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

notgoodenough, whistling like a Disney Dwarf, I love ❤️ that answer!! I’ll have to remember that one. Now if only I could get my mother to let me wash her hair, lol.

When will your mother qualify for assistance? Find an NH for her care before you burnout. What would happen to your Mom if you got ill, injured or died? Please find the help your mother requires before it's too late or an emergency crisis happens that could leave both of you without help. Help is available. I pray you find it soon.

I realize this answer may not be for the poster. But, I hope it helps someone. 

I have cared for my mom for almost 5 years. She is 89 and lives in her own home. Physically, she is healthy. Cognitively, she has a moderate decline. 
My partner knew what he was getting into with me, and took on the burden without complaint. I care for my mom, work part time (geriatric research), and am starting my own business. I am extremely lucky. 

All that said, I work extremely hard to keep my mom as independent as possible, and have implemented many technology tools to help me help her. 
When she was driving I had an app on her phone so I got alerts on where she was. 
I have a video doorbell at her home that I answer. 
I monitor her heat and ac with a smart thermostat on my phone - we have a lot of "I'm cold. I'm hot." 
And she has an Alexa device that reads her daily calendar and reminds her to take meds, etc. When her TV goes out, I can have it play music which keeps her calm.
Plus, she has a robust fall detection button. 

I have implemented another half dozen lower tech things to help her stay independent, too:
I make sure she has the specific, pre-packaged, frozen meals that she can cook.

I gave her pods when her shaky hand made measuring detergents hard.

I bought and taught an egg cooker for her hardboiled eggs because she isn't competent with a stove. 

She has lighting that comes on when it is dark outside so she can see well

I bought her a robot vac to keep her home vacuumed. 

Her world has become very small since March. Now, our big outings may be a weekly drive around town, or Friday night Family Dinner. I work hard to keep her brain active in a time with much less social stimulation. We do crafts, she plays games on her tablet, and I tell lots of jokes.

My advice: do everything you can to keep your parents safely independent. Fight the powers of the world to keep their routine, and don't do for them what they can safely do for themselves. 
My mom absolutely needs me, I know, which encroached severely on my life. But, what she needs is for me to implement the system for her to live her daily routine. Everything outside of the day-to-day, I manage behind the scenes, often remotely, which gives her independence and me peace of mind. Bills are auto paid. Meds are auto mailed. Her memory minders are set, and I get an alert if she falls, leaves the house, if a smoke alarm goes off, or someone is at her door. I can be sick for a day or two and know she safe and independent - priceless for my peace of mind! And, in truth, these tools don't costs a lot of money. 

I encourage anyone and everyone to look into what they can do now, to set up high and low tech tools to keep their parents as independent as possible. 
And, yes, my partner and I are going to try a sneak away weekend in early December. That will be the 5 year mark with little more than a quiet dinner out; we need the break.

I'm re-posting part of a Orchid's missive - this is the national need that is becoming daily a more serious need as elders become the largest population. What are we doing as a county to care for "us" as we age? (Almost nothing). This info doesn't necessarily help an adult child manage their elder parent needs NOW although political advocacy is needed (my response follows)

". . . 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. . . . "

* While there is no easy answer, with Covid, most travel is not advised. I believe the question and focus needs to be on stress / anxiety management and learning to take small 'time outs' be it a few hours to a day to a weekend.

* Contact local universities, nursing and social work school programs and see if they have internships or if you could post a sign on a bulletin board looking for care (in exchange for letters of recommendation and experience).

* As the issue may come up, learn how to deal with guilt. Re-affirm that you deserve quality of life and that your mom needs care. It isn't one or the other, it is both.

* Check out counseling centers as interns need hours of experience (like 4,000-8,000 hours to become a psychotherapist). Find an intern to support your mental health.

* Enlist neighbors and friends to lend an hour or a shift now and then.

* Contact local community groups to network. Book clubs, sewing circles, political groups, spiritual-church groups. The more you can reach out and network the more likely you are to get some support / help for you to have time off.

* Do see if your local state / county has a senior service component. Get all the contacts / referrals you can for government support. It might take some digging.

* Learn to breathe, deeply and slowly. Set your phone alarm for every hour to do a few deep breaths.

* Do five minutes of stretching.

