Tell your story of when you decided that you could no longer be a caregiver.

Oh my gosh, Elaine.

That’s crazy!

Needhelpwithmom, my mother has no problem screaming at other people, especially on the phone. The only people she doesn’t yell at is someone of authority. She won’t yell at doctors or policemen.

She goes off on people because she is RIGHT and everyone else is WRONG. She will scrutinize her receipts and then go up to the customer service desk at the grocery store and start yelling that they gypped her out of 35 cents. We are talking CENTS!!! She always manages to get her CENTS back!!!

But blowing hundreds of thousands of dollars over the years at the casino is DIFFERENT.

Severe mental illness is what I call it. She doesn’t care who she yells at because she is ALWAYS RIGHT!!

She yelled at the call a bus driver numerous times and then she reports them. She was upset because while she was waiting for call a bus to renew her for another 5 years, she had to take Oscar which was free. The driver asked for a donation and she said it’s FREE!! They argued about that. She’ll argue about anything. But she is the one who is RIGHT!

NeedHelpWithMom, water is a soothing and calming element for me as well.  I don't know if it's b/c I grew up at a lake, swimming literally every day during the summer and ice skating in the winter, but water has a calming presence just through appearance; gentle sounds of lapping on the shore add to the effect.

Wyoaviator, I'm pleased (and excited) that even a brief glimpse of flowers made a difference!    I'm wondering if you could find something that recycles water, something like a small pump?    I have vague recollections of seeing them decades ago in medical offices but that's all I remember at the moment.  

There are also some water recycling containers for outdoor gardening; they're smaller than a large pump.  In fact, Japanese styled gardens that I've seen in magazines often have them.    They're made of bamboo, the water fills, then empties; overall, the sound produced is soothing and rhythmic. 

I found lots of hits for "bamboo recycling garden pumps", and although some of them would be too large for indoor use, they might inspire something smaller.

Another option is a CD of waves lapping on shore.   We found that comforting during my sister's last months of her battle with cancer.   It's probably why when I travel to the West Coast of Michigan I find a secluded place, sit down on the beach and just listen to the waves.

And just another thought is to put up lovely photos of lakes, especially the beautiful ones in uncultivated, mountainous areas.  

Does she respond to music?    When my father was segueing toward the end, one of the staff at the facility found a 24/7 channel on tv that rotated nothing but nature scenes, accompanied by soothing music.    My father wasn't able to speak then, so I don't know if it affected him, but it did soothe me.

Your mountain wilderness retreat sounds lovely, and I'm sure it's beautiful as well. There's something very special about mountain lakes; perhaps it's the contrast of the smoothness of the lake water, calm and serene, with a background of stunning snow covered mountains soaring into the sky.

Do you think large pictures could be calming for your wife?

I wish I could offer more some suggestions for this trying and challenging period in your life.   


Oh, and a comment on electronic medical record systems.    While they may be helpful in concept, in actuality they also can contribute to extensive data gathering, sometimes sold to those who capitalize on such data.   I learned that when I had cataract surgery and was advised to enter all my medical information on the medical practice's surgical center's website (I refused).    My search for how that data might be protected under HIPAA led to some interesting applications, for profit, obviously.

Oh Garden Artist, how I wish I could do "nature therapy/forest bathing"..... anything like that!

We have a mountain "place" on the edge of the wilderness. It is so remote that we don't have electricity (nearest power pole is 20 miles away), obviously no cell phone service, etc. It was our "hideout." How we enjoyed getting away from everything. This place could be considered the definition of this kind of therapy.

Back in 2017, we invited 55 people to this place because it was withing the zone of totality for the total solar eclipse. Because of the remoteness of the place, we had to prepare for sixteen months (for a two minute event). In hindsight, it was at this event that I saw the beginnings of her deterioration.

Now she has incontinence issues and difficulty getting into and out of the car. (she can't/won't participate in PT.) We have not been up there together in over two years. I just go up there by myself to clean up, do some maintenance, etc. Taking her without a full-time attendant would be borderline crazy.

As much as I miss the wife I had, I realize we just cannot keep things the same forever. The world is constantly changing.

But, thank you for the article. Because of it (in hindsight again!), I notice that when I take a plant or flowers to her room, she calms down about half a notch. I am going to continue to work that angle.

