Demanding mom is entering home hospice with me (daughter) as the primary caregiver. I’m already burned out.
Mom was an only child (not spoiled materially because they were poor, but got a lot of attention). She was married to my father for 43 years and he adored her, doted on her and always did her bidding. He died in his 60s of a horrible disease in a nursing home. Mom ended up with an older “boyfriend” who absolutely worshipped her for 15 years. He died right before Covid. She has chronic pulmonary disease and my husband and I stepped in to help, doing essentially everything for her even though we live in another town. After several bouts of pneumonia she had gotten worse, and we have catered to her every whim. We wanted to make her life nice because we felt her time was short. Ultimately, we allowed ourselves to be put into the position of fulfilling her every need. Going way out of our way to buy things for her, bring her places, etc., letting her boss us around doing chores and even lending her money because she led us to believe she was just getting by financially. Now that she’s very ill I found out she has money, because she added me to her accounts. But she absolutely has refused to hire help. I have a brother who is local who will do nothing. She is being released into home hospice Tuesday with me as her primary caregiver. I did hire an aid for when I’m at work - didn’t give Mom a choice (I also have young adult kids still at home). Now she is literally sitting up in her rehab bed, as energetic as I’ve seen her in months, giving me orders, wanting us to buy things before she gets home, move big furniture, and make space without getting rid of any of her hoard of stuff. My husband was literally putting up drapes in her house while mom was giving me my marching orders. I KNOW we created this situation ourselves by not setting boundaries. I’ve read a lot on this forum and received counseling myself. Even when I was much younger every counselor I saw either said cut ties or distance myself from my very dysfunctional family. But now she is actually dying I want to be there, but I’m burned out, resentful and feel guilty that I feel this way when I want her death to be as peaceful as possible.
PS. She is nice, humble and witty with everyone outside the family. She tells everyone that she spent her whole life caring for people, my dad, her bf and my mom, and now it’s her turn. In fact, my dad was in a nursing home, her bf never really needed care until the end when he was in the hospital. But “I” cared for my dementia riddled grandmother when I had a 2 y/o, including everything I’m doing for mom now and ultimately emptying bedpans. I did it because mom was with my sick father and brother was absent. She honestly believes it was her who did all that!
Really I’m just venting. Thank you to anyone who read all of this!
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!
This comment really resonates with me because I see that so many of the elders on this forum don’t see or don’t care about the epic collateral damage they are inflicting on the wider family. I’m not even 60 yet and my hub and I are going to get long term care insurance and write our advance directives, create trusts and do whatever we have to do NOW so our kids don’t go through this.
I did apply for assisted living while Mom was in rehab, but they will not take her on hospice. Then she took a bad turn for the worse, has a collapsed lung and 2 antibiotic resistant infections that the doctors do not want to throw more antibiotics at. So she is getting morphine and Ativan. I believe this really is the end of the road. She went from about 165 to 96lbs. in the last year. She has beat the odds before, but it really isn’t looking hopeful for her at all now.
My vote is for the facility.
But if you keep her in your house her hoard doesn't get to come too.
We have gone almost nowhere (2 VERY short 36 hr trips to see family) this Spring/Summer and will go nowhere the rest of the year.
All because ONE selfish woman wants what she wants, come hell or high water.
And these kids were so carefully groomed to never ever cross mama.
I used to think I wasn't capable of hating anyone. I'm afraid I am finding out that I am capable of it--and I'm not proud.
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.
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.
Now because she has 24/7 care she is doing better. The irony is that if they had sent her home to live alone (again) she would have repeated all the same patterns, allowed full blown pneumonia to set in again, and possibly died.
Now she’s in this limbo, with low level antibiotic resistant infections, bed bound, but eating and drinking and taking meds, receiving bed baths, etc. This could go in for months…years?
I dropped the bomb and told her she has to have a 24 hour caregiver. Of course she started crying and trying to guilt me. She’s going to die sad and lonely and it’s my fault. Even though she has 6 relatives who visit weekly (3 who stay and care for her). Plus friends, church people, a minister, and all the hospice nurses, aides etc. She’s SO fortunate compared to others I know. In reality I think the relatives who are providing care are going to start dropping out of we don’t get 24 hour care. But WITH care they will continue to visit because it won’t be so much of a burden.
Tonight is my night shift (hopefully 2nd to the last one because the 24 hour schedule is to start in 2 weeks). I never imagined I could be this drained in less than 2 months. Idk how some of you do this for months and years. You have my deepest respect.
