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I am retired, I want to travel and have an active social life. My mother does not qualify yet for financial assistance in her care, and has very little money of her own to cover non-family caregivers to give me a break.
You are in the position a number of members of this forum are in. If you take on caregiving responsibilities you also give up much of your autonomy. How much care does your mother need? How much care are you providing? what happens if you don't provide care? Does she need just general assistance - getting to grocery, social visits, a bit of tidying up - or does she need assistance with ADL's or actual nursing care? How many family members are their who can provide any assistance and do they live nearby? How many hours or days of assistance are you providing each week? Does she live with you or you with her? These are the kinds of questions that make a big difference in the advice you'll be given.
Your profile indicates she lives with you but doesn't indicate whether or not she's mobile. Is she? Can she walk, go for car rides? If she is mobile, travel with her, just around the neighborhood, to places of interest...and now or at least soon for color tours. I took my father around various areas, some we hadn't seen before, some we used to visit, for color tours, and around neighborhoods at Christmas to see the displays. Then we'd come home and have hot chocolate. They were welcome outings for both of us.
Does your mother have friends who can visit, once quarantining is past? If so, create a social life with them, for your mother. What are her interests? Can you work on projects with her? Does she enjoy reading, music, or other activity in which you both can participate, and perhaps discuss later?
If she still has mobility, consider watching the Dance for Parkinson's Disease programs which are created to provide safe and easy to accomplish movement for seniors, either standing or sitting. There are videos that can be watched as well.
Bring her into the kitchen when you cook, discuss whatever interests either of you. Make her a part of your activities, even if you are compromising now.
Tell us her interests, what she can still do and it'll be easier to make suggestions.
It may not be ideal for you, but she will appreciate it, as will you years from now and you think back on what you could have done.
If she has very little money, and has not given it away, she should qualify for Medicaid. Go to local county agency for the agency and see what they say is available. Many states will provide for some home care. If your mom or dad was a vet, and she has minimal money, she can qualify for VA benefits that can help pay for someone.
Before the nagative Nancys show up (and yes, I typed nagative!) to tell you how it should be your honor and privilege to stay and provide 100% care for your mom because she gave everything up for you, it ISN'T the same. When we have kids, we are younger, more resilient, and children typically grow both in size and independence. Adults are already grown, but their independence slowly grows into full dependence.
Sure, there are many moms and dads who sacrificed a lot to raise us, but what is the goal in having/raising children? To have full sway over their adulthood or to raise good caring productive adults who have their own lives? Sure, don't abandon mom and dad, but we CAN help without being 100% help!
Did they sacrifice everything and care for their own parents? Some did. Some didn't. My mother and her sisters provided a place for their mother, taking turns, BUT it was before they were retirement age (therefore younger and likely a bit stronger and healthier), still had spouses to help AND their mother didn't have major issues and certainly didn't have dementia. She was gone before their retirement.
I got blasted once when I mentioned I was retired. Like I'm skipping the light fantastic... not. First, I lost my job and wouldn't likely get another with my age and some disability. Second, to date I have had NO real retirement other than I don't work a job outside the house. MY parents had a GREAT retirement. Years of travel, cruises, second home in FL for the winter, get togethers often with other family and friends, probably at least 20 YEARS or more of good times! Since dad's passing, mom has been doing her thing and only recently developed dementia. MY retirement = taking mom's car away before she kills herself or someone else, running errands for her, taking her to appts, bringing supplies, hiring aides to check on her and meds (1 hr/day, as I'm not close enough to do daily checks), realizing she has dementia, take over finances, get more legal paperwork done while we could, get trust set up, find a place for her (less than 2 months of aides, she refused to let them in!), arrange the move, spend almost TWO YEARS clearing, cleaning, arranging repairs and organizing the sale, processing her regular taxes, cap gains to be paid, delivering supplies the facility doesn't provide, more appts, etc. SUMMARY - MY RETIREMENT HAS BEEN TIED UP A GREAT DEAL BY HELPING MY MOTHER. About SIX years now. AKA no retirement really. I don't even want to travel, go on cruises or go to FL for winter, but I DO have things I would rather be doing, at least SOME of the time. Too often I make plans for one day, even a few hours to get necessities and I get a call about something that happened. Plan a day or more away? Not happening. Retirement my ass. My parents had probably seen half the world in the time I've given up to help and manage things for my mother. I do it because my 2 bros are not useful and would botch all this up!!! Have asked for help and all I get back is crap.
So, I hear you. I just wanted to chime in before the NAGS show up and tell you how horrible you are. You aren't.
Does she make over the min for Medicaid? Sometimes Medicaid can cover in-home care - probably not full time, but even part time helps. You may need a consult with EC atty to see if she can qualify for anything, including Medicaid. Many will give a free consult and some might give a break if she/you are low income.
Other than suggesting exploring options and getting help to find out what she might qualify for, I can only offer sympathy. I'm "tied" down, but without the hands-on care. Thankful my parents saved and that I stepped in before someone took advantage of her funds or she squandered them!
Perfectly said. I'm going to copy/paste the first part of what you said about how taking care of elders is NOT comparable to taking care of babies..........for future reference. Oh, and the part about the NAGS showing up to lay down the guilt trips. Good one! :)
You can't have an active life when you're 100% responsible for your mother's care, that's the truth of the matter. I retired a few months ago, and my DH will be retiring in December, and we can't move out of our house and to another state while my mother is still alive, period. I'm the only child and even though she lives in Memory Care, I'm IT. I do all her finances, take her everything she needs and asks for, we visit every Sunday, and on and on. We can't sell this house & move into another one b/c the real estate costs are too high here; same with rentals. We need to stay where we are until she passes away, there's no other answer.
