Demanding mom is entering home hospice with me (daughter) as the primary caregiver. I’m already burned out.

I’m so sorry you are in this position. I’ve recently been caring for my 10 years estranged mentally ill 75 year old mother. We’ve been consumed with getting her life more stable. I also have an uninvolved brother. I was told here to set boundaries. The one I did manage to set, is telling her I would not be able to do home hospice with her.

My sweet dad died 19 mos ago, and I went through a horrific mess trying to get him care while doctors ignored him. I told her the whole awful story, including how I put even him in a small board and care facility at the end. But for three weeks I was his only caregiver. And that I didn’t have it in me to take care of another dying person. So seems to understand that I’m NOT going to be her hospice home care if that time comes.

I would say if she has money, use her money for care. If getting her in a facility won’t work, hire more care using her funds. My dad was too ill to fight us on going to a home, but he was a mild mannered person and would not have fought anyway.
My mother is impossible, selfish, and extremely bad tempered. She’ll fight.

You hired an aide for when you're at work. You defied mom! Now you can hire a couple more aides for when you're not at work. Do it! Use her money, not one penny of yours.

You explain how you got into this mess and realize that it was a mistake. Believe me, you're only at the entry point and it will get worse. She could go on for a long time. My mother was in and out of hospice for 2.5 years. This could happen to you. Keeping that in mind, take care how you go forward. This doesn't look too promising for you.

As an aside, where did your mom find all these doting, caring people to adore and worship her? What is her magic?

And a further note: If your mom believes she did take care of all the people you mentioned but didn't, it sounds like dementia or some other self-fooling brain glitch. Be prepared.

Your post hit a nerve with me.

My MIL is in in Home Hospice with her 3 sr citizen kids dancing attendance. I cannot count the number of aides she has hired/fired and all the drama that ensues when she does this! She DEMANDS only her kids for her care.

She's been in active Hospice for almost 8 months now. She's not really worse, altho she has days when DH says she is definitely 'slipping' but the kids have gone from being told she had 2-3 weeks to 'she'll probably live well in to the New Year'.

And at SUCH a cost. Emotionally, the kids are all burned out. I cannot approach my DH to do ANYTHING for me, he is so on edge. I am not a voice in this, so I stand back and watch the crazy.

YS is driving the bus here. She makes a 'schedule' on the fly--each day is new and different. So, DH and I can't make any long term plans and we actually just cancelled a 24 hr getaway b/c he was needed at mom's.

I cannot state how very, very angry I am about this--and how my voice is not heard and no one cares how I feel or what I think.

She should have been placed in an ALF back when she had the fall that landed her in the hospital and then in rehab. Since then it has been beyond awful--Dh is constantly on edge and who does he take this out on? The one person who has his back, me.

If you can possibly do this--simply refuse to take her home. Arrange for some other type of care--whatever works. She'll be mad, plan on it, but you HAVE to set boundaries up front or you will be walking into a pit of fire you'll hate.

You recognize that you created this--and only you can make it 'better'. Can you be that tough with mom? My SIL tries, but in the end, MIL always, always, always gets her way. She cannot see the enormous cost of this to the whole family.

Ever read the book "IF you Give a mouse a Cookie?" It's a pretty cute book about something small becoming something huge and how it can happen so quickly.

PLEASE get the reins firmly in your hands before mom is discharged to 'your care'.

If we could go back in time, my DH and his 2 sibs would have put MIL in a NH so fast your head would spin. Now they're stuck, and all of the rest of the family too.

Good Luck, and be strong!

Listen to Mid because 8 months from now you will wish you did. Place mom in a facility or stop catering to her every whim.

My vote is for the facility.

But if you keep her in your house her hoard doesn't get to come too.

My dad went on hospice July 25.

By the first, my sister was planning to change hospices so that dad could go to a hospice home. He had begged and cried to my mom to not put him in one, but my mom, 87, was becoming a sleepless wreck who my sister had to medicate. All three of us sisters were maxing out.

Had he lived till now, he would be in a home.

If she has money, place her in a Assisted Living with Hospice. If this can't happen, then try to get as many hours u can out of Hosice and pay for some one to be there at night. Yes, as my daughter would say, u created this monster. Boundries should have been set long ago especially when u both worked.

Years ago my BIL called to say he had given my MIL $1000 for a new pump for her Well. I asked why, she has money. She had taken my FILs life insurance policy and put it in a CD. I asked my DH if his Mom had asked him for money. He said she mentioned needing a pump but he did not offer to pay for it and she didn't directly ask. She was passive-aggressive and this is how she asked for money. I guess BIL took the bait.

