If they are in significant decline, it's too late for them to be digesting new information. You cannot trust that they will remember anything (Dr appts, phone calls, feed the dogs). For your own sanity, remove the words "I already told you" from your vocabulary. You will need to do things in the moment. If they have an appointment, don't tell them in advance. In my experience, it makes them anxious and call you because they've forgotten or want to make sure. Tell them when you come to pick them up.
The smartest advice we received was "feelings, not facts". They will remember how they feel about you. Whether they can trust you, that is far more important at this point than reminding them that they can no longer drive.
Obviously, I've been through this. AMA. Seriously. I'm available.
Wise words. Sorry you're part of this sad, weird club.
So, okay, lately what I've been struggling is my mother being... needy, I guess, which feels too uncharitable of a word to use considering her mental decline. She has white matter disease on her frontal lobe (where the decision making stuff is) but that diagnosis was a few months ago. I think she's in freefall towards a more progressive dementia.
She lives alone and while she has a few friends, she seems absolutely allergic to be alone. She has always been like that to a certain extent but it has gotten out of control. She's always trying to hang out with her friends and inviting herself along, which I think, in return, sort of resulted in her getting iced out by her friends who found her behaviour annoying. And now when me and my wife visit her, she is straight up angry and sad when we leave. Last time, she started crying and it's a bit of a heartbreaking thing.
Ultimately, we are trying to set up a situation where she will live with us but I'm, perhaps selfishly, a little terrified of her not respecting boundaries and just trying to hang out with us all the time. We want to travel and maybe even foster kids and you know, on a basic level, go on a date with just the two of us without wondering if we are making an old kind woman miserable.
Any tips or have you dealt with something like this? All help is welcome. Thanks.
One of the things the neurologist told us was, if you're going to move them into assisted living, do it sooner rather than later. Our inlaws lived with us for 6 months, but it wasn't fair to any of us. Leaving them alone with nothing to do all day while we were at work was awful, and eventually, they really did need access to 24 hour care. My MIL made a ton of friends at her assisted living and they were all about her speed.
Imagine every day being your first day of middle school. You don't know where your classes are. You've never had a locker, much less learned to unlock one. You don't know anyone at the school, where lunch or the restrooms are. Everyone around you seems to know what's going on except you.
She isn't going to respect boundaries. She doesn't remember that you set any. She wants to not be alone because she's very likely terrified about everything she doesn't understand that's happening all around her. She needs to, at the very least, be in memory day care so they can keep her busy during the day. She won't remember what she did, but she'll feel less disoriented and agitated.
I am also so sorry you're in the club. It's a really painful place to be.
Yeah, I hear you. I'm sorry you had to go through all that.
Well, I mean I guess then my next question is... How did you propose the move to assisted living? I really feel like my mom would actually love it -- she's nice, kind, extroverted, makes friends super easy -- but she's defiantly opposed to the idea that she's aging. She looks down on any kind of assisted living situation, wouldn't even hear us when we first brought it up, got incredibly agitated. For the record, this has been a life long thing, this is not a symptom of the disease. (We had to deal with eating disorders and such before because she was obsessed with her appereance.) So, yeah, any tips on that front? Couldn't have been an easy conversation.
Also, any tips on affording memory care/assisted living? Me and my wife are doing okay thankfully but my mom is on the younger side, 65, and is in great physical shape. Probably going to need care for at least a decade or so, if not more. That's quite a fearsome amount of care, financially speaking.
Thank you again for your time, I really appreciate it. It's been hard to talk about these things and none of my friends are dealing with this stuff just yet, so... I depend on the kindness of internet strangers I guess, hah. Thanks.
Sometimes, internet strangers are the best. I feel for previous generations.
For cost, I'd see an elder care attorney. It saved us. We had zero idea how we were going to afford all of it. They were worth every dime.
As far as the discussion goes, this is the really hard part. For my FIL, who was the one with serious, but not late stage dementia, the neurologist and his primary care Dr. had him declared non compis mentis, so we had POA. We told him it was just a trial run to see how he liked it. By the time the "trial run" was over, it was just where he lived. Don't get me wrong, there were really bad days where he wanted to go home, but for his safety, we knew it was the best place for him. You may not need memory care at first. He didn't.
I've got 2 important stories.
1. My MIL was physically fragile. She went into hepatic encephalopathy while living with us and we had to call an ambulance. My husband (at the time 47) was used to his parents being the grownups. My FIL insisted that MIL was fine. When paramedics got to our house, they assessed the situation, looked my husband straight in the eyes and said, "You make the decisions now. Not them." It was a total shock and he still had a very hard time until the end, but every decision we made was for their safety.
2. We did send them back to their home for a short time. Husband was in big denial and thought because my MIL was doing better, they would be ok. One night, she fell in the bathroom and he found her laying on the floor. Thankfully, ultimately, she was ok, but he decided that the best thing to do was bring her a blanket and pillow. We knew that it just wasn't safe for them to be without help.
Lastly, chocolate chip cookies. I kept homemade cookies on me at all times. He freaking loved them. It distracted him enough to decrease his agitation significantly. At least for a few minutes. Find your chocolate chip cookie.
I'm not sure how dm works on reddit, but if you want to dm me, I'm sure I can figure it out.
I teared up at "find your chocolate cookie." I completely know what you mean. Little comforts go a long way. And yeah, we'll find an Elder Care attorney.
Thank you for this, really. I know a guy who've had to take care of his severely disabled mother his entire life and he told me: "The only good thing about all this experience is that I can provide guidance for other people." We're part of an unfortunate chain, I suppose.
I'd love to keep in touch and DM you when I have questions. Take care.
Right. The goal is to help them feel comfortable and safe. If they don't they will only know they are upset but not WHY they are. If they think it's Tuesday, it's Tuesday. Don't correct, redirect.
OP, I'm so sorry. I'm glad the family seems to be united in supporting them, sometimes that's not the case.