Your profile says you moved your mother into your home and that she has dementia/memory problems. That makes your life even more difficult in that you have to be around (or someone has to) 24/7 as she begins to wander, get under the sink into the chemicals, and into all sorts of mischief in general. Now would be the time to look into applying for Medicaid so you can place her in Skilled Nursing, if she qualifies. It's something to consider.
Otherwise, you'd have to hire care givers to come into your home, at your own expense if mother doesn't have the funds, to care for her while you go out and do things. Realistically, those are the only two options you have: place her or hire in home care givers.
If she doesn't qualify for assistance, she must have some money. Maybe pay someone to stay with her while you take a vacation/break. You have to take care of yourself in order to take care of someone else. I'm fortunate that I have a sister and two brothers AND an aunt to help take care of my mother. It takes all of us even though she is still living on her own at 90. She can do a few things...but we all chip in to take care of the house and yard plus do her shopping and everything else that needs to be done around the house.
Find a facility for your mother otherwise she may outlive you. Then what? What happens to your mom if she outlives you because your running yourself into the ground trying to take care of her 24/7?
As a human being and as her daughter she did have to move her in. Everything isn’t so black & white. We’re talking about LO’s, emotions & respect. My mom doesn’t have a pot to pee in as they say but because she put a condo in my name 4 years ago she doesn’t qualify for LTC Medicaid for another year. As she needs 24/7 care what was I supposed to do? I did the right thing and I’m taking care of her 24/7. There’s no money for outside help, if so we’d do it. I’m an only child. There is no one else! People don’t always have cut & dry options. We need support not criticism.
Or you can turn her care over to the State & wash your hands of anything having to do with your mother so you can do whatever you want - unless there's someone else who's willing to take her on.
Except for respite care or paying for someone to take care of her for set amounts of time, you're stuck.
Taking care of one's parent, parents, sibling, child, etc. for whom you're 100% responsible is just that. It's often thankless, extremely stressful & unfulfilling. Then again it can be just the opposite as well.
I do wish the "ER Dump" suggestions would stop. This isn't a sensible option. It might seem so, if you are on the edge and feel you have nowhere else to turn, but in reality it isn't good for the patient OR for the person who dumps them there.
I don't know this person who runs this site, but I found this when looking up ER dumps and she makes some very valid points:
Some comments are as simple as this is an ER, a place for emergency treatments, such as broken bones, major cuts/bleeding, trauma, etc, They are NOT trained in cognitive disorders. The hospital may have no psych ward or any SAFE place to keep someone with dementia. I would personally consider dumping my LO at the ER the same as handing back the keys to that LO's car.
An ER isn't exactly a safe place either and if you've ever been in one, even if you make it to a exam space/bed, you don't have a security nurse watching over you. That dementia patient starts wandering, and can get into a world of trouble!
Add to that, exactly HOW does one DUMP someone there? Drop off at the entrance? Who knows where the LO ends up - wandering the halls of the hospital or the nearby highway. Sit through check in and waiting room, then boogie once you get into an exam space? Clearly they ARE going to know who you are and they ARE going to either contact you for pickup or you might even get a call/visit from the police for abandonment.
The ER is NOT a dumping ground for someone we no longer want to deal with. It isn't set up for dementia patients, they won't have a clue why the person is there (unless you stick around to answer a few questions, but then they REALLY know who you are!), they likely have no medical history, and again, may have NO good place to shelter this person until they figure out who, what, when, where, how. Without someone to advocate for them, they won't know and the person could be in greater harm than if left at home alone.
Do I have an alternate answer? No, other than suggest trying to work something out well before it reaches the boiling point. If doctor is no help or has no suggestions, find another. Check with social workers. I've read many negative comments regarding contacting the local aging society, but at least TRY. Get legal help. Talk with managers of NHs, AL and/or MC facilities, they may have suggestions - I'm sure they have plenty of contacts who might help.
"While public and community hospitals traditionally have provided charity care to indigent people in need of medical attention, the problem of granny dumping presents a more complex set of issues. In a case of granny dumping, the elder's needs usually extend beyond medical care to other basic needs such as shelter and assistance with daily life activities. Granny dumping creates a burden for hospitals not only by increasing the amount of economic resources devoted to charity care, but also by extending the scope and complexity of the abandoned patient's needs."
{{{hear that, all those who complain about medical costs????}}} That WAS a good point. Housing "granny" is more than just a bed and 3 hots.
Consider this from that article:
"Some informal surveys suggest that the granny dumping problem is prevalent and growing throughout the United States. In response to its survey, the American College of Emergency Physicians received responses from 169 emergency departments across the country, reporting an average of eight abandonments a week." An extrapolation of this number leads to an estimate of 70,000 granny dumping cases per year."
Best I can tell, this article was written in 1992!!!!! Imagine how much worse it might be today, almost 30 years later? I didn't read the whole thing, but I think these statements make my point.
The sad reality is that in many cases there IS no other option. If Mom needs nursing home care and you try to place her in one and have no success and you can't care for herself anymore, there is no other place to turn. The hospitals are able to get things done when you can't. In some cases it is necessary.
As I noted in my other comment, it ISN'T comparable. It isn't always a blessing either. Babies do generally sleep a lot. Some with dementia do as well, but many others do not, or have weird sleep/wake patterns. Sure, there is a lot of care involved for babies/children, but again, it ISN'T the same! Babies are little and easy to move around to do what you need to do. Babies grow and learn and become independent. Babies are NOT full grown adults with dementia. Might as well say baseball is the same as football...
