How do I live like this indefinitely?

Sorry but you did have a choice. You never should have moved your mother into your house. Home care never works. Your situation is proof positive of that. You need to put your mom in a nursing home. Don't ask for her or your sister's permission, just do it.

You can't apply for medicaid and get her into a nursing home? Have not the social workers at the hospital given you some direction on where to place her? Don't accept her back in your home when she is hospitalized, whatever they say to get you to do it. You are no longer capable of caring for your mother. You need some care yourself and must get it soon before you become sicker than your mom.

Why haven't you applied for Medicaid for her?

Does she need the MEDICAL criteria for NH Care?

Yes you did have a choice only now you realize you made the wrong one. There is no law saying you had to give up your job/income/financial future to care for your mom. She should have been placed somewhere that a TEAM of people could care for her, not just one. This is too much for one person and totally unfair to your husband. Research your other choices now.

How do people get to this point of quitting a job they need to live on to take on this challenge? My only answer is they wanted to quit and this was an excuse for doing it. I could never have taken my father in because I needed to support myself and my two children. Quitting was not an option. How is it with so many that quitting does seem to be an option?

I'm not understanding why you HAD to take your mother in. How long has she been living with you?

Your sister didn't have her live with her, so why did you take her in?

And why did you take care of her sister when she hurt her foot earlier this year? Does everyone in your family expect you to be their caregiver?

Are you ready to make a change?

To answer your question....you CAN'T live like this indefinitely. PERIOD. You will be the one dying before your mom does at the young age of 40 something. I mean really, why are you willing to give up your life for your mom???
Do you honestly believe that she would want that if she were in her right mind?
Your priorities should be yourself, your husband and your son. They do deserve so much better than what you're giving them and I hate to tell you but you will live to regret the decisions you made by moving mom in and putting her before them. I can tell by your post that you already do have regret.
But the good news is that you can change things now. If mom doesn't yet qualify for Medicaid, then have her use HER assets(not yours)for her care in a skilled nursing facility, until she does qualify.
I would start today looking into the facilities in your area. You can call your local Senior Services. and your local Area Agency on Aging and they can get you going in the right direction.
Your story is heartbreaking and yet another(of many on here)example of why you don't bring a loved one into your home to care for them.
PLEASE decide today that mom will be in a facility by the end of the month so you can get back to just being her daughter and advocate instead of her "absolutely crispy" caregiver.

Mom needs to be placed in a facility. Then you can resume working and get your life back. And her doctor sounds like an idiot.

Have you talked with mom about dialysis and what not going and stopping it means? She is still not 100% past the point of understanding, right?

If she has no money and no means then she would 100% qualify for medicaid. Sounds like a consultation with an elder care attorney may be in order.

As her dementia progresses a talk will be in order regarding discontinuing dialysis.

And seriously you HAD to mow your sisters yard and cook for her because she hurt her foot? Did I read that correctly? Sister should have hired someone to mow her lawn and she certainly could have microwaved something or made herself a sandwich with an injured ankle. If not she should have hired someone to help her while she recovered. Not everything and everyone is your responsibility.

You obviously have a problem saying no and setting boundaries for yourself. If you don't get help and learn how to do this you will go from caring for mom to caring for your sister too in her old age.

Have you had her evaluated for hospice? With her kidney issues and constant hospitalizations, I wouldn't be surprised if she didn't qualify. That would at least bring in nurses to monitor her, and you could make some decisions about her care.

I think you need to sit down with your sister and her doctor to get a clear picture of your mom's condition, expected lifespan, and care needs. My mother was already in a memory care facility, but I made the decision to put her on hospice care and to stop taking her to the hospital to fix things that really couldn't be fixed. She was to be cared for at the nursing home to the extent that it was possible, and with hospice it was possible. Her life was not unnecessarily extended, and she lived seven months on hospice with a far better quality of life than she had going in and out of hospitals and rehab.

Chronic diarrhea and nausea are no way to live -- what's causing that?

Grey - I am sorry you are in this position. You can't live like this indefinitely. It is not sustainable for your overall life and health. If you really can't find a way to move your mother to a facility, you have to find a way to get help in your home so you can get some relief. Do not depend or rely on your sister. Do not. Relying on siblings does not work. If they want to help great, but don't expect them to always help. You have to gain some independence in this situation.