Thank you for all the replies, and I’m sorry for what you are all going through as well. The home hospice is going to be at her house, which has already been renovated, single floor, handicap accessible, the works. She did this for her older bf who never really needed it, but he helped her pay for it.

Yes, I have stood up to her, and I also informed her that she may ultimately have to stay at facility that is 5 minutes from my house. She did not respond to this, but I already have the application and a timeline in mind. I will not let this go on for months. I pray they she goes peacefully. But if she lingers, I will try 24 hour in home care, and ultimately the facility if need be. She can b***h about it, but she can’t force me to give up my life.

I was just reading the thread about how caregiving has changed you, and it was truly heartbreaking. My wake up call was when my smart, beautiful 19 year old daughter who is studying to become a physicians assistant had to do ambulance hours for her EMT and didn’t even put me as an emergency contact because I’m so unavailable with mom all the time. And like others here have said, mom doesn’t even ask how I am or what my struggles may be.
So yes, I am aware this can go on for months or more. But my time as primary caregiver is coming to a close. And I didn’t mean to make her out to be a horrible person. I believe she does truly love me and she has many good qualities. But the fear and loss of control over the last 2 years have brought out a selfish and demanding side (which was always there, but she kept it under control before she got sick).

Never too late to set boundaries. Sit down and decide what you are willing to do and what you will not do. And stick with it. If mom fires the person who is doing what you won't do, do not jump in. Let it go undone and let her suffer the consequences. If you keep saving her she will never have a reason to change. Not that I am saying she will change, she won't. But you don't have to either.

Ironic just how long people who are supposedly terminal can keep cranking forward.

I know you already know this, but it is worth repeating - home care doesn't work. Don't do it.

“She honestly believes it was her who did all that!”

I hope you’ve set the record straight, that it was you. I hope you corrected her, when she gave the wrong description of the past. She might not like to hear the truth, but you deserve to hear yourself say it to her. You deserve the truth.

Lies about the past can really make you boil with anger, simmering, until one day you can’t take those lies anymore.

You’ve done so much for her, for so many years. Of course you’re burnt out.

She’s dying. Turns out she has lots of money - use it. Pay whoever you need, so the load is taken off you. No reason not to use that money. You can lie (if she doesn’t like it), “It’s not me, it’s hospice. Hospice legally obliges you to hire this and that person.”

Your mom must have been a sweet person. Was she? Two men who adored and worshipped her - it’s rare. She must have been a good, sweet person.

OP, you are a good, sweet person. Do what you need to do, so you’re free. You can still help her during hospice, but do all you can, hire, so you can be as free as possible.

Time will not be given back to you.

Life isn’t just about being kind. It’s actually just as much (more?) about being kind to yourself. It’s not just about saving others. Save yourself. If not now, when? Months from now? One year from now?

Your mom is on hospice - it can last a long time.

We girls tend to be sweet and giving. I want to kick your brother who does nothing. He could have halved your load. I hope he gets nothing in inheritance. People like him just wait around for inheritance.

OP, we girls tend to be sweet and giving. Brothers, fathers, sons go out and have fun, adventures, exciting jobs, living life! What are many of us girls left with? The boring, stressful jobs (helping is a job, whether you’re paid or not). There are exceptions: but often it’s like that: men go out and have fun. We’re forced into a position of helping. Someone has to help, organize.

Let me guess, your brother didn’t lift a finger to organize hospice.

OP,
please become happier, more successful, healthier, carefree, free, fulfilled than your brother.

"I was very angry when I wrote all that yesterday. My mom was good to us growing up, a smart and good person, also funny and attractive, hence always having a doting man by her side. I think I’m using anger to hide my feelings of sorrow that she is dying."

I have no doubt your mom was all those things but I also have no doubt based on your original post that mom was self centered, self absorbed and selfish.

The fact that she doesn't see how burnt out you are and is still making unreasonable and ridiculous demands shows how clueless she is about the feelings and well being of others.

No need to back track on any of it because mom is dying. Her dying doesn't change who she is and that is perfectly OK.

I think you are also feeling relieved that she is dying too because that means your overwhelming care giving burden will finally be over. An scared because she seems to have rallied and that may mean she could live a lot longer than anticipated. All of which is perfectly OK too.

Lily, if mom has "emergencies" from here on in, call the Hospice company and ask what to do.

It seems pretty clear to me that mom belongs somewhere with 24/7 care (the fact that AL would not accept her speaks to that).