* Do anything to shift from the routine of 'caregiving' to self-care. In a Alz seminar recently, it was stated over and over that every little step in the positive direction COUNTS. Knowing this makes it more encouraging to do 30 seconds of something. Gena

you should get basic free help from the council, morning, afternoon and evening, the 15 min medication drop ins, half to one hour if needed in the morning for shower, breakfast and medication and an evening visit to help your mum to bed and give medication, ask your mums doctor to refer your mum to the social department ( if you haven't already done this) and for her to be assessed for the free help that everyone gets, check this out online. For extra help for someone to clean her home or spend time with your mum like a companion, if your mum does not have the money to pay and siblings can't club together for this help then if your mum owns her own property maybe you could re mortgage part of your mums property to pay for help, not ideal but would give you back some free time and peace of mind if you are not around. good luck

This is where I'm at. Thank you. This is helpful. I'm not retired, work full time, but it's just me to be on the lookout for my mother. I'm trying to do that, but also to have a life of my own. My husband passed six years ago, and my youngest is moving out in two weeks. My mother is 89, but very active. I do things with her, and help her out. I do not live with her. I'm just on here for advice when things do change. Taking it a day at a time.

Enlist (aka "hire" for cheap) people to help your mom. Lawn service, housecleaner, meal preparation or delivery... and then make arrangements with other family members, friends, members of faith community, and hired help to care for her while you go on trips or outings with your other friends. Every person needs time off from work and caregiving is work.

Rebecca,
I totally agree with lealonnie. Hire a handyman. I think your grandsons are taken advantage of you. I hired a young man to mow our lawn, he charges $35 for 3/4 acre of land and recently went up to $45 and gladly pay him. I hired a man to plow our driveway in the winter for $40. My brother pays for both, it is his contribution to the household. It is sad that some family members do not take the time out of their day to visit their loved ones. I hope you find a good handyman to help you soon.

I don't see many posts from the elderly that could use help. Sometimes we need to see the other side. When I ask for a bit of help from my adult children I always end any request with "when you have time". Course the story is that they forgot. I realize they have jobs and their own needs. It does hurt when they don't have time for us because they are going camping on any time off work they have (for example) or that their favorite tv show is on tonight. Seems like plenty of time available to talk about Inheritance, lawyers,trust funds. You get the idea . I have two adult grandsons who mow the yard at $100 a time but again it is done when they feel like it or they need to pay their rent. Changing light bulb or small indoor jobs are good for $20 to $50 . I admit I must be doing something wrong and okay I am ready to take my beating so go ahead give it to me. Mainly I want to call it to attention that all sick and or elderly people don't necessarily carry all the fault. We don't want to be dependent on our family any more than they want it. I would love to hear more from the elderly point of view.

In reading all these posts the majority don’t want to be demanded on. That’s usually the case. But we all get old and each new generation is being taught these values. No one is going to take care of their sick and elderly. Sad situation in life. People never think they will be a throw away soon enough but they will.

I had mentioned the Alzheimer's Assn and their webinars in my earlier post, but I attended another one of their sessions today and they mentioned just what Sunnydaze mentioned--respite. They have a toll free number (1-800-272-3900) I believe, and their site should be ALZ.org I know their helpline is a 24 hour line. They've stated in webinars that you can even call them to vent--they'll listen, but, they'll also help. The webinars are free. You may want to try them out. AARP might also be beneficial to you.

This should be a wake-up call to the 40-60 age group to invest in long term health care so their children don’t get the brunt of the caregiving for a parent. Cwasacz, I wish there was a magic solution to your dilemma but it seems your parents did not think to provide for their own care. I’m many countries it’s a given that the children and grandchildren care for the elderly. This country puts them in nursing homes and goes about their lives. Nursing homes is a huge business in this country. It might be wise for you to set an example for your own children by putting your own needs aside for a while. You will be your mothers age someday and need help too. You don’t say if you have siblings to help. If you do it’s time to sit down and talk about your mothers care. Maybe give your mother a year of your caregiving and ask her to go into an assisted living (paid for by Medicare) for a year. She may find she prefers assisted living/nursing home. Talk to your mother about it. Ask her opinion.
i know what your feeling because I went through it. And I did my moms home peritoneal dialysis. It was 24/7. If you really think about it and read this web site for ideas, I know you will find a way. And I hate to sound morbid but it won’t last forever... maybe a few years. My mom passed in March and although it was hard I got thru it and am grateful I could give her those years of comfort. Good luck
sabrina

Imho, Disgustedtoo posted several stellar answers. Thank you, Disgustedtoo.

You don’t give enough details for me to respond adequately. I look after two very elderly parents but not in my own home. They still live in an independent retirement facility but one of them is poorly both mentally and physically. It’s a tough job. I have siblings that are either unwilling or unable to help.
I just tell my siblings when I am leaving for a break of two weeks. One of them steps up to take over. You need to be your own advocate.
If no sibling will step up, I will leave anyway and post the siblings phone numbers in various places in my parents home. They do not know my cell phone number.