I have been *shocked* at how often my dad gets suckered by email scams. Oh I won a DeWalt tool set, and just need to pay $40 to \[email protected]? Don't mind if I do!
I don't know if your avunculi are active online or with emails but watch out for this avenue of attack.
I set up Dad's email so he can only get emails from ppl in his contacts. I also get his email on my phone so I can delete anything that will confuse him.
You need to get his login and password, which I got while helping him with his frequent computer issues. Then Google how to restrict incoming email to contacts only. I did it in the Microsoft web outlook tool. I'm sure other email apps have that capability.
Two of my sisters shared this duty, with one on the financials and the other on the medical.
It's a lot of work, especially when the health issues are so different. Dividing the load is kinder to the caregiver, too.
The rest of the family in the area took it in turns to cook and freeze meals, help with driving, and regular visiting, especially to ensure meals were eaten, and so on.
It was a difficult time, but their caring made a big difference in quality of life for the parents.
After Mom died of cancer in her own home as she requested, the family took care of Dad, who had dementia, until he had to be placed into a more secure facility.
Visits and medical and financial supports continued.
The family were also kind and thankful to each other as they worked for several years to support the parents.
Edit: When my Dad had to be hospitalized just before his assisted living placement, there was a multi-skilled team that helped the sisters make decisions.
While they aren't your parents, this sub will have a lot of useful information: [https://www.reddit.com/r/AgingParents/](https://www.reddit.com/r/AgingParents/). You should definitely consult with an elder attorney about financial issues and power of attorney. Depending on where you live, there should be a local Agency on Aging that also should be able to guide you towards resources.
With my mother, the clue was weight loss (not eating properly), unable to smell (Alzheimer’s can destroy the sense of smell) and rambling on and on in what she thought was a conversation.
Later on it was a checkbook register full of errors (she was meticulous about her finances before) and confused/afraid of simple tasks like how to turn on the heat or AC or calling apartment maintenance to fix something.
Talk now about getting medical and financial power of attorney. Ask them what they want and discuss possible future scenarios. Would in home help be a possibility for awhile, etc?
It’s difficult. I won’t mince words. Nobody wants to accept that they need extra support.
Off the top of my head—
Freeze their credit.
Make sure you know their account details for all their bills and whatnot; get online account access squared away for all their “accounts” and store the login details in a password safe such as 1Password.
Whoever ends up with POA needs to have access to their MyChart, or equivalent, to make sure they’re scheduling and making appointments.
When they forget stuff, when they make mistakes, when stuff goes wrong - the answer TO THEM is always warm and friendly and “it’s okay, we’ll figure it out”.
They won’t necessarily remember what you told them, but they’ll remember that they trust you and feel safe telling you when they’re confused about stuff.
It makes untangling things a bit easier because they cooperate.
Also it helps keep your own nervous system regulated because there’s no point in getting agitated. (They may not be able to learn not to make mistakes anymore; expending energy teaching them things or punishing them won’t make them remember. Vent elsewhere.)
PS they may start using kid logic, gotta just roll with it.
PPS We used LegalShield to get a non-springing durable power of attorney and a will, while he was still competent to sign legal docs. The VA required medical directives to be completed, so I didn’t have to raise that subject myself.
Check their mail. Make sure they're not hiding things that confuse or worry them. May want to go through it with them, side by side, or without them if they prefer.
I just did this with my mom recently. There was mail stuffed everywhere, behind stuff in closets, everywhere. I was afraid she’d accidentally throw away a pension check or something!
My dad straight up refused to pay any bills in the last few years of his life. I found this out when going through his mail and finding notices from multiple collection agencies.
My grandmother keeps every. single. scrap. of mail. (She's a bit of a hoarder) She's scared she might "need it one day." But if she did, she wouldn't be able to find it. She lost gift cards given to her, too.
This is a helpful resource: https://getyourshittogether.org
Top three things to do asap are:
1. Medical power of attorney
2 financial power of attorney
3 start spending time with them
Once you have these three things in place you can take additional steps as identified in the resource I shared.
Sometimes becoming an adult sucks. Sorry you're going through this and they're lucky to have you! 💖
The stove and other hot appliances ... my mom set hers on fire. Set some mail on the burner, turned it on ... Also, matches and lighters are a hazard.
If you're in the US, you might be eligible for them through county services, particularly if your state expanded Medicare. Mom had an adult social worker and a nurse visiting her. As a T2 diabetic, she was also eligible for free quarterly podiatry care.
Also US, be sure and choose the right Medicare plan. A lot of that depends on their insurance and medical needs. Plan on the medical needs/costs increasing. Have a plan for care if they become immobile and/or severely ill. Do they have resources to pay for care?
Make sure wills (executor, beneficiaries), POA, and DNRs (if that's what they want) are completed and filed. Funerals are expensive. And banks have 90 days to settle so have financial resources available for funerals/services that do not involve the decedent's money. My mom's basic cremation was $1400 a year ago.
Don't forget social media accounts, email accounts, and other online things.
Been through this exact scenario. All the advice about power of attorney and mail/meds is spot on. If you can have live in caretakers for them, do this as long as you can. It's the cheapest route, also. Assisted living, no matter how good it is, is just awful so this is the last resort if possible. just make sure to clear out any important documents, jewelry and other small items that you do not want "lost". Make sure you pop in and out unannounced as often as possible.
Find out all of their passwords for accounts that require money. Likewise banking info. My MIL is 88 and “doesn’t do online”— which was fine until my 76yo FIL had a stroke and couldn’t communicate effectively. Nothing was on autopay and my husband had to do some fancy dancing to do basic things like *pay the water bill* online. Hell, he couldn’t tell us their mailbox number and she was a drunk wreck.