How old is your mother? Does your mother have any funds? If she doesn't go into assisted living, can you pay (with her money) for an aide to come to the home to help out and do some of what you are doing for her. There are also aides who can come to your home just to stay with your mother so you can get out of this house. Of course, this is expensive, that is why I ask if she has any money at all to use for these aides. If she has no funding, there are others on this site with more knowledge about other options.

I feel your pain and wish you a solution that will give you back at least some of your life.

Have you sat down with a Certified Elder Care attorney to talk about moms finances and what to do TO qualify her for Medicaid? If she has too much money, she can move into a Skilled Nursing care facility and pay her way, spending down her savings until it's gone, then apply for Medicaid.

If her income is too high, some states have Miller Trusts where she can put the overage into for her care needs.

My point is, if you haven't spoken to an attorney yet, please do. You can't go on like this or you'll die before mom, God forbid. Then what? Then another sibling takes over or she gets placed, one way or another.

Stop being everbodys solution in life at your own expense! I can relate to you wanting and needing to help mom, but this has gone too far now. Alternatives must be found. For mow, set a strict schedule with your sister to take mom to dialysis and or appointments 2x a week, minimum. Ask for help.

Best of luck.

GreyCe, I get how burned out you are. But don't fight us, we are trying to help.

1. What KIND of doc says she's fine? My mom's PCP thought she was fine, too. A neuropsych workup told a different story

2. Who is following her GI problems? Is she abusing laxatives and Imodium? My mom was?

3. What kind of Medicaid doesn't she qualify for, Community or LTC?

4. Is it assets or income that disqualify her? You can get around both, in most states. Pooled income trusts, Medical spend down, private pay for a few months. Have you looked into those?

5. Hospice is another good avenue to investigate.

Tell us what you know. We really can help most times.

If mom doesn't qualify for Medicaid, she must have financial resources. Those should be used to pay for her care in a facility. The people who would care for her there are professionals, and they can handle it physically and emotionally. It would be the best place for her as well as you.

You're not able to do this anymore. You need a life. Check out the suggestions many have offered here. You may not need to stay stuck unless underneath it all, you really want to be. I don't think that's the case.

Good luck.

You don't, the next time you take her to the hospital you leave her there as you can no longer care for her they will find a place for her.

This is your option, your family should come first, not her.

You have placed yourself in the dutiful daughter trap and you hold the key to unlock the chain that binds you. Time to use it.

This will not get better until you do what is right for your family.

Good Luck!

The only way your Mom would not qualify for Medicaid is if her monthly income is over the income cap set. Some States allow a Qualifying/Miller income trust that the overage is deposited too. Houses are an exempt assets, as is a car. If Mom has money, then use it to hire aides. Best thing is to place her and use her assets to pay privately till she runs out of money and then apply for Medicaid. My Mom had 20k that paid for 2 months privately. Those two months gave me time to apply and get info need to Medicaid. Third month, Medicaid started paying.

Your Mom is 24/7 care. That should get her into Long-term care. She is too much for you. See that Elder Lawyer, you can use her money to pay for him. And it must be an Elder Lawyer because they are versed in Medicaid.

I do not think you made a mistake by taking your mother into your home. Some people on this forum are sure everyone needs to be institutionalized as the first signs of aging. My mother lived with me for almost 5 years while I placed my father in memory care so I feel like I have a good feel for what both choices bring.

I think your mistake was not realizing exactly what you were taking on and not asking for help sooner. Ideally you should have an "emergency" care plan for your mother in case of your own illness - who is going to look after mom if you have the flu or a broken ankle or minor surgery? Or if you just need a day off like you do now?

I suggest you call the Area Agency on Aging and ask for an evaluation of your mother. They can make you aware of programs you may not know of and/or financial resources. When my mom became wheelchair bound and needed someone around all the time, AAA made me aware of an Adult Day Care provided by the state which I found to be a great relief; while mom was at ADC I had worryfree time to myself again. I also found a couple of ladies to stay with mom a few hours at a time so I could attend ballgames and other events. I believe it is essential to have this selfcare time for anyone who is going to care for someone long term. ADC could provide your mother with socialization opportunities too.

Your mom may be eligible for some home care assistance: bathing, companion, or housekeeping. Having someone else come in occasionally to help can ease the load. Some places offer transportation to medical appointments: a volunteer group here takes seniors to dialysis appointments, stays with them, and takes them home again.