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.

Now, I realize that I do not know the entire "situation" presented by the question - but it amazes me that people are not "putting their foot down" about having elderly parents live with them.

None of us are obligated to have our parents live with us full-time. There are other options available if people would just seek them out. We deserve to live our own lives. Nobody is going to give us the Nobel Prize for being a "martyr" in trying to care for a frail, elderly person.

(BTW, I sense that the elderly woman in question is probably using her "not driving" to manipulate her daughter to drive her everywhere. Many, many people in the world have never owned or driven a car - but they figure out how to get around via bus, taxi, Uber, senior shuttles, etc. I see lots of seniors using our city bus system and taxis where I live.)

If the elderly parent has almost no assets and only Social Security as income, then they will qualify for Medicaid. The biggest challenge will be finding a nursing home that accepts Medicaid patients.

Alternatively, you could put her in assisted living as private pay and sell off the condo to pay for it until the money runs out.

I should remind people that Medicaid has a 5-year look-back period. So, if any assets were transferred to somebody else during the previous 5 years, they will be "counted" when determining income eligibility for Medicaid.

Wow this really stirred up comments, my take away is that there are an awful lot of us out here in the same or very similar situation! You can't consider dumping of any kind, that is exactly how so many people end up homeless on our streets now! She is a human being and whatever occurred in the past you do not have to respond to it, just do what is right today! I just told my own sibling this, get over your anger and lets deal with the realities of today. Holding onto your anger and frustration will only harm you.
You need to do more research, find a pro-bono attorney that can help you get her qualified or protect the asset in another way so that you can get her into a facility if that is your goal. Every state and every county has programs that can help, short term and long term. There is a Medicaid Waiver program in most states, the difficulty there is finding a facility that will take the Medicaid waiver, they are rapidly disappearing. There are adult daycare programs in most states. If nothing else, find a vetted person to help out a few hours a week. Many of these healthcare providers are leaving the agencies and going out on there own, which reduces the cost. I found two lovely caregivers to help me out! I found a pro-bono attorney that told me about setting up a trust for my mothers healthcare and her assets, Medicaid cannot touch the assets and similar to the Homested Act in Florida they cannot include it in her assets, so she qualifies. I am no expert but there are experts out there that can help you and guide in the right direction to get help. God Bless and good luck!

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!!!!

Why did you put her condo in your name? That could be used for her nursing care expenses. Sell it and put her in assisted living. Why should the taxpayers have to foot her bill? This is Medicaid fraud.

I am not writing this flippantly. Within reason take care of yourself. Reach out to your parent's network of friends maybe they can help. Of course reach out to your sibs even if they are generally useless. Depending on your parent's condition get a teenage babysitter for an hour or a day. One day at an adult daycare might be a godsend, beg them to help you. I go to a private dance lesson because of Covid three days a week for an hour and a half. It's not world travel but I can lose myself in that hour and a half. Especially because I desperately want to see my wife who lives half a world away. Right or wrong, you signed up for this. Maybe the biggest thing is to try and make an attitude change within yourself until Medicare/Medicaid kicks in. I had to go from globetrotting professional to caregiver. I am a man and it isn't easy for anyone. My father told me before his dementia kicked in to steal a moment for myself anyway I could. You will be able to travel some day, just not right now. All caregivers hate their life sometimes. It's okay to feel that. I miss sex. I miss connection with others. I have been doing this for ten years. Look for ways to develop yourself. Lose or gain weight depending on your goals. Plan your trips; it's okay to fantasize. You say your mother has very little money. How about you? If you've got it, spend it, for whatever. You have a new reality. It is incumbent that you find alternatives. If you live alone and can't get out, consider using dating sites so you can have dinner with someone even if it always means having it at your place; someone out there will be open to it. If I were single and didn't have kids at home, which I do, I would definitely be looking for a partner. You don't have to do that, but you could reach out and find a website that connects you to strangers around the world; they usually would love to practice their English and you can pick their brain about their country and learn things and find different places to visit than the typical tourist traps that everyone goes to. Learn to cook their food. The possibilities are endless. I feel your pain. This to shall pass. Hang in there. If you practice a faith go deeper into it as it is its own reward. Consider gardening as there is something about putting your hands into soil, even if it's just a pot, you may find that it can be deeply calming. Seek and you will find. It will help you make it through to your emancipation. You have my empathy and my very best wishes.