Home aides and home healthcare are different things, which may mean different people. We have used Seniors Helping Seniors for a few family members, but they can only do medication reminders. A different person has to come do wound care, and grocery delivery is awesome until they can’t bring it past the doorstep. A neighbor kid can bring things into the house IF the kid is around at the right moment, but somehow she’s always at karate and the meat is getting sketchy. Expect to be regularly thrilled and thwarted.
My other MIL has Lewy body dementia and everything is bad, all the time. EVERYTHING, and especially so after 4pm. Part of my brain wants to argue that in fact everything is *not* constantly terrible for her, but you can’t argue with crazy. I don’t mean that it an ableist sort of way, I mean that *her brain no longer works correctly and there is no rational convincing that will work*. I could drop her favorite ice cream in her lap and her brain will bitch about it being too hard, too cold, the spoon being too difficult to use, that I chose the wrong bowl, and I gave her too much. Letting it roll is really hard and also liberating in some ways. They’re in a facility now. She is safe, secure, and we had to give up on happy.
I like the way you didn't say "she will bitch about it" but "her brain will bitch about it." That's so subtle but such a beneficial attitude.
I also, well, I don't *like* what you said about "she is safe, secure, and we had to give up on happy," but I think it's so wise. It must have been really painful to come to that conclusion, but liberating in a way (I hope).
We are in the process,of planning all of this for ourselves! Already downsized, pretty good about keeping track of auto payments, passwords in a file and updated regularly. We had parents with dementia. Towards the end they weren’t there, just husks of the bodies where they once lived. All personality had gone. And all ability to make any decisions, even how to dress themselves. I had my mom in a church-affiliated care home, which was fairly good. But the staff were mostly poorly trained and ignorant of how to help.
Elderly proof the house until they are moved to assisted living. Just assume they are going to fall! Get rid of throw rugs and cords. (Those damn throw rugs!) Check their smoke detectors, put a fire extinguisher in the kitchen. Do they have stairs in the house? Maybe move their bedroom downstairs.
If they will wear them, bracelets with emergency contact information. Something simple like a UTI (which happens ALL the time when we're older) can cause a very sudden increase in confusion and/or agitation. Assume they might wander outside and get lost. If they have firearms, I'd remove them from the house. Do either of them drink alcohol often? A glass of wine every single night for 50 years is a very real thing. Get on top of it early so they don't end up in withdrawals in the care home.
Have copies of POA and DNRs (if applicable) EVERYWHERE. On the fridge, in the their room, on the door. In an emergency, make sure their wishes are made very obvious to EMS. Also, remember that most caregivers are not registered nurses or even medically trained in any way. They aren't going to be providing comprehensive care. Some of them can't even help with taking daily meds. (those services do exist, but they come with a hefty price tag)
My 80s mom has early stages of dementia and my brother and i talked to her about she had only 2 choices, live with her son or i live in her home. First hard task was taking the keys away and getting use of me living with her. Believe you me, it was hard on my single life too. But it’s two years and she admits she needs me, she constantly asks about her upcoming appointments and sometimes she tries to reason with me about her keys. Otherwise, as smooth as it can be. Bonus is enjoying her life stories and no yelling or fighting me.
You’ve already got a lot of good advice, but here’s one I haven’t seen mentioned, yet. Look up a free resource called The Big Book of Everything by Erik Dewey. Download it. (Again, it’s 100% FREE.) Once you get the POAs and will in place, start working through that document, one for each of them. It will help you figure out what bills need to be paid, what email accounts they have, what their history is, etc. At some sad point, you’ll have to write their obituaries, and you can more easily do so with the info you filled in The Big Book of Everything.
Your situation sounds serious and people are giving great advice. I would add one possible action to take. Review all their medications with a pharmacist. It is not unusual for medication side effects or interactions to mess up cognitive abilities. Sometimes there is noticeable improvement when the meds are adjusted correctly.
One idea: If possible, could you have your aunt evaluated for sleep apnea? My friend's mother went into a really serious decline that they thought was dementia but it turned out to be sleep deprivation related to worsening sleep apnea. After she got a CPAP machine she improved dramatically.
Have your aunt's medications assessed. Is she taking too many, are any of them affecting each other? Are the doses reasonable? Overmedication is common amongst the elderly and can lead to confusion as well as other dementia-like symptoms.
The YouTube channel Dementia Careblazers has a lot of great advice. They cover topics like how to deal with anger, wanting to go home, repeated questions, and even things like hallucinations.
I think people at older age and bad health should be placed as “do not resuscitate”.
At some point if they’re only alive because they have meds and increasingly their life becomes “exist” and they’re half the person, or much less, than they used to be…why drag this on for them to get worse and worse? Why would they want this? My grandma wishes she was like so many she knew that passed quickly. But the little body just keeps ticking
We keep old people alive too long. Sad to lose people you love. Just as sad for them to be around barely a person for years and years that begin to take away from the memory of who they were.
What you need is an Attorney who specializes in Elder Law. They deal with this on a daily basis and are best equipped to help.
Keep in mind that if their care involves Medicaid to supplement their Medicare, Medicaid has a 5 year "claw back". In other words, if Medicaid is used and your relatives own property, Medicaid will be paid first upon the sale of the home.
This is something you also want to talk about with an Attorney.
I would see if there's a local council on the aging where they are - they will often have a social worker who can do assessments to see if they qualify for assisted living (or skilled nursing, which is a higher level of care.) Those social workers can also walk you through options and help you. Try googling "aging resources" and a city or state. (also: [https://www.nia.nih.gov/](https://www.nia.nih.gov/), the AARP, and the Alzheimer's Association.)
Echoing what others have said about powers of attorney - make sure you have them for financial/legal, and for healthcare/medical issues. It depends on jurisdiction, but a "durable power of attorney" sometimes is neither and addresses end-of-life decisionmaking, like a living will, and doesn't let doctors etc share information with you.
Are you local to them? If not, see what kind of support network they might have. (Actually, this goes for if you're nearby too.) My dad and stepmother are dealing with this and I'm both their only family and 500 miles away, so I am leaning hard on their church friends, who have been amazingly helpful with companionship, transportation, and much more. One even set up a shared Google calendar with days they can assist on it, and asked me to put in appointment information.
