s clean and eating well for what she can. My mind is at ease. I didn’t really realize that was so much worse before when I wasn’t here. I was too busy grieving my husband and my dad. Well I was also in fear mode still on top of that. I’m not afraid anymore. Because I know everything that can be done for her, IS BEING DONE. The grieving part has lessened and not as intense. I needed a change. Out of the cocoon I thought I needed, that was wrapped in 30 years of memories. I’ve taken on the next chapter of life and whatever that brings, I’m ok with that. I know that I’m fortunate to be able to do some of the things that helped this transition happen. I am grateful for that. So the moral of this story, is, if you are worried about your parent or loved one. Take the leap. Get the help. Take control of the situation, the parts that you can, take it day by day. And try to remember worrying only steals joy. The small wins, like a dessert for breakfast that is enjoyed is a win.
Here is the ugly truth - YOU will never know when you are “gone.” That is what the author is trying to say. Plan now, because you can’t do it later - because you won’t know. In fact, you will actively resist. I’m an attorney. I have dealt with this personally and professionally. I am 70. I have informed everyone in my family where my documents are. I have granted access to all of them so one “caring” person can’t block access. They can’t change anything without permission from me, or two other(if I am being goofy). You are competent now. Find people you love or trust now. And explain that you understand you will die. You may become incapable of understanding yourself. You may become incompetent. And ask them if they would help you out now, while you have you shit together.
New scams arrive every week. One day I walked into my mom’s office, and the laptop was on and I heard her say to the person on the phone, “I don’t have PayPal, I’ll have to go to the bank.”
She handed me the phone.
I asked the person, “Who am I speaking to?”
He responded, “David” in a heavy Indian accent.
I asked him what he was doing and he told me that he was trying to renew her Norton security for $299.
I could see by the mouse that she had already given him access to the laptop.
I did a hard kill to shut it down, and ended the call.
I am certain that she was scammed out of a lot of money over the years.
There must be a special place in hell for these monsters.
"I don't have PayPal, I'll have to go to the bank." To a scammer that's not confusion, that's a payday. You walked in at the right moment. Most families don't.
Taking care of one parent while the other one slips... that's the blind spot nobody warns you about. You were buried in the one who needed you louder. That's not failure.
Six years you haven't opened that journal. You already know what's in it. And now your mom is where your dad was, and you're supposed to do this again... that's not failure, that's a body that remembers.
I don’t know the answer, but unless a residents phone calls, emails, and mail are monitored - I would say not likely.
My mom now has a phone that only her children can call. One of my sisters became the defacto contact for her doctor appointments, another manages her finances.
If the resident is ‘non compos mentis’, it’s important to have the diagnosis declared by a doctor, because that protects the resident if someone forges their name on a contract, opens an account, etc.
There is a guy on YouTube who does a lot of scamming the scammers (Kitboga). I think his videos are worth a quick scan if you've never heard of him because it helps to know how the scammers work. He created a desktop/laptop program to stop scammers because his grandma was scammed like this. He attempts to torture the scammers (keeping them busy with his nonsense so they're not off scamming real people) and then reports their bank accounts if he can get access to them so they get shut down.
The program is called Seraph Secure - https://www.seraphsecure.com and the basic program is free. If installed on an elderly person's computer it should help to warn them if someone wants to remotely access their computer. There is a paid version where you can set up an alert for yourself if your parent (grandparent, etc) triggers one of these warnings with their activity.
You're welcome. If everyone shared it with others (who them shared it with others) the use of it could explode and help so many people. I just can't stop sharing it when I know how useful it could be for people.
Seraph Secure is desktop only, no iOS yet. But the iPhone already has what you need buried in Screen Time. Set it up the same way you'd lock down a kid's phone. Restrict installs, block sketchy sites, turn on Silence Unknown Callers. Your mom doesn't need to know it's there.
Nearly got caught in the same one, my relative almost convinced me he'd bought the thing and had to give them access to the computer, so handed the phone to me. I realized what was going on before they got access, only because they thought he was on a PC and he has a MAC and they had to call their supervisor. Very close call.
I am so grateful to my mom who signed up to long term care insurance and set up a trust, will, everything at age 70 when she was perfectly healthy. I was assigned POA at that time, added me to her bank accounts and set her End of Life choices (DNR) which we updated as the years progressed. In her late 80’s she had me write down her desires for her funeral and even picked the mortuary. She started emptying her closets a few years early. What blessings for me! I’m going to start soon for my daughter.
That was a responsible loving mom who planned so that you would have all the info necessary when she can no longer handle things. As difficult as I am sure it still was emotionally, yours was the ideal. May you have many many more years and your planning will also help your daughter and family. Bless you!!
Just a note, if you go into a bank branch (e.g. to add someone to access a bank account, or to change contact info) and the bank person types a bunch of stuff in, *you do not know* what they've typed in, and you may be given no written record of it. This seems dumb.)
Three dogs and an invisible fence. Hospice lined up. Friends across the street. You're not winging this and that already puts you ahead of most people I've seen walk into this. It's gonna hit different once she's actually home but you know that already.
My dad had that. He died six months ago today. No one believed me that he had a problem. The stupid doctor he had kept insisting there was no issue. But yet it was right there on his death certificate. Not only is dementia devastating, but not being believed is also very devastating. I wish someone would’ve listened.
Six months. You kept saying something was wrong and his doctor kept brushing you off. Then they write it on the death certificate like it was obvious the whole time. You weren't the one who failed to listen.
Yes, that doctor most definitely wasn’t listening. But I should’ve clarified – the doctor that signed the death certificate was different than this woman that was denying at the whole time. About a month after his death, that stupid doctors office called me to see how he was doing. I told them to let the doctor know that he had died and that by the way, the cause of death was dementia. It might be childish, but I had to get the last word in to let her know she had been willfully blind. Alive or dead, I wasn’t going to let anyone disrespect my dad.
That's not childish. That's the only performance review that doctor will ever get for missing your father's diagnosis. The system doesn't send report cards. Families do. You made sure the word "dementia" landed on her desk attached to a name she was supposed to be treating. That call was the one piece of accountability the system doesn't build in.
I went to multiple doctors with my dad when I saw signs in his late 80s, but they all completely dismissed my concerns because he knew the year and the president. Until he fell and spent time in a hospital and folks saw him long enough and frequently enough that he couldn’t fake it. It’s maddening. I feel for you.
My Mom was gregarious and charming to visiting doctors. They didn't stay long enough to have to repeat the entire conversation 20 times end to end, so they thought she was fine!
Wow. Thank you for that! That’s exactly what happened and it was so frustrating. Nobody believes you because she’s so good at faking it. The original gaslighting.
Sou is lime my Mom. Charmed the socks off her Dr ever visit. And we caught her washing he clothes with coffee grounds and spraying Raid on her legs for bug spray, 2 hit and runs with the car. Maddening. She's fine!
Year and president. That's the whole screening. Two quiz answers and the chart says he's fine, go home. You kept dragging him back anyway. Took a fracture to make them sit with him longer than a waiting room allows. That's not a gap in the system, that's the system.
My mom has primary progressive aphasia ftd. We had a great neurologist who took the time to explain why it’s different than Alzheimer’s. Language was the first to go, then large motor physical decline , then complex reasoning. People place and time are the last to go with her kind of dementia. While it’s a blessing that she will know me to the end, it’s heartbreaking to watch her try so hard to communicate her wants and needs. Frustration and depression are real. Looking at next options for care as in home 24 hour is $43 an hour in my area versus 1/2 that for assisted living/ memory care. My Dad died two weeks ago( that’s what kept her home until now) so it’s all about setting up widows benefits and figuring out finances going forward. The cash bleed is huge, pressure is real even with a DPOA. Not to mention my life on hold until we have this settled. I haven’t slept in my own home for more than 4 months as my Father declined to his passing, I don’t see me anywhere but living with my Mother for at least 3 more months. You have to be more than prepared for your life to come last in order to keep your parent safe and secure
Four months not sleeping in your own home, and you're still making the next call. Most memory care is built around Alzheimer's, orientation loss, wandering. Your mom's PPA runs opposite, she knows where she is but can't tell staff what hurts. AFTD says it directly: Alzheimer's strategies misapplied to FTD usually backfire. Before comparing $43/hr vs facility rates ask how many FTD residents they have and whether anyone's trained in augmentative communication. Wrong fit costs more than the rate spread. Widow's benefits can't be filed online. Phone: 1-800-772-1213. At full retirement age she may get 100% of your dad's check. Call now, SSA doesn't rush.
