When my mother was diagnosed with COPD ten years ago, she came to my house and said, “I’ll have to train you how to take care of me.” I gave her a funny look. I wish I had sat down with her then and asked her what that meant! Shouldn’t she have asked me how I felt about that plan? It’s my life, too, isn’t it?
Two years ago, the disease progressed. She has almost died four times. I’ve moved in with her each time, followed her to hospitals near and far, called ambulances, spoon-fed her, took her to all her doctor’s appointments, shopping, and outings. We hired a nurse to check in on her twice a day and she has lived independently with help. She recovered each time to some degree. She’s the most determined person I’ve ever seen.
This last bout of disease progression has rendered her bed bound. I’ve been changing her Depends, cleaning up her private parts, sleeping over once again, and have basically stopped living. Her private care nurse who used to do 3 hours a day is trying to put together a nursing team to keep my mother in her apartment, giving me 100 hours a week on that schedule! My brothers would be thrilled if I agreed!
The truth is, I’m done. I’ve given her two years of my life. She never asked me what I thought about her old age plan and I’m drawing the line. I’m done. I’m so angry at her right now, I can’t even begin to explain it and I feel terrible for feeling that way at the end of her life.
I was okay helping and caring until she became bed-bound. This is not the level of care I had ever expected to give. We are looking at a skilled nursing facility and it’s going to grieve her to leave her home.
I told her tonight I don’t want to be her caregiver, I want to be her daughter. I want to watch Jeopardy with her, bring her dinner. I am not comfortable wiping her, or getting up at 4:00 am to throw soiled clothes in the wash and change sheets. Her oxygen has fallen off twice from her nose, her oxygen levels dropped.... just a rollercoaster.
My mother has some money and could have planned for her end stage of disease many years ago, but the truth is, I was her plan. I’m cheap labor. Compassionate and loyal.
We’re already getting flack from friends and relatives. But I’m traumatized by this latest phase of her disease and the kind of care they’re asking of me. I can’t believe she expected me to do this.
Today I’m declaring that I matter. The guilt is real, but I must matter to myself.
Friends and relatives can pound sand.
I agree that taking care of a bed-bound person is waaaay too much. I would never be able to nor want to do the personal care required. Hard no on that one.
I'm not that familiar with COPD - is her decline inevitable or is there anything that can be done to get her back out of bed? PT? You said she's determined? Sorry for my ignorance.
COPD folks at the end stage don’t have enough oxygen to support muscular strength quite often. Plus, for every day a person is in bed not using their muscles, it takes a week to regain that strength, and that’s with normal lung function. Hospice doesn’t feel she will ever walk again. I think her days as an able person are over....although with her, you never know.
You can't be expected to do care for someone that trained people do. Just because your the daughter does not mean Mom is your responsibility. Good for u for standing up to yourself.
Do you have a job? How can you do that when you are her caregiver? You say you have brothers, and that "we" are looking into a SNF. Are your brothers looking into this with you? What have they done to assist your mother over the past two years?
Tell the family and friends who don't like it that they are free to move your mother into one of THEIR homes.
Keep us updated!
"I'll have to train you how to take care of me".
What a thing to say to someone. No, there is no need for your mother or anyone else needing care to "train" anybody. This is what nurses and CNA's are professionally trained to do.
Tell her plainly that if adequate care for her cannot be provided in her home without you, she will have to go into a managed care facility. I'm happy to hear that you're fed up enough to stop playing her games.
I was an in-home caregiver for almost 25 years. My mother's old-age plan was that since I'm experienced in this field I will simply assume the position of nanny slave to her abusive neediness. I came back after I got divorced and have been caregiving for her for a few years. I'm done now. So are you.This arrangement was always going to be temporary. You never agreed to be a slave until your mother dies. She has chosen to be in denial and talked herself into believing that even if you get angry and rage about it, in the end you'll take care of her. Maybe it will be grudgingly. Maybe it will be with resentment. Maybe it will ruin your life, but that doesn't matter because you'll still do it.
My mother does this too. They both may have to receive a rude awakening to accept the truth. So be it.
As for the guilt....
It is disgustingly wrong when a person weaponizes guilt. People are supposed to feel guilt because their conscience is telling them they're wrong about something. They should be sorry, make amends, and do better.
Guilt is not supposed to be a weapon that one person turns on another so their needs and demands get met on their terms.
Choosing to not be a caregiver isn't wrong. So there's no reason for guilt.
A person may choose to be a police officer instead of a chef. Are they wrong for not becoming a chef? Should they feel guilty because they chose police academy over the Cordon Bleu?
No. They should not.
Your life choices are your own and you have a right to choose your own life.
A. With progression you cannot give level of care your mom requires now.
B. Everybody should plan for end stage of disease, alternative and realistic plan, not involving family in advanced care.
If you have funds for private pay care at home, I imagine you may have funds to admit her directly to a nursing home as a private pay client. Already on hospice and bed bound from COPD, the likelihood of her regaining the strength to get out of bed with less than maximum help from 2 other trained caregivers is remote. As long as she can private pay for a couple of months, and you can do a Medicaid application at time of admission, you should be able to get a bed.
You may need to push hospice SW at bit.....and if you know a SNF that you want, call up that SW and tell the story...they may be very eager to get a self pay resident for a few months........and hospice care can continue in the SNF.
Good luck!