A lot of us are seniors ourselves, with our own frailties and medical issues. Some elders with dementia are difficult to care for 24 hr/day. Babysitters for babies, toddlers and young children can generally be found easily and relatively inexpensively. For adults with dementia, NOT so easy and certainly expensive.
Even if we take a parent in, we NEED to get out to run errands, take care of business, and it isn't always easy to find someone who can step in for us. We also need to have some personal time - you CAN get this when raising children, but often can't when dealing with elders with dementia. Some people are still working and NEED that job in order to pay the minimum costs of living. The cost of hiring in-home care, depending on how many hours are needed, can end up being MORE expensive than a facility.
We CAN still care for our LOs without having to take on the HUGE challenge of caring for them 24/7. Try to see this from someone else's perspective. Caring for an aging parent is one thing, caring for an aging parent with dementia is a whole different game. Our mother is in a very nice place, where they can care for her BETTER than I could, in a safer place than MY home. I was able (before virus) to visit with her and enjoy our time together, rather than being a nursemaid all day. I watch over everything, manage her finances, deliver necessities and medications not provided, and it takes a lot of my time. I wouldn't be able to care for her myself and do everything else that needs to be done, for her and me. She outweighs me by a lot and I CAN'T support her weight. My place isn't accessible by her and my bathrooms are too small to handicap. There is NO WAY I could provide the care she gets, period. I have no spouse or any other person living in my home, so who am I going to "lean on"?
Blessing? Not necessarily.
(BTW, some of your issue with this may be that OP wants to have a life during retirement. Who doesn't? My parents had a GLORIOUS retirement! 20+ YEARS of it! So far, the first SIX years of my retirement has been dealing with ensuring she had what she needed when still living in her condo and since then in MC, 1.75 or more of those also spent dealing with her condo to get it clear, clean, repaired and sold, and those are just the "high" points. At this point, I'm wondering who goes first - mom (97), me or my 21.5+ yo cat! Hell of a retirement - her living here with me would have made it Hell on Earth!)
You need to place her in a NH. Your mother will qualify for financial assistance, you just need to spend down her assets until she qualifies for Medicaid. The cost of the NH should eat up her savings quickly, then she goes on LTC Medicaid. If you try and don't have success placing her in a facility on your own, then your options are asking for help from a social worker, APS or the hospital. You need to make it clear to them that you are unable to provide safe care anymore and need help.
She doesn’t have any assets, or qualify for Medicaid, or even her long term disability yet, because even tho she is 80, she is still physically healthy except for the dementia.
First of all I want you to know I’m here to support you. Feel free to message me anytime. I feel we are in the same boat. I’ve been caring for my mom for over 6 years. We live in a condo complex where most are owned but also have some that are rentals. A condo was bought for my mom by her ex, long story! For over 2 years we tried to get her to move in it but she refused. So she rents a condo. The paid for condo just sat empty. We were renting as well. Mm said she wanted us to have it and it would be mine one day anyway. We offered to pay her for it, rent it from her but she refused. We’ve owned it now for about 3-4 years. Moms name isn’t on the deed but she has lifetime benefits. If we had known then what we know now we would have insisted we pay her. Because she gave us the condo not quite 5 years ago she doesn’t qualify for LTC Medicaid. For awhile she was able to live alone with me visiting a few times a day. But as the dementia progressed so did her needs. Because our condo is small we’ve moved into Mom’s to care for her. Our condo is maybe 75 steps from hers and we jokingly call it our retreat. I haven’t been there in weeks. People seem to have all these ideas but can’t seem to get there’s no funds available so we do what we have to do. I totally get where you are! I’d love to travel and enjoy my retirement too, just as our parents did. Don’t you let anyone make you feel bad for what you’re doing. There are many more just like you & I. We are well aware of Medicaid and outside help but we are literally stuck in the middle. Can’t qualify for one and can’t afford the other. Not everyone’s parents saved or have LTC insurance. We need love & support. I’m here for you anytime!!
So she doesn't qualify for a NH because she is medically healthy? What would happen if you weren't there? What if you could not be there for some reason? Work or illness something else catastrophic? I suppose because you had her live with you it has become your responsibility. You've sort of made that choice, but there has to be an option when you no longer can be there for her all the time. I would contact social services, speak to a social worker and explain that you mother needs more assistance than you can give. She needs supervision that you cannot provide. There are limits to what you can do. You could do it before, but not now, it is too much for you. Start telling them you need help. Its possible they have options, maybe your state does cover memory care under Medicaid. If not, at least she'll be on their radar. Its not your fault, there are limits to what you are able to do.
If she doesn't qualify for assistance with her care is this because it is assessed she has little real care need, and you are simply looking after her when she could manage on her own? If it is you who is deciding she needs to be looked after not any professional assessment then go away and live your life as you want to, don't blame your mother for stopping you do things when the decision to do so seems to be yours.
To all the guilt inducing comments, who is going to take care of your LO if you die BEFORE your loved one? 34 percent of all caregivers die before their LO.
I feel your pain. It’s difficult caring for elderly parents, no matter what the circumstances. It’s true that some circumstances are harder than others but it’s hard for all caregivers. Bottom line, it’s a sacrifice. Please don’t allow it to take over your life.
You will hear so much conflicting advice. Some even say there is no love without sacrifice. Hogwash! It shouldn’t be total sacrifice. There are compromises in life but no one has to sign up to be a martyr.
Others will say, take care of yourself because if you risk your own well being then you won’t be able to care for anyone else, including yourself. This is true!