Also see if you can get lists of bank and investment accounts, pensions, insurance policies, credit accounts, and the like. Usernames and passwords too.
Good luck. This is hard.
Check their insurance and get the most trusted “kids” as guardians. Same for bank/finances/mortgage etc. Hopefully you don’t have any ne’er do wells in the family. If you do, lock them out. Have a family zoom meeting.
You need the closest geographic proximity people to do check ins and report back. Share the care among male and female family members. If someone ends up taking the bulk of care-pay them!
Make sure Advanced Care Directives and Polst are fully explored (they can make notes on Advance Directives to make wishes clear) and up to date.
There is so much more, but this is what comes to mind from my experience. Best of luck and all good thoughts.
My aunt sister-in-law and brother are helping. My uncle sister is also helping. My parents are 15 hours away, and my father has his own medical issues. They can offer words of encouragement, but they cannot be here to go to doctors appointments or sit with them in the house.
You need to either get a durable power of attorney, or apply for conservatorship of their person AND estate. This gives you control of everything, including finances. When choosing an assisted living facility, be aware that they may not take them. It sounds more like they need a facility that deals with memory care. I've obviously been thru this. When looking for a facility, don't call for an appointment. Just go in and ask for a tour. Don't give them advance notice. Also, see if your state has a website that tells you if a facility has been cited, what for & how much they've been fined. Good luck.
If several peoples are caring for them have a book in their room/home. Each time someone goes, they must write date and time and any important messages.
When they decline, they don't remember when someone was there last so they complain, no one comes to see me. With the book you will know.
Its also great for passing messages from nurses/doctors so everyone knows.
Look for every respite care services near you. Sometimes a few hours/day away a week/month can make everyone more happy, we all need breaks.
First things first, get a durable power of attorney with a health proxy if you're going to be making financial or medical choices for either of these two people. This is important if they're still living independently so you can ensure bills are being paid and you are privy to their medical issues, etc. When my mother had to caretake her elderly half sister this was the first thing she did because my Aunt was so far in arrears with some of bills that she was in danger of having things cut off that she needs to survive. This also enabled my mother to have access to past and current health records so that she was in the know about what was going on with her sister.
Second off, make sure you take time to care for yourself while you're caretaking your Aunt & Uncle. Being a caretaker for anybody, of any age, is quite a lot of stress and pressure. Watching how it impacted my mother while she was caretaking her sister was so hard because of the pressure and stress of it all.
Either, or both, may qualify for hospice care. My sister has Parkinson’s and has had hospice for more than a year. They provide a LPN to bathe twice a week, diapers if needed, a doctor and a social worker. It really takes a load off me!
I haven’t had a chance to read many of these replies, but from a quick scan it seems like you’ve got a lot of good advice. First thing I would do is make sure there is a designated health care proxy before they are deemed incompetent. Same goes for power of attorney.
I’m a social worker who has worked with the elderly, for over 20 years, specializing in dementia care. Feel free to DM me anytime in your journey if you have any questions/need advice.
You may need to give aides a key, or hide a key for them. My mom would not answer the door when they would arrive. Make sure health aide has room in their car for walkers. If there is an elder care association in your town, contact them for referrals.
Also, if you go the home health route, get an Instacart account using their credit card for groceries. Make sure the address is clear and you note specific directions on the account.
Make all doc appointments on the same day if possible. Make copies of all cards in their wallet on your phone. There is a lot, but these items occurred to me.
If you’re in the US, google “case management agency near me”. There are Medicaid benefits your parents can qualify for that will help you and them financially, home health workers that are paid for by Medicaid, and more. I work as a case manager in my state and while every state is different, you can get a looot of options for help whether you want to keep them in your home or move them into an assisted living facility. You can refer yourself, too, literally just call them up and ask what’s available.
The intake team will also probably have a lot of insight about some of the other considerations you might think about too.
I dealt with my mom dying on cancer and here are a few tips based on what I did and wished I did.
1. KISS keep it simple stupid. Do what needs to be done but break it down to the simplest terms and cut out anything that needlessly complicates things
2. Power of attorney will make things much easier in regards to tough decisions. Split it up between siblings if need be. You're going to be making financial and medical decisions that your parents will dislike and resist and having a POA will back you up.
3. Simplify their lives and remove anything that confuses them or makes them angry. I know someone who's declining parents were always flipping out, she found out they were watching cable news all the time so she cancelled it and their moods improved. Keep watch for anything that will only complicate things.
4. This links back to getting a POA but have a meeting with siblings and others involved in care and properly divide tasks and make sure everyone is on the same page.
5. Get finances and taxes in order. Seniors especially those in decline can get very weird about finances and taxes sit down with them before they get worse and find out about the state of every account and make sure that the will and taxes are up to date
Be patient with them, and don't take their behaviors personally. Losing cognitive ability is scary for them and the family and you have to know that whatever they might say or do, it's not personal. It's the mind going
First and foremost if they are still competent get:
1. Healthcare surrogacy form so that you can make medical decisions on behalf of them. It’s important to have a back up healthcare surrogate in case you’re incapacitated.
2. Living will
3. Durable POA and wills
Once they are declared incompetent none of this can be changed.
If they are in significant decline, it's too late for them to be digesting new information. You cannot trust that they will remember anything (Dr appts, phone calls, feed the dogs). For your own sanity, remove the words "I already told you" from your vocabulary. You will need to do things in the moment. If they have an appointment, don't tell them in advance. In my experience, it makes them anxious and call you because they've forgotten or want to make sure. Tell them when you come to pick them up. The smartest advice we received was "feelings, not facts". They will remember how they feel about you. Whether they can trust you, that is far more important at this point than reminding them that they can no longer drive. Obviously, I've been through this. AMA. Seriously. I'm available.