Diarrhea and nausea are not normal and mom's PCP or a nurse's call line (offered by many hospitals and insurance plans) may help you determine if medication side and effects or disease may be causing the problem. Diabetes is involved in many kidney problems and some medications and/or eating too much sugar with the medications can cause these problems. Disposable underwear can help the cleanup greatly. You throw away the panty and most of the time it will contain the mess so you're not washing everything every time. Disposable or washable pads for the bed and chairs can help a lot too.

You need to talk with your sister without anger about helping you with mom's care. If you haven't taken care of someone then you do not really realize the load. Maybe sis could come to your home and stay with your mom one night a week so you can go out with your husband. Maybe it would be easier for her to come to your house on the weekend instead of moving your mother - depending on the setup of your house and how much privacy you want. Maybe sis can take more responsibility for shopping and/or errands.

AAA can help you locate facilities and identify how to pay for them too. At least you need to have a "respite" contract with a care facility so if you cannot be available for a period of time, someone could care for mom. What would you do right now if you got a call that your son had been in a wreak and was in a hospital? I had an aunt and a brother that could provide some short term care and a respite contract with a couple of assisted living facilities.

I think when you get some "time off" and take more control of your life again you will feel MUCH better - whether you choose to keep mom at your home or whether you move her into a care facility. Realizing you can no longer take care of a parent can be emotionally difficult - but so is trying to be a good soldier. Even if you turn over the hands on care to someone else, you will still put a fair amount of time in keeping track of appointments and medical care. But you will also get to be a daughter again as well as much more there wife and mother.

“I didn't have a choice but to quit working and move my mom in with me and my family”

Yes, you did.

Undo that terrible choice.

Your story sounds a lot like mine. The two main differences are that one, I didn’t take mom into my home. I probably would have made that mistake if my house were in any way accessible and had a downstairs shower. Thank God it didn’t because after being on this forum I know how hard it is to move mom out once she moves in.

Second, I didn’t quit my job, both for financial and mental health reasons. This was truly my saving grace because it forced mom to accept outside help for the first time, which opened the door for more help over time.

I, too, am resentful, and caring has taken a lot of time away from me and my family. I do recognize now, though, that it was a choice. It didn’t feel that way, as mom always made me feel obligated. But I’m an adult and it WAS my choice. My brother lives close by and chose to do absolutely nothing during crisis after crisis.

I lot of people here say to “place” mom in a NH. I don’t fully understand how one can force someone who hasn’t been declared incompetent to move into AL or a NH. We had to go to court to have my grandmother declared incompetent. If she hadn’t been given heavy duty psych meds to control her violent outbursts she probably would have prevailed.

The only thing you CAN do is step way back, do as others have suggested and the next time she goes to rehab do not allow them to release her back into your home. She will have to use her own money to pay for care. Believe me, I know how moms have a way of making us feel like we have no choice. But we do have a choice.

Reading your post reminds me of the hours I given up, family time I’ve given up, money I’ve spent, work I’ve missed, wear and tear on my car (and gas). I’m putting the brakes on it and hiring 24 hour care (in her home with her $). I’m not giving up any more of my life and time with my family. Mom will be super disappointed and angry, but tbh she’s not overly pleased with what I have done up until now anyway. So why am I killing myself? She doesn’t take any responsibility.

Sorry to hear about how burned out you are, GreyCe. I’ve been there myself.

I am wondering if the problem with your mom not qualifying for Medicaid might be that without realizing the implications her assets were intermingled with yours and your husband’s? We see that a lot on this forum. People with the best of intentions use money from the sale of a parent’s home to remodel their home to accommodate their parent, and it all goes downhill from there. Then when the parent really needs more care than can be reasonably provided at home, which sounds like what is happening to you (the dialysis schedule sounds like a killer), the money’s gone, and Medicaid requires that it be accounted for before they would pay.

Is that what’s going on?

GreyCe.

You say you don't have a choice.
That isn't true.
You DID have a choice.
You still do.

Let me ask you this?
Where would your Mom be if she had no children?
Right, she would be in the care of the State and in placement in a facility.

You have taken on this care.
Your recognize it is not good for you.
It may well kill you.
Where THEN will Mom be?

You will have to now admit that you cannot do it anymore.
Your Mom will have to go into care.
Her assets will go for her care. Then she will be on Medicaid.
At some point she may make the decision to stop dialysis (It has long been in my advance directive that I would never accept it; I would prefer death).
If she does, then this will be over.