All of you, Beatty, Burnt and Elaine describe perfectly what I felt too. We got sick and tired of being sick and tired!

Elaine, your mom is something else! She broke the mold! No one else like her, huh? I bet she was charming to others though.

My husband’s grandmother was so charming to everyone else but behind closed doors the horns on her head would come out! She became like a demon! Hahaha

I knew last November when my 96 year old mother and I went out for dinner. I took her out every Saturday evening for dinner. She stopped driving in 2016 so I felt guilty she couldn’t go out.

This one particular Saturday evening in November 2019 she asked me to do something and I told her no. We got into an argument at the restaurant and she turned to me and said”I don’t know why you want to be my caregiver.” I yelled back “I’m not your caregiver!!!”

She was mad at me and wouldn’t speak to me in the car when I dropped her off home.

I stopped doing things for her after that night. I haven’t taken her out to dinner since that night. Her brain is broken. She has severe mental illness not dementia. I can’t help her. She’s a hoarder and I can’t stop her. She looks like a homeless person because she neglects herself. She’s not the same person that I grew up with.

I begged doctors, social workers, policemen, Firemen, EMT’S, APS, to help me!! They all said the same thing to me. “I am so sorry, since your mother is competent and can do things such as cook in the microwave, get her own groceries, order and take her own meds, there is NOTHING we can do. They told me just because someone has mental illness doesn’t mean they are incompetent. People make bad decisions all the time. They are free to do as they like as long as they aren’t breaking any laws.

I finally accepted it and I know that it’s not my fault.

Beatty: You said it the best that I've ever heard. People who care about you are willing to throw you under the bus to keep it going in the direction they want. No truer words have ever been spoken. I think it's time to give up being a caregiver when you realize that you're becoming the person you care for. No life, no joys, no happiness. Just gloom, doom, misery and complaining. That's when it's time to call it a day.

I can't pinpoint the exact spot when I decided to 'resign' from caregiving.

But one day the phrase 'bite the hand that feeds you' popped into my head.

Could have my hand bitten & my whole arm ripped off but still be expected to 'fix' & do everything.

I could absolutely relate to all Mysteryshopper said (so well).

I wrote on my profile that I felt a hostage. Trapped on a runaway bus, no-one listening to my advice or letting me drive.

I suppose I still feel hurt that people who cared about me, were absolutely willing to throw my life under that bus to keep it going where they wanted. Maybe it was not intentional... a lack of insight of the care recipient plus lack of responsibility & denial all were factors. I found Dorker's story along my journey & it really resonated with me. I took steps to return to sender what was not mine to own too. This tale helped me so much!

Once I got support & knowledge I stood up for myself & got off that crazy bus.

I found the serenity prayer useful: knowing what was not in my power to change - as Wyoaviator wisely did & Seniorstruggles is doing now.

I don't regret what I did. I stepped in to help & was taken for a ride but I learnt SO much.

The long line of relatives (mine & DH's) looking for childminding, grocery service, cleaning, taxi, dog minding etc will have to look elsewhere. Small favours - yes. Taking on dependant people's lives - a big NO. I got of that bus & am now steering my own life - into a sea change beyond their reach.

Garden,

Nature is very soothing. I agree.

My favorite part of nature is water. Something about the sound of water is almost hypnotizing for me.

Any water sounds are calming to me such as waves splashing, running rivers and streams, a waterfall, fish jumping and splashing in a bayou, rain falling and even a fountain in a garden.

Just looking at a small pond is calming for me. My neighbor has a backyard pond with fish. It’s so lovely.

Another neighbor has a birdbath and watching birds splashing in it is so sweet.

Maybe I was a mermaid in a past life! Hahaha

My second favorite part of nature is simply watching clouds float by. I did that as a kid to daydream and escape the craziness that goes on in our lives at times.

Aviator, I found the article.  It's part of a practice called "Forest Bathing", i.e., immersing yourself in nature.  You don't have to backpack, or even hike.    Participation can be at any level.

https://time.com/5259602/japanese-forest-bathing/

I don't know if or how much it could help your wife, but you might start simply, with artificial plants in her room, to create plenty of greenery and color.  I've found that's very soothing when I'm upset.    My father and I used to take walks, and he often walked in the neighborhood.    Just the practice of being outside was relaxing.