I'm so sorry. You srd not yjd only one. I'm feeling like I'm going crazy because I've lived with Mom for decades to provide in home care we cannot overwise afford. So more than literally anyone else on the planet I know she has been slipping for the last couple of years at least, but she can fake it with everyone for long enough. Like the ten minute weekly Zoom call with my brother, or the fifteen minute visit with the doctor, who believes me but "ethically" can do anything until she sees it in a visit.
It's so incredibly frustrating to know there is something wrong with your parent, but everyone else dismisses your concerns because*they* don't see what you see.
You're not going crazy. They call it showtiming. She pulls it together for the doctor, holds it for fifteen minutes, and everyone walks out thinking she's fine. You're the one seeing the other twenty three hours. That's the actual assessment. Not a ten minute Zoom with your brother.
Wow, I am so sorry and I can really relate to this. I understand the feeling of going crazy. But you’re not crazy, you know what you know. It’s heartbreaking, I know. Thinking of you. 💜
Six months and nobody's said sorry yet, right. They won't. You clocked it before his doctor did, and the death certificate is basically the system going "oh yeah, she was right" to a room that's already empty. That part doesn't get easier, it just gets quieter.
I live in Washington State and we have an option here called VSED = Voluntary Stopping Eating and Drinking. I have a provision in my will that if I develop Dementia and cannot recognize any of my family they are to begin the VSED process. Takes about a week-10 days. Can’t imagine living years and years in a vegetative state. I learned a lot about dying when my husband was sick. Ultimately he chose the Death with Dignity option. It’s an important topic to discuss with your family. . . .the ‘what if’s’.
Good that it's on paper. Problem is, no court in the U.S. has ruled a VSED directive has to be honored. Facilities refuse them. Even clean ones. End of Life Washington and Northwest Justice Project released a dementia-specific version that closes more gaps than a will clause ever will. If yours is just a line in a general document... it's a wish, not an instruction.
I'm going to look into that. Glad you mentioned. I'm in WA as well. My understanding is that dementia doesn't fall under the death with dignity. Dementia is not considered a terminal illness?? And the patient can't make that call at the end. I also wonder about the VSED. Does that mean someone physically withholds? In which case it's not voluntary. I don't know...I'm just thinking out loud. My MIL has severe dementia. She hasn't known us for a few yrs & yet she eats well.
Yeah, dementia doesn't qualify. Not terminal within six months, and by the time it might be, they can't consent anymore. That's the catch, it locks from both sides. VSED through a directive means someone else decides to stop offering food. And here's where it gets ugly... your MIL doesn't know you but she eats. The document says stop. Her body doesn't agree. Nobody's solved that one yet, not in any state.
My experience is that many in dementia forget to eat and/or have difficulty eating and digesting so it would seem a natural course of events (especially when written into a will). Surprised your MIL still eats well. But everyone can be so different.
No dementia is not an illness that qualifies for the Death with Dignity because u have to be of sound mind to decide. Look for more info on the site: End of Life Washington about VSED.
Thank you for this! Didn’t know it existed. I lost my mom to dementia while her affairs weren’t in order. It was a MESS and I want to save my kids all the guilt and pain and make all those decisions now.
Thanks for mentioning the VSED option. I'll root around in the state code where I am, and even if there's no provision in state law, I can tinker with my advance directives.
This is one of the most usefully blunt dementia pieces I’ve seen in a while.
The “$405,000 and seven years” line lands because it names what families quietly discover: dementia isn’t just a diagnosis, it’s an operations crisis… legal authority, medication safety, wandering risk, finances, driving, home hazards, and the slow erosion of the caregiver’s own body and mind. Too many people get handed pamphlets when what they actually need is a field manual. 
I also really appreciate the realism in your comment thread: that painful combo where judgment is impaired but the fight remains intact. In clinic we see this constantly, reasoning with the disease rarely works, so safety often has to be built around the person (redundancy, environmental design, contingency plans), not negotiated through agreement. 
If I could add one clinician note for readers: the goal isn’t “doing everything perfectly.” It’s getting the high-leverage pieces in place early (authority, safety, supervision, respite) so you don’t end up making irreversible decisions in an ER hallway at 2am.
Thank you for writing the thing families wish someone had told them before the first crisis.
A field manual rather than a pamphlet!!! So true! Plus we caregivers need to be heard and responded to not dismissed with…dementia… and they go about their merry way.
My life for 15 years. Dad- vascular dementia.. passed in 2022. Mom/ now with Lewy Body Parkinson’s. I lived with them as sole care giver 10 years while working full time remote. Brought in Visiting Angels do I could work.. not lose my career. Then had to move them to assisted living then memory care. Grateful we took care of POA while they were still cognitively able and - they were proactive 18 years ago to create a trust and put me as POA if they became cognitively impaired. I was fortunate that my parents thought ahead.. and we have an elder attorney. Now.. she can barely talk.. sleeps most days through my visits.. on hospice. Long journey. Long goodbye for both. 🙏💕
I would have been so grateful had my mother been as proactive but she refused to be personally responsible in her pre- dementia life which made everything impossible later. 🙏🏼💕 pleased to hear at least you had that proactive responsible loving parent because i understand how difficult the long journey and decline now already is for you.
Pretty good! I would add to start visiting memory care places before it’s an emergency and you have to find one practically overnight.
Also. Secure all the paperwork! My dad put his POA in a random file folder and we only found it by accident and literally a few days before the police and a social worker showed up because the bank called them since he kept taking out so much money and was so confused.
Oh and the car keys. Take them away somehow. (Sorry if you already included that one!) So hard but so necessary.
I knew a woman who was so proactive, she had been dx with lewey body dementia and did her own research and shopping for where she was going to go, sold her home and submitted all her financials to her chosen facility: starting with asst living, then to next phase to memory care nursing home (all the same facility with EMOLOYEES not contractors - she emphasized and recommended to the rest of her friends. ). By the time she had moved she had about six months and decline started rapidly. Her son in another state was kept in the loop and she ultimately had made the hardest decisions and transitions herself saving him years of difficulties and sorrows, financial depletion.
That is remarkable. She must have had such an early diagnosis so she could plan. I think that’s unusual. For my mom, she has a gazillion TIAs, and we ignored and explained away her odd behavior until things were dire. We were inexperienced and didn’t want to accept it. For my dad, his came on suddenly, and we were not prepared - BUT HE WAS. That’s why we have POA, healthcare proxy, life insurance, Medicare B, house papers in order, etc.
Then again, taking away his car and his wine - that’s an entirely different story. And then a catastrophic fall. That’s why I really appreciate this @Vance Frost post. Strong opinions, strongly stated, and they are correct. We got lucky but we were not prepared.
Your dad did the one thing almost nobody does... got the paperwork done while he still could. Car and wine, though. Yeah. That part's not logistics, that's taking something from a person who still feels like a person. Harder than any form you'll ever sign. Glad it landed. Thanks for being here.
My aunt was diagnosed with Lewy body dementia relatively late in the process. One of the symptoms of Lewy Body Dementia is paranoia, so for years she refused to even get a diagnosis or do any other paperwork to help her out (she was suspicious and paranoid for years looking back now). To make a long story short, a family friend moved her back to Argentina, where she was from, because the care was a fifth of the cost than it is here in the states and of course she didn’t qualify for Medicaid. And thank goodness she had this option.
The paranoia that kept her from signing anything wasn't stubbornness. That's a core feature of Lewy body and it often shows up before anyone has a diagnosis to point to. Standard antipsychotics are contraindicated in LBD and can trigger a neuroleptic crisis. Memory care facilities get that wrong regularly. If she's there now, ask what they're using for behavioral symptoms.
