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Mom wants to “die in her home”. I’m trying to help her but I am so burned out. I need to get my own life after 6 yrs. of caring. I don’t feel well anymore and am worried I might not have any quality of life left. The only solutions I can think of are to get a house of my own, or to have mom go to a sister or brother. Mom would not want to do that,
as she loves her home.



please help.

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Quarkles, you need to stand up for yourself.

Tell mom that you will be moving out May 1. What arrangements would she like you to make? She can hire caregivers or she can go to a nice facility.

You living in is no longer on offer.
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Quarkles , Your own need to better care for yourself and mom’s worsening condition warrants that your mother be placed in AL or MC. Your mother can not make rational decisions anymore. She does not realize how difficult it is for you to take care of her.
Tell her and your siblings you can’t care for her anymore , that your health is suffering . Hopefully the siblings will help you place her.
Otherwise You can call your local dept of aging to assist you with placing Mom in a facility .
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My husband was recently hospitalized with Covid. He was then admitted to an assisted living facility for a 30 day respite period to regain his strength through PT. I also had Covid and need to recover my health and sanity from being his full time caregiver for the last 5 years. He has early mid-stage Alzheimers.

His son has POA for health care. I've told the son that I'd like my husband / his father to remain at the facility. He is so much more pleasant than the way he behaves at home. Plus he's attending many of the activities which is great. I enjoy seeing him again. At home he watches TV endlessly and is frequently very upset because he can't work his phone and computer. When he's home I spend every day anxious and angry.

Assuming his son agrees to a permanent placement at the facility, what's the best way to tell my husband that he won't be coming home? I was hoping that he might forget that he's supposed to only be there 30 days. However, he's made comments about the fact that he'll be home in 3 weeks. He forgets almost everything else so I wish he would forget that fact as well.
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Way2tired Apr 2023
Piano mom , You and his son tell him he is staying there where he is safe . That it will be healthier for both of you and that you will visit .
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My mom had dementia and refused to look at assisted living facilities ....I didn't even realize that it was true dementia, but thought that she was just being stubborn . ....then she fell once became bedridden and incontinent....
It was a nightmare for me....snfs, assisted living with an enhanced licence, took her home again on.....developed c difficile....I couldn't keep up with diaper changing....called 911....Ii am still reeling from stress ....executor of her will and stressed out....need some time to relax myself....mom died in hospice with me as the primary caregiver.....a nightmare
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I suppose I should have mentioned in my reply..
If mom has dementia all bets are off and you can and probably should place her in Memory Care.
This is for your health and safety as much if not more than hers.
When I read your profile before replying I did not see mention of dementia I thought. Another stubborn elder or a narcistic one that wants everything to revolve around her and her wants (not necessarily needs by the way)
So if mom has dementia begin looking for Memory Care.
Yes she will kick and scream. She will probably tell you she hates you, you are going to kill her, you are throwing her away, and a half dozen other things to "guilt" you into keeping her at home.
Take care of yourself.
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My mom didn't want to leave her home either. After being in assisted living for awhile, I can't remember how long, she forgot her house and thought where she was living was her house. Her new home just had a lot of other people there.
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Your mother has Dementia. You described it perfect in your profile. Self-centered, no empathy. No realization of what you do for her. Its no longer what she wants, its what she needs. I so hope you have POA. Read and see if its immediate, if so, place her. If u need a doctor or two to claim her incompetent than take her to a Neurologist to declare her incompetent anf her PCP should follow that recommendation.

You don't feel good because you are stressed out. You have no life of your own, depressed? You too are a senior. We only have so much energy we can expend. I am 73 and can't imagine caring for anyone at this point.

You need to call your siblings and tell them that Moms care has gone beyond what you can do. That ur health is now being effected. If they are not willing to care for her, then she needs to be placed.
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I want to win the lottery myself, or rail against the moon about some issues I don't want to deal with but have no other choice about. That's life on life's terms Quarkles. Not the fantasy life of a selfish elder who feels HER wants and desires should override YOURS in spite of your advancing age and health concerns. Why are her wishes more important than yours? And is her life and quality of life more important than yours, after all this care you've already given? If you say yes, ask yourself why?

It boggles my mind when parents act like this. It boggles my mind when we daughters buy into the hype and FOG, too.

We should all be so lucky to afford the luxury lifestyle AL affords us in old age. Instead of acting like it's a crime or a sin to make such arrangements. God values EACH life He gave us equally. It's time you do too.
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Madisoncuckoo7 Apr 2023
Thank you!!! Love this
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I read your profile and previous posts.

 "At her request, I moved from another state to help her, so I have no social contacts of my own, and only have visits from siblings twice per year, as both brother and sister live a distance away"

If your mother insists on staying in her own home, tell her it's time for one of her other beloved children to uproot themselves to live with her.

You've done your time.
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At this rate YOU may very well die in her home!
If it is possible what are your thoughts on BOTH of you moving to Assisted Living?
You would get the help you need to help care for her.
You would be in a community where you can meet people and do things with others.
If mom refuses that then you have what I see as 2 options:
Mom hires caregivers that will come in and help her. You can help during the times when caregivers are not there. I would think caregivers 3 days a week for 6 to 7 hours a day would give you a well needed break.

You move out, Mom has caregivers that come in. You do not help out.

You do not mention that mom has dementia so you sit her down and tell her that you can not continue doing what you are doing. Things need to change. Tell her that caring for her is killing you.
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Mom wants to “die in her home”.