Your note to us serves as warning for those who wish to sacrifice their own lives on the funeral pyre. I am so sorry, but there are choices in this. Not easy choices, but choices nonetheless.

You ask how you can live like this indefinitely. There is no indefinitely with dialysis already on the seen. See to it that advance directives for DNR are already done.

See an elder law attorney about qualifications for Medicaid, and for spend down to Medicaid.

Why did you do this to yourself? Nobody said you had to live like this.

This is what you chose.

Oh, GreyCe, my heart breaks for you. You are beyond the point of burnt out. You are in dire need of a break from caregiving immediately before you end up a patient yourself in a hospital. Your mother needs to be placed in a nursing home where she will get 24-hour care since you cannot provide this care for your mother anymore.

You said your mother does not have Medicaid and there’s no help offered by anyone in your state. I’m just curious as to why your mother is not qualified for Medicaid. Do not give up hope where getting help for your mother is concerned. I am advising you to speak to an elder law attorney ASAP to see if he/she can help your mother to qualify for Medicaid and any other state aid.

I can tell that you do love your mother and that you are a good daughter, but you have bitten off more than you can chew when you decided to be your mother’s sole caregiver. Being a caregiver is a very difficult job to do especially when you are doing it all by yourself. Please speak to an elder law attorney ASAP.

Praying that you will find help for your mother ASAP so that you can go back to being the loving mother to your son and the loving wife to your husband.

Also, you have to go back to work. The economy is only getting worse and you could end up dead and your widower bankrupt before your mother dies. You have no idea how bad the future can get from today.

Although the average age from start of dialysis to death is 5 years. How long has she been on dialysis and why have you not called in hospice yet?

Take it from someone who has been there . You will regret not going to see your son. After college , my son moved even further away to get a job . For years I didn’t see my son often . I also left my teen daughter home alone a lot while I was at my parents house .

My parents didn’t live with me but I practically lived with them except I came home to shower and sleep . I only worked part time when I should have been working full time and saving more money towards retirement . I put my family and marriage on hold.

Your mother’s needs are more than one person can handle . And I wouldn’t count on your sister . Your Mom glaring at you . Too bad on Mom if you need a break . Don’t let her pull a guilt trip.

You say you want the best for Mom .
The best you can do for Mom is to stay alive to advocate for her . I’m assuming Mom can’t afford 24/7 in home care so you can go back to work , which is what you need to do for your own financial security . Next time Mom lands in the hospital , you tell them you can NO LONGER TAKE CARE OF MOM. Tell them it’s an UNSAFE DISCHARGE. , ( use these words ) no matter how they say they will send help to the home. It will not be enough help . Do not take mom home with you . They will try to talk you into taking her home . The hospital will have to find a nursing home for Mom . Speak to the social worker .

You aren’t any good to your mother , yourself or your family if you are burnt and at the end of your rope. You matter too . Take back your life .

You say you had no choice but to take mom in your home. Now you have no choice and have to place her in a nursing home . Don’t ruin your family life , health , and finances anymore .

(((Hugs)))

GreyCe, I'm hoping you come back tomorrow when you are a bit rested so we can give you some direction.

😥

Hi GreyCe,
So very sorry for your horrible situation - I understand and feel for you:
My mom is 80. Her and my dad moved in 8 years ago when they were in their early 70s and in pretty good health and were going to be traveling, etc. Woohoo! Then dad died and mom started to decline. Oh boy. After 7 years (well probably more like 5!) of dealing with mild cognitive impairment progressing to dementia, I was DONE. She would go to my sister's for a long weekend once a month which was wonderful.

My mom has most of the ailments yours has except no diabetes or dialysis. But I always felt my mom was very old for her age. Horrible mobility. Didn't take care of herself - very overweight and did as little as possible. I forced her to get her cataracts done and replace both her "bone on bone" knees.

When she couldn't clean her room and bathroom, I hired a cleaning lady with her money. Then her care was getting to be too much because I was burning out AND I had grandkids and wanted to help watch them (much more fulfilling than eldercare, IMHO).

Then came the aides. Started small and ended up with 5 days a week. Then finally moved her to AL. Best thing I ever did. I wish that I had NEVER allowed my parents to move in. I was all for it! Ugh, so naive! I don't know what I thought things were going to be like in the long run but that was my ignorance. My 4 grandparents all died in their mid to late 70s so I really wasn't feeling like my parents were in the running to live to 90 but you just never know, right?