My friend was missing an entire part of her brain before she was dx. With intense brain neuroplastic therapies she was able to recover her driver license and her administrative faculties just long enough, less than a year, to accomplish her decision and move. The extra stress then took its toll. She had a therapy dog trained to keep routine and wake her should he notice variations in her sleep, breathing. She said he would outlast her, then he got a cancer and she was unable to be fully responsible for him. She was scared to walk him and he needed it plus he was still doing his job. She couldn’t reason it out. The lewey body progressed quickly at that point. Very sad but i admired her strength to come back after brain loss/damage and retrain other parts of her brain to be functional. And to be so focused on her self direction for her last years and known decline. 🙏🏼
Ki, this isn't a story about decline. It's a story about someone who tore a stretch of real life back out of the disease and spent every bit of that bought time the way she chose, not just running out the clock.
The dog is the part that grabs me. He was supposed to outlast her. Instead he went down while he was still doing his job, and she couldn't be the one to pull him through it. That's the cruelty of Lewy body, the reasoning cuts out exactly when you need it most. She saw what was coming and still steered her own last years. Most people break before they get there. She didn't.
Thank you for bringing her back for a minute. Things like that should be said out loud, if only so we know they happen.
I wish I could have read this in 2003 when I supported my mom through a ten year dementia journey. We didn’t have AirTags then but so so so much of this rings true for me. Thank you for sharing it.
We didn’t try air tags, we tried to get my mom to wear a bracelet or necklace that she could press if in distress or lost - 3G cellular eventually was phased out. But she refused to wear because they “depressed” her.
You gave the harsh reality of this despicable disease. My husband of 57 years has been on this path for 6 years. He doesn’t wander yet. We did all the financial stuff years ago, but it’s so heartbreaking to watch that light in his eyes fade. He’s still here but for shorter periods. He’s my life and we will keep holding hands and walking through together.
Our journey is similar. Because of family history, we saw this coming for my husband. We're lucky to have the resources to plan to age in place. And he was always amenable to the necessary steps we had to enact for his safety. He voluntarily stopped driving. He agreed with all the legal requirements. Everything was going along swimmingly until I became very ill. Now my adult son has moved in with us. We are able to pay him to do this for us, and we certainly could not continue our planned path without him. We do also hire other people for respite care periodically. My husband is near the end of his journey, and I seem to be getting better instead of worse.
If there is any advice, and I'm hesitant to call it that, it would be to each day remember the love that you have for this person. Then it all becomes easier. But there is nothing easy about it.
There is great satisfaction in knowing that he knows that he is loved and that we give in the best care possible.
You planned, he cooperated, and it still almost fell apart when you got sick. That's the part nobody builds into the plan, what happens when the caregiver goes down. Your son stepping in isn't just family loyalty, it's the backup system most families don't have and can't afford. Glad you're getting better. The last stretch is the hardest one and you're doing it right.
As a Brit the one thing I wish I had gotten from my brother before he lost capacity was Power of Attorney. He wouldn’t do it and then it was too late. I’m 8 months into the process of Guardianship and it’s still not settled. It’s also between £3000-5000. PoA is much cheaper.
I’m late finding this post, but just wanted to say you have my sympathies. My Mum did the LPA for health and welfare, but refused the financial one. Going through the deputyship process was gruelling and once you have it there’s a large amount of reporting especially in year one. I am evangelical about people doing LPAs now
The health LPA your mum signed took one appointment. The financial one she refused turned into deputyship, annual OPG fees, and year one reporting that exists because the court doesn't trust families the way a signed document would have. She made a choice about control. You lived with the paperwork.
English law does not recognise a durable power of attorney. When the person loses cognitive capacity, a court must get involved. I had a durable PoA executed under NYS law by my wife in my favour but it was rejected by a British jurisdiction. My only recourse was to hire lawyers there and undertake the expensive court process.
English law does have the concept of an LPA or lasting power of attorney. It must be done before capacity is lost though, otherwise you go to the Court of Protection (which doesn’t involved an actual court visit just endless forms and waiting)
The Court of Protection isn't an inconvenience. It's a 16 week queue while your parent needs someone to sign for their care today. The LPA costs £82 to register. Deputyship costs that plus annual OPG supervision fees for as long as they're alive. The forms aren't the problem. The timing is.
DURABLE POA. And keep them as current as possible!! My mother gave me her POA from the 1960s that wasn’t durable and she refused to update anything even when she was still able to, in the 1990s when my dad died. So by 2023, she in her early 90s, is failing, aggressive, combative and empowered by self hatred and a lifetime of resentments that she projected on myself and my husband, her mental issues exacerbated because memory and social masks have failed and what i had - the POWER OF ATTY, her will and medical directive - were over 60 years old and virtually useless.
When Mom was first diagnosed, my brother and I did 1 thing right. We agreed that no matter what, we were going to be better friends at the end of the journey than we were at the beginning.
That became our prime directive. We were often both stressed and overwhelmed but we took a breath and remembered our goal and got back on the same page every time. In the end, we gave our mom the best care we were able to provide and we still love each other.
My me, the POA was invaluable as my dad slipped into dementia. I had him go to a lawyer a few years before. He eventually ended up in a nursing home for four months. He was awful with money, but I had taken control of his account a few months before he died. And you’re right, the cost for the nursing home was over $8000 a month…and it wasn’t a luxury home. Great suggestions here!
I think these are all valid. However, implementation is incredibly hard for folks whose LOs will fight tooth and nail or have many quirks that make straight forward advice almost impossible. For example, there is not tag I can put on my mom. She had 10 pairs of shoes, at least (down from wayyyy more) and we never know what she'll wear. There is no way I can iron on my number on clothes or get her a bracelet. She will run away because the D word or any implied impairment is not ok with her. He judgement is pretty much shot but her ability to fight me for very single little change is not. Including getting a medical POA(let alone durable), which she still refuses to do. Thanks for doing all you can.
Yeah that combo where judgement's gone but fight's still there is brutal, your advice works for logical humans not someone whose brain sees help as attack. Forget tags and bracelets she'll rip off, get Apple AirTag sewn inside coat lining or shoe insole where she can't find it, tracks her when she bolts and she never knows it's there. Medical POA without her signature, talk to elder law attorney about emergency guardianship if she's refusing care she needs and can't understand why, judge can override her refusal when cognitive impairment's documented. Stop trying to get her cooperation 'cause that part of her brain's toast, work around her instead of through her, she doesn't need to agree she needs to be safe.
Guardianship is exactly what I did, with the help of an attorney who knew elder law. The hardest part was waiting nearly 4 months for the process to complete. Once I got guardianship, my sister and her adult children flew out to help me move mom to my house. Parked by the curb, mom refused to get out of the car, my sister sobbing. I knew exactly what to do...start cooking eggs and bacon. I set the table and went out to coax her with the promise of bacon. By the time she took the last bite, she had forgotten her apartment and was checking out her bed in the spare bedroom. As far as she was concerned, this was her new apartment! We had a wonderful time, many happy memories.
Bacon. That's the move nobody writes in the guardianship handbook. Four months of legal process and what actually worked was eggs and a kitchen that smelled like home.
Good diversion prevents a lot of misery.
Smart move!
I was lucky, while waiting for guardianship approval, in that the people at her 55+ senior's apartment kept an eye on her. She didn't wander far after a couple of falls scared her pretty bad. She had sold her car and lived in town within walking distance of several businesses she frequented. Folks had my number, and her bank called me once saying mom couldn't remember how to get home. I came right over!
Lovely tae read a happy memory of this often devastating time.
Well done, I'm very glad ye have them.
I suppose I could get 20 airtags. Though I make sure she is never unaccompanied for the most part so not my main concern. I do not attempt to get cooperation anymore. That was a rough learning experience. Have spoken to an elder law attorney. Got those emergency plans in place. Though durable POA for someone like her is not a great idea through the law since, in it's not emergency, it takes months, and thousands of dollars that, frankly, seems like a waste when I maneuver in other ways that have been efficient. (I'd rather save it if she should go I to hospice or memory care.) I was speaking directly to your advice. Most of it doesn't work when a person is combative or maybe offer some more nuanced advice? I've seen most of these on other forums.