There has to be a balance and you are not selfish if you’re not interested in doing the hands on caregiving. You don’t have to allow a parent to live in your home either.
Trust me, I learned all of this too late and the hard way. I certainly didn’t learn it on my own either. While I was approaching burning out I reached out for help. This forum is a wonderful place to vent with many wise, compassionate people. If you read suggestions that don’t apply, simply disregard it.
I hope you find a viable solution soon and know that you have our support.
Postings like this reaffirms to me that I never ever want either of my two children to care for me if I can no longer care for myself. It can absolutely ruin a parent/child and sibling relationship.
When my children told me after witnessing me caring for my mom said, “Mom, we will care for you like you are caring for your mom.” I quickly responded by saying, “Like hell you will!” I want to be their mom, not their patient. Their job isn’t to be my nurse or caregiver. I want them to remain being my children.
Cwasacz, you have siblings but they don't/won't help. (Many of us have been there my friend!)
So therefore you're it. You feel 100% responsible for your Mother. Your brain is fighting with opposite thoughts: *I must do this - I'm the only one* against your need of your own life *I can't possible do this all!*.
Does that sound right?
A few more questions for you?
What would happen to your Mother if you were seriously ill? And I ask this one a lot... What if you were a long distance truck driver in Alaska? Picture Mother riding along with you... kidding right! Another solution would have to be found. You'd call her Doctor "Doc, Mum can't live alone, leaving it with you".
What if you were never born? Concerned relatives or neighbours would arrange a visit by APS, a Doctor would examine your Mother. Regardless of any physical disability, cognitive issues ARE a disability & DO dramatically alter whether someone can live safely alone. If your Mother cannot do this, she will qualify for some type of care.
Some people become fulltime caregivers & do give up their own lives - others become advocates to get the care their LO requires. (This could be in home with aides, or in a facility).
It can feel overwhelming. Start with the facts. A current medical assessment & then ask who, how, what resources your Mother qualifies for.
Come back & update. It's a long road. Finding the right path for you will take time.
Forgive my ignorance, but can someone explain what exactly is the difference between "granny dump" and "er dump"??? Everything I am reading indicates these are similar terms.
Per Wikipedia: "Granny dumping is defined by the Oxford English Dictionary as "the abandonment of an elderly person in a public place such as a hospital or nursing home, especially by a relative". It may be carried out by family members who are unable or unwilling to continue providing care due to financial problems, burnout, lack of resources (such as home health or assisted living options), or stress."
I consider them to be one and the same - it doesn't specify ER in the definition, but that's the intent, and it does indicate there can be various reasons why
So, why are these terms not the same? I've only read "ER dump" in this forum - I found Granny dump while trying to determine what the legal ramifications would be for an "ER dump." I haven't found any yet, but I can't seriously believe there would be no repercussions for "dumping" someone at the ER, no matter what the reason behind it was. Both terms imply leaving an elder, for WHATEVER reason, at an ER (or some location where one ASSUMEs they might get care...) I'm also going to say that I wouldn't be so sure the hospital has the capability to make magic happen - big city, maybe, small town hospital, eh, not likely. Meanwhile, if no one notices granny or gramps, and they wander off, get lost, drown, get hit by a car, WHO'S FAULT WOULD THAT BE?
Also, sure, there can come a time when for whatever reason one can no longer continue the care (or even start it in the first place), but this is where I read some people suggesting giving over guardianship to the state. There must be a process for this, that doesn't require dumping a person ANYWHERE. We didn't have the best relationship, but I would NEVER consider dumping my mother anywhere. I can't care for her (myriad reasons, given multiple times!), but I CAN see that she is cared for.
BTW, I see someone else commented on an ER trip from MC - mom's place couldn't reach me (no cell service at the time) until I had just arrived home. Meanwhile they sent her to the ER for a minor tumble, and LEFT her there, with NO supervision. I was NOT pleased. When they did reach me, it was to ask if I was going to pick her up - I wasn't even aware that she was there until that moment, and it would take me a while to get there, meanwhile, she is ALONE!!! Jerks also have access to a medical transport company (they have their own transport, but not 24/7), and since they are only 5-10 m from the hospital, it only cost $10. WHY would they let her sit there all that time, unattended!?!?!?!?!
That happened shortly after she moved in, so she was still a bit capable, but she's living in a locked down MC unit FOR A REASON - you don't just send her off with EMS alone and then leave her to fend for herself in an unfamiliar location. Good lord.. when they were giving out brains, these people must've been off fishing.
The difference I see (even though it may not apply to the terms exactly, it s more the spirit of it ), is that is not good to drop granny off when she really doesn't need ER care so you can go on vacation for the weekend. That's bad. That's a dishonorable Granny Dump. However, if you know you are at the end of your rope, can't sleep and your health is suffering because your father gets up in the middle of the night and falls and you can't afford to have anyone else help you watch him, and you've been unable to admit him to a NH, than 911 and a trip to the ER may be your only option left. That scenario is a whole lot different than dropping off granny at the hospital and leaving.
Okay, so she can't qualify for Medicaid, yet. Is there a time line this atty gave you? Does she have to become medically ill, aka need a NH before ANY Medicaid can be filed for?
I didn't need to go that route, and even if I did, every state has different rules and regulations, so I don't have answers for that. But I have read that in some instances/states Medicaid might cover MC. It really doesn't sound like this atty gave you the time of day to really discuss all options.
