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I came home to look in on my mom in 2014 thinking she was dying. She lost 80 lbs after my dad died in 2013 and she couldn't take care of the house or her finances and needed help with 2 or 3 of her ADLs. I shuttle her to and from doctors appointments, stay with her through falls and recovery, stroke, and now... she is becoming increasingly incontinent (refuses briefs or padding), serving her meds (she forgets them and I can't deal with her having a more serious stroke and being in a vegetative state or having to get her through months of physical therapy appointments), needs help toileting, transferring/showering/haircuts, and soon will need me to serve her meals because her knees and shoulders are shot.


She is terrified of nursing homes, and I can understand why. They don't staff well at night, so if you need something, like to get up and go to the bathroom (which is always needed like, RIGHT NOW), you might "sit in it" - especially if you complain... the night crew will ignore you until right before the morning staff comes in.


So, she wants to age in place until her dying day. I would turn back the clock for her, and I want to give her her wish. But with this next level of care requirement, I am finding the restriction of it to be more disturbing to my life balance than I think I can deal with. I am 50 years old and haven't gone on vacation in 3 years. I am finding it hard to sleep, concentrate, relax at all. I am grateful to GOD that I have a good man here as a shoulder to cry on and helping me take care of the house while I work and take care of my mom, but this... this is nursing level care and I am afraid I won't be able to keep my job like this and help her too. If I can't, and I give in to serve her every need until she dies... what will happen to me when she does? I can't start a career and get a mortgage much later in life. And rent where I live is ridiculous.


I feel selfish and angry. Whatever blessings God has in store for me for honoring my mother I am certain are shot because my head isn't in it. Her choices are forcing me to watch my mom die, slowly, right in front of me. They are stripping me of having my own home, enjoying privacy with my love, and any kind of travel is out of the question (moot point at the moment because of COVID) because she cannot be left without assistance. I keep cycling through selling her home and getting my own place, putting her in a NH but I feel like I will be letting her down, and letting myself down because I couldn't make it the long haul. I believe, love is taking care of family when they need us - and she has never needed me more than now. But, I really didn't come home to be a nurse. I had no idea it was going to be YEARS that this would go on. When I read that back, even I can see the battle between heart and mind.


It's easy for all of us to just say to someone in my position, "Put her in AL or in a NH! Go live your life!" But, when you, and they, will suffer with whichever you choose... how do you deal with that? I want to solve this problem and end the suffering (hers and mine) but have no idea how to do that. I honestly don't even know how she could afford nursing care. I think she makes too much money to qualify for Medicare to cover it and not enough to cover it with her own finances, which would exchange my labor burden with a financial burden that I don't make enough to carry.


I did tell her that if it comes to the point that I cannot safely care for her without putting my own health in danger (I have 2 titanium hips and bad OA) then I will have no choice but to get her help. I suppose that is happening now a little bit (I have skated once or twice when I walk in and she has had an accident, doesn't tell me, and I step in it). She assumes that means we will bring caregivers in for her. And that would be possible to some degree, but we cannot right now because of COVID.


I'm probably just venting but would love to hear your thoughts on the matter. Peace.