Good you stopped chasing cooperation, that's the hardest lesson and you already learned it. Twenty AirTags overkill but redundancy's not crazy when someone's a flight risk, one sewn in coat one in shoe means you're covered if she ditches either. Durable POA dragging through courts sucks but at least it's moving, emergency conservatorship's faster if she ends up in hospital or has a crisis where decisions gotta happen now not six months from now.
Appreciate it! Truly. Thanks for putting this up. It would have been so helpful when our...journey? ... started. And you're absolutely right. Redundancies have been part of the norm here.
Hi so I have no practical advice to offer and I wish you strength for this very tough situation.
I’m replying to let you know that - from the writing style I think this is written by an AI.
That’s why it’s not really grappling thoughtfully with the difficulties of your specific situation (mom has a lot of shoes) and keeps saying “an AirTag” in “shoe insole”.
I usually keep it to myself when I spot AI tells but when it’s about medical advice and your mom’s life/health it feels important to say.
May things go as well with you as they can. My best friend’s mom has had dementia for the past decade and I’ve seen how rough it is on the whole family. I would suggest seeking out a Reddit forum dedicated to dementia to get advice from real people who’ve lived through it. xxxxx
Yeah, I replied a while ago. I'm terrible at spotting AI! I don't mind responding to bots, even those I met through Reddit. : )
Airtags are huge... as in literally too big to hide on them. Is there a better brand?
Timing changes everything. The same advice hits different at month one versus year three. Children know their parents best. Nobody else is in that house at 2 AM.
Yup. Yup. Yup. All of this. Finally placed my mom in memory care 12 days ago. Hardest thing I’ve ever had to do, but it was her or me and then she’d end up there anyway. Attorneys and a family friend advised me that even with a POA for healthcare I still needed conservatorship. After spending $1000s of dollars I find out they were wrong, so now I’m having to dip into savings. Word really needs to get out there about what to do and when. Your article is a great start. Thank you!
Is a medical POA the same as an advanced medical directive?
Not the same thing. Medical POA names a person who makes decisions for you when you can't talk. An advance directive is where you write down what you actually want done... ventilator or not, resuscitation or not. You need both because the POA covers whatever the directive didn't anticipate.
We are filling out the very lengthy Kaiser medical directive which addresses decision making when (if) mom can no longer talk or make her wishes known. Maybe it’s a combination? It has to be witnessed or notarized. Also a POLST for the doctor. My brother has a financial POA.
It is NOT the same.
POA gives executor access to LOs records and right/duty to make medical decisions.
Medical directive is about YOU…what, when, how you want things when you die or are dying ( do u want a church funeral, do you want singing & dancing at your funeral, do you want anyone specific with you as you take your last breath, etc)
I do not believe it’s the same.
Good you stopped chasing cooperation, that's the hardest lesson and you already learned it. Twenty AirTags overkill but redundancy's not crazy when someone's a flight risk, one sewn in coat one in shoe means you're covered if she ditches either. Durable POA dragging through courts sucks but at least it's moving, emergency conservatorship's faster if she ends up in hospital or has a crisis where decisions gotta happen now not six months from now.
My mom fought me on the POA, but she was surprisingly docile with her geriatrician's sociologist. She deftly backed my mom into a corner about her objections, "Well, we can revise it later if you change your mind." It came down to my mom having to say, "I just don't want to," and she was too embarrassed to say it to an authority figure. I had a twinge about forcing her to concede, but it was smothered by the relief.
The generation may be almost gone now but my Mom died in 2017 after three + years of zero short term memory and dementia. Those people who came of age during the Depression are as stubborn as can be. It would have been quite the struggle to get her to submit to these excellent helps! I have stories, boy do I.
Three plus years with no short term memory and I bet she still knew exactly how things should be done. That generation. You couldn't talk them into anything that sounded like help. Write those stories down sometime, seriously.
I have written some. Working on putting them all together!
My parents with dementia were born in 1935 and 1936. I write here about my journey with their dementia. Stubborn is one word for it. Six years now with no short term memory. Going into the seventh season. It’s quite a show. 💜
(Please excuse if this is a duplicate. I can’t see my prior attempt to post this.)
Great list! Thank you.
Mind if I offer some lived observations?
My mother was diagnosed with dementia for years. When she finally moved in with us, we found new doctors in her new state of residence. I begged them to help reduce the 18 or 19 pills per day.
Lo and behold, the fewer her meds - the clearer her mind. No surprise. Diagnosed and “treated”for dementia, she had been quite confused in her 80s. Died at 90 - clear as a bell.
My father? We watched 1990’s Parkinson’s medicines claim his cognitive abilities.
Yet, the most startling case was my husband’s. At age 79, he was informally diagnosed with age-related dementia. “We know what it is. (Wink, wink.) Let’s get him a neuropsych evaluation.”
Three practitioners offered us the same message when he showed signs of expressive aphasia. He couldn’t talk much, word find, type, text, email… communicate with anyone other than me.
Years of sleep studies had also illustrated a pattern of extremely poor sleep: awakening himself approximately 100 times per hour.
Well, with the amazing change to Brigham and Women’s/MGH we found it was “all in his head.”
Between their MRIs (at last!), surgery, and rehab, we unearthed what his family believes may have started 60 years prior: a big old brain tumor.
On April 15, 2024, he could not write his name. He wrote A V A M instead of A L A N — and it took him more than two minutes.
Four months later, two days after an 8-hour craniotomy, he still couldn’t talk much. But within 48 hours of surgery, he scribbled out the Gettysburg Address from memory.
His handwriting was stale, and his math was questionable — “four score and 50 years ago” — but he was back. The memory had been there all along. The tumor had been blocking the gate.
During the prior decades, he had slumped into a constant depression, no matter the meds he tried. He lost a lot of adulthood and earning years to something nobody thought to look for.
While we grieve what was lost, we are jubilant for what he — and we — have gained.
So here’s what I’d add to your excellent list: Push for imaging. Don’t accept an informal diagnosis. Over a million Americans are currently living with a brain tumor, and the symptoms can look exactly like dementia, depression, or “just aging.”
Three people in my family presented with what looked like cognitive decline. Three different causes. Only one was actually dementia — and even that was largely medication-induced.
The scan could change everything.
Thanks again for your very helpful piece and this space .
He wrote the Gettysburg Address 48 hours after an 8 hour craniotomy. The memory was there the whole time. Structural imaging is recommended at initial dementia evaluation but primary care skips it routinely. Polypharmacy mimicking cognitive decline is not rare either. A diagnosis without an MRI is not a workup. It's a guess with a billing code.
I did speak to an attorney about my mom and he said the bar for competency is very low and I likely would not win even though my mother was being financially drained and even abused. My mom’s mental issues derive from strokes so there is still a lot of herself left. She refuses to let any of the 3 out 4 children that would actually help her and protect her do so but the one that always harms is trusted completely. There’s no way to work in those parameters.
The bar for incompetency is brutal. You can sit there watching someone get drained by the one person who keeps hurting them and the law says she's competent enough to allow it. That's the whole trap. You already know there's no move here. I wish I had something better than that.
This is incredibly helpful, practical information.
The only thing I would add is try getting them off all their medications.
Apparently, it’s surprisingly often it’s actually their medications or their combination, that create dementia-like symptoms.
It’s hard to imagine that the spectre of the allopathic ‘medicine’ (which is really a business model to generate customers) from vaccines, to drugs that simply suppress symptoms, isn’t leading to body and brain inflammation and cognitive decline
Articulate, necessary, helpful.
Get used to no-wins. Perseverance is the win.
One super helpful emotional support to really get what you might be in for is COULDNT WE TALK ABOUT SOMETHING MORE PLEASANT by Roz Chast.
Nails so much of the hard and weird.
But a good elder care lawyer is GOLD - dealing with Medicaid, advance directives, POAs - all that stuff. Ours found ways of phrasing and presenting things that dissolved a lot of resistance.
Use their smart devices to snitch on them - auto answer, auto locate, heart monitor, all that stuff - total KGB agent in their pocket or on their wrist. Let big brother be your buddy.