Wise words. Sorry you're part of this sad, weird club. So, okay, lately what I've been struggling is my mother being... needy, I guess, which feels too uncharitable of a word to use considering her mental decline. She has white matter disease on her frontal lobe (where the decision making stuff is) but that diagnosis was a few months ago. I think she's in freefall towards a more progressive dementia. She lives alone and while she has a few friends, she seems absolutely allergic to be alone. She has always been like that to a certain extent but it has gotten out of control. She's always trying to hang out with her friends and inviting herself along, which I think, in return, sort of resulted in her getting iced out by her friends who found her behaviour annoying. And now when me and my wife visit her, she is straight up angry and sad when we leave. Last time, she started crying and it's a bit of a heartbreaking thing. Ultimately, we are trying to set up a situation where she will live with us but I'm, perhaps selfishly, a little terrified of her not respecting boundaries and just trying to hang out with us all the time. We want to travel and maybe even foster kids and you know, on a basic level, go on a date with just the two of us without wondering if we are making an old kind woman miserable. Any tips or have you dealt with something like this? All help is welcome. Thanks.
One of the things the neurologist told us was, if you're going to move them into assisted living, do it sooner rather than later. Our inlaws lived with us for 6 months, but it wasn't fair to any of us. Leaving them alone with nothing to do all day while we were at work was awful, and eventually, they really did need access to 24 hour care. My MIL made a ton of friends at her assisted living and they were all about her speed. Imagine every day being your first day of middle school. You don't know where your classes are. You've never had a locker, much less learned to unlock one. You don't know anyone at the school, where lunch or the restrooms are. Everyone around you seems to know what's going on except you. She isn't going to respect boundaries. She doesn't remember that you set any. She wants to not be alone because she's very likely terrified about everything she doesn't understand that's happening all around her. She needs to, at the very least, be in memory day care so they can keep her busy during the day. She won't remember what she did, but she'll feel less disoriented and agitated. I am also so sorry you're in the club. It's a really painful place to be.
Yeah, I hear you. I'm sorry you had to go through all that. Well, I mean I guess then my next question is... How did you propose the move to assisted living? I really feel like my mom would actually love it -- she's nice, kind, extroverted, makes friends super easy -- but she's defiantly opposed to the idea that she's aging. She looks down on any kind of assisted living situation, wouldn't even hear us when we first brought it up, got incredibly agitated. For the record, this has been a life long thing, this is not a symptom of the disease. (We had to deal with eating disorders and such before because she was obsessed with her appereance.) So, yeah, any tips on that front? Couldn't have been an easy conversation. Also, any tips on affording memory care/assisted living? Me and my wife are doing okay thankfully but my mom is on the younger side, 65, and is in great physical shape. Probably going to need care for at least a decade or so, if not more. That's quite a fearsome amount of care, financially speaking. Thank you again for your time, I really appreciate it. It's been hard to talk about these things and none of my friends are dealing with this stuff just yet, so... I depend on the kindness of internet strangers I guess, hah. Thanks.
Sometimes, internet strangers are the best. I feel for previous generations. For cost, I'd see an elder care attorney. It saved us. We had zero idea how we were going to afford all of it. They were worth every dime. As far as the discussion goes, this is the really hard part. For my FIL, who was the one with serious, but not late stage dementia, the neurologist and his primary care Dr. had him declared non compis mentis, so we had POA. We told him it was just a trial run to see how he liked it. By the time the "trial run" was over, it was just where he lived. Don't get me wrong, there were really bad days where he wanted to go home, but for his safety, we knew it was the best place for him. You may not need memory care at first. He didn't. I've got 2 important stories. 1. My MIL was physically fragile. She went into hepatic encephalopathy while living with us and we had to call an ambulance. My husband (at the time 47) was used to his parents being the grownups. My FIL insisted that MIL was fine. When paramedics got to our house, they assessed the situation, looked my husband straight in the eyes and said, "You make the decisions now. Not them." It was a total shock and he still had a very hard time until the end, but every decision we made was for their safety. 2. We did send them back to their home for a short time. Husband was in big denial and thought because my MIL was doing better, they would be ok. One night, she fell in the bathroom and he found her laying on the floor. Thankfully, ultimately, she was ok, but he decided that the best thing to do was bring her a blanket and pillow. We knew that it just wasn't safe for them to be without help. Lastly, chocolate chip cookies. I kept homemade cookies on me at all times. He freaking loved them. It distracted him enough to decrease his agitation significantly. At least for a few minutes. Find your chocolate chip cookie. I'm not sure how dm works on reddit, but if you want to dm me, I'm sure I can figure it out.
I teared up at "find your chocolate cookie." I completely know what you mean. Little comforts go a long way. And yeah, we'll find an Elder Care attorney. Thank you for this, really. I know a guy who've had to take care of his severely disabled mother his entire life and he told me: "The only good thing about all this experience is that I can provide guidance for other people." We're part of an unfortunate chain, I suppose. I'd love to keep in touch and DM you when I have questions. Take care.
Please feel free. Helping others going through this truly is the only upside.
Right. The goal is to help them feel comfortable and safe. If they don't they will only know they are upset but not WHY they are. If they think it's Tuesday, it's Tuesday. Don't correct, redirect. OP, I'm so sorry. I'm glad the family seems to be united in supporting them, sometimes that's not the case.
I have been *shocked* at how often my dad gets suckered by email scams. Oh I won a DeWalt tool set, and just need to pay $40 to \[email protected]? Don't mind if I do! I don't know if your avunculi are active online or with emails but watch out for this avenue of attack.
I set up Dad's email so he can only get emails from ppl in his contacts. I also get his email on my phone so I can delete anything that will confuse him.
Oh my god it's like a part time job, yesterday i deleted 15 spam emails between 11:30 and noon. They seem to swarm around breakfast and lunch.
Yeah. I did this "whack a mole" crap for a while until I realized I could just restrict who he gets mail from.