I would have an honest discussion about this.

A KIND chat...

Yes she will die. One day. The timing is set by powers beyond us.

The location can sometimes be chosen by us, but mostly is not within our control either.

Is she a person with faith? Would she like to discuss these end of life matters questions with her Faith Leader?

Or a BLUNT chat..

Yes you CAN die at home.

You can die in your NEW home. Your new room in AL.

Or even dark humour..?
Well hurry up! You've got 3 weeks before you move.

That statement to "to die in her home". What does she REALLY mean?
- To die where she is comfortable?
- Where family is?
- Where she feels loved?
- To not be alone?

Many people fearful of 'the end' can be soothed by talking about what they really value.

At the end of the day, most people really won't care about the ROOM they are in, the paintings, the furnishings. They care about having pain controlled & someone they love to hold their hand. Or spmeone to tell them they have been a 'Good Mom'.
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CaringinVA Apr 2023
"At the end of the day, most people really won't care about the ROOM they are in, the paintings, the furnishings. They care about having pain controlled & someone they love to hold their hand." This is so true, Beatty.
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On dying at home: This is what my dad wanted to do, and he did. He had no idea how hard it was for me. And I had caregivers to help. Also a housekeeper once a week. Finally it was over.

So let's walk into his home, a beautiful South Florida villa. He'd been sick for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.

His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either.

The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all that we needed between trash pickups). Always laundry to be done.

Dad crying that he wanted to die. Hospice doctors, nurses, a minister and PTs in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.

This is what dying at home looks like. I'm not doing that to my family.
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Fawnby Apr 2023
I'd like to add that Dad thought he was in a hospital for the last couple months of his life. All that work to help him die at home, and he didn't even know where he was.
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Give siblings a 2 week notice, then move out. You've more than done your share. Your Mom's desires to "die at home" are irrelevant at this point, she needs to be placed.
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So you entered into one on one, live in, 24/7 caregiving at 65?

I think you will have to sit down and tell your mother that you are sorry but you cannot continue on, don't you? It is truly not relevant at this time whether this is what she wants or not; this is what is necessary.

And if she does not agree, then yes, it is time to get a place of your own and call APS to render assistance to senior in need.
I am sorry you didn't consider your own human limitations in this equation, and I hope the repercussions on your health are not permanent.

I wish you the very best. I am afraid that honesty is the only answer here. She will, of course grieve this final loss of her home. It is worth grieving over. Not everything can be made perfect; we are only human.
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Quarkles,

You have been doing this for a long time by yourself. I feel your pain. I really do.

I also cared for my mom for many years. My mom died at age 95. We chose to place my mother in an ‘end of life’ hospice care home. A huge weight was lifted off of our shoulders, knowing that she would be cared for around the clock.

I loved my mother very much, just as you love your mom but full time caregiving definitely takes a huge toll on us.

If you are concerned about your health, please stop caring for her by yourself and find a suitable facility for her to live out the remainder of her life.

You won’t be abandoning your mother. You can still visit her and oversee her care if she is placed in a facility.

Wishing you peace as you continue on this difficult journey.
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40% of caregivers caring for someone with dementia will die before the one they're caring for. PLEASE don't be one in that true statistic!
You've done your very best and now it's time to place your mom in a memory care facility where she will receive the 24/7 care she requires and you can get your life back and get back to just being her child and advocate.
Your mom has had her life, now it's time for you to get yours back.
No one ever(if asked)wants to leave their home, but there comes a time when there is no other option. Your mom would not want you killing yourself(if she was in her right mind)over her care and because of her. No more than you would want your child to kill themselves over your care.
So again, PLEASE start taking care of yourself and get mom placed in the appropriate facility.
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My so’s grandma died at 103. If mil lives that long, he will be 84. If fil does, he will be 80.

The one person in family who supports them, brothers wife, would be 90.

So we’ve toLd them that well that won’t be realistic. I reckon we will all be ready for some al by then.
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SnoopyLove Apr 2023
Hey, maybe y’all can get a group rate! 😉
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What we want and what we get are two different things.

Mom won't get to die in her home if you die first, so sorry, Mom.

Dying in one's home is overrated. From my experience with my parents, neither knew where they were for several days before they died. (For Mom it was more like months.) Both we essentially unconscious in those last days. Dad was at home, Mom was not. I don't recall my father dying with a thumbs up and a smile thanking ps for his location of death.

You needn't be quite as blunt as I was just then, but if Mom needs more care than you believe you can give her, then she needs to be moved to that place. you are not required to lay down your life at the altar of hers.
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NeedHelpWithMom Apr 2023
So very true!
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Welcome, sorry that you are in the burnout mode, it happens when one cares for another not in a facility. It is overwhelming.

I would suggest that you have a meeting with your siblings and make a plan to place your mother, so you and everyone else can have some quality of life.

It is no longer about what your mother wants it is about what she needs as well as you.

My mother is 98 and I see her living another couple of years, she is in AL, and likes it, being around people her own age and enjoying the activities and not having to lift a finger.

Time for you to regain your life, you have done your part, or should I say more than done your part.

My mother loved her home as well, but she could no longer take care of it or herself and my brother & I lived 700 miles away, it was time for her to go into AL, best for all concerned.

Sometimes we need to bite the bullet, accept the facts, you are entitled to a life and you are not getting any younger either. Don't waste the years you have left caring for your mother 24/7 when there are other options available.

Best of Luck!
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