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Note: We are in Tennessee.
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You ask "When they will suffer how do you deal with that".
I have dealt with it. I have discovered that I have limitations. Not everything can be fixed.
I was a nurse. A good nurse. And I loved it. But a nurse works, for very good money in my city, 8 hours a day, then goes home and has a life. And a good pension on retirement.
When my brother, the best man I ever knew, got a diagnosis that meant 24 hour care there was one brief shining moment when I said "If you were any kind of a person at all, you would move in and care for your brother the rest of his life". Brief. Shining. Poof. GONE! I would not be able to do that.
I believe I have a right to a life. I believe that we OWE it to our parents to live a good solid giving loving life, OUR OWN life. The father eagle saves his chicks. His chicks don't return to the nest to care for him in old age. They make their OWN nest and care for their own eaglets. Thus does life go on.
Many facilities take patients now. Often they ask you isolate for 14 days before, and they isolate in facility for 14 days after. But as they say, one day covid will be gone. (like a miracle. sorry)
I think that it is time to have the honest conversation. You have given up years of your life already. Will this be easy? No. Will there be tears? Yes. For you both. But this is the circle of life, how it goes. Assure Mom you will do the best you can for her, but that you cannot continue to do care 24/7 and still have a life.
This is YOUR one life and this is YOUR choice, and you will have to make it. There is no choice you can make that doesn't come without pain. You and your Mom WILL suffer from the choice. Whatever choice you make, there WILL be suffering. Life is worth grieving when it comes to these things. I am so sorry for all the pain, but neither your choices nor my sorriness will stave off pain.
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Honoring your mother doesn’t mean abdicating your own life for her. Making sure she gets good care is honoring her. She is at the point that she needs more than care than any one person can handle alone. I had to place my mother in a care facility because if I had not done so she would have dragged me under. I knew that my healthy minded loving mother would not have wanted that for me. And guess what? My mom likes her place. She brags about how good she has it. It took 8 months of tears but she is well and I am alive. You don’t say whether you are a mother. I am not. I cannot imagine being so selfish that I would indenture my child for years so that I may die the way I wish. Have you firsthand experience with nursing homes? Not all are bad. Have you done some research to identify some homes in your area? Start there. Keep an open mind to the possibility that there is a good home where she would get good care and you could visit and make sure she is cared for. And you could get your life back. That would be a win win AND would be honoring your mother.
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Venting is good. I spent 20 years owning a small 6 bed senior residential care home and was able to give many people back a more normal relationship with their parents. Everyone of them dealt with varying degrees of guilt about their decision in the beginning. We provided loving support and families were able to come visit Mom in a happy environment. Everyone of them ended up being so grateful that they made the decision to seek help to support their parents and themselves. There are many really good places out there. You can have a life and still take good care of your mom.

Having said that, I have to admit that I totally understand where you are coming from because I sold my business just before covid hit and immediately pulled my mother out of her retirement community and moved her back to her house and became her full time caregiver. She is also wanting to age in place and making it very difficult for me. Her dementia has created daily challenges. You would think I'd be better prepared than most people but, unfortunately my 10 year old self moved in with us too. I want to give her what she wants and she is putting a lot of guilt on me, but when covid is less of a threat I will be looking for a well run, caring, small facility for her to move into.
You are no good as a caregiver or daughter or anything else if you let yourself be completely used up. I had to accept that it's too late to try to gain her approval at this stage in life. Take care of you too.
Blessings
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ievolvetoo Sep 2020
Yessss. I relate to this so much - the dementia, knowing better but responding out of my child-parent experience sometimes vs adult, and plotting my post COVID moves. :) Wishing you and yours peace and safe passage too.
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You will enjoy Mom so much more when you allow someone else to take on some of the burden. You already sound burned out. You need to keep working for your future.

Moms version of a NH is probably the way she saw them as a girl. They have improved. There are some very nice LTC facilities. Nothing is perfect. Mom will never be cared for like you would have done. With me I was OCD about my Moms clothes matching and her hair looking nice. I put her outfits together for the aides and carried a brush and hairspray with me. The Dementia I couldn't control, but her looking nice I could.

It becomes not what the person wants, its what they need. Seems to me Mom needs 24/7 care that you cannot provide because you work. Start looking at places. If Mom is low income, try Medicaid for in home care. Maybe ask around (after COVID) about respite care at an AL or LTC so you can get away. A number of members talk about "Board and Care". I don't have them in my area, but maybe u do in yours.
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There is “I can’t do this,” and then there is “I don’t want to do this.” Which is yours?

If you break, you serve zero purpose to mom. So if it’s that you actually can’t do this — then placing her and tending to her as the non-caretaker is ideal for both of you.

If it’s that you don’t want to do it, then that’s understandable too. But after she’s gone, you’re the one who has to live with it (whatever choice you made) for possibly the next 20-40 years. It’s not like it’s something you can go back and undo once she’s gone.

