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

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!

There is not a way to enjoy your retirement when you are a sole caregiver. I too know I will tick off a lot of posters here when I state my facts. Before 2018 when I was able to get my mom into LTC and get her approved for LTC medicaid I had no life but for caregiving and work. I myself am a nurse and still work. Not retirement age yet. My mom never drove. So besides working, I did all doctors appts and believe me there were many!! Grocery shopping and all errands. So doing all this and working full time... no life!!! I’m sorry many people will think this is harsh but I’m not sorry. Mom never worked outside of the home. There were 3 kids. She always blamed everything on my father who truly was no prize. Passed away in 1997. But really make a dang life for yourself!! When I used to say that to her, she’d say I couldn’t I had you dang kids to take care of!!! Really how about when we grew up?? Also my mom was one of 5 children. All 5 lived in the same town as their parents, my grandparents. I’ll never forget the time she told me her brother, my uncle called and said my grandparents had no food in the house!! Really 5 children all each living 5 minutes away!!! I guess you reap what you sow. She is safe and well cared for in a nursing home all thanks to me and I have my life to live!!!!

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!

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 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

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.

So many of us have or have been in your shoes.

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.

Oh the joys of modern medicine and it’s unintended consequences. My mom has lived with us for six years now. I retired seven years ago and my husband just retired this Spring. No one in my family will help with her or provide a place in their home as a respite while we get away anywhere. I have hired extra help for a few hours a week to come a couple of times each week and help bath and groom her. My fear is that I will die before her or she will live to be 100 and I will not have a retired life at all. She is only 85. It is what it is but I don’t like it at all and hope that I never live to need to be dependent on anyone in my life as I WILL NOT IMPOSE this on any of my children. The two weeks she spent in rehab after a fall at home was constant phone calls from her pleading to get her home due to her morbid fear of being put into a NH. Due to a piddly amount of a pension from her job it puts her just over the limit for any assistance through Medicaid in our State. This site has brought me compassion, empathy, and much comfort but it has also caused me fear for how much worse it is yet to become.

Here is a suggestion, one I have used and it went really well.
My husband was diagnosed with mild cognitive impairment, he still drove, but probably shouldn't have, could get his small breakfast, etc. But not good enough to stay by himself. I wanted to go back East from Arizona to visit my siblings in 5 states, so what to do. From information caregiver support groups, the Area on Aging in my county, I learned it was okay to use senior placement facilities like independent, assisted living type, for respite care. I looked into it, called a place I heard about, visited with the director and placed my husband in it for 22 days. He was free to come and go from the facility as he pleased, he had cooked meals, and they came to his door to take him to the dining room, he participated in some activities; they cleaned his room. They weren't allowed to administer meds because he was just a part time resident, BUT they came to his room 2x a day to see he took his meds; they made sure he showered. It worked well for me, as I got to see family I hadn't seen in years, and I was approaching 70 or even was over. I don't remember what I paid, it was around $1000, maybe more can't remember, but I just added that to my budget for my trip. Then I was able to take it off our income taxes when I filed for that year, as our medical expenses were enough to qualify (meds, transportation, non-covered procedures, eye glasses, hearing aids, , long term care insurance).etc.) Consider something like this.

Obviously, you can't. This is a problem that must be addressed on a national level, and soon. 50 years ago far fewer people lived into their 70's and beyond and, in general, there were more sibs that is common today. Another truth from decades ago was that there were far more single income families.

Things have changed. The number of seniors in their 70's to 90's has ballooned. Their children (in their 50's to 70's) are much busier with jobs of their own, tighter finances, busier schedules. More and more of these aging adults are facing an impossible task of trying to attend to their own busy lives while also trying to care for their elders with little or no help. Not only do today's caregiver's have few--or no--sibs to help out, they probably also cannot count on much help from their own children. Their own children are absorbed in their own vital higher education or careers. There are also likely a smaller family. In the '60's when my grandma lived with us for a winter there were 5 of us to entertain her and keep her busy. If my own kids were to take me in there would be 1 or none.

The change that needs to take place is within the community and within our medical care system. It is unfair both to the adult children and the aging parents to ignore these problems as "family issues." They are not. They are public health issues. Medicare and medicaid must be reformed so that it is much easier for the elderly to get the care they need from trained professionals. Communities should fund both day care and residential facilities for elderly persons who can no longer care for themselves. And these facilities should be paid for by the medical insurance systems we pay into all our lives.

God knows, the decision to move an aging relative (or yourself) into a residential facility is difficult enough without all the guilt-tripping and shaming. The only issue that should be necessary to consider should be the well-being of the older person. Can they safely care for themselves? If not, what amount of care do they need? Only after this point is settled should the question come up of who should provide that care. If a relative wants to help with the care of a parent or grandparent, that is great. But it really is not healthful for either the adult child nor the parent to force the child into more responsibility than he/she feels up to.

Their children and grandchildren should be able to visit with the elderly and enjoy their parents' aging years while trained assistants deal with "babysitting" those who would wander off because their memories no longer function properly. Trained professionals should be readily available to feed and toilet those who can no longer manage these functions. Meanwhile, the ties between the generations could become even stronger as the younger generations deal with the most important issues of emotional well-being while the physical needs are cared for by physicians, nurses, and aides.

Very Utopian, I agree. Probably difficult, if not impossible, to attain any time soon. But I do think that this is the goal we need to be heading for. There is far too much damage done by the anxiety and stress pushed onto younger generations along with the national shoulder shrug of ignoring the needs of the growing elderly population. The current attitude is one in which the needs of the very old are making health and financial problems for those approaching old age. If we do not care for the dilemma of these who are pressed into caregiving now, they will simply continue to have more physical and financial issues which will force them to rely more on their own children. Kicking the can down from one generation to the next doesn't solve the problems. Ultimately, we all will benefit if we extend the protections of our health care systems to include these issues of old age.