Aviator, can you take your wife on short hikes and outdoor ventures in your area?   The peace and isolation of wilderness may contribute to some calming, although it's not an complete substitute.

If I can find the link to an insightful article on Nature as a healer, I'll post it for you.

Aviator,

Quite a story! I wish nothing but peace for you. You’ve earned it. I’m still shaking my head at what we have endured as caregivers. It’s no wonder there are so many facilities doing business in the world today.

Backstory: My wife is brilliant-PhD candidate, elegant dresser, throws (threw) dinner parties for a dozen, speaks five languages, etc. etc. etc.

I knew I had could no longer be a care giver when she: 1. Called the police on me for a wild party in the basement (I was asleep in the recliner.); 2. Kicked me out of the house for an affair I was having with the woman in the next room (no one there.) I knew if she called the police a second time, I was pretty sure I knew the color of the bars on the county-funded motel where I would be staying against my will, so I left of my own free will. I knew at that point she needed help and I was the only one who could get it for her.

In between number 1 and number 2 above, she fell and went to the hospital. The hospital said she was fine to go home and discharged her. The social worker said I was exaggerating my claims.

We have been on the dementia journey for three years. She has been in AL for three months. My experience is that most of the people in the medical community are ignorant and unprofessional. Choose your doctors carefully. I have experienced so many half-efforts that I have become quite cynical about any visit to any physician. Calling a doctor a "care" provider is misuse of the term. Most drs are simply a modern day slot machine-regardless of what you get from them, you pay up front.

The most helpful and caring people I have met on this journey are the staff at the AL home. Cultivate your relationships with them. Pay the drs. Oh, and don't get me started on the hospital's electronic record system. I have been told there are times when it DOES work, but I have never seen it.

Covid has certainly caused some people to feel even more trapped in caregiving situations. I am curious how many of you feel that even with Covid they can no longer do caregiving in their homes.

Please share how you feel about not caregiving during the pandemic.

SS,

It’s extremely difficult, as you well know!

You deserve better! Don’t you dare feel guilty about taking your life back.

Take care, dear lady.

Oh, you wonderful, brave people! I am SO grateful for all that I have just read here! You have just nipped in the bud a perilous slope I have started down.

Short version: I met my father and his lovely wife when I was 28. He had left when I was around 4, they tell me. He was kind, jovial and happy when I made the effort to come see them. I got divorced a few years later and I visited them a few times. They asked me to take over their $2K/mo healthcare costs. I said no. They said, "Then we're moving to Costa Rica". So I bought them a book on how to do it and...they were gone for 11+ years.

They came back to the USA about 5-6 years ago. I have seen them 3-4x since their return, and I call maybe once every six weeks, during which time my "father" tells me about which kind of nails he used in a roof he built in the '70s, or why I'm a fool if I let my handyman use the wrong brand of drywall...

My daughter, who was 8 months old when we met them, is now 28 and hasn't seen them since she was 9 y/o.

I visited them for 48 hours 3.5 years ago. I stay in a hotel because their home is filthy. My father had a pacemaker put in 4 months ago, so I took myself to their awful squalid home in rural Missouri to help out my stepmom while he recovered. That's when I realized they are...dying. And there's no one to help them. And long story short, I moved them into a condo I bought them here near Chicago...9 days ago.

And I am already stressed out, exhausted, frantic, and I've somehow become their slave girl. I don't know or even really like or trust these people. They've frittered away all the money they've ever gotten and are still at an astonishing burn rate. I'm NOT interested in any more help for them financially, and I WILL NOT do the things I've already done this week again: changed poopy sheets, pcked up pee-filled diapers, bathed my stepmother's frail body, taken my father to the emergency room for what I think was jsut a bid for attention. They're clawing me to death. My house is a mess, my business is a mess, my relationship is suffering, my inner self and and sense of peace are disintegrating.

My biological father complains, cries and asks me the stupidest questions all day every day, while he sits in a chair and expects my handicapped stepmom and now me to wait on him hand and foot. Thanks to your stories, I am putting my foot down!

I will get them into whatever services Illinois offers; I will visit them once a week and help drive them in emergencies, but I am backing off as of Monday. Not my job. Not my desire. I don't love them, I barely know them. This is ending, now. Thank you for your encouragement and insights.

Mystery,

Powerful words. There are so many emotions involved in caregiving.

I love your description of your experiences.