It seems you’ve made up your mind that all facilities will suck. I’m sure many do, but as I understand it, many don’t.

Maybe you can spend some time researching what is available to her and reassess. If it’s all truly horrible — I would never let my parent’s life end on that note. But if you should find something of quality and a place you feel you can trust — I’m not sure that sacrificing all of your 50s to care for your mom personally is something you ought to do when someone else can do it better and more happily, while being adequately compensated to do so.
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Sounds like you have convinced yourself she will be in harms way in a nursing home...I disagree after being a nutritional clinical staff member of one for 27 years. I have seen wonderful homes that staff well and provide great care. I had to put my mom in a assisted living memory care 4 months ago and she has actually gotten better...even her in continence has improved..she gained back her 22# she had lost , she walks again, laughs again and I have my sanity back. Is it ideaL? Of course not ...but my goal is for mom to be safe, content and not have a daughter taking care of her who is burned out and bitter..Good luck..This is a tough decision.I also went to counseling...that helps also..
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ievolvetoo Sep 2020
A very good point. Perhaps I need to cast a wider net on her options. Thank you for sharing that observation!!
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I have been a fulltime caregiver for my elderly parent now for ten months. I have pretty much left everything on hold to help him. Job, apartment, relationship. It's a very hard thing to know what the right decisions are from day to day when it comes to your loved one. I pray every day for God's guidance and strength. I do everything now. My parent does not have any serious health issues at the moment but that could change as we all know. If it comes to the point where he needs more care then I can give him, then I am prepared to do that because I know I did what I could to help him. I think it's the same with you. God knows your heart and he will honor and bless you. It sounds like your already being blessed because He has given you a great partner to help you through this.
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The first replies have said it so well, with empathy & real lived experience, so I will add a few different (out there) things.

What if you change you statement just a bit?

From *Her wishes OR my life* to *Her wishes AND my life*. They are actually quite separate things. (It's just that the lines tend to blur when becoming a caregiver).

If her wish is to age in place - she can. But It will take a small village of aides, the skill to organise, patience to deal with various staff & lots of cash. It can be done. Plenty do IF the stars align: ie the cognitive skill, flexible personality & deep bank account.

This is choice 1. Age in place (like a Queen). Your Mother lives how she wishes (in command of her village of helpers) & you are her loving daughter who does daughter things.

Is that a realistic option?

If no. Please go back & read the first posts coz they have met these choices before.

Choice 2. Age in a new place (find the best fit facility). Mother moves to where a village of helpers aleady exists. This is what in our modern ways is called Assisted Living or Nursing Home.

Choice 3. Age in place (the right to rot). This is where someone digs their heels in so hard & WILL stay home despite all danger or squalor & family just cannot change it (without having to go full legal guardianship pathway).