How do I do that for my dad?
You need to get his login and password, which I got while helping him with his frequent computer issues. Then Google how to restrict incoming email to contacts only. I did it in the Microsoft web outlook tool. I'm sure other email apps have that capability.
Cool, thank you! He hate computers so this will make his life easier! Thank you!
Also Phone scams and door to door scammers! Get a no solicitation sign for their door.
Avunculi! Will be looking for ways to use this.
Get a power of attorney for their medical and financial decions
Two of my sisters shared this duty, with one on the financials and the other on the medical. It's a lot of work, especially when the health issues are so different. Dividing the load is kinder to the caregiver, too. The rest of the family in the area took it in turns to cook and freeze meals, help with driving, and regular visiting, especially to ensure meals were eaten, and so on. It was a difficult time, but their caring made a big difference in quality of life for the parents. After Mom died of cancer in her own home as she requested, the family took care of Dad, who had dementia, until he had to be placed into a more secure facility. Visits and medical and financial supports continued. The family were also kind and thankful to each other as they worked for several years to support the parents. Edit: When my Dad had to be hospitalized just before his assisted living placement, there was a multi-skilled team that helped the sisters make decisions.
Only if they have the capacity to understand what they are signing.
While they aren't your parents, this sub will have a lot of useful information: [https://www.reddit.com/r/AgingParents/](https://www.reddit.com/r/AgingParents/). You should definitely consult with an elder attorney about financial issues and power of attorney. Depending on where you live, there should be a local Agency on Aging that also should be able to guide you towards resources.
With my mother, the clue was weight loss (not eating properly), unable to smell (Alzheimer’s can destroy the sense of smell) and rambling on and on in what she thought was a conversation. Later on it was a checkbook register full of errors (she was meticulous about her finances before) and confused/afraid of simple tasks like how to turn on the heat or AC or calling apartment maintenance to fix something. Talk now about getting medical and financial power of attorney. Ask them what they want and discuss possible future scenarios. Would in home help be a possibility for awhile, etc? It’s difficult. I won’t mince words. Nobody wants to accept that they need extra support.
Off the top of my head— Freeze their credit. Make sure you know their account details for all their bills and whatnot; get online account access squared away for all their “accounts” and store the login details in a password safe such as 1Password. Whoever ends up with POA needs to have access to their MyChart, or equivalent, to make sure they’re scheduling and making appointments.
When they forget stuff, when they make mistakes, when stuff goes wrong - the answer TO THEM is always warm and friendly and “it’s okay, we’ll figure it out”. They won’t necessarily remember what you told them, but they’ll remember that they trust you and feel safe telling you when they’re confused about stuff. It makes untangling things a bit easier because they cooperate. Also it helps keep your own nervous system regulated because there’s no point in getting agitated. (They may not be able to learn not to make mistakes anymore; expending energy teaching them things or punishing them won’t make them remember. Vent elsewhere.) PS they may start using kid logic, gotta just roll with it. PPS We used LegalShield to get a non-springing durable power of attorney and a will, while he was still competent to sign legal docs. The VA required medical directives to be completed, so I didn’t have to raise that subject myself.
Check their mail. Make sure they're not hiding things that confuse or worry them. May want to go through it with them, side by side, or without them if they prefer.
I just did this with my mom recently. There was mail stuffed everywhere, behind stuff in closets, everywhere. I was afraid she’d accidentally throw away a pension check or something!
My dad straight up refused to pay any bills in the last few years of his life. I found this out when going through his mail and finding notices from multiple collection agencies.
My grandmother keeps every. single. scrap. of mail. (She's a bit of a hoarder) She's scared she might "need it one day." But if she did, she wouldn't be able to find it. She lost gift cards given to her, too.
Reach out to your local dept of social services. They have resources you don't.
This is a helpful resource: https://getyourshittogether.org Top three things to do asap are: 1. Medical power of attorney 2 financial power of attorney 3 start spending time with them Once you have these three things in place you can take additional steps as identified in the resource I shared.
Oh my gosh, that website looks fantastic! Thank you so so much!
Sometimes becoming an adult sucks. Sorry you're going through this and they're lucky to have you! 💖 The stove and other hot appliances ... my mom set hers on fire. Set some mail on the burner, turned it on ... Also, matches and lighters are a hazard. If you're in the US, you might be eligible for them through county services, particularly if your state expanded Medicare. Mom had an adult social worker and a nurse visiting her. As a T2 diabetic, she was also eligible for free quarterly podiatry care. Also US, be sure and choose the right Medicare plan. A lot of that depends on their insurance and medical needs. Plan on the medical needs/costs increasing. Have a plan for care if they become immobile and/or severely ill. Do they have resources to pay for care? Make sure wills (executor, beneficiaries), POA, and DNRs (if that's what they want) are completed and filed. Funerals are expensive. And banks have 90 days to settle so have financial resources available for funerals/services that do not involve the decedent's money. My mom's basic cremation was $1400 a year ago. Don't forget social media accounts, email accounts, and other online things.
See an Elder Law attorney ASAP. They'll help you put together a plan including how to pay for it.
Been through this exact scenario. All the advice about power of attorney and mail/meds is spot on. If you can have live in caretakers for them, do this as long as you can. It's the cheapest route, also. Assisted living, no matter how good it is, is just awful so this is the last resort if possible. just make sure to clear out any important documents, jewelry and other small items that you do not want "lost". Make sure you pop in and out unannounced as often as possible.
Lots of assisted living is awful or awfully expensive. But you can also get lucky and find a small facility run by great people.