Is this atty someone who you've worked with before, or just one time for the Medicaid questions? Perhaps try another - not all attys are equal (just like any field, some top of class, some bottom!) Usually (no guarantees!) they will give you a short free consult, so maybe try some others? Just saying she's healthy doesn't quite cut it - as someone else asked, what would become of her if you and your siblings didn't exist? Also, I have read that Medicaid sometimes can pay for in-home care - not full time, but anything is better than nothing. A good atty would know that too.
Call Medicaid directly (be sure to specify this is for LTC) and ask a lot of questions. Call APS? Most of what I have read in this forum is they aren't much help, but they may be able to point you to other resources. Can't hurt to ask. Doctor office - perhaps they can suggest some way to get some care or point you to a SW in the hospital who can advise you better?
The only other suggestion is while her income may be limited to SS, it is something. It likely won't cover a vacation or extended time away, but you should use some of her SS to cover aides to watch her so you can have some ME time, even if it is just a couple of hours/week.
As for siblings, yup, very common. I have 2 biological brothers. When mom passes, I will magically become an only child!!! Already washed one out of my life (haven't made contact in about 2.5 years, but felt I had to relay the mini-stroke, setting up for hospice news. Took about 15 hrs to get "Thanks for update." Bet he's off calculating how much is left that he'll get. Jerk.) The other does nothing to help, thinks the facility handles everything (they don't!) and when mom wouldn't stand/walk, I asked him to take over Mac Deg appts. This is 4x/year - FOUR days a year to help your mother!!! Meanwhile, I get to handle and manage everything else. Jerk Jr.
So, don't waste time and effort even thinking about them. Your anger will only impact you, not them, so stay focused on caring for yourself and your mother! Learn all you can about dementia instead, so that you at least know what you might encounter and be prepared for it. Learn the ways to distract and refocus for those times they get stuck in a rut, over and over. Learn about sun-downing and how to deal with it. And do check out some other EC attys.
"How to qualify for MLTSS? An individual 21 and older can qualify for Managed Long Term Services and Supports (MLTSS) by meeting these established Medicaid requirements:
• Financial Requirements: These include monthly income, as well as total liquid assets. For more detailed information on Medicaid financial eligibility, click here.
• Clinical Requirements: An individual 21 years and older meets the clinical eligibility for Nursing Facility level of care, which means the individual requires hands on assistance with three or more activities of daily living such as bathing, dressing, toileting, locomotion, transfers, eating, and bed mobility or has cognitive deficits and requires supervision and cueing with three or more activities of daily living."
This doesn't say anything about being "unhealthy", but it does talk about cognitive defects and needing assistance with at least 3 ADLs. Your mother has cognitive defects - does she require help with ADLs?
Each state and region should have a council on aging that is a great agency for resources and point you in right direction. You worked your whole life and now retired. You deserve to travel and do what makes you happy! Finding appropriate care for mom now versus later is truly vital. I also love to travel to beach. Not in 5 years due 100% to caregiving. I live with mom. 12 years now. It gets harder not better. I'm thinking of making different choices for my mom's care come the 1st of year. Really don't want the rest of my life to pass me by and regret not living my own life when I was able to. Not a easy situation to find yourself in. Best of luck to you and mom and finding respite. Your local DSS can give you helpful info as well as 211. Not sure if that's your states community outreach phone number but look into Everything you can. You deserve to book that trip and get going!! Don't give up. When one door closes a window will open! Love💜&Light🎆 Dianne
I’ll keep it short: one person cannot do it all. You have a right to your life! I was in your situation, so I know. Explore every option you can, then tell Mom calmly but firmly what you can & will do. Good luck; this is a tough one.
You said you have siblings. Level with them and have a blunt honest conversation and tell them you are taking a two or one week vacation and tell them you will be dropping her off the day before you leave...there is no reason they can’t give you respite. Stand up for yourself and set boundaries.
The thing is the siblings have the right to set boundaries too. And they have. No eldercare.
So the OP may advise of an upcoming holiday but this does not automatically mean the sibs have to lift a finger.
I speak from experience... after hinting at this... and getting a clear no, that doesn't work for me. Yes I could ask, but they can decline. Bullying will never work.
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Does your mother have friends who can visit, once quarantining is past? If so, create a social life with them, for your mother. What are her interests? Can you work on projects with her? Does she enjoy reading, music, or other activity in which you both can participate, and perhaps discuss later?
If she still has mobility, consider watching the Dance for Parkinson's Disease programs which are created to provide safe and easy to accomplish movement for seniors, either standing or sitting. There are videos that can be watched as well.
Bring her into the kitchen when you cook, discuss whatever interests either of you. Make her a part of your activities, even if you are compromising now.
Tell us her interests, what she can still do and it'll be easier to make suggestions.
It may not be ideal for you, but she will appreciate it, as will you years from now and you think back on what you could have done.
The short answer is that it’s damn near impossible to have your own life and travel if you are the sole caregiver.
I support the suggestion of seeing if she qualifies for Medicaid.
Do not feel guilty about wanting or needing time for yourself. You are equally as important. Pushing ourselves too far is a recipe for burnout.
I sincerely hope that you find a solution soon. Look into as many options that may be possible for needed breaks until Medicaid is set into place.
Contact Council on Aging in your area for advice and possible help.
Sure, there are many moms and dads who sacrificed a lot to raise us, but what is the goal in having/raising children? To have full sway over their adulthood or to raise good caring productive adults who have their own lives? Sure, don't abandon mom and dad, but we CAN help without being 100% help!
Did they sacrifice everything and care for their own parents? Some did. Some didn't. My mother and her sisters provided a place for their mother, taking turns, BUT it was before they were retirement age (therefore younger and likely a bit stronger and healthier), still had spouses to help AND their mother didn't have major issues and certainly didn't have dementia. She was gone before their retirement.