There are more choices out there too. Not just her or you but life for BOTH you.
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ievolvetoo Sep 2020
Yessssss, girl. NAILED IT. Thank you!!
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You really need to know exactly what your mom's financial state is. Assuming that she still has all of her wits, NOW is the time to find out what bank accounts, cd's, funeral plans, burial plots... have been purchased. If done later on, you may overlook accounts or need to hire an attorney or CPA to research all of her assets. The only way to know what services she qualifies for is to find out what her resources are presently and what they are likely to be in the future. That way you can determine what state and/or federal resources she may be entitled to. I think you would most definitely benefit from a few visits with a trained psychologist or if you think you might benefit from medication for a while, then a psychiatrist or psych nurse practitioner. First and foremost, if you don't take care of yourself, you can't do the best job of taking care of anyone else. It sounds like you're physically and mentally exhausted - and who wouldn't be in your circumstances. You have more control in this situation than you might think. You actually choose what you think and how you feel. If you know that you are doing/have done your best then there shouldn't be any reason for you to feel guilty. Here are my (do as I say and not necessarily as I did when I cared for my parents for 15 years; more like, what I wish I did or should have done more of...) best suggestions for you: 1)See a therapist for an hour a week or every 2 weeks. This is YOUR time to talk with someone who is removed from the situation and is not emotionally involved, someone who has YOUR best interests at heart. Your therapist will be a person whom you can share those thoughts you may be thinking you shouldn't be having (but are pretty normal and are shared by many). While you can talk to friends and family, often all you will receive is sympathy for your situation. That's nice but doesn't help you to change or improve your situation. You may or may not want to go with your husband. 2) Get outside in the sunshine and go for a walk 15 minutes every or at least most days of the week. If you have a dog, he/she would love to take you for a walk & point out all the wonderful smells in the neighborhood. Can mom walk? You might try taking her for a walk occasionally or if she has a w/c, you and your husband might make an evening walk with mom a family affair. 3) Play some upbeat music when you're home. It has a way of lifting your mood especially on dreary rainy days. 4) Go to You Tube and research guided imagery and meditation. Even once or twice a week, some type of meditation is soothing and calming for the mind and body. I prefer guided imagery because it's easier for me to listen to soothing words than to try to quiet my mind. 5) Keep a journal of your feelings. Write in it before you go to bed. Then right before turning in, make a list of all the things you need to do the next day so you won't be playing them through your head all night. 6) If you belong to a church, synagogue, or other religious affiliation and haven't been able to attend services regularly, consider making it a priority for one day a week. 7) You and/or your husband should attend evening continuing education classes on estate planning, caring for aging parents... You might also seek assistance from the Area Agency on Aging, AARP if you are a member (and maybe even if you're not - $12/year), or the state's information system 2-1-1.
Please take care of yourself. If you get sick, who will care for your family? Lastly, mom will not be here forever, you will be able to take comfort in knowing that while she was here you were her caregiver. Not everyone has such a long opportunity to say good bye...
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ievolvetoo Sep 2020
Holy cow! What a great response!! I am am soooo grateful for the time you took to share these points, perspectives, and obvious expertise. I appreciate it and will take action to follow these suggestions right away and every day. THANK YOU!
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The beauty about this site is that you can vent.  It gives you an outlet to say things that you can't say to anyone else.  It also allows some of us who have been where you are to give you some perspective.  I think when a person makes the comment that they want to die in their home and never make that dreaded move to a nursing home, it is an unrealistic dream that statistically the majority of us will not be able to do.  Don't we all just want to go to sleep peacefully and pass.  Obviously that has not happened for your mother.  There are only a couple of options here....either she has the funds to pay for 24 hr care in her home, or you find a reputable assisted living facility or nursing home nearby where she can go or you accept that this is your life and do nothing but take care of her and break yourself down physically and mentally while doing so.

Don't you just want to be her daughter again?  There are reputable facilities where she can go.  They have appropriate equipment to handle her needs.  As far as funds go, contact an elder lawyer and set up a Millers Trust.  You will have to manage it.  It allows for her money to go towards the nursing home and Medicare pays the difference.  The lawyer can explain it to you. 

I felt so alone when I was making all of these big decisions for my mother.  I am certainly not downplaying the mental exhaustion all of this brings about.  I'm just saying that the sooner you do something, the happier you both will be.
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ievolvetoo Sep 2020
I have never heard of the Millers Trust. I will look into it. Thank you!
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Bless you for trying to honor your mom's desires. 2020 is a hard year. However, you are having difficulties caring for mom - physically and emotionally. You need to make sure you get your own needs met: 8 hours of uninterrupted sleep; regular, balanced meals, time off to have fun and socialize, and meet your own health needs. Please consider getting help NOW: family, friends, folks from your community of faith, or paid help. Consider placing mom in respite AL for a week so you can have a vacation.

Please understand that your mom's care will continue to get to be more and more. Make sure she wears incontinence clothing. There are some cute-looking disposable underwear for women. Make sure her clothing is easy to remove for toileting and bathing. Streamline your/her place so cleaning is easier, but keep everything that is useful, beautiful, or makes life easier. Since you have joint issues, you might consider asking the doctor for physical therapy consult so you can learn new methods of assisting your mom without hurting yourself. Physical therapists can also recommend different devices to help you as well and teach you how to use them.