OK, now that you know my saga, I have some comments on some of the many things you touched on in your post. I hope that I (and most of the other posters here) can help you. Some advice seems to annoy you. Ignore it and go on to the next post. Take things with a grain of salt - we're all different and there is not one way to think about things.

You quit your job. I'm sure you realize at some level that this was actually a choice. At the time, you probably felt backed into a corner and this was the solution you came up with. Now you are seeing that it's not as good a plan as you had originally thought. We all make mistakes in this caregiving journey. We're unprepared for it and make choices we regret. But mistakes are not a life sentence. You can and should re-evaluate and do what it best for YOU, your husband and your son.

Your son is away at college. You should NOT be missing out on anything you want to be involved in. You should spend time with him when appropriate. You can put your mom into a facility for respite care. You can hire a caregiver through an agency. You need help and you should start finding it ASAP.

You mention so many doctor appointments. My mom used to have a lot too. Doctors would say "come back in 3 months". I'd say WHY?? Everything is stable, she does bloodwork every 3 months that would alert us to many changes that would be noteworthy and why should we come there to say "no changes". Start canceling/postponing appointments unless there's a reason more than it's what the doctor said at the last appointment.

You're burnt out. Get help ASAP. Part time or full time but do it now. You deserve it. The work load, mentally and physically, is waaaay too much. Talk to your sister and ask her to do more now while you guys figure this out. If your mom complains about going to sister's - too bad. Make up some excuse - it can be real or vague but it's going to help you reclaim a tiny bit of your life. Your life and your health are important.

Your car is out of commission and mom's car is there. If it were me, I'd be driving mom's car anytime I needed a car. Don't be stuck without a car when there's one there not being used.

Is your mom's paperwork in order? Do you or sister have POA? Does she have a will, living will, etc.? If not, get it done ASAP.

GI issues - my mom used to have diarrhea on a semi- regular basis. Luckily she was able to take care of it herself and I just had to listen to her descriptions.

Part 2 of the longest post I have EVER written
This one really speaks to me because it feels so familiar.
Anyhow...
Diarrhea - Did it start when something changed? New med? Change in diet? My mom was due to unfermented dairy. She could eat cheese and yogurt without issue. But ice cream?? Watch out cuz here come hours on the throne! Finally figured that one out! So could be food related. Does she wear depends? If not, remove regular underwear and make her wear these pullups. Could be really helpful.

PCPs can be pretty clueless about cognitive decline. And patients can be really good at covering up their symptoms. My mom's cognitive issues were not easy to recognize to anyone outside of my house. I started writing down all the odd things she was doing and things she could no longer do. So her PCP referred us to the doctor around here that everyone goes to for memory issues. I found that the dementia test, etc. don't really cover a lot of the things that my mom has issues with but that doesn't mean they're nothing.

Your mom's on dialysis - how does she feel about this? I'm ignorant on the topic but unless a person gets a transplant, this is something they have to do forever? Does she complain about going or is she the type of person that wants to do everything they can to extend their life even if the quality of life is abysmal?

I would really think about placing her outside of your home. She would probably need a nursing home but the people there would evaluate her to see if it's a good fit or not. Then her money and assets get spent down and when the well starts running dry, you apply for medicaid.

Lastly I agree with other's idea of a hospice eval. She has a LOT going on and if it were me, I would want to focus on my mom being comfortable much more than trying to do everything to improve when that may or may not be possible.

Hope to hear more from you. Best of luck.

GreyCe. You deserve to have your life back. Please see an elder care lawyer about Medicaid . Use your mothers money for the lawyer .

It can be very hard for fulltime caregivers to get time to reflect.
Life can be about just getting through a day.

If you can, create some mental space to do so.

Zoom out. What's the longer term view look like?

What are your aims?
What are you Mother's wishes?

Accomodation: Is Mom expected to live alone again?
If not, then where?

Dialysis: What is the aim?
Is it short term until her kidney function is ok? Or will this be ongoing for her life? (I am guessing she is not a transplant candidate).

What are Mom's values surrounding;
- life at all cost
- burdonsome or invasive treatments
- quality of life

At what point does the burden to the caregiver become too much?

The original question was "how do I live like this indefinately?"
I don't know.

But you can make changes.

I feel your pain. I cared for my mom in my home for many years. Wishing you peace as you continue on in your caregiving journey.

Vent all you want. I did. There are wonderful people on this forum who care.

Caregiving is never easy. Having support is crucial.