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PSDaughter Asked May 2022

How do you deal with the guilt of not being with them 24/7 when you are the only one they will accept?

I'm an only child and caretaker for mom with cognitive decline and memory loss. She has no other family or friends, and has given up all activities and hobbies due to her inability to process procedures. She doesn't want any caregivers other than me.

AnnReid May 2022
I did this. She’d had a stroke at 85, by sheer strength of WILL, rehabbed HERSELF, and went home to live in her shabby little cottage to live by herself, until almost 5 years later, she fell and broke her hip.

Then I, who had laughed together during her younger days in ABSOLUTE AGREEMENT that we couldn’t and WOULDN’T ever, EVEN FOR ONE DAY try to live together for ONE DAY under ONE ROOF, insisted that we bring her home,

I did that because I KNEW, that without having me by her side every minute of every day, she’d suffer from her life long anxiety, and I’d be responsible for killing her.

I slept on the floor beside her bed for six months, ate every meal with her, attended and achieved every detail of her toileting, bathing, dressing……..

She was miserable, turned on people she loved, refused every suggestion I made, but screamed for me if I tried to take a 5 minute shower…..

I was miserable, gained 60 pounds (10 pounds/month) and lost my job.

One evening when I prepared to put her to bed, she shifted her weight so that we were both headed for the floor. My immediate thought was damage to the “new” hip or breaking the good hip.

In that moment, I knew that I’d made the WRONG choice. SHE needed expert care, and I needed a good night’s sleep, IN MY OWN BED.

She had done her Medicare rehab in a cozy local residential care center, and I called them. They said they had a place. I took her there.

It was the BEST DECISION I COULD EVER HAVE MADE FOR HER, and also worked better for me.

I got another job, visited her every day, and she THRIVED. The last 5 years of her life were the best she’d had since she’d lost my father. She had companionship, something she’d avoided for years, and care FAR BETTER than what I’d offered.

My mother didn’t “want” any other caregivers, but came to love the whole staff at her residence SO MUCH that when her house was sold, one of her “girls” bought it.

You are doing “guilt” to yourself, as I did. As a motivator, guilt is a totally NEGATIVE force, never positive. When you guilt yourself, as I did and as you are doing now, you release torrents of painful, negative non-progressive thought on yourself AND those around you, then become entrapped in it.

I loved her dearly, still do, but learned a lesson from our months of living together.
I share that lesson with you, and send hope that you’ll benefit from it.
Island9445 May 2022
And, it's SO wonderful to be a daughter once more instead of the caregiver, isn't it?
bundleofjoy May 2022
“you are the only thing they’ll accept”

you mean:
you’re the only one they’re willing to exploit and take advantage of, with no regard to how that destroys your life.

that’s what you mean.

and OF COURSE, you’re a girl.

please - you are 1 of ten billion trillion daughters whose lives are asked to be sacrificed, because your life means less than a man’s life.
Rhernandez20 May 2022
You are so right! I was one of those daughters! Until God got be out of bondage. My father was sucking the life out of me. I became the enemy because I would not let him manipulate me. Unfortunately my sister is having to deal with him and his narcissist ways. He wants her because he can control her. I sometimes wonder if he’s human. I pray every day for them it’s a hard situation especially when it’s a parent and you care.

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BurntCaregiver May 2022
Stop being the only solution they will accept. When you stop being the only solution, people have to accept other alternatives whether they are willing to or not.
This should not be a source of guilt for anyone. Your life is not supposed to be spent in servitude because you're the only person your elderly parents want caring for them.
Giving people what they NEED is often very different than what they want. Remember this.
You have value and are important too. You don't have to make yourself a slave to the needs and wants of others to prove that you're a caring and compassionate person. You can advocate advocate instead. You can make sure good caregivers are in the home who will do right by their clients and families. You can find placement in a good facility with quality care.
Letting others miserably exploit you so you will become a nanny-slave to them is not love. Don't let yourself fall into that trap and martyr your life to it.

TChamp May 2022
Unrealistic demands should be ignored. No matter what.

Seekingcalm65 May 2022
My mother expects to see me daily even though that can't happen. I'm learning, with counseling and my own internal dialogue--to choose when I see her. I cannot fill her emptiness. Even if I saw her EVERY day, I would never fill her emptiness. My mother's needs/medically and emotionally are so high right now, that I often feel like crawling under a blanket and not leaving..I can't let it happen to me though. Life is short, and we can love our parents without killing ourselves in the process. Do what makes YOU feel good..and guilt isn't needed. My mother didn't go live near her mother when her own mother had issues/went to a nursing home. She barely visited my grandmother back then and yet she expects differently from me. I see her far more than she ever saw her own mother. You do have to work hard at just remembering you have a life and it can't be completely focused on her.
ConnieCaretaker May 2022
FaceTime has changed the world; you both can get what you want.
AlvaDeer May 2022
You change your G-words out.
Use the word GRIEF. Because grief is what you are experiencing. Grief for the unrealistic expectations of your parents. Grief that you are not God, hence are not omnipotent and in charge of everything in the world.
Felons, who should feel guilt, feel none. Just saying.................
bundleofjoy May 2022
i understand what you say.