P.S. I have OA in both knees and hands. Meds are working for the knees. I had hand surgery on both hands - one at a time - which I highly recommend.
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You can have both a life and good care for your mother, just know up front that neither will be perfect. Have you actually toured assisted living places, looked into them personally, or are you relying on what you’ve heard? There’s no substitute for checking things out yourself. Despite Covid you may find an option that surprises you. If that isn’t a possibility for you, it’s time to put some new things in place with mom to make life easier. Wearing adult undergarments has to be a non negotiable with her, pride over this is gone, she has to consider the risk to you in cleaning up messes. Get to thoroughly know her finances and find a way to hire help. We kept my dad’s helper throughout Covid without issue, the help was far more important and valued than the risk. The helper can work half days and prep meals, do laundry, oversee meds, take mom on errands and appointments, help with showers, whatever you need that is spelled out in advance.
No one person can do everything without breaking, no one doubts your love for your mom, but what good are you to her when you’re exhausted and emotionally spent? I hope you’ll make changes and I wish you the best
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You know about this website? https://www.tn.gov/aging/our-programs.html

Lots of information on there, including the numbers of several people who should know about services and initiatives in your area.

Forgive my curiosity - what are the two subjects you've asked your mother never to talk about?

By the way. I think it already has come to the point where you cannot ... care for her without putting your own health in danger. Your mother isn't the only one who could conceivably have a stroke, a heart attack or a broken hip, you know. Hugs to you, please come back and let us know how you're doing.
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ievolvetoo Sep 2020
Thank you for that link! The two subjects are: Trump and Jim Baker/PTL. I just can't. So sorry if that offends anyone here.
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I feel your pain! I have my MIL to deal with. She is on Medicare and I thought that she wouldn't be able to get Medicaid because she 'makes too much on SS". I was wrong! Call an Elder Lawyer. As it was explained to me: you can get Medicaid by 'going thru the back door' when applying. This Medicaid is to be used ONLY for AL, MC, NH and not for food stamps or cash monthly. I live in Florida and I just got my MIL's Medicaid card in the mail yesterday. Very worth it to look into this. An elder Care Lawyer may be free depending on your financial situation. Also, get a Power Of Attorney, Elder law charged me $150.00 an SOOOO worth it. Good Luck to you.
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TrishM Aug 2020
Who was your lawyer
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You are a compassionate, loving daughter. I comes through clearly in your post.

I too struggle with the role of loving daughter vs nurse. A year ago I made a difficult choice, placing my father, who I adore, who was living with me for fours years - into an assisted living - on the advice of social workers. He has moderate dementia and advancing prostate/bladder issues - conditions which have worsened - necessitating round the clock supervision and care. I was initially pissed when the social workers told me not to take him home from the hospital - but now realize that it saved my life! I would have morphed from 'daughter' to 'nurse' - thus wearing me out and possibly damaging the loving the relationship we share. And now with COVID - I would be a prisoner in my own home with no day care/respite, and likely little at home support. Luckily the place I choose is high quality - and no COVID!

As to affordability - a real concern. Very important to educate yourself on the various levels of adult care and what Medicare/Medicaid pays for. Assisted living and nursing homes are two different things - and who pays is different. Some assisted living facilities are quite nice (yes pricey - but some states are experimenting with alternate payment programs that help keep frail seniors out of nursing homes - which cost states 2-3x more via Medicaid.)

Please be clear that Medicare DOES NOT pay for assisted living, nor does it pay for nursing home care. And ONLY Medicaid pays for nursing home care - and for some home care services. Medicare eligibility is based on age - 65. Medicaid has financial criteria. If mom owns the house she lives in - it's important that you see a lawyer about a trust - which may help protect from Medicaid.

I can also relate to your concerns about moving an elder into a facility - in the middle of this pandemic - with the no visit policy - which makes it hard to monitor care - and to build relationships with staff. SO important for you to have a physical presence at the facility - for your own reassurance and sanity; to clarify/confirm whatever you parent may tell you is happening - or not happening; and also to help staff get to know your elder - really they are mostly kind compassionate people - but you know your elder way more than they do - offer them insight into elder's likes, dislikes, preferences, triggers - if done properly, the staff will appreciate you - and it will result in better, more individualized care. Hopefully visit restrictions will ease up soon.

