How can I still have an active life, when I am 100% responsible for my mother's care?

My mom lived with us for 5 yrs. and 3 months until she passed away, from Alzheimer's. Because she was a wanderer, I got my exercise running after her every time she stormed out the door. I had to re-adjust my thinking, since, as you know, an active social life will be hampered by your role as a caregiver, but it's like how we've all adjusted during the pandemic. Since we couldn't take my mom out to eat during the last year or so, I cooked our all of our meals at home, the way I do now, during Covid-19. Taking care of her inspired me to write a book about our travails, (not travels, sadly, but travails) called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." (My mom and dog were diagnosed with their respective health issues around the same time.)

I missed spontaneity: I couldn't just run out to run some quick errands. I had to make sure Hubby was home to watch her, (he was retired and I was semi-retired), or I took her along with me, (when her mood allowed). My social life primarily consisted of chatting with friends on the phone. I guess it was preparing me for life during Covid-19. You might want to check into your local senior center, to see if they have activities for your mom, or and/or your local Area on Aging might be able to provide some volunteers to sit with your mom for an hour or so, to give you a break. If you belong to a church or synagogue, they might be able to provide some help as well. At the beginning of things for us, my perspective was, "I 'have' to take care of my mom, " but then I changed my thinking to, "I 'get' to take care of my mom, " and that change of attitude made all the difference. Best of luck. I've been in your boat.

You will have to ask family and friends to help give you a break.

Maybe a Church or some help organizations.

Work on a Care Calendar and see if you can get different people to volunteer one 8 hr shift once a week or every other week.

You get enough people to commit and you'll be able to go out socially and when you get enough people to commit, you could first plan a weekend trip by using 3 people a day doing an 8 hr shift.

Maybe you could find others in your position that have a live one they're caring for and take turns caring for that person along with your mom for a week then they'll do the same for you so you can take a week vacation.

I didn't think my Mom would qualify for Medicaid, but after meeting with a social worker at an assisted living place, we found out she did! Please make sure you rule that out. We also used Care.com and found someone who would come over a few hours a week just to give us a break. It's not that expensive ( 15 dollars an hour) and worth every penny. You have to take care of you too!!

I don’t have any earth shattering answers for you, but I would often find myself envious of others... enjoying their lives...while I was waiting on the next emergency phone call or hearing my dad wonder around his home in the middle of the night. The only thing I can recommend is some form of respite care... in facility or in home. Everyone needs a break from caregiving. As you know, life is not always beautiful, fair, carefree... but the rough parts truly help us relate to others and be a support to others going through similar experiences. When we are exhausted and completely stressed out... this is difficult to keep in mind. I know this phase of life is so hard and unrelenting at times.

I may of missed it, but what is your moms mental and physical shape? Do you have a senior center in your town. My grandma used to love to go there every Wednesday to have lunch $5 and then socialize with others for a while. She did this up until her body started actively dying. She lived until 95. Do you belong to a church where members or even the minister would be willing to give you a few hours break?

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.

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.

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

Maybe read more of this page:
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?

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.

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.

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.

cwasacz,

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.

There is a reason that siblings won’t help. They don’t want to take care of an elderly parent.

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.

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.

If your mom is healthy why can't she stay at home while you travel?

How advanced is the Dementia?

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.

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!!

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.

Three questions I want to look into:

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?

Your mother took care of you. What a blessing to be able to take care of her.

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:

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

Very simple you can't.

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 . . .

You don't.

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.

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?

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.

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.

Wishing you the best of luck!

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!