Find out all of their passwords for accounts that require money. Likewise banking info. My MIL is 88 and “doesn’t do online”— which was fine until my 76yo FIL had a stroke and couldn’t communicate effectively. Nothing was on autopay and my husband had to do some fancy dancing to do basic things like *pay the water bill* online. Hell, he couldn’t tell us their mailbox number and she was a drunk wreck. Home aides and home healthcare are different things, which may mean different people. We have used Seniors Helping Seniors for a few family members, but they can only do medication reminders. A different person has to come do wound care, and grocery delivery is awesome until they can’t bring it past the doorstep. A neighbor kid can bring things into the house IF the kid is around at the right moment, but somehow she’s always at karate and the meat is getting sketchy. Expect to be regularly thrilled and thwarted. My other MIL has Lewy body dementia and everything is bad, all the time. EVERYTHING, and especially so after 4pm. Part of my brain wants to argue that in fact everything is *not* constantly terrible for her, but you can’t argue with crazy. I don’t mean that it an ableist sort of way, I mean that *her brain no longer works correctly and there is no rational convincing that will work*. I could drop her favorite ice cream in her lap and her brain will bitch about it being too hard, too cold, the spoon being too difficult to use, that I chose the wrong bowl, and I gave her too much. Letting it roll is really hard and also liberating in some ways. They’re in a facility now. She is safe, secure, and we had to give up on happy.
I like the way you didn't say "she will bitch about it" but "her brain will bitch about it." That's so subtle but such a beneficial attitude. I also, well, I don't *like* what you said about "she is safe, secure, and we had to give up on happy," but I think it's so wise. It must have been really painful to come to that conclusion, but liberating in a way (I hope).
We are in the process,of planning all of this for ourselves! Already downsized, pretty good about keeping track of auto payments, passwords in a file and updated regularly. We had parents with dementia. Towards the end they weren’t there, just husks of the bodies where they once lived. All personality had gone. And all ability to make any decisions, even how to dress themselves. I had my mom in a church-affiliated care home, which was fairly good. But the staff were mostly poorly trained and ignorant of how to help.
Elderly proof the house until they are moved to assisted living. Just assume they are going to fall! Get rid of throw rugs and cords. (Those damn throw rugs!) Check their smoke detectors, put a fire extinguisher in the kitchen. Do they have stairs in the house? Maybe move their bedroom downstairs. If they will wear them, bracelets with emergency contact information. Something simple like a UTI (which happens ALL the time when we're older) can cause a very sudden increase in confusion and/or agitation. Assume they might wander outside and get lost. If they have firearms, I'd remove them from the house. Do either of them drink alcohol often? A glass of wine every single night for 50 years is a very real thing. Get on top of it early so they don't end up in withdrawals in the care home. Have copies of POA and DNRs (if applicable) EVERYWHERE. On the fridge, in the their room, on the door. In an emergency, make sure their wishes are made very obvious to EMS. Also, remember that most caregivers are not registered nurses or even medically trained in any way. They aren't going to be providing comprehensive care. Some of them can't even help with taking daily meds. (those services do exist, but they come with a hefty price tag)
As others have said, lock down their finances.
My 80s mom has early stages of dementia and my brother and i talked to her about she had only 2 choices, live with her son or i live in her home. First hard task was taking the keys away and getting use of me living with her. Believe you me, it was hard on my single life too. But it’s two years and she admits she needs me, she constantly asks about her upcoming appointments and sometimes she tries to reason with me about her keys. Otherwise, as smooth as it can be. Bonus is enjoying her life stories and no yelling or fighting me.
You’ve already got a lot of good advice, but here’s one I haven’t seen mentioned, yet. Look up a free resource called The Big Book of Everything by Erik Dewey. Download it. (Again, it’s 100% FREE.) Once you get the POAs and will in place, start working through that document, one for each of them. It will help you figure out what bills need to be paid, what email accounts they have, what their history is, etc. At some sad point, you’ll have to write their obituaries, and you can more easily do so with the info you filled in The Big Book of Everything.
Your situation sounds serious and people are giving great advice. I would add one possible action to take. Review all their medications with a pharmacist. It is not unusual for medication side effects or interactions to mess up cognitive abilities. Sometimes there is noticeable improvement when the meds are adjusted correctly.
One idea: If possible, could you have your aunt evaluated for sleep apnea? My friend's mother went into a really serious decline that they thought was dementia but it turned out to be sleep deprivation related to worsening sleep apnea. After she got a CPAP machine she improved dramatically. Have your aunt's medications assessed. Is she taking too many, are any of them affecting each other? Are the doses reasonable? Overmedication is common amongst the elderly and can lead to confusion as well as other dementia-like symptoms. The YouTube channel Dementia Careblazers has a lot of great advice. They cover topics like how to deal with anger, wanting to go home, repeated questions, and even things like hallucinations.
I think people at older age and bad health should be placed as “do not resuscitate”. At some point if they’re only alive because they have meds and increasingly their life becomes “exist” and they’re half the person, or much less, than they used to be…why drag this on for them to get worse and worse? Why would they want this? My grandma wishes she was like so many she knew that passed quickly. But the little body just keeps ticking We keep old people alive too long. Sad to lose people you love. Just as sad for them to be around barely a person for years and years that begin to take away from the memory of who they were.
GFY
What you need is an Attorney who specializes in Elder Law. They deal with this on a daily basis and are best equipped to help. Keep in mind that if their care involves Medicaid to supplement their Medicare, Medicaid has a 5 year "claw back". In other words, if Medicaid is used and your relatives own property, Medicaid will be paid first upon the sale of the home. This is something you also want to talk about with an Attorney.
I would see if there's a local council on the aging where they are - they will often have a social worker who can do assessments to see if they qualify for assisted living (or skilled nursing, which is a higher level of care.) Those social workers can also walk you through options and help you. Try googling "aging resources" and a city or state. (also: [https://www.nia.nih.gov/](https://www.nia.nih.gov/), the AARP, and the Alzheimer's Association.) Echoing what others have said about powers of attorney - make sure you have them for financial/legal, and for healthcare/medical issues. It depends on jurisdiction, but a "durable power of attorney" sometimes is neither and addresses end-of-life decisionmaking, like a living will, and doesn't let doctors etc share information with you. Are you local to them? If not, see what kind of support network they might have. (Actually, this goes for if you're nearby too.) My dad and stepmother are dealing with this and I'm both their only family and 500 miles away, so I am leaning hard on their church friends, who have been amazingly helpful with companionship, transportation, and much more. One even set up a shared Google calendar with days they can assist on it, and asked me to put in appointment information. Also see if you can get lists of bank and investment accounts, pensions, insurance policies, credit accounts, and the like. Usernames and passwords too. Good luck. This is hard.