Having a dying parent is hard. But unless they are "actively" dying, you shouldn't be upending your, your husband's and your kids' lives to pander to her unreasonable requests.

I'm sorry if this sounds harsh. And I'm so sorry you're going through this.

I have read here that when the elderly are in a private home, and senior children are taking care of everything, the elderly think it means that they themselves are doing it. So I absolutely believe your mom believes it was she who did all of it. It’s very common and a big part of the reason why people have to back off a lot— so the parent can understand that they are actually not capable of doing things.

Mom has a collapsed lung, lung infiltrates, and 2 antibiotic resistant infections that the doctors will not continue prescribing antibiotics for. She is on 4L of O2 24/7 and can barely breathe. So she is getting morphine and Ativan. She went from about 165-175 to 96lbs. in the last year. I believe this really is the end of the road.

Today she comes home. She wanted me to be at the rehab while simultaneously being here at her house waiting for an O2 delivery. She insinuated she would not get in the ambulance without me there. So I said, fine, stay in rehab. Then she pulled out all the stops and basically said she was dying. I didn’t budge, but I called the nursing staff to check on her. Guess what? Now she THANKING me for all the work we did to get her house ready. She’s actually praising us for setting everything up. I literally spent one weekend standing up to her and she’s thanking me for almost the first time. I don’t expect it to last, but there is definitely a lesson here.

Hey you are not alone . It's my dad I take care of but my mother acts the same way saying she did this and that but really it was me. Hang in there. Wish I had a solution all I do is navigate the waters and avoid the iceburgs. Goodluck

Lily, how are things going this week?

Good Morning,

I'll give you all a laugh this morning. I once worked at a Museum and a couple, man and wife walked in, the wife was limping and using a cane. So, I rushed into the coat room and took out a wheelchair and the husband sat in it and the wife pushed him around.

I still laugh about this story. The secrets to a happy marriage...

To BarbBrooklyn, Thank you for asking. This forum has been a blessing. Last week was probably the worst week of my life (which is saying a lot because my dad died a horrible death from a degenerative brain disease).

First mom was in bad shape when she came home, had an incident the first night where she could not breathe, was gasping for air, clutching the bed rails an crying out in agony. Her O2 sat was in the low 80s and didn’t start to recover for 45 min. I was calling hospice, but she was not IN hospice. It took TWO DAYS for hospice to come and do the intake, even though they knew her discharge date for weeks. So I was absolutely hung out to dry, trying to get meds, trying to call her doctors, and totally going ballistic on hospice people over the phone. It was like the seventh circle of hell.

Since then she had her intake, has had RN, LPN and CNA visits and I hired a HHA to go back to work, even though I asked work for a week off. That was to give myself a break, although I spent every “break” making phone calls, setting appointments, picking up meds etc. The only time I saw my husband was at “the changing of the guard” and all we did was fight.

Now mom is feeling MUCH better after having someone attend to her 1:1 24/7. In the meantime I ended up in the ER with anemia and Epstein-Barr virus, and my 25 y/o niece, who spent 24 hours with mom, got a kidney infection. That was the last straw, and I hired an overnight caregiver, who none of us has even met yet, but it has to happen.

There has been lots of drama and demands from mom, as expected. But we told her without help she will have to return to the nursing home. She has no choice. It’s hard to watch mom in her dying days. But it’s absolutely incredible how we managed her direct care, meds, food, bathing, cleaning, laundry, bills and home, while our own home and family went completely into shambles.

Even with this new set up (day and night person, and me working my job only part time), it is still going to cost $9000/ month and I still need to be there 6 hours every weekday, and all day Saturday, Saturday night and most of Sunday. I am enlisting more family help brother, sister in law, son, and my dear niece who is staying Sunday night and Monday.

Everyone here who said I don’t know what I’m getting into was absolutely right. My friend’s mom, with almost the same health conditions as my mom, went into home hospice, started sleeping all day, stopped eating and died in under 2 weeks. As I said, mom is better, sitting up eating almost 3 meals per day and seems pretty happy and oblivious to the fact that the rest of our lives are on fire.

“She is being released into home hospice Tuesday with me as her primary caregiver”!!! Why did you agree to this. Phone to say that you have had an (even imaginary) illness attack and cannot take her. Other arrangement will need to be made.

Lily, (((((hugs)))).

Please hold yourself to that 30 days.

We have another poster, MidKid, whose MIL was "actively dying" starting 6 months ago. It's destroyed her family and marriage

Learn from the mistakes that others have made.