but i disagree. hug!

one doesn’t just do bad things through action - but also through inaction. (for example neglect).

it’s not only criminals/felons who are “guilty”…

even a simple thing like saying unkind words to someone, can make you feel guilty for days/years, even though you committed no crime. doesn’t matter. our conscience guides us.

some people feel over-guilty. they’re over-doing it.

some people feel under-guilty — they should feel more guilty with how they treated or neglected people.

now regarding OP:
only you OP know all the facts.

you OP already know: you must do what you feel you must do, because YOU’RE the one who must live with your actions/inactions.

if possible, being kind to one’s elderly LOs, while still doing all one can to live a full life oneself.

hug!
MeDolly May 2022
No, is a complete sentence.

No, I am sorry I can no longer allow you to overburden me because of your wants, not your needs.

The guilt part is all yours to bear, it is a self-imposed emotion which keeps one trapped and is driven by fear.

The bottom line is that they will eventually accept what they have to.

Take back your life, jump in the driver's seat and take back control of your life.

TChamp May 2022
Guilt in those cases is inappropriate. You're in charge of your schedule and you administer your time according to your priorities and needs. Being available 24/7 will not increase their life spans.
RichCapableSon May 2022
My name is Greg. You are flat wrong! My mother was expected to die by 2009 when the southeast San Antonio gerontologist called us in and told me in private away from her that she had now reached the stage of Alzheimer's that she has only five years left. He specifically called me to bring her in to hear that message in the year 2004. "Nothing can be done. That's just the way it is. Once this disease progresses to this stage, they all pass away in five years. You are one of 100 families I am calling in to give this message. You must get ready with all the paperwork and family matters so you are ready for it; funeral expenses, final care, everything."

In 2009 I got a call from the Dr's office, on Clark Avenue, to come back in, not for a follow-up, but that he wanted to see me and to bring my mom. The nurses checked her out while we talked privately. He said, "Do you remember when we had a talk about your mom five years ago?" I said, "You mean when you told me mama had just five years left to live?" He said, "Yes! You remember!" I said, "Of course. You tell me my mom is gonna die in five years time, you don't think I'm gonna forget that, do you?"

He said, "Well, it's been five years now." I said, "Yes sir, you're right. It's been ABOUT five years since we had that talk." He said, "No, it's been five years today since then." I repeated my statement to him, not realizing what he was trying to tell me. So he repeated a third time, "No, TODAY it makes five years that we had that talk. Today is the anniversary of that talk." "Today?", I said. "Mmm, hmm", he said.

"And as far as one can tell, your mother is in the same condition as she was five years ago." "Thank you", I said. "That's good to hear." He replied, "You remember I told you there were a hundred other families I had to tell the same message?" "Yes sir", I said. He replied, "Well, all 100 of those other patients have all passed away just like I told them." "All 100 others are dead?", I said. "Yes, they've all passed away. And that's why I had you called in."

"I felt you needed to know about this", he Calle said. "Well, thank you", I remember saying. He then begain to explain to me the details: "You know, we went through all the records to see how we treated your mother differently from all the rest of my Alzheimer patients to find the answer to how your mother is still alive." "Yes sir, I can see how important that would be. So you studied through all of mother's charts since she'd been with you." "NO", he said. "NOT your mother's chart. ALL 100 PATIENTS' charts." "All one hundred patients' charts you guys studied to find this out?" "Yes", he said.

"When did you have time to do that?", I asked. Dr. Calle said, "Evenings, weekends, holidays. It was that important to find out how your mom was stilll living. You understand I have thousands of patients with Alzheimer's. Every year I give that message to one hundred of my patients families. Every five years they all die as I predicted to them. All the years before you were told, each year a hundred of my patients died from Alzheimer's after reaching that stage. Everybody, except your mother."

"Oh, wow", I said. Then Dr. Calle said, "We went through all one hundred records and found NOTHING. No difference in how we treated your mother and them. Everybody we treated the same way. So we began to look at your lifestyles for the difference."

"Lifestyles?", I asked. "Yes, your lifestyles", he said. We discovered you take your mother with you everywhere you go. You take her to church up the street every Sunday. You take her to eat out every single day. (Yes sir.) You take her to Bill Millers BBQ. (Yes sir.) You take her to El Tipico. (Yes sir.) You take her to the Shangrila and La Chinita's chinese food restaurants. (Yes sir.) You take your mom to Neptunes. (Yes sir.) You take your mother shopping every week grocery shopping. (Yes sir.) You take her to HEB. (Yessir
JoAnn29 May 2022
She has Dementia and you are her familiar. That does not mean you have to be there all the time. Hire someone. She will just need to except the person. Tell them its a friend just going to sit with her while u go to the store.

Evamar May 2022
I agree with BurntCaregiver.
You cannot be a slave, whatever your circumstances, guilt is useless emotion, guilt and caregiving should not mix.
Good caregiver knows when to step aside, after all you need to take care of two people, one is you.

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