Also, area agencies on aging have some amazing programs - respite, volunteers - and once they go on hospice, medicare is required to offer volunteer support. Can be great.
It's hard, but worth it - and hopefully you will find you are not alone. Don't hide the misery. Many people who have been through it are looking to help (like me).
Hospices are federally required to offer volunteer support under Medicare Conditions of Participation. Most families never get it because nobody tells them it's mandatory and not a favor. If your hospice didn't mention it, ask for it by name. eldercare.acl.gov finds local aging services by zip code.
My mom was really uncooperative as well changing her mind and reversing good decisions and sneaking around trying to get wine and but gold. Total nightmare. For the POA, I got an old friend of hers to witness it which meant she was now comfortable signing, and distracted. I was glad we did tracking because she got out quite a few times and it's very scary when they just disappear. She your of the medical tracker, and didn't want to carry a tag until I got it blinded out by her grand children. Then she wore it for a few weeks before it got lost. Also got her a children's watch that makes voice calls. She loved that and I could control who could call her so we stopped getting the fraudster.
The friend as witness is brilliant. You read her resistance and worked around it instead of through it. Same with the tracker... she didn't refuse tracking, she refused the object. Once the grandkids made it hers, it stopped being medical equipment. Children's watch for call control is one nobody talks about. Blocks fraud, keeps connection, costs nothing. You solved three problems by never making her feel like she had one.
I don’t offer this as a tool to help your situation, but more just an anecdote:
One time when my parents were both still in really good shape, they had a bunch of friends over, and the talk turned to what they would all do in retirement. They had ideas of all buying a house together, etc.
Not sure how it got to this, but at one point one of my mom’s friends said “Well the last thing I would ever want is for my children to try to tell me what to do”
I think about that moment so often when I am with mom. Had to be 15 + years ago
Good luck with mom. We all see you
My mother just moved into a memory care facility 1500 miles away from me. I had previously moved her into an assisted living apartment and all of a sudden (like 3 months later), she was diagnosed with dementia. So I just had to fly there to take over all her finances. Thank goodness she had a POA for me. I took away all the credit cards and check books because yes, she was just buying all the things (not even understanding what it was - like subscriptions of skin care from D list celebrities she sees on tv) and sending money to my loser brother because he asked her to (to pay his divorce lawyer 🙄). I had to prevent her from bleeding money so it can go to the facility that cares for her.
The transactions that already went to your brother aren't necessarily gone. Money transferred after a dementia diagnosis is potentially recoverable. Your POA gives you standing to pursue that civilly. Adult Protective Services also takes financial exploitation reports. Most families don't know that part until the account is empty.
If you have a good relationship with her doctor, see if they will help you. My mom was much more likely to listen to her doctor, who was always very nice and respectful to her, than to me. He got her to hand over her car keys without a fight, which was pretty much a miracle. Later, he wrote a legal attestation of mental incompetency, which said that any medical, financial, or legal decisions she made would not be binding. I needed that one because she wanted to marry man in her assisted living facility, who had end stage cancer and was basically trying to get access to my mother's money (which wasn't even that much) so as to leave it to his daughter when he died! (Amazingly, the laws in Washington State said that if she was over 18 and had ID she could get married, even if she had been diagnosed with dementia!)
Most families try to fight every battle themselves when the doctor already has the trust. Smart move letting him handle the keys. And that marriage situation... exactly why the incompetency attestation matters. Good timing on that one.
This is a tough, frustrating disease. Watching your mom, drift away, always waiting for the attitude changes - anger, self righteousness, self-pity. And the way she entertains visitors in my home like it’s her own. They don’t experience what we do 24/7. We can only love them the best we know how and practice patience each and every moment. 💔💔
Great advice for anyone just embarking on this journey. We have walked two family members down this long road and now socialize with a friend who can’t remember what happened an hour ago, but, can still beat us at scrabble and retains her trademark dry sense of humor. This is such a confounding disease full of contradictions and uncertainty.
Day care and respite care are hugely helpful for caregivers. Those who can afford it should look for quality residential memory care and be willing to use it when/if it becomes necessary.
Anyone who knows a caregiver should consider what help they can offer. It can be such a lonely job.
And for practical guidance about the brain in dementia & non-medical intervention & person-centered care, check out everything by Teepa Snow.
https://teepasnow.com/
Bookmarking this for when I'm losing my sh*t. THANK YOU
Hope you don't need it but it's there when you do.
No kidding. I’ve been virtually caring for my mom for years but we’re getting to the bad part, the end. She wasn’t as severe as she has been in the past two weeks. She doesn’t eat hardly, she doesn’t acknowledge me, she’s the last one, I lost my husband in October, I just turned 50, will be a live in full time caregiver in about a week. It’s a lot
Husband in October. Mom not eating, not recognizing you. And now you're moving in. That's not a lot, that's everything. The live in part is where people quietly stop going to their own doctor and don't notice for months. Just... don't be that person.
It is a lot. I’m in the end with my mom too. Looking for help. She’s in assisted living under hospice care, but no one does things right except for me. It’s exhausting.
We found an inexpensive aide we hired on our own-paid her to stay w/mom even at the facility because as you noted-they never do anything right!
Yes it is. 🙏🏻
Hospice nurse was with my mom, trying to bathe her. I walked in the room, my mom said, “There’s all the help I need!” She died within three months, and that was two years ago, but I don’t think I’ll ever stop being exhausted.
Oh my. I am so sorry. Can you hire some help?
Yes and bringing Hospice in as well. Just trying to make a lot of allowances for any of the things that could happen.
Sorry for you and your mom. Definitely setup some respite care to give yourself a break and time for your own care.
I also have 3 people adding another to hire with the money my mother does have to help me. I’m trying to cover all bases before she comes home. I found a hospice that comes 5 days a week. Now I’m making her house adjusted for the new life we both will have with my 3 dogs, 1 was hers but he’s been mine since approximately October when my husband passed. My mom just couldn’t care for him anymore. Just got invisible fence installed yesterday. So I also get to train dogs too lol. This is nuts!! My best friends live across the street which is AMAZING for me. I am thankful for the things that are working out. The bandaid of her being home hasn’t yet been ripped off but it is coming soon. Stay tuned. Let’s see if I go to the nut house or can pull this off. 🙏🏻
Man, you are one awesome warrior. I'm humbled and impressed.
Oh
And for sure you will pull it off.
Ditto that 👆👆👆
If you are the person getting older, look into the different types of long-term care insurance. My husband and I found a plan that required a sizable upfront payment, but if we don’t use it, our heirs ( or surviving spouse) get the principal back. Find a plan that doesn’t control how you spend the money for the most flexibility. Talk to your adult kids about your wishes for care in the eventuality of dementia while you are still healthy, even if they don’t want to face the reality that your body, mind or both will at some point fail. Providing them with a plan and money to carry it out is the best gift you could give kids who love you, even if it means reducing their inheritance.
That says it all.
