I feel like my life has been stolen from me. I didn't have a choice but to quit working and move my mom in with me and my family.
Last fall, my son moved an hour away to college and now I don't get to see him very often, even though he and I are very close. It's not fair that I can't spend time with MY SON!
My husband is carrying the burden of supporting the family because there's no way I can work right now. Even though he makes good money, the economy has tanked and now we're struggling . I know he's tired of our home being a nursing home. I know he's tired of living his life around his MIL!
I'm at home all day doing literally everything for her, cleaning up after her chronic diarrhea and nausea- never ending laundry! She has mild dementia which makes everything worse. She is also on dialysis, which means driving 20 min one way, there and back, twice a day, 3x a week. Throw in the wait time when I pick her up and that's at least 6 hours a week of sitting in a car. Now add the endless dr appt, eye dr appt, hospitalizations, rehabs etc. From April 2022 to Oct 2023, she has had approx 11 hospitalizations and 5 rehab stays. That requires me to be right there with her- if I'm not there at least every other day AND USUALLY MORE, she will have something go wrong. Idk if she does it on purpose or if I'm just quite literally cursed. Did I mention that rehab is over and hour away and usually the hospital stays are over and hour away. Plenty of driving for me in mom's granny car...
Last fall, my car's timing chain broke and it would be thousands to fix and everyone tells me I need to take it to the Cadillac dealer... Can't afford that when I'm not working so now I don't have a car at all. I'm driving mom's therefore I refuse to use it except when needed for her.
I don't get to leave, I don't get to go see my son, I can't go out with my husband, I can't do anything.
I am not just burnt out, I am absolutely crispy at this point. I feel so much resentment towards her which only makes me feel guilty. I'm in my 40s and feel like I'm older than she is. I'm missing living MY life!
My sister comes most Fridays and drives her to dialysis and picks her up. I, of course, still get mom ready, give her meds, feed her etc. It's only been 2 weekends that my sister has taken my mom to her house to give me a chance to breathe and that was only after I had a meltdown. Now my sister will text on a Sat, late morning, and say "Should I come get her?" Meanwhile, my mom is glaring at me not wanting to go. So, whose shoulders does it fall on? Mine. Therefore, no, forget it, she can sit here. I don't need more guilt piled on me.
I'm absolutely at the end of my rope. I'm having anxiety, crying sessions, and even at the point I'm not sure I want to continue life as it is. No, I'm not suicidal, just overwhelmingly tired of it.
Husband doesn't understand and gets mad. Can't fault him for that, his life is screwed up now, too. He's been a saint, to be fair.
My sister will be sure to tell everyone she takes mom whenever I want her to, but she's only just now started and has only done it 2x. She's always been the benevolent favorite, although I'm always the one doing for everyone. I love her dearly, but now I'm becoming resentful of her. She hurt her foot this spring and I've had to mow her yard, take her to the dr, cook for her and it's only been the past month that she's recovered enough to take care of everything herself.
My life absolutely sucks. I miss seeing my only child. I miss being a woman and dressing nice. I miss laughing and freedom.
I love my mom and want the best for her but I am tired.
She doesn't have Medicaid so there's no help offered by anyone in my state that I can find.
I guess I'm just venting before I take her to the hospital, same as I did Monday last week for the same reason.
I'm so tired.
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)))
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?
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.
I was a caregiver in my late 20’s and I’m in my early 50s now and I’m STILL burned out.
This is what you chose.
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.
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?
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.
Yes, you did.
Undo that terrible choice.
At first I expect you will disagree & stay stuck at you were 'forced to'.
Ask yourself why?
To meet expectations? To appease your husband? Because you care?
Keep asking why?
Many people would choose no.
From those without bread on the table, no other income that had to stay in paid employment or starve. To top professionals, jobs requiring a lot of travel or people really passionate about their jobs. My Doctor said no.
Anyway, no judgement.
You choose yes
But you ARE free to stop. To change your mind.
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.
If said elder cannot do for themselves then yes they should be placed into a facility not an adult child's home where their needs create stress and place a burden on often adult children who are elderly themselves.
Not to mention the financial burden and stress that care giving creates. Which is compounded when said elder is living in your home and you have to take care of ALL their needs 24/7. At least in a facility people work in shifts and go home at the end of the day.
For pete's sakes this womans mother has dementia and she is on dialysis. When does it end? Will she still be on dialysis when she can't feed herself or is unable to swallow properly or walk?
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.
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!
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.
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 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.
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.
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?
My suggestions: I think I'd start by leveling with mom's PCP (if she has one in today's fragmented healthcare system) about what is really going on and how much care OP is now compelled to provide--and is no longer able to deliver. Contact the local area agency on aging. Utilize the hospital social worker the next time mom must be hospitalized (11X in 18 months? That seems like too many!) If there's such a service available in her area, a geriatric case manager could at least provide basic information (there will be a fee, but a consultation may be worth it).
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.
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.
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?
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?
Does she need the MEDICAL criteria for NH Care?