I suggest, since there are others to take up the slack, you drop out first. It seems like a not-nice thing to do, but you've done your best and you're miserable. Once all these helpers (who are actually enablers) drop out, you don't want to be the last one standing. There is no merit or joy in that.
Since you already told mom she'd have to get a 24/7 caregiver, how about hiring the person and informing mom shortly before your regular shift that Susie Q. Sweetness will be arriving instead of you? Then stay away.
Mom is being selfish and inconsiderate and yup, she's dying. Next time she guilts you with the dying blather, tell her that we're all alone at the moment of death even if we're in a whole room full of people. Truth.
Caregiver is getting paid.
Mom gets what she gets.
Back off and be kind to yourself!
The difference is toddlers are mostly happy and healthy (despite the occasional tantrum). Dying elders seem rarely happy, are never healthy, and the situation only gets worse. They WANT us to restore them to health and happiness but it's impossible.
I know you already know this, but it is worth repeating - home care doesn't work. Don't do it.
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.
I’m so sorry that you are going through all of this. I know firsthand how hard it is.
Believe me when I say that you can’t be everything for everyone else, not even for your mother who is dying.
Value yourself enough to let go of feeling of like you have to be fully responsible for your mom. It took me far too long to learn this lesson.
I had so many conflicting feelings when I was my mother’s caregiver. I made foolish decisions that caused myself and others so much grief.
My mom ended up needing more care when her Parkinson’s disease progressed.
I quit my job to become mom’s full time caregiver. I regret that I didn’t continue working and not placing my mother in a facility.
I was so blinded that I couldn’t even see that I was adding frustration to my mother’s life. Deep down she really didn’t want to be a burden on me.
Mom did end up going into a lovely end of life hospice care home. She received excellent care from her nursing staff and aides.
A social worker was available for her and the family. Clergy is provided by hospice as well.
The family was relieved that she was cared for 24/7 and my brothers and I were able to return to being her children instead of burned out caregivers.
You’re not doing yourself or anyone else any favors by caring for your mom while being burned out.
Your mom and others can see your exhaustion and it becomes uncomfortable for everyone.
I don’t believe anyone is capable of being their best when they are burning out, no matter how much they want to be their best.
My mom felt as trapped as I did. How could she come to terms of accepting going to a facility if I insisted on caring for her?
I taught my mother to become dependent upon me by telling her that I would always be there for her.
I adored my father and his last words to me were, “Take good care of your mother.”
I went overboard trying to care for mom. So much so, that she didn’t want to hurt my feelings because she knew that I was trying my best to care for her.
My mother was the rock of our family. She was never a ‘needy’ person. She had been an independent woman before she became ill.
I have done a lot of reflecting since my mother died. I can clearly see my mistakes now.
I am able to see how my mother truly felt as well, not what I thought she felt.
She told me shortly before she died in hospice that she never wanted me to give up my entire life for her and that she knew it was too big of a sacrifice for me to make.
We both cried. Our relationship had changed from the stress of me being her caregiver, an unnatural codependency occurred. It took me letting go for healing to take place.
My children once said to me, “Mom, when you grow old, we will care for you the way you cared for grandma.” I told them, ‘Like hell you will. I loved my mother and I know that you love me but I don’t ever want you to give up your life for me. Live your best life. That is what I want for you.’ My children looked at me and thanked me for wanting them to be free to live their own lives and they understood how I felt.
I hope that you will consider letting go of this responsibility of full time care. Being an advocate for your parent is a beautiful thing. Your mom will come to terms with the decision to allow others to care for her.
Take care.
I feel that my mom WANTS me to give up my whole life to take care of her. Idk if it's partially the dementia setting in, but she has no concern for what I have given up. She's not even aware of it.
And to add insult to injury she tells everyone that she cared for her mother. She sat by her mother's bedside while she was dying in inpatient hospice. She never spent a single night at my grandmother's house, never emptied a commode, changed a diaper, anything.
I was the one who cared for my grandmother in her home when she had dementia. And I had a toddler at the time. It was totally inappropriate, but my mom wouldn't make a decision to place her. I ended up getting her placed with the help of my husband.
So in addition to just being tired, I have a big, giant dose of resentment. And the fact that mom constantly talks about helping my brother financially while he does nothing is a kick in the head.
Mom WAS in a facility before she "came home to die". It wasn't much easier. I was getting constant calls, both from the facility and her. And I still have the financial piece and maintenance of the house.
If she were placed, getting rid of the house would not be a simple matter. It has never been more than partially cleaned out in almost 58 years. The thought of that alone is another nightmare.