Update, to all of you who were so encouraging and supportive. She’s home. She’s mostly in bed. She has started eating pretty regularly. Hospice and the aid I hired has helped so much. And I have friends close by who are invaluable. My aunt and her husband are coming in from Cleveland this weekend so I’m going to a party Saturday night. It’s a new normal, can be exhausting but it’s working. She does get scared, Ativan seems to really help. I appreciate all the kind words. It can be really daunting. But I’m also feeling oddly accomplished and as exhausting as it gets to do this, wrangle my 3 dogs and work from home. It happens and there seems to be a rhythm forming. Thank you all ❌⭕️
Ditto
Update on my mom, to all of you nice people giving me the support needed at the time. I was so scared I couldn’t do this. I had too much going on, I was already dealing with soooo much grief. I was sure I couldn’t pull this off. But I’m here to tell you, it’s the change I needed. I needed to be here. I made some house changes to make it comfortable to all. I moved my things I wanted and needed only. I painted, decorated both of our spaces, installed invisible fence, and here we are it’s the middle of May. She’s doing well for an elderly woman in the last stage of dementia, she eats most days. I try to make her breakfast also most days and she eats dinner here and there. The other day I gave her angel food cake, homemade strawberry sauce and whipped cream for breakfast, she loved it. We take each day as it is. I promise you I do have the UNICORN/GOAT of in home hospice. They are amazing. They are here 5 days a week and then some when needed. I hired an aid who comes every SINGLE morning and sometimes again in the evening. I needed this too. I thought it was all for her but it wasn’t. I needed to be able to check on her. Wash her bedding, clothing, make sure she’s clean and eating well for what she can. My mind is at ease. I didn’t really realize that was so much worse before when I wasn’t here. I was too busy grieving my husband and my dad. Well I was also in fear mode still on top of that. I’m not afraid anymore. Because I know everything that can be done for her, IS BEING DONE. The grieving part has lessened and not as intense. I needed a change. Out of the cocoon I thought I needed, that was wrapped in 30 years of memories. I’ve taken on the next chapter of life and whatever that brings, I’m ok with that. I know that I’m fortunate to be able to do some of the things that helped this transition happen. I am grateful for that. So the moral of this story, is, if you are worried about your parent or loved one. Take the leap. Get the help. Take control of the situation, the parts that you can, take it day by day. And try to remember worrying only steals joy. The small wins, like a dessert for breakfast that is enjoyed is a win.
Here is the ugly truth - YOU will never know when you are “gone.” That is what the author is trying to say. Plan now, because you can’t do it later - because you won’t know. In fact, you will actively resist. I’m an attorney. I have dealt with this personally and professionally. I am 70. I have informed everyone in my family where my documents are. I have granted access to all of them so one “caring” person can’t block access. They can’t change anything without permission from me, or two other(if I am being goofy). You are competent now. Find people you love or trust now. And explain that you understand you will die. You may become incapable of understanding yourself. You may become incompetent. And ask them if they would help you out now, while you have you shit together.
New scams arrive every week. One day I walked into my mom’s office, and the laptop was on and I heard her say to the person on the phone, “I don’t have PayPal, I’ll have to go to the bank.”
She handed me the phone.
I asked the person, “Who am I speaking to?”
He responded, “David” in a heavy Indian accent.
I asked him what he was doing and he told me that he was trying to renew her Norton security for $299.
I could see by the mouse that she had already given him access to the laptop.
I did a hard kill to shut it down, and ended the call.
I am certain that she was scammed out of a lot of money over the years.
There must be a special place in hell for these monsters.
"I don't have PayPal, I'll have to go to the bank." To a scammer that's not confusion, that's a payday. You walked in at the right moment. Most families don't.
One time, yes. I am certain that she was defrauded many times.
I was taking care of my dad 24/7 and completely failed to notice her decline in mental status.
There must be a special place in hell for people that steal from the elderly.
Taking care of one parent while the other one slips... that's the blind spot nobody warns you about. You were buried in the one who needed you louder. That's not failure.
I kept a journal during those years later, and six years later, I have never opened it.
I remember the pain and frustration on the pages. I cannot return to it.
My dad passed in 2020, and my mom is in an assisted-living facility.
Six years later, I cannot ‘go home.’
My mom’s current mental status is where my dad was when I became his caregiver.
I cannot bear to watch this twice.
That feels like failure.
Six years you haven't opened that journal. You already know what's in it. And now your mom is where your dad was, and you're supposed to do this again... that's not failure, that's a body that remembers.
Do retirement communities have people to help avert this?
I don’t know the answer, but unless a residents phone calls, emails, and mail are monitored - I would say not likely.
My mom now has a phone that only her children can call. One of my sisters became the defacto contact for her doctor appointments, another manages her finances.
If the resident is ‘non compos mentis’, it’s important to have the diagnosis declared by a doctor, because that protects the resident if someone forges their name on a contract, opens an account, etc.
tbh this (absence of help) seems really bad, if there are people there who could use good advice.
Agree on both points, 100%
There is a guy on YouTube who does a lot of scamming the scammers (Kitboga). I think his videos are worth a quick scan if you've never heard of him because it helps to know how the scammers work. He created a desktop/laptop program to stop scammers because his grandma was scammed like this. He attempts to torture the scammers (keeping them busy with his nonsense so they're not off scamming real people) and then reports their bank accounts if he can get access to them so they get shut down.
The program is called Seraph Secure - https://www.seraphsecure.com and the basic program is free. If installed on an elderly person's computer it should help to warn them if someone wants to remotely access their computer. There is a paid version where you can set up an alert for yourself if your parent (grandparent, etc) triggers one of these warnings with their activity.
Kitboga's good. The alert feature is the real thing though... you're not always in the room when the phone rings. Thanks for dropping that.
You're welcome. If everyone shared it with others (who them shared it with others) the use of it could explode and help so many people. I just can't stop sharing it when I know how useful it could be for people.
Thanks!
I've just tried seraph secure and it doesn't work with IOS. My mother only uses her phone, rarely her computer. I would love to find another source.
Seraph Secure is desktop only, no iOS yet. But the iPhone already has what you need buried in Screen Time. Set it up the same way you'd lock down a kid's phone. Restrict installs, block sketchy sites, turn on Silence Unknown Callers. Your mom doesn't need to know it's there.
My mother was scammed by the exact same company. They made it nearly impossible to stop the subscription. Their website is like a brick wall.
You have to be vigilant on so many fronts, it’s exhausting.
It wasn’t Norton, and the subscription doesn’t cost that much.
My dad got scammed in a property deal which he was never part of.
I filed complaints with the State Attorney General and they set the fraudsters back in their heals.
The POA is important.
Nearly got caught in the same one, my relative almost convinced me he'd bought the thing and had to give them access to the computer, so handed the phone to me. I realized what was going on before they got access, only because they thought he was on a PC and he has a MAC and they had to call their supervisor. Very close call.
I am so grateful to my mom who signed up to long term care insurance and set up a trust, will, everything at age 70 when she was perfectly healthy. I was assigned POA at that time, added me to her bank accounts and set her End of Life choices (DNR) which we updated as the years progressed. In her late 80’s she had me write down her desires for her funeral and even picked the mortuary. She started emptying her closets a few years early. What blessings for me! I’m going to start soon for my daughter.
That was a responsible loving mom who planned so that you would have all the info necessary when she can no longer handle things. As difficult as I am sure it still was emotionally, yours was the ideal. May you have many many more years and your planning will also help your daughter and family. Bless you!!
Just a note, if you go into a bank branch (e.g. to add someone to access a bank account, or to change contact info) and the bank person types a bunch of stuff in, *you do not know* what they've typed in, and you may be given no written record of it. This seems dumb.)
Three dogs and an invisible fence. Hospice lined up. Friends across the street. You're not winging this and that already puts you ahead of most people I've seen walk into this. It's gonna hit different once she's actually home but you know that already.
My dad had that. He died six months ago today. No one believed me that he had a problem. The stupid doctor he had kept insisting there was no issue. But yet it was right there on his death certificate. Not only is dementia devastating, but not being believed is also very devastating. I wish someone would’ve listened.
Six months. You kept saying something was wrong and his doctor kept brushing you off. Then they write it on the death certificate like it was obvious the whole time. You weren't the one who failed to listen.
Yes, that doctor most definitely wasn’t listening. But I should’ve clarified – the doctor that signed the death certificate was different than this woman that was denying at the whole time. About a month after his death, that stupid doctors office called me to see how he was doing. I told them to let the doctor know that he had died and that by the way, the cause of death was dementia. It might be childish, but I had to get the last word in to let her know she had been willfully blind. Alive or dead, I wasn’t going to let anyone disrespect my dad.
That's not childish. That's the only performance review that doctor will ever get for missing your father's diagnosis. The system doesn't send report cards. Families do. You made sure the word "dementia" landed on her desk attached to a name she was supposed to be treating. That call was the one piece of accountability the system doesn't build in.
I went to multiple doctors with my dad when I saw signs in his late 80s, but they all completely dismissed my concerns because he knew the year and the president. Until he fell and spent time in a hospital and folks saw him long enough and frequently enough that he couldn’t fake it. It’s maddening. I feel for you.