Another benefit of facility care - assuming they are doing their best and you have built a good relationship - is that you should feel less alone. Having a 'team' of caregivers helps.

Aging in place IS the preferred path - but in the end - taking good care of Mom - may involve some type of facility. You will know when you've reached a tipping point.

I recall hearing someone say they'd never put their loved one in a facility - and I would have concurred. But now I've done a complete turn-around - "Why would you deprive them and yourself of the care and support?" Perhaps a testament to my Dad's facility - and my ability to let go of some things (like giving up control over how he's dressed - as long as he/clothes are clean.)

Good Luck!
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As you said, both options are not great. Watching her deteriorate in her home because you can't do it all (and no one could!), or assisted living.

Ultimately the goal is for her to have the best quality of life in the remaining time she has. And that cannot happen if she stays at home.

If she doesn't have dementia... can you talk with her about it? If she is still aware, she can understand where you're coming from. Could you maybe tour some places with her, so she sees they're not all horrible places? A decent facility won't let their residents sit in their own pee/poop as a punishment!
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Vent away! It should not have to be either/or, your life or hers, but instead, some adjustments and compromise on both your parts. It sounds like you have already been making plenty of compromises. You can give her choices within boundaries that You create. Most cities and states have Aging Care Services that you can check into to help come up with options.

Through this website, I found a home health care provider in our area for my very stubborn mom, who did not believe she needed any help. I could not be that person for her anymore. I tried it long distance for a couple of years. I finally explained to my mom that I wanted to support her as her daughter, wanted to laugh with her and do things together (pre Covid!), and not have our sole relationship to be her as the patient and me as “Nurse Rachet”. She understood that, and that made it more palatable for her to start having a complete stranger come to her home 3x/week. I asked her to give it 6 weeks and we would review how it was going. She and the HHC provider developed a very good relationship, and I turned into the “case manager “, who initially introduced them and was later able to step back. The HHC provider would text or call me to keep me abreast of how things were going every week, or if she had questions or concerns.

I hope this helps. You both deserve a good life, and there are people out there who can help. All the very best to you and your mom!
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ievolvetoo Sep 2020
Yes! That's it! I really am most uncomfortable when I have to be "Nurse Rachet!" I just want to be her care manager and her daughter. Trying to find that balance and will definitely look into the Aging Care Services websites here. Thank you!!!
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If there is money for caregivers, then hire then now. They can wear masks and gloves and wash hands often. Their goal is to work and earn pay, so they do have an incentive to try and avoid catching the virus as much as you do.

If there is no money to hire people, and you can no longer do this on your own, then tell her that. The house would be her asset to staying out of a nursing home and could be sold to pay for hired help (assuming she could live at your house). Explain that the funds could be used to honor her wishes.

I would also have a chat with her, if she still understands conversations, about wearing pads or briefs to avoid messes. If she is still functional mentally, there is just no reason to pee on the floor or in the bed for someone else to clean up. Are you doing to much creating even more of her inability to do things? - It's very common with kids and elderly. It seems easier and faster to deal with an issue yourself than to have the talk. For every single thing that you do today, when you see them struggling a bit, it will be one less thing they are truly able to do tomorrow - and the ability will not return. Gone forever. Lift chairs are nice, but when you stop using arms and legs to get out of a chair - the ability goes away permanently. Definitely determine what she really can do and what you do for her only because it is easier/quicker. It will lighten your load and benefit her in the long run. Pads/briefs for sure.