I got blasted once when I mentioned I was retired. Like I'm skipping the light fantastic... not. First, I lost my job and wouldn't likely get another with my age and some disability. Second, to date I have had NO real retirement other than I don't work a job outside the house. MY parents had a GREAT retirement. Years of travel, cruises, second home in FL for the winter, get togethers often with other family and friends, probably at least 20 YEARS or more of good times! Since dad's passing, mom has been doing her thing and only recently developed dementia. MY retirement = taking mom's car away before she kills herself or someone else, running errands for her, taking her to appts, bringing supplies, hiring aides to check on her and meds (1 hr/day, as I'm not close enough to do daily checks), realizing she has dementia, take over finances, get more legal paperwork done while we could, get trust set up, find a place for her (less than 2 months of aides, she refused to let them in!), arrange the move, spend almost TWO YEARS clearing, cleaning, arranging repairs and organizing the sale, processing her regular taxes, cap gains to be paid, delivering supplies the facility doesn't provide, more appts, etc. SUMMARY - MY RETIREMENT HAS BEEN TIED UP A GREAT DEAL BY HELPING MY MOTHER. About SIX years now. AKA no retirement really. I don't even want to travel, go on cruises or go to FL for winter, but I DO have things I would rather be doing, at least SOME of the time. Too often I make plans for one day, even a few hours to get necessities and I get a call about something that happened. Plan a day or more away? Not happening. Retirement my ass. My parents had probably seen half the world in the time I've given up to help and manage things for my mother. I do it because my 2 bros are not useful and would botch all this up!!! Have asked for help and all I get back is crap.
So, I hear you. I just wanted to chime in before the NAGS show up and tell you how horrible you are. You aren't.
Does she make over the min for Medicaid? Sometimes Medicaid can cover in-home care - probably not full time, but even part time helps. You may need a consult with EC atty to see if she can qualify for anything, including Medicaid. Many will give a free consult and some might give a break if she/you are low income.
Other than suggesting exploring options and getting help to find out what she might qualify for, I can only offer sympathy. I'm "tied" down, but without the hands-on care. Thankful my parents saved and that I stepped in before someone took advantage of her funds or she squandered them!
Your profile says you moved your mother into your home and that she has dementia/memory problems. That makes your life even more difficult in that you have to be around (or someone has to) 24/7 as she begins to wander, get under the sink into the chemicals, and into all sorts of mischief in general. Now would be the time to look into applying for Medicaid so you can place her in Skilled Nursing, if she qualifies. It's something to consider.
Otherwise, you'd have to hire care givers to come into your home, at your own expense if mother doesn't have the funds, to care for her while you go out and do things. Realistically, those are the only two options you have: place her or hire in home care givers.
Wishing you the best of luck!
Your profile says you "had to move her in".
No, you didn't.
If she's as broke as you say she is, get her on medicaid. Otherwise, put her in a facility until her money runs out, then apply.
Worst case scenario is the ER dump.
You are not obligated to take care of anyone but yourself; assuming no minor children.
I'm sure this sounds harsh, but it's the truth.
Or you can turn her care over to the State & wash your hands of anything having to do with your mother so you can do whatever you want - unless there's someone else who's willing to take her on.
Except for respite care or paying for someone to take care of her for set amounts of time, you're stuck.
Taking care of one's parent, parents, sibling, child, etc. for whom you're 100% responsible is just that. It's often thankless, extremely stressful & unfulfilling. Then again it can be just the opposite as well.
The ball remains in your court . . .
I don't know this person who runs this site, but I found this when looking up ER dumps and she makes some very valid points:
https://pameladwilson.com/dementia-patients-dumped-hospital-emergency-rooms/
Some comments are as simple as this is an ER, a place for emergency treatments, such as broken bones, major cuts/bleeding, trauma, etc, They are NOT trained in cognitive disorders. The hospital may have no psych ward or any SAFE place to keep someone with dementia. I would personally consider dumping my LO at the ER the same as handing back the keys to that LO's car.
An ER isn't exactly a safe place either and if you've ever been in one, even if you make it to a exam space/bed, you don't have a security nurse watching over you. That dementia patient starts wandering, and can get into a world of trouble!
Add to that, exactly HOW does one DUMP someone there? Drop off at the entrance? Who knows where the LO ends up - wandering the halls of the hospital or the nearby highway. Sit through check in and waiting room, then boogie once you get into an exam space? Clearly they ARE going to know who you are and they ARE going to either contact you for pickup or you might even get a call/visit from the police for abandonment.
The ER is NOT a dumping ground for someone we no longer want to deal with. It isn't set up for dementia patients, they won't have a clue why the person is there (unless you stick around to answer a few questions, but then they REALLY know who you are!), they likely have no medical history, and again, may have NO good place to shelter this person until they figure out who, what, when, where, how. Without someone to advocate for them, they won't know and the person could be in greater harm than if left at home alone.
Do I have an alternate answer? No, other than suggest trying to work something out well before it reaches the boiling point. If doctor is no help or has no suggestions, find another. Check with social workers. I've read many negative comments regarding contacting the local aging society, but at least TRY. Get legal help. Talk with managers of NHs, AL and/or MC facilities, they may have suggestions - I'm sure they have plenty of contacts who might help.