My Mom was gregarious and charming to visiting doctors. They didn't stay long enough to have to repeat the entire conversation 20 times end to end, so they thought she was fine!
Wow. Thank you for that! That’s exactly what happened and it was so frustrating. Nobody believes you because she’s so good at faking it. The original gaslighting.
Sou is lime my Mom. Charmed the socks off her Dr ever visit. And we caught her washing he clothes with coffee grounds and spraying Raid on her legs for bug spray, 2 hit and runs with the car. Maddening. She's fine!
Year and president. That's the whole screening. Two quiz answers and the chart says he's fine, go home. You kept dragging him back anyway. Took a fracture to make them sit with him longer than a waiting room allows. That's not a gap in the system, that's the system.
My mom has primary progressive aphasia ftd. We had a great neurologist who took the time to explain why it’s different than Alzheimer’s. Language was the first to go, then large motor physical decline , then complex reasoning. People place and time are the last to go with her kind of dementia. While it’s a blessing that she will know me to the end, it’s heartbreaking to watch her try so hard to communicate her wants and needs. Frustration and depression are real. Looking at next options for care as in home 24 hour is $43 an hour in my area versus 1/2 that for assisted living/ memory care. My Dad died two weeks ago( that’s what kept her home until now) so it’s all about setting up widows benefits and figuring out finances going forward. The cash bleed is huge, pressure is real even with a DPOA. Not to mention my life on hold until we have this settled. I haven’t slept in my own home for more than 4 months as my Father declined to his passing, I don’t see me anywhere but living with my Mother for at least 3 more months. You have to be more than prepared for your life to come last in order to keep your parent safe and secure
Four months not sleeping in your own home, and you're still making the next call. Most memory care is built around Alzheimer's, orientation loss, wandering. Your mom's PPA runs opposite, she knows where she is but can't tell staff what hurts. AFTD says it directly: Alzheimer's strategies misapplied to FTD usually backfire. Before comparing $43/hr vs facility rates ask how many FTD residents they have and whether anyone's trained in augmentative communication. Wrong fit costs more than the rate spread. Widow's benefits can't be filed online. Phone: 1-800-772-1213. At full retirement age she may get 100% of your dad's check. Call now, SSA doesn't rush.
I'm so sorry. You srd not yjd only one. I'm feeling like I'm going crazy because I've lived with Mom for decades to provide in home care we cannot overwise afford. So more than literally anyone else on the planet I know she has been slipping for the last couple of years at least, but she can fake it with everyone for long enough. Like the ten minute weekly Zoom call with my brother, or the fifteen minute visit with the doctor, who believes me but "ethically" can do anything until she sees it in a visit.
It's so incredibly frustrating to know there is something wrong with your parent, but everyone else dismisses your concerns because*they* don't see what you see.
You're not going crazy. They call it showtiming. She pulls it together for the doctor, holds it for fifteen minutes, and everyone walks out thinking she's fine. You're the one seeing the other twenty three hours. That's the actual assessment. Not a ten minute Zoom with your brother.
You are not alone. I can’t help you but I see you.
☺️
Thank you. It is appreciated.
Wow, I am so sorry and I can really relate to this. I understand the feeling of going crazy. But you’re not crazy, you know what you know. It’s heartbreaking, I know. Thinking of you. 💜
Six months and nobody's said sorry yet, right. They won't. You clocked it before his doctor did, and the death certificate is basically the system going "oh yeah, she was right" to a room that's already empty. That part doesn't get easier, it just gets quieter.
I’m sorry that happened to you! It sounds very frustrating.
I live in Washington State and we have an option here called VSED = Voluntary Stopping Eating and Drinking. I have a provision in my will that if I develop Dementia and cannot recognize any of my family they are to begin the VSED process. Takes about a week-10 days. Can’t imagine living years and years in a vegetative state. I learned a lot about dying when my husband was sick. Ultimately he chose the Death with Dignity option. It’s an important topic to discuss with your family. . . .the ‘what if’s’.
Good that it's on paper. Problem is, no court in the U.S. has ruled a VSED directive has to be honored. Facilities refuse them. Even clean ones. End of Life Washington and Northwest Justice Project released a dementia-specific version that closes more gaps than a will clause ever will. If yours is just a line in a general document... it's a wish, not an instruction.
I'm going to look into that. Glad you mentioned. I'm in WA as well. My understanding is that dementia doesn't fall under the death with dignity. Dementia is not considered a terminal illness?? And the patient can't make that call at the end. I also wonder about the VSED. Does that mean someone physically withholds? In which case it's not voluntary. I don't know...I'm just thinking out loud. My MIL has severe dementia. She hasn't known us for a few yrs & yet she eats well.
Yeah, dementia doesn't qualify. Not terminal within six months, and by the time it might be, they can't consent anymore. That's the catch, it locks from both sides. VSED through a directive means someone else decides to stop offering food. And here's where it gets ugly... your MIL doesn't know you but she eats. The document says stop. Her body doesn't agree. Nobody's solved that one yet, not in any state.
My experience is that many in dementia forget to eat and/or have difficulty eating and digesting so it would seem a natural course of events (especially when written into a will). Surprised your MIL still eats well. But everyone can be so different.
No dementia is not an illness that qualifies for the Death with Dignity because u have to be of sound mind to decide. Look for more info on the site: End of Life Washington about VSED.
I will, thanks. I like that you have a provision for it in your will. I would want the same.
Thank you for this! Didn’t know it existed. I lost my mom to dementia while her affairs weren’t in order. It was a MESS and I want to save my kids all the guilt and pain and make all those decisions now.
VSED is actually an Advanced Health Directive. Go to End of Life Washington website for more info on VSED! It’s good to know your options!!
I had one for her, she fought me all the way but eventually signed it. She's gone now, 2018, but I still have nightmares.
Thanks for mentioning the VSED option. I'll root around in the state code where I am, and even if there's no provision in state law, I can tinker with my advance directives.
This is one of the most usefully blunt dementia pieces I’ve seen in a while.
The “$405,000 and seven years” line lands because it names what families quietly discover: dementia isn’t just a diagnosis, it’s an operations crisis… legal authority, medication safety, wandering risk, finances, driving, home hazards, and the slow erosion of the caregiver’s own body and mind. Too many people get handed pamphlets when what they actually need is a field manual. 
I also really appreciate the realism in your comment thread: that painful combo where judgment is impaired but the fight remains intact. In clinic we see this constantly, reasoning with the disease rarely works, so safety often has to be built around the person (redundancy, environmental design, contingency plans), not negotiated through agreement. 
If I could add one clinician note for readers: the goal isn’t “doing everything perfectly.” It’s getting the high-leverage pieces in place early (authority, safety, supervision, respite) so you don’t end up making irreversible decisions in an ER hallway at 2am.
Thank you for writing the thing families wish someone had told them before the first crisis.
Ours experience was over a million$ and over 11 years. Devastating disease.
A field manual rather than a pamphlet!!! So true! Plus we caregivers need to be heard and responded to not dismissed with…dementia… and they go about their merry way.
My life for 15 years. Dad- vascular dementia.. passed in 2022. Mom/ now with Lewy Body Parkinson’s. I lived with them as sole care giver 10 years while working full time remote. Brought in Visiting Angels do I could work.. not lose my career. Then had to move them to assisted living then memory care. Grateful we took care of POA while they were still cognitively able and - they were proactive 18 years ago to create a trust and put me as POA if they became cognitively impaired. I was fortunate that my parents thought ahead.. and we have an elder attorney. Now.. she can barely talk.. sleeps most days through my visits.. on hospice. Long journey. Long goodbye for both. 🙏💕
I would have been so grateful had my mother been as proactive but she refused to be personally responsible in her pre- dementia life which made everything impossible later. 🙏🏼💕 pleased to hear at least you had that proactive responsible loving parent because i understand how difficult the long journey and decline now already is for you.
Pretty good! I would add to start visiting memory care places before it’s an emergency and you have to find one practically overnight.
Also. Secure all the paperwork! My dad put his POA in a random file folder and we only found it by accident and literally a few days before the police and a social worker showed up because the bank called them since he kept taking out so much money and was so confused.