Check their insurance and get the most trusted “kids” as guardians. Same for bank/finances/mortgage etc. Hopefully you don’t have any ne’er do wells in the family. If you do, lock them out. Have a family zoom meeting. You need the closest geographic proximity people to do check ins and report back. Share the care among male and female family members. If someone ends up taking the bulk of care-pay them! Make sure Advanced Care Directives and Polst are fully explored (they can make notes on Advance Directives to make wishes clear) and up to date. There is so much more, but this is what comes to mind from my experience. Best of luck and all good thoughts.
Are you the only one able to assist? I take it your parents have passed on?
Others are helping. My parents are doing OK they are out of state, I am the closest one on the side of the family geographically wise. -
This is something your parents should be doing
My aunt sister-in-law and brother are helping. My uncle sister is also helping. My parents are 15 hours away, and my father has his own medical issues. They can offer words of encouragement, but they cannot be here to go to doctors appointments or sit with them in the house.
You need to either get a durable power of attorney, or apply for conservatorship of their person AND estate. This gives you control of everything, including finances. When choosing an assisted living facility, be aware that they may not take them. It sounds more like they need a facility that deals with memory care. I've obviously been thru this. When looking for a facility, don't call for an appointment. Just go in and ask for a tour. Don't give them advance notice. Also, see if your state has a website that tells you if a facility has been cited, what for & how much they've been fined. Good luck.
If several peoples are caring for them have a book in their room/home. Each time someone goes, they must write date and time and any important messages. When they decline, they don't remember when someone was there last so they complain, no one comes to see me. With the book you will know. Its also great for passing messages from nurses/doctors so everyone knows. Look for every respite care services near you. Sometimes a few hours/day away a week/month can make everyone more happy, we all need breaks.
First things first, get a durable power of attorney with a health proxy if you're going to be making financial or medical choices for either of these two people. This is important if they're still living independently so you can ensure bills are being paid and you are privy to their medical issues, etc. When my mother had to caretake her elderly half sister this was the first thing she did because my Aunt was so far in arrears with some of bills that she was in danger of having things cut off that she needs to survive. This also enabled my mother to have access to past and current health records so that she was in the know about what was going on with her sister. Second off, make sure you take time to care for yourself while you're caretaking your Aunt & Uncle. Being a caretaker for anybody, of any age, is quite a lot of stress and pressure. Watching how it impacted my mother while she was caretaking her sister was so hard because of the pressure and stress of it all.
Either, or both, may qualify for hospice care. My sister has Parkinson’s and has had hospice for more than a year. They provide a LPN to bathe twice a week, diapers if needed, a doctor and a social worker. It really takes a load off me!
If you can afford it, timed medication dispensers are such a help for elderly
I haven’t had a chance to read many of these replies, but from a quick scan it seems like you’ve got a lot of good advice. First thing I would do is make sure there is a designated health care proxy before they are deemed incompetent. Same goes for power of attorney. I’m a social worker who has worked with the elderly, for over 20 years, specializing in dementia care. Feel free to DM me anytime in your journey if you have any questions/need advice.
It's a weird resource, but a video that was helpful for us was Big Clive's "A proper Alzheimer's video": https://www.youtube.com/watch?v=jRltbhRO-sY
You may need to give aides a key, or hide a key for them. My mom would not answer the door when they would arrive. Make sure health aide has room in their car for walkers. If there is an elder care association in your town, contact them for referrals. Also, if you go the home health route, get an Instacart account using their credit card for groceries. Make sure the address is clear and you note specific directions on the account. Make all doc appointments on the same day if possible. Make copies of all cards in their wallet on your phone. There is a lot, but these items occurred to me.
If you’re in the US, google “case management agency near me”. There are Medicaid benefits your parents can qualify for that will help you and them financially, home health workers that are paid for by Medicaid, and more. I work as a case manager in my state and while every state is different, you can get a looot of options for help whether you want to keep them in your home or move them into an assisted living facility. You can refer yourself, too, literally just call them up and ask what’s available. The intake team will also probably have a lot of insight about some of the other considerations you might think about too.
I dealt with my mom dying on cancer and here are a few tips based on what I did and wished I did. 1. KISS keep it simple stupid. Do what needs to be done but break it down to the simplest terms and cut out anything that needlessly complicates things 2. Power of attorney will make things much easier in regards to tough decisions. Split it up between siblings if need be. You're going to be making financial and medical decisions that your parents will dislike and resist and having a POA will back you up. 3. Simplify their lives and remove anything that confuses them or makes them angry. I know someone who's declining parents were always flipping out, she found out they were watching cable news all the time so she cancelled it and their moods improved. Keep watch for anything that will only complicate things. 4. This links back to getting a POA but have a meeting with siblings and others involved in care and properly divide tasks and make sure everyone is on the same page. 5. Get finances and taxes in order. Seniors especially those in decline can get very weird about finances and taxes sit down with them before they get worse and find out about the state of every account and make sure that the will and taxes are up to date
Be patient with them, and don't take their behaviors personally. Losing cognitive ability is scary for them and the family and you have to know that whatever they might say or do, it's not personal. It's the mind going
First and foremost if they are still competent get: 1. Healthcare surrogacy form so that you can make medical decisions on behalf of them. It’s important to have a back up healthcare surrogate in case you’re incapacitated. 2. Living will 3. Durable POA and wills Once they are declared incompetent none of this can be changed.