Her meds can be ordered online and packaged so that all pills taken at a certain time are in the same pouch. You can even buy plastic medicine zip lock bags and package the meds yourself. Use labels to mark date and time. Set a timer and the packaged pills near her as a reminder to take the meds. Easy to check date/time on unused pkgs to see if she skipped any pills. Just a suggestion that would depend on her level of mental functioning.
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I gave up my home, my security, my very idenity to come help my 86 year old husband and while I had a good idea of what I was getting into, it turned out worse than I could have imagined. He died fifteen months after I sold my home and gave up everything, leaving me with thirty thousand dollars in medical bills, the same in credit card debt in a community property state, a thousand dollars in the bank, and a house and yard in shambles. In the end, he died alone in a care center after a long stay in the hospital. Now I spend my days dealing with paper work, bill collectors and wondering where I go next at seventy eight, no family, poor health. Was it worth the sacrifice? Yes and no. I did what I thought was right, but destroyed my own life in the process which I don't think God calls us to do. We have a responsibility to fulfill our obligations, but also to be all that we can be. It is not easy to find the overlap and know the difference. Good luck.
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Tynagh Aug 2020
I am so sorry this happened to you. You did the best you could but lately I'm often left wondering: Is this the way life is supposed to be? More often than not I've noticed that caregivers are left in untenable positions. Broke and broken. Good luck to you and virtual hugs.
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Get a good therapist. You have serious "personal stuff". You are close to an edge of loosing your abilities to manage yourself, not to mention your mother. A therapist will help you to make "healthy decisions" and you can get some direction for your mother.
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First of all thank you for loving your mom and wanting to respect her wishes. You need to take care of yourself too. These are very hard times. I helped care for my parents and an elderly aunt. I could never manage without a lot of help. Only you can decide what is the best fit for your family. Many care agencies are still providing home care. I used Concierage Care but there are a lot of agencies. I also am using now private sitters from the church since my dad passed and mom does not need a CNA. Sounds like mom needs a day and a nighttime sitter. You can ask mom's primary care doctor for some referrals. Also request a social worker to help navigate what is available for your mom.
She has got to try some kind of disposable briefs. Some are made now that are decorative. Its a sanitary and health issue for all involved. Get a case of chux disposable pads to use on bed, furniture where ever.
Good luck and the best of wishes.
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My Papa was determined that he would live alone and die there. He tried, he really did. He came home from Rehab and LTC, after 5 months, better able to walk and take care of himself. He had an aide three times a week for a bath. He got an additional 3 years at home.

But it was a slow downhill slide the entire time. He finally got to weak to walk, still fighting to stay home alone. Wouldn’t hear of living with us or us staying with him. Now he’s in a nursing home and he’s much more stable. He’s gained weight, he walks better, he’s a lot more social. But his illnesses mean he won’t be going home again.

There are wonderful nursing homes out there. Check the rating system at Medicare.org. See an Elder Care Attorney, they can get your Mom qualified for Medicaid even if it seems she makes too much money. It’s very doable. Papa is in a 5 star facility, on Medicaid. So it can be done.

You are giving up your life AND the life of your partner. Plus, your Mom will get better care because she will get care 24 hours a day. Go for it, you will be so glad you did. Believe me, I know.
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ievolvetoo Sep 2020
I will definitely check medicare.org and with an elder care attorney. I hadn't thought about giving up my life AND my partners... very, very poignant point. Thank you.
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Your mom may not understand if she has never had to care for her parents. It may be helpful to involve social services to help you approach her about the subject. The difference between caring for children vs adults: In most cases children grow to be independent adults able to care for themselves, think and make decisions for themselves. Your responsibility for them stops at 18 years and you are free. What starts out as minimal tasks when caring for an adult snowballs into 24/7 maximum care and can last for many years longer than 18 because of declining mental and physical condition. No 1 single person can safely provide care for an adult 24/7 with no break, nor should that be attempted. Nursing homes and assisted living facilities have the trained staff that do caregiving for a living. They get to return home after shift and enjoy a normal family life, where as a lone family caregiver is “entrapped” and has no decent life outside of work. It is not unusual for the lone family caregiver to die from stress related illness (or have suicidal ideation) before the care recipient.
Very good suggestions by Becky T In a previous post about checking Medicare.org for ratings.
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Your life comes first!!! Take care of yourself!! Your mother could live well over 100 years old!! People live longer and longer these days with modern medicine. She needs to go into a facility. Please find a therapist to help you through the guilt. You only live once. Start living for yourself before your mother OUTLIVES you!!
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Hi
your a great daughter but there comes a time you need help.
You can use any income she has for in home care or respite care so you can take a much needed vacation.