Oh and the car keys. Take them away somehow. (Sorry if you already included that one!) So hard but so necessary.
I knew a woman who was so proactive, she had been dx with lewey body dementia and did her own research and shopping for where she was going to go, sold her home and submitted all her financials to her chosen facility: starting with asst living, then to next phase to memory care nursing home (all the same facility with EMOLOYEES not contractors - she emphasized and recommended to the rest of her friends. ). By the time she had moved she had about six months and decline started rapidly. Her son in another state was kept in the loop and she ultimately had made the hardest decisions and transitions herself saving him years of difficulties and sorrows, financial depletion.
That is remarkable. She must have had such an early diagnosis so she could plan. I think that’s unusual. For my mom, she has a gazillion TIAs, and we ignored and explained away her odd behavior until things were dire. We were inexperienced and didn’t want to accept it. For my dad, his came on suddenly, and we were not prepared - BUT HE WAS. That’s why we have POA, healthcare proxy, life insurance, Medicare B, house papers in order, etc.
Then again, taking away his car and his wine - that’s an entirely different story. And then a catastrophic fall. That’s why I really appreciate this @Vance Frost post. Strong opinions, strongly stated, and they are correct. We got lucky but we were not prepared.
Your dad did the one thing almost nobody does... got the paperwork done while he still could. Car and wine, though. Yeah. That part's not logistics, that's taking something from a person who still feels like a person. Harder than any form you'll ever sign. Glad it landed. Thanks for being here.
Somehow I just saw this, Vance. Yes, there's the survival part, and then there's the human part. He still yells about the wine. I get it.
My aunt was diagnosed with Lewy body dementia relatively late in the process. One of the symptoms of Lewy Body Dementia is paranoia, so for years she refused to even get a diagnosis or do any other paperwork to help her out (she was suspicious and paranoid for years looking back now). To make a long story short, a family friend moved her back to Argentina, where she was from, because the care was a fifth of the cost than it is here in the states and of course she didn’t qualify for Medicaid. And thank goodness she had this option.
The paranoia that kept her from signing anything wasn't stubbornness. That's a core feature of Lewy body and it often shows up before anyone has a diagnosis to point to. Standard antipsychotics are contraindicated in LBD and can trigger a neuroleptic crisis. Memory care facilities get that wrong regularly. If she's there now, ask what they're using for behavioral symptoms.
So lucky to have that option! I have been visiting memory care - it is upwards of $20k a month once you add everything in.
My friend was missing an entire part of her brain before she was dx. With intense brain neuroplastic therapies she was able to recover her driver license and her administrative faculties just long enough, less than a year, to accomplish her decision and move. The extra stress then took its toll. She had a therapy dog trained to keep routine and wake her should he notice variations in her sleep, breathing. She said he would outlast her, then he got a cancer and she was unable to be fully responsible for him. She was scared to walk him and he needed it plus he was still doing his job. She couldn’t reason it out. The lewey body progressed quickly at that point. Very sad but i admired her strength to come back after brain loss/damage and retrain other parts of her brain to be functional. And to be so focused on her self direction for her last years and known decline. 🙏🏼
Ki, this isn't a story about decline. It's a story about someone who tore a stretch of real life back out of the disease and spent every bit of that bought time the way she chose, not just running out the clock.
The dog is the part that grabs me. He was supposed to outlast her. Instead he went down while he was still doing his job, and she couldn't be the one to pull him through it. That's the cruelty of Lewy body, the reasoning cuts out exactly when you need it most. She saw what was coming and still steered her own last years. Most people break before they get there. She didn't.
Thank you for bringing her back for a minute. Things like that should be said out loud, if only so we know they happen.
Beautiful, Vance. Brings me to tears.
I wish I could have read this in 2003 when I supported my mom through a ten year dementia journey. We didn’t have AirTags then but so so so much of this rings true for me. Thank you for sharing it.
We didn’t try air tags, we tried to get my mom to wear a bracelet or necklace that she could press if in distress or lost - 3G cellular eventually was phased out. But she refused to wear because they “depressed” her.
My Mum refuses to wear her safety watch because ‘ it’s bulky and ugly!’ Even 5 years into her pronounced dementia, she’s still vain!
You gave the harsh reality of this despicable disease. My husband of 57 years has been on this path for 6 years. He doesn’t wander yet. We did all the financial stuff years ago, but it’s so heartbreaking to watch that light in his eyes fade. He’s still here but for shorter periods. He’s my life and we will keep holding hands and walking through together.
Our journey is similar. Because of family history, we saw this coming for my husband. We're lucky to have the resources to plan to age in place. And he was always amenable to the necessary steps we had to enact for his safety. He voluntarily stopped driving. He agreed with all the legal requirements. Everything was going along swimmingly until I became very ill. Now my adult son has moved in with us. We are able to pay him to do this for us, and we certainly could not continue our planned path without him. We do also hire other people for respite care periodically. My husband is near the end of his journey, and I seem to be getting better instead of worse.
If there is any advice, and I'm hesitant to call it that, it would be to each day remember the love that you have for this person. Then it all becomes easier. But there is nothing easy about it.
There is great satisfaction in knowing that he knows that he is loved and that we give in the best care possible.
You planned, he cooperated, and it still almost fell apart when you got sick. That's the part nobody builds into the plan, what happens when the caregiver goes down. Your son stepping in isn't just family loyalty, it's the backup system most families don't have and can't afford. Glad you're getting better. The last stretch is the hardest one and you're doing it right.
As a Brit the one thing I wish I had gotten from my brother before he lost capacity was Power of Attorney. He wouldn’t do it and then it was too late. I’m 8 months into the process of Guardianship and it’s still not settled. It’s also between £3000-5000. PoA is much cheaper.
Everyone should have PoA in place NOW!
I’m late finding this post, but just wanted to say you have my sympathies. My Mum did the LPA for health and welfare, but refused the financial one. Going through the deputyship process was gruelling and once you have it there’s a large amount of reporting especially in year one. I am evangelical about people doing LPAs now
The health LPA your mum signed took one appointment. The financial one she refused turned into deputyship, annual OPG fees, and year one reporting that exists because the court doesn't trust families the way a signed document would have. She made a choice about control. You lived with the paperwork.
English law does not recognise a durable power of attorney. When the person loses cognitive capacity, a court must get involved. I had a durable PoA executed under NYS law by my wife in my favour but it was rejected by a British jurisdiction. My only recourse was to hire lawyers there and undertake the expensive court process.
English law does have the concept of an LPA or lasting power of attorney. It must be done before capacity is lost though, otherwise you go to the Court of Protection (which doesn’t involved an actual court visit just endless forms and waiting)
The Court of Protection isn't an inconvenience. It's a 16 week queue while your parent needs someone to sign for their care today. The LPA costs £82 to register. Deputyship costs that plus annual OPG supervision fees for as long as they're alive. The forms aren't the problem. The timing is.
Get those POA done years earlier. Call them safeguards. We had ours done with our new wills. Whether you are young or old you need these in place.
DURABLE POA. And keep them as current as possible!! My mother gave me her POA from the 1960s that wasn’t durable and she refused to update anything even when she was still able to, in the 1990s when my dad died. So by 2023, she in her early 90s, is failing, aggressive, combative and empowered by self hatred and a lifetime of resentments that she projected on myself and my husband, her mental issues exacerbated because memory and social masks have failed and what i had - the POWER OF ATTY, her will and medical directive - were over 60 years old and virtually useless.
When Mom was first diagnosed, my brother and I did 1 thing right. We agreed that no matter what, we were going to be better friends at the end of the journey than we were at the beginning.
That became our prime directive. We were often both stressed and overwhelmed but we took a breath and remembered our goal and got back on the same page every time. In the end, we gave our mom the best care we were able to provide and we still love each other.
My me, the POA was invaluable as my dad slipped into dementia. I had him go to a lawyer a few years before. He eventually ended up in a nursing home for four months. He was awful with money, but I had taken control of his account a few months before he died. And you’re right, the cost for the nursing home was over $8000 a month…and it wasn’t a luxury home. Great suggestions here!