From another article (https://digitalcommons.law.yale.edu/cgi/viewcontent.cgi?referer=https://www.google.com/&httpsredir=1&article=1236&context=ylpr):
"While public and community hospitals traditionally have provided charity care to indigent people in need of medical attention, the problem of granny dumping presents a more complex set of issues. In a case of granny dumping, the elder's needs usually extend beyond medical care to other basic needs such as shelter and assistance with daily life activities. Granny dumping creates a burden for hospitals not only by increasing the amount of economic resources devoted to charity care, but also by extending the scope and complexity of the abandoned patient's needs."
{{{hear that, all those who complain about medical costs????}}}
That WAS a good point. Housing "granny" is more than just a bed and 3 hots.
Consider this from that article:
"Some informal surveys suggest that the granny dumping problem is prevalent and growing throughout the United States. In response to its survey, the American College of Emergency Physicians received responses from 169 emergency departments across the country, reporting an average of eight abandonments a week." An extrapolation of this number leads to an estimate of 70,000 granny dumping cases per year."
Best I can tell, this article was written in 1992!!!!! Imagine how much worse it might be today, almost 30 years later? I didn't read the whole thing, but I think these statements make my point.
Please don't recommend Granny Dumps
A lot of us are seniors ourselves, with our own frailties and medical issues. Some elders with dementia are difficult to care for 24 hr/day. Babysitters for babies, toddlers and young children can generally be found easily and relatively inexpensively. For adults with dementia, NOT so easy and certainly expensive.
Even if we take a parent in, we NEED to get out to run errands, take care of business, and it isn't always easy to find someone who can step in for us. We also need to have some personal time - you CAN get this when raising children, but often can't when dealing with elders with dementia. Some people are still working and NEED that job in order to pay the minimum costs of living. The cost of hiring in-home care, depending on how many hours are needed, can end up being MORE expensive than a facility.
We CAN still care for our LOs without having to take on the HUGE challenge of caring for them 24/7. Try to see this from someone else's perspective. Caring for an aging parent is one thing, caring for an aging parent with dementia is a whole different game. Our mother is in a very nice place, where they can care for her BETTER than I could, in a safer place than MY home. I was able (before virus) to visit with her and enjoy our time together, rather than being a nursemaid all day. I watch over everything, manage her finances, deliver necessities and medications not provided, and it takes a lot of my time. I wouldn't be able to care for her myself and do everything else that needs to be done, for her and me. She outweighs me by a lot and I CAN'T support her weight. My place isn't accessible by her and my bathrooms are too small to handicap. There is NO WAY I could provide the care she gets, period. I have no spouse or any other person living in my home, so who am I going to "lean on"?
Blessing? Not necessarily.
(BTW, some of your issue with this may be that OP wants to have a life during retirement. Who doesn't? My parents had a GLORIOUS retirement! 20+ YEARS of it! So far, the first SIX years of my retirement has been dealing with ensuring she had what she needed when still living in her condo and since then in MC, 1.75 or more of those also spent dealing with her condo to get it clear, clean, repaired and sold, and those are just the "high" points. At this point, I'm wondering who goes first - mom (97), me or my 21.5+ yo cat! Hell of a retirement - her living here with me would have made it Hell on Earth!)
Are you actually 100% responsible for your Mother's care?
Or does it just feel that way?
Why does the caregiving have to physically done by you?
I feel your pain. It’s difficult caring for elderly parents, no matter what the circumstances. It’s true that some circumstances are harder than others but it’s hard for all caregivers. Bottom line, it’s a sacrifice. Please don’t allow it to take over your life.
You will hear so much conflicting advice. Some even say there is no love without sacrifice. Hogwash! It shouldn’t be total sacrifice. There are compromises in life but no one has to sign up to be a martyr.
Others will say, take care of yourself because if you risk your own well being then you won’t be able to care for anyone else, including yourself. This is true!
There has to be a balance and you are not selfish if you’re not interested in doing the hands on caregiving. You don’t have to allow a parent to live in your home either.
Trust me, I learned all of this too late and the hard way. I certainly didn’t learn it on my own either. While I was approaching burning out I reached out for help. This forum is a wonderful place to vent with many wise, compassionate people. If you read suggestions that don’t apply, simply disregard it.
I hope you find a viable solution soon and know that you have our support.
Postings like this reaffirms to me that I never ever want either of my two children to care for me if I can no longer care for myself. It can absolutely ruin a parent/child and sibling relationship.
When my children told me after witnessing me caring for my mom said, “Mom, we will care for you like you are caring for your mom.” I quickly responded by saying, “Like hell you will!” I want to be their mom, not their patient. Their job isn’t to be my nurse or caregiver. I want them to remain being my children.
So therefore you're it. You feel 100% responsible for your Mother. Your brain is fighting with opposite thoughts: *I must do this - I'm the only one* against your need of your own life *I can't possible do this all!*.
Does that sound right?
A few more questions for you?
What would happen to your Mother if you were seriously ill? And I ask this one a lot... What if you were a long distance truck driver in Alaska? Picture Mother riding along with you... kidding right! Another solution would have to be found. You'd call her Doctor "Doc, Mum can't live alone, leaving it with you".
What if you were never born? Concerned relatives or neighbours would arrange a visit by APS, a Doctor would examine your Mother. Regardless of any physical disability, cognitive issues ARE a disability & DO dramatically alter whether someone can live safely alone. If your Mother cannot do this, she will qualify for some type of care.
Some people become fulltime caregivers & do give up their own lives - others become advocates to get the care their LO requires. (This could be in home with aides, or in a facility).
It can feel overwhelming. Start with the facts. A current medical assessment & then ask who, how, what resources your Mother qualifies for.
Come back & update. It's a long road. Finding the right path for you will take time.