Here is Mid's current thread:

https://www.agingcare.com/discussions/dh-finally-has-to-step-up-any-advice-480766.htm?orderby=recent

An update: When mom came home I believed she was actively dying. She had lost 70+ pounds, had already been on morphine and benzodiazepines for more than a month, was sleeping all day and not eating. She would only get up to use the commode, which is pressed up next to the hospital bed. Every use is an ordeal, with her O2 dropping into the low 80s, her gasping for breath on 7-8L of O2, and taking 45 minutes to recover. (Recover being getting back to her baseline of 92-94%).

Since she has now received 1:1 24/7 care for 2 weeks, she is eating, talking, staying awake most of the day and taking visitors. (Bathroom situation still the same). This is actually just was hospice promised, a longer life with better quality. But now she is back to making demands, complaining, wanting control of everything, having the HHA give moms bills directly to her and she puts them in a bag on the wall side of her bed where I can’t reach them, and making things more difficult for me than they need to be. Her caregivers think she is sweet and witty and funny and they love her.

I was so proud of myself for standing up to mom and hiring day and night caregivers. But the reality is I go to work, go straight to her house and stay until 8pm when the night aid comes, rinse and repeat. I also have all day Saturday, Saturday night and Sunday morning. I have family for Sunday day and night, but in only 2 weeks they have already canceled once. So idk if they are reliable (they WERE genuinely sick).

I’m down from 168 hours to 60 hour a week myself, but it amounts to almost every waking hour outside of work. I don’t have any meals with my family, miss yoga every week, and can’t even go grocery shopping. I did ask my brother to come for my lousy one hour yoga class, but last week I was in the ER, and this week he didn’t show and then said he thought I was “all set” because I had hired aids 😡. The frosting on top? Mom told me she felt “cheated” by how little time I spent with her last weekend.

Speaking of the ER, while I was there, I inquired about the nursing home I had the application for, because they are connected to that hospital. The nurses said the patients they get from there seem uncared for, which burst that bubble.

If all that isn’t enough, we love out overnight aid, she works 60 hours a week for us and has a baby at home. Her b**ch of a boss at the agency essentially forced her to take a day job that she doesn’t want, BY THREATENING TO FIRE HER, if she doesn’t ‘step up’. This is both cruel and I would think, illegal. I dont want to lose this lovely person.

Thank you for listening to me vent. I already know what the answer to this is, and I’m working in it. I’m SO, SO tired, and I’m going for my annual weekend away this weekend come hell or high water.

Who is paying for the day and night aides? Sounds like it's time to talk to mom about moving her into a facility.

It's a hard conversation though because how do you start it? Do you say well mom I thought you would be dead by now and since you aren't it's time for you to go into a facility?

It seems like all the extra attention and waiting on her hand and foot is giving her a new lease on life (similar to MID's MIL who was also on deaths door).

If she is paying for all the aides and her money is running out it would be an easier conversation because you could use the financials and logistics of that to get her placed.

You don't have to be at her beck and call either. Don't feel guilty when she complains you are not there ALL the time and are taking some time for yourself. our overnight aide might not be around soon what with her having to work during the day also so you may want to start preparing for that.

As for her mail and bills I would tell the HHA that all bills go to you not mom and explain this to mom as well.

I had an amazing development yesterday. I had expressed to mom that me coming straight from work (mid afternoon) until 8:00pm was untenable because my husband and son are away and there’s no one to care for my animals. Then I’m thinking, wait a minute, forget about the animals, what if “I“ simply wanted to have dinner with my family? It’s impossible. Also, I go on a yearly getaway, which is this weekend. It’s all paid for, and I really want to go. (We have cancelled our modest vacations for the last 2 years after not going anywhere due to Covid the 2 previous years).

Next thing I know Mom gets on the phone with her church friends and gets TWO caregivers lined up for yesterday, so I didn’t have to go at all, and I had time to shop & pack. It’s the first truly selfless things I remember her doing in the last 2 years (regarding me, anyway).

Mom is paying for the HHAs. I have a daughter in college and a mortgage and would be broke if paid for even a few months of this. I’m inquiring into facilities that are close by, but they’re astronomically expensive, and I hear the care is poor. I would have to spend almost as much time at the facility as I do at her house to see that she get proper care, while still maintaining her house.

The better solution is that I get a schedule together with more of these volunteers and family that won’t do big chunks of time but might come for 2-3 hours. If I could have a little time to myself after work, and could go home even 1-2 hours earlier a day it would make a huge difference.

