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Quarkles Asked November 2021

How do I convince myself to remove myself from 24/7 care for mom in her home and get more in-home help, or place her? Send encouragement?

Just started my 5th year with mom in her home after her request that I move in (from another state.) I have posted before with excellent advice, but I can’t/won’t bring the subject up with mom b/c she wants to remain in her accessible home. But I am beyond burned out—compassion fatigue for sure. I felt good when I moved here, but I am now worried about my health. Too much stress and not caring for ME. (I was warned.) I feel upset with her for thinking only of herself. She doesn’t think of my welfare at all and doesn’t like for me to leave her for time-off (2 days every 6 mo.). What?
I’m tired, resentful, and almost hopeless. Clearly, this isn’t right, but to be honest, she has always treated me like this, so it’s hard to break out of. I read Boundaries, and other books. It’s just hard to sit down and have the conversation because she will cry, manipulate, and be upset. Please send helpful comments, especially, HOW TO STATE IT with a mom who is lovely, but who wants what she wants? Thanks.

WJ1974 Nov 2021
2 days is more than I've gotten in 5 years caring for my aunt 24/7. I just now finally got Choices through her insurance. I'm hiring 2 full time workers. I'm where you are too. You just gotta do it. For yourself. I'm losing my mind also... breaking out in hives, living with headaches. You have to do it. If you don't care for yourself how are you going to continue to care for her???

CTTN55 Nov 2021
Your mother asked you (not your brother or sister) to move in with her and become her caregiver. 4 years is enough! Time to place her. Or else it's your brother's or sister's turn to move in to take care of her.

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RiverNomad Nov 2021
Everyone who posts a reply here has their very own set of circumstances unique to their experience and relationships. 

So, here’s what you might consider, based on my experience: think with your heart.
 
Hire in-home help before putting your Mom in a facility.  
 
Later, you may find, as I do, that the weight of grief is lessened by the guilt and
regrets you don’t have. 
 
My amazing Mom was the most unconditionally loving, giving, hardworking, and
inspiring person I have ever known.

The two of us were a team all my life through challenges, rewards, and simply enjoying life. She put the needs of everyone she loved ahead of herself.
 
Mom never asked to not be put in a facility. In fact, she suggested moving in to
one so as not to be a burden or impose on me.  
 
Instead, I frequently volunteered that as long as I was alive, she would never be put in a facility.

The cost of hiring in-home help privately, not through an agency, can be very similar to the basic monthly cost of living in a facility. 

During one of our daily walks, Mom and I would see a woman conducting a senior class at a nearby fitness club. We were able to meet her one day and learned that she was a home personal fitness trainer in addition to working for the club. Starting one day a week for an hour, eventually became five days a week. She shared Mom’s spirituality and faith. What a home run! 

For me, people sent by agencies were unsatisfactory, and expensive. So, I got online to read postings from caregivers looking for clients. Pay attention to the way the caregivers communicate and spell in their postings. Clear, understandable communication, and the ability to write down information that can be read and understood, is important, especially in an emergency. 

I interviewed caregiver candidates at a local café, before or after lunch, over coffee or tea. This is inexpensive and a great opportunity for you and the candidate caregiver to ask and answer questions, and avoids giving out home address information to someone you haven’t met in person first. 

Be sure to tip the server well even though the bill for coffee and tea isn’t much. Doing so will ensure friendly treatment each time you come in to conduct an interview and tie up a booth.

If you aren’t comfortable with the idea of interviewing people, it’s likely you have a confident, outgoing friend or family member who could join you and help with the interview. 

There are many CNA’s working in short-handed facilities, caring for up to 60 patients per shift, who would much prefer to give full and undivided attention to one person. They are out there.

In addition to full ADA safety equipment installed by professionals in the bathroom and shower, the safety protocols I developed, that all of us followed, resulted in Mom never falling. The extent and level of our care exceeded that of a Skilled Nursing Facility. No, it wasn’t easy. But what we all accomplished together: Mom, the caregivers, the personal trainer, and me, was very satisfying. 

Thankfully, Mom's life was far from being the equivalent of a neglected potted plant in a short-handed facility with constant turnover, wearing soiled briefs for hours, with the television blaring and the call button ignored. 

It took effort, and not everyone we hired worked out in the long run. But over time, it worked well and kept Mom’s life safe, interesting, connected, and enjoyable.

Like everything we do, by putting in the effort and working on it, we’ll get better at what we take on. 

I admit, one exception for me has been the process and work of accommodating grief, adjusting to the presence of Mom’s absence.  

Mom won the last hand of progressive rummy we played, and offered me these comforting words as her life was drawing to a close: “I will always live in your heart”

With candles flickering, and classical music softly playing, Mom died at home as I held her hand.

I am so lucky, and will always be grateful, to be her son.

Beatty Nov 2021
I just re-read your question.. & have changed direction (love the edit window).

It seems you haven't quite decided that 'non-you' help is required for Mom?

Is that the sticking point?

If so, how do you feel about these issues...