Per Wikipedia:
"Granny dumping is defined by the Oxford English Dictionary as "the abandonment of an elderly person in a public place such as a hospital or nursing home, especially by a relative". It may be carried out by family members who are unable or unwilling to continue providing care due to financial problems, burnout, lack of resources (such as home health or assisted living options), or stress."
I consider them to be one and the same - it doesn't specify ER in the definition, but that's the intent, and it does indicate there can be various reasons why
So, why are these terms not the same? I've only read "ER dump" in this forum - I found Granny dump while trying to determine what the legal ramifications would be for an "ER dump." I haven't found any yet, but I can't seriously believe there would be no repercussions for "dumping" someone at the ER, no matter what the reason behind it was. Both terms imply leaving an elder, for WHATEVER reason, at an ER (or some location where one ASSUMEs they might get care...) I'm also going to say that I wouldn't be so sure the hospital has the capability to make magic happen - big city, maybe, small town hospital, eh, not likely. Meanwhile, if no one notices granny or gramps, and they wander off, get lost, drown, get hit by a car, WHO'S FAULT WOULD THAT BE?
Also, sure, there can come a time when for whatever reason one can no longer continue the care (or even start it in the first place), but this is where I read some people suggesting giving over guardianship to the state. There must be a process for this, that doesn't require dumping a person ANYWHERE. We didn't have the best relationship, but I would NEVER consider dumping my mother anywhere. I can't care for her (myriad reasons, given multiple times!), but I CAN see that she is cared for.
BTW, I see someone else commented on an ER trip from MC - mom's place couldn't reach me (no cell service at the time) until I had just arrived home. Meanwhile they sent her to the ER for a minor tumble, and LEFT her there, with NO supervision. I was NOT pleased. When they did reach me, it was to ask if I was going to pick her up - I wasn't even aware that she was there until that moment, and it would take me a while to get there, meanwhile, she is ALONE!!! Jerks also have access to a medical transport company (they have their own transport, but not 24/7), and since they are only 5-10 m from the hospital, it only cost $10. WHY would they let her sit there all that time, unattended!?!?!?!?!
That happened shortly after she moved in, so she was still a bit capable, but she's living in a locked down MC unit FOR A REASON - you don't just send her off with EMS alone and then leave her to fend for herself in an unfamiliar location. Good lord.. when they were giving out brains, these people must've been off fishing.
I didn't need to go that route, and even if I did, every state has different rules and regulations, so I don't have answers for that. But I have read that in some instances/states Medicaid might cover MC. It really doesn't sound like this atty gave you the time of day to really discuss all options.
Is this atty someone who you've worked with before, or just one time for the Medicaid questions? Perhaps try another - not all attys are equal (just like any field, some top of class, some bottom!) Usually (no guarantees!) they will give you a short free consult, so maybe try some others? Just saying she's healthy doesn't quite cut it - as someone else asked, what would become of her if you and your siblings didn't exist? Also, I have read that Medicaid sometimes can pay for in-home care - not full time, but anything is better than nothing. A good atty would know that too.
Call Medicaid directly (be sure to specify this is for LTC) and ask a lot of questions. Call APS? Most of what I have read in this forum is they aren't much help, but they may be able to point you to other resources. Can't hurt to ask. Doctor office - perhaps they can suggest some way to get some care or point you to a SW in the hospital who can advise you better?
The only other suggestion is while her income may be limited to SS, it is something. It likely won't cover a vacation or extended time away, but you should use some of her SS to cover aides to watch her so you can have some ME time, even if it is just a couple of hours/week.
As for siblings, yup, very common. I have 2 biological brothers. When mom passes, I will magically become an only child!!! Already washed one out of my life (haven't made contact in about 2.5 years, but felt I had to relay the mini-stroke, setting up for hospice news. Took about 15 hrs to get "Thanks for update." Bet he's off calculating how much is left that he'll get. Jerk.) The other does nothing to help, thinks the facility handles everything (they don't!) and when mom wouldn't stand/walk, I asked him to take over Mac Deg appts. This is 4x/year - FOUR days a year to help your mother!!! Meanwhile, I get to handle and manage everything else. Jerk Jr.
So, don't waste time and effort even thinking about them. Your anger will only impact you, not them, so stay focused on caring for yourself and your mother! Learn all you can about dementia instead, so that you at least know what you might encounter and be prepared for it. Learn the ways to distract and refocus for those times they get stuck in a rut, over and over. Learn about sun-downing and how to deal with it. And do check out some other EC attys.
https://www.nj.gov/humanservices/dmahs/home/mltss.html
This page contains the following:
"How to qualify for MLTSS?
An individual 21 and older can qualify for Managed Long Term Services and Supports (MLTSS) by meeting these established Medicaid requirements:
• Financial Requirements: These include monthly income, as well as total liquid assets. For more detailed information on Medicaid financial eligibility, click here.
• Clinical Requirements:
An individual 21 years and older meets the clinical eligibility for Nursing Facility level of care, which means the individual requires hands on assistance with three or more activities of daily living such as bathing, dressing, toileting, locomotion, transfers, eating, and bed mobility or has cognitive deficits and requires supervision and cueing with three or more activities of daily living."
This doesn't say anything about being "unhealthy", but it does talk about cognitive defects and needing assistance with at least 3 ADLs. Your mother has cognitive defects - does she require help with ADLs?
Dianne
So the OP may advise of an upcoming holiday but this does not automatically mean the sibs have to lift a finger.
I speak from experience... after hinting at this... and getting a clear no, that doesn't work for me. Yes I could ask, but they can decline. Bullying will never work.