I truly don't want to be judgmental towards anyone's suggestions here, but I'm horrified by some of what I've read: paragraphs full of talk about what some actually call "granny dumping" at ER depts of hospitals. It comes to mind I have heard this kind of talk at times in my life and could never wrap my head around it. Believe me I know how hard it is to be full time caregiver for a LO with dementia --I'm doing it and there are times I wish the ground would open up and swallow him. I don't know how I can manage any more. But I have taken the responsibility because he is a human being, just like me and he has no one else. I do think about what happens if something happens to me. It's not just a thought. I'm trying to find ways for that possibility. Where there's a 'will, there's a way'.
It is no wonder we as Americans are losing our precious liberties, we seem to be more than willing to give them up for the govt. to take care of our problems instead of doing it ourselves. We have allowed the govt. to take literally everything from us as free people. We then turn to the govt. to take another person off our hands. The govt is not going to treat this person well. We truly have turned away from "GOD".
It's very hard being a caregiver for an elderly LO with or without dementia. I will find the strength and perseverance to do what I must --and so can you.

Active life, probably not. Scheduled vacations or outings, maybe. Your profile says you have a sister who helps and a brother who does nothing to help. Not exactly how much care your mom needs all throughout the day. Does she just have to be watched and fed because of decline in memory? Or does she need help going to bathroom and all personal care?

Info also says you added a room for both parents to live at your residence. Did they sell their own home to build this addition? Then, the info says that after dad passed, mom moved in with you. Is it possible that siblings think you benefited from adding on to your home with parents money? If they sold a home to live with or near you, is there any of that money left to hire people when you want to take a trip?

You say she has little money, but doesn't qualify for caregivers. I am guessing that you mean caregivers to give you a week or so off? In my state, there is no respite care for 24/7 assistance in the home. Assuming she gets Medicare or Medicaid, her doctor could order some in home health care (depending on her needs ) to help her with bathing or some physical therapy, but those are quite limited in time spent with your mom. If you are ready for her to move to a facility, you can speak to her doctor and a social worker at a facility to help you with paperwork and applications to get a bed.

Depending on her needs and if siblings could manage her 24/7 care, you might schedule a family meeting with both of them to specify what you need. Maybe a week off quarterly where one of them comes to your house to stay with her. Brother still may decline, but perhaps if you gave sister specific dates she could arrange to come in and stay with her.

You might also check with some nursing facilities that could accommodate keeping her for your break. She could pay what she can pay and siblings could kick some in to cover the expense - if they would agree. Do a little research into temporary respite care at a facility so that you can present siblings with estimated cost to give you a break.

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.

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.

Actually with the pandemic, maybe you can use that to your advantage. when speaking to your mom have some travel brochures and say something like. Mom I am planning this what or where do you want to go while I am away. Or how do you think we can work this so you are not alone? Not an easy conversation

I'm new to this forum and don't know how to access all the additional information others are saying they got from your "profile" so I'm not sure how much time you think you have before your mom can access Medicaid assistance. What I do see in what you wrote is that she doesn't qualify "yet". That means that in whatever time frame there is, she will qualify and that will ease some of your responsibilities. You have and end date to look forward to...some never get there... Before you get there though, have you checked in with the Alzheimer's Association? I've been checking them out and they have tons of free webinars covering an enormous range of issues. Taking some time out of your day to access some of the sites such as theirs and seek helpful input. Also, have you looked into adult day care centers or senior places? There may be some free ones depending on where you live. That would get your mom some care for part of the day. And, since we're in the midst of a pandemic and traveling isn't the greatest thing right how, perhaps you could look into some of the forums for people who deem themselves stuck inside and unable to travel and get some tips and suggestions on what they've done to help them get through being unable to move about as much as they'd like. They may have some great ideas on what you can do. I saw a video of one young person who made her own video about traveling...playing her own flight attendant, check in person, etc. Be creative. Look for things you can do to not feel so burdened down. You may find new activities that fill your needs....until the time Medicaid will kick in...again, you have a date you can look forward to. Patience...little kids exhibited it with the candy challenge...adults can too, with practice.

Check out medicaid, I think they would help some. If she is eligible for medicare, try them too. But I got the impression she is not eligible yet. She will be for medicaid.

In your profile you write about your mother "She has no financial resources other than to live with me" so how exactly does she "not qualify yet" for financial assistance and Medicaid?

You can’t! My Mom has been living with me almost 21 years. Life has never been the same! She can’t take care of herself. My father & siblings abandoned her! It’s what it is!

Given the current pandemic situation, your travel and social life is/should be restricted. That being said, why trouble yourself until the pandemic makes it more practical for you to pursue your desires. In the mean time, I would start planning how you would handle your mother’s situation when you can actively pursue your desires.