Contact the Board of social Services in your county and tell them what you need , it’s a start or contact the social services department at your local hospital.

Best to you
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I understand you love and worry about your mom. You can’t give your own life and health up over this Care. Your being honest enough to say that you don’t want to give your life up.
There is respite and at home care of you decide to keep her home
Nursing homes will provide round the clock care and you can visit as much as you want. Your mom will have meals with other people and activities to stimulate her mind
At this point in your moms life you know what’s best for her and you.

Dont feel guilty. One person can’t handle all that work and sacrifice.

Talk to the social worker at the county board of social services or the social worker at your local hospital to get more accurate information on your choices.
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ievolvetoo, I can totally relate. My mom died in February after 5 years of intense caregiving and oversight; this followed many years of generally keeping tabs on her as I am the only child.

My 2 guides for her to remain at home were (1) money and (2) my physical state. I had figured that she could live at home for 5 years with my 25 hours/week of caregiving and Home Instead helpers the rest of the time. Ironically that's about what it came down to when she died. A 5-year framework.

More irony, I had wrenched my back a couple weeks before she died lifting her into bed. Realizing I had reached the end as far as my physical capabilities. Talk about the signs coming together.

My point is to do what is most comfortable for you. As others have said, you can only do so much physically and financially. I was "lucky" in that she died right at the point where I was bracing to make that hard decision based on finances and my physical state. I probably went longer than I should have, but I think that's just human nature. And now after the fact, there is no doubt I did everything I could.

Know that you are a great daughter, whatever decision you make.
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ievolvetoo Sep 2020
I am sorry for your loss and, is it okay to say, I am glad you have come to the end of this painful journey? I wish you peace, remembrance of sweet memories, and a solid look at making the most of the time you have left here. Thank you for your kind words. ((Hugs))
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Imho, it is IMPERATIVE that you take care of yourself, else you fall faint and ill and are good to no one. Your mother needs the help of a medical professional at a facility. Prayers sent.
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Listen to all the good information given here. My mother was one of the reasons my marriage failed. What will you do if your partner decides enough is enough? What will happen to your mother if you go to sleep while driving and either die in an accident or be permanently disabled? What she wants can only be part of the equation. She needs to go where she can get 24/7 care. Will it be perfect? Of course not, nothing is.

It seems to me you have painted yourself into a corner and feel trapped. I agree with some of the others that you could benefit from some professional help.

You said you haven't been on a vacation for 3 years. I want to make a suggestion. Check out several facilities, when you find one, put your mother in it for 3 weeks while you and your loved one take a vacation and then have a week to yourself, even if you work it gives you time to clean our closets etc. Do not call your mother or allow her to call you. The nurses can let you know if it is a true emergency. Remember airplanes, they tell you when the oxygen drops, put it on yourself first, then help others. My parents did this with my grandmother. You never heard such crying, and poor me you are abandoning me in your life. They did it and she survived and my parents marriage was better. I don't know aboout the COVID thing, where my ex is they are accepting new people, they have to be quarantined for two weeks, but, you do what you have to do. My aunt start out being in one of the "respite" rooms then moved to a permanent one when she realized she could not take care of herself.

((HUGS))
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ievolvetoo Sep 2020
Respite vacation! That's it!! Thank you! All of the other fantastic responses here don't really apply either because a) COVID 19 has us scared to death to bring help in (my mom would not make it due to past health issues), or b) she makes too much for state assistance but not enough to pay much more than that for caregivers after paying to maintain her home, food, medicines, and such. Outside help would have to come out of my pocket which is pretty thin because I have to maintain flexible work to stay available for / balance her needs and work. But we could look forward to one or two great vacations a year!! Thank you!!
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