The same day I posted the “amazing development” I decided to take the window air conditioner out of my house and place it in moms house. It’s been 99-100 degrees in our area and her 2 very small units don’t keep up at all. I live on a mountain in the woods where it’s much cooler (high 80s lol).

She seemed pleased at first then later accused me of planning things behind her back and communicating with her HHA and not her. This isn’t true as I texted her first, but she often doesn’t check her phone. She also has the HHAs and my niece take pictures of all the rooms in the house when I’m not around. She’s says she’s not checking up on how I’m taking care of things, she just doesn’t remember to ask me to do it when I’m there.

I went way out of my way, enlisted help and gave up time preparing for my trip to do this for her. I’m not proud, but I ended up yelling, then she starts crying and sobbing uncontrollably, then she’s screaming she can’t breathe, and I’m the mean, bad daughter again.

I also got in a big fight with my brother, who wants the money that mom wants to give him. But he doesn’t want to visit her. I guess he wants me to mail him a bank check. He also wants me to sign over moms car to him, and then change the lock on the garage door so she doesn’t find out. I would never do that! I’m also pissed that about 4 people have asked me for her car, and she’s not even actively dying anymore.

I’ve suffered clinical depression in the past, but have been much better recently. Yesterday I actually wished I was dead, I’m just so sick of it all!

Your mother is a real piece of work, Lily.

Your mother has money. Let her hire full time help.

It sounds like you are trying to win her love by doing nice things for her.

Real love doesn't work that way.

Let me tell you something plainly. Kissing your mother's a$$ and allowing her to treat you like garbage is not going to change her prognosis.

So stop doing that. She isn't going to change herself or her behavior at this point in her life. You are going to have to change your behavior.

Don't tolerate anymore of her pushy, entitled, and rude behavior.
Bring in more homecare to take care of her. Tell hospice today that you thought it over and made a mistake agreeing to be her primary caregiver. Tell them any reason you like from you taking on too much to the actual truth that she's an abusive narcissist and you can't be an effective caregiver to her.

Then let them make other arrangements. You can visit her as often a you like. Every day if you want to. You can be an advocate for her too and manage her care. Don't be her caregiver though because that's a bad idea.

Since Mom is paying for aids she has money. So place her paying privately. Her house will be an exempt asset. When she spends down you will apply for Medicaid if the house has not sold yet. When the house sells, Medicaid stops till u spend it down.

Or allow Mom to continue with her aides but the easiest way is to go into a Medicaid facility paying privately (my Mom 2 months) then apply for Medicaid.

You take your trip. Mom is cared for. If she needs to hire on more hours, so be it.

And yes, no money should be gifted if Mom may need Medicaid within the next 5 yrs. Also, her car is considered an asset. Can be sold at Market rate and used for her care but cannot be turned over to anyone. If she is no longer driving, I would sell it.

You are already burned out.
You need to take care of yourself, this is real and dangerous for any caregiver.
And please no guilt!
You are not guilty of anything, you did not create, contribute to this disease.

Quick update. I went on my trip and had a great time. I did get a call from the nurse but it was minimal. TWO of the women I was with are also caregivers and both of them got calls from home as well :( Another friend didn’t go because MIL was dying. After being on this forum for a couple months now I figured she was going to miss the trip for nothing, but MIL DID die that weekend.

It’s been 3 weeks since I posted this my situation would be doable with a couple hours a day of more help. It’s not. My daytime aid only works from 9am-3:30 pm doesn’t want any more hours. No one wants to work from 3:30-7:30, when my nighttime aid comes. Mom “loves” the daytime
aid and doesn’t want to let her go. She’s also the friend of a friend so it makes it hard for me too.

In the meantime I went to a licensed CPA who told me to keep doing what I’m doing, and keep paying cash to “friends” while raising her homeowner’s coverage. Her very well respected pulmonologist said the same thing. (He also FINALLY told her flat out that she’s dying. No one has really done that up until now).

I then went to a lawyer who told me the complete opposite and suggested we get a PCA agreement so that I can get paid for my time and get some small part of her assets before they’re gone.

All this is a long winded way of saying I did a lot of research, made a lot of calls, but still haven’t gotten more coverage. So it’s still my husband and I over 35 hours a week. Mom has her moments of gratitude and concern, but more often she is demanding and complaining.

I need to get rid of the part time day person to get a full time one. Moms going to be furious, and I work every day with the friend who recommended her. Yes, you can tell me I was an idiot to hire her. But at the time I was providing full time 24/7 care, and getting a 6.5 hour a day Aid (first aid ever) was a HUGE sigh of relief.