Do adult children have to provide care for their aging parents with their OWN two hands?

What if you only had one arm? Was blind, had MS, got cancer. Or was a immunologist on the cusp of a world-changing discovery or elected President?

Are there other ways to arrange care?

Is Mom entitled to have her every want, whim & wish come true? Even if it causes harm to others? Even if it causes harm & damage to the life of her adult child?

Lizbitty Nov 2021
I can fully appreciate the state you’re in. I’m sorry it’s so hard on you right now.

I think the problem you’re going to have regardless of whatever words you say is that she won’t want to accept reality. Your mother, like my MIL, is only concerned about her own concerns and not that of anybody else. My 5 year old son could be crying because he got hurt, and she would start yelling at him because he’s being ‘too loud’.

So, what to do when you can’t reason with someone so unreasonable? You lie your face off. Your own mental health and life are every bit as important as hers. Your sacrifice for the past 5 years has been commendable, but that time is coming to an end. Now it’s time for mom to have a ‘vacation’.

You’ll feel guilt, but you need to push that aside because you’re taking years off your own life dealing with the constant stress. You’re done. Own it, embrace it, and make a plan. Don’t look back or feel bad. You gave it your best shot, but it’s now time for a new chapter in your life. Her’s too.

dcalig Nov 2021
I feel your pain I’m so worn out depressed and exhausted caring for my mom

vegaslady Nov 2021
Have your doctor and hers prescribe that you must resign from your position and retire as her caretaker for your health reasons. Then other arrangements must be made for her....sorry Mom. Doctor's orders for me. Change of arrangements for you.

Esthavera Nov 2021
One of the terrible aspects of dementia is that early in the course of the disease there is a lack of insight called anosognosia. She is unaware of her disease and its impact on both of you. She will become increasingly self-centered to the detriment of her own health (and yours).

Given her inability to embrace logic, you will have to make the extremely painful decision to decide what is best for both of you. The terrible nature of the disease is that you can NEVER win this verbal argument; she is not herself and her poor judgement and self-involvement is unmovable. It's so hard but necessary for you to take control. It's one of the toughest acts of love.

"Life Under Deborah's Palm" on youtube addresses the tough day we take the one we love to the facility of our choice. Please know, she will adjust, you will both live longer and be healthier for the decision. Be strong. There is light at the end of the tunnel. Peace and strength to you.
lealonnie1 Nov 2021
My mother is 95 in Jan with advanced dementia and STILL refuses to believe there is anything wrong with her; that she's in Memory Care AL with a bunch of 'idiots and morons' for no good reason! It's not only early on that dementia ridden folks suffer from anosognosia~!

Good advice you gave the OP!
AlvaDeer Nov 2021
Not everything can be fixed, and almost nothing can be fixed without pain. The truth is that your sacrifice of your own life could leave to a cortisol level that could impair your own health for your life, can in fact give you an early exit, and then where would Mom be?
One of our community here has an expression I love: There will be no answer as long as you are all the answers. And don't think there will be thanks for that. The relationships we have are contracts, as I learned in therapy. We sign on and what we do is expected of us, and it is expected that we are doing it by choice because we want to. In fact, when, at the end of our ropes we ask for relief the other becomes quite angry indeed; we are not fulfilling our contracts, anymore, are we?
It is time I think for you to consider professional help. There will not be magic. When you explain to your Mom that you cannot go on at this level she will grieve, and in that grief she may strike out. You will need to be ab le to comb out your feelings of grief for being human so that you don't assume a mantel of guilt that will be just as destructive as where you are at currently.
You have made the first step. You have admitted to yourself that you cannot go on at this level, that you may destroy yourself. That you are sacrificing yourself. To be frank, your Mom has had her life. She has made of it what she could. Now it is your turn. Don't expect to have her tell you that; that is something you must know and accept for yourself.
I am so sorry for all that you are going through. But I am happy you have made this first step in admitting where you are at this moment. You are by no means alone. You must choose now the hard work of change; often, with all the grief and pain, the habits we KNOW are where we stay. Change is even more terrifying sometimes than the loss of our own lives and being.
I sure do wish you the best of luck. I know you can do this.
Beatty Nov 2021
Such a beautiful answer.
Leebee Nov 2021
Oh my, this is my situation too! I hope I can get my nerve up to look after myself.

lealonnie1 Nov 2021
Your mom isn't quite so 'lovely' if all she thinks about is herself and has no clue that you're in such a burned out and hopeless situation after caregiving for her for 5+ years now, huh?

Mother, my doctor has advised me to reduce my stress levels and my work load/caregiving duties dramatically or face hospitalization and a mental breakdown in short order. As a result, s/he has advised me to place you into Assisted Living so I can begin looking after myself to avoid this health crisis. I love you and will visit you often. Thank you for your understanding in this matter.

Know that you aren't 'wrong' to think about your OWN health now; what will happen to your mother if you die before she does? Who will look after her then? It is not unusual for things like this to happen, either!

Best of luck.

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