Thanks for sharing.

It's hard to know where to begin to respond here.  I think my giving up was a series of events.  Maybe a lot of little things that added up?  I do remember a day when it hit me that I was no longer a human being to my LO and her immediate family (aka "the onlookers").  My value as a person was measured by what I did for LO, how well I did it, how quickly I did it, how cheerfully I did it, and how well I smiled through intense criticism.  My flesh and blood human side was disappearing because I HAD to detach to some degree in order to be able to get out of bed in the morning - and sometimes morning came awfully early.  Problem was that I was slowly detaching from everyone and everything.   LO and the onlookers kept making the demands and criticism was more and more sharp and unforgiving.  LO became more and more entitled and dependent on me and the onlookers felt this was OK and I would adjust to it.  Somewhere along the line, I became THE ONE who would fix it all and no one stopped to think that maybe I simply could not.   I finally concluded that LO either could not or would not strive to be less dependent on me.    She was going to be more dependent steady right along and I was already fried.    And these were people who I thought cared for me, but I think it was some weird kind of implied agreement that I would fix their lives for them because I appeared to be someone who could do so.   I am a natural problem-solver and a "fixer" and there had never been anyone in this family system who did any of those things.  I don't think they realized that some things can't be fixed.  And, some things can't be fixed by ME alone!!  I am still not the same as before and I don't know that I ever will be.   It was horrendous and I was used up and thrown away when I had to say "no" at increasingly crucial times.   To this day, I still have a short temper and short attention span at times.  Can't concentrate, etc.   Low energy.  I wish others well, but I don't feel like I can truly be available to another person as long as I live.  I'm hoping to feel better once I get my own life in order - seems like it's taking me more than twice as long to get myself together compared to how long it took for my life to fall apart due to the caregiving.  So many things on this forum are things I could have written myself and it's been quite helpful to me in moving on.

Dorker and MidKid,

You both have been through the mill! It’s so hard.

Dorker, I went through those same emotions of wanting a life! The word gut wrenching sums it up perfectly!

Mid,

I identify with you because of not being able to please my mom. I felt like I could have stood on my head, done a trillion backflips and other amazing stunts and she would not have noticed, but let me do one little thing wrong or not to her liking and all h*ll broke loose!

Yep, hard to please. She has been a perfectionist as long as I can remember!

I swear I remember as a young child being criticized if I colored outside of the lines! LOL, I used to hide my coloring books from her.

I don't 'do' for my 90 yo mother any more.

It took me YEARS to realize that when she'd complain about something, I'd jump to it and try to make it all be OK.

And guess what? I NEVER did!! She'd actually complain the other sibs what a PITA I was, how I was too involved and too fussy and too bossy and..well, you get it. Yet I kept trying!

Nobody cleans her small apartment. It's a mess, but sort of an organized mess. I wasted a tremendous amount of time and energy trying to 'help' her and got blasted from all sides for throwing out a small rubber frog--or for breaking a tchotchke that came from the Dollar Store and was rotted from the sun. Tried to glue it and it was just so rotted--when I found out where she GOT it, I said "Mother, I'll find you another one". Looked, half heartedly, but couldn't find this exact thing. It was actually tucked in the window sill, behind the birdcage and completely covered in bird poop--but you'd think I'd broken her Limoges China.

After the final 'cleaning' 3 years ago(?) I told YB that I just couldn't do for her. In fairness, he'd never asked me to do anything for her. He said his youngest daughter would take over the 'housecleaning' and she did, sort of, in a very lackadaisical way.

I don't take mother to drs, I don't clean for her, I don't really do ANYTHING for her, as she doesn't want ME, she wants the sibs who never call or visit. I told her I had cancer last year and her response was "Oh, Daddy will be so glad to see you, you were always his favorite!" And then she proceeded to ignore me for the next 8+ months.

This is something that hurts my heart when I bother to think of it. I am not the daughter she'd have liked, nothing I can do at this point. I haven't spoken to her for 6 months and no plans to do so for the next 6.

Therapy has been very helpful in creating and maintaining boundaries--but I still struggle. I think a lot of us do, in our heart of hearts.

You termed it so aptly. It can leave you emotionally bankrupt.

Obviously that isn't the experience of everyone that jumps into those waters. I don't really know what makes the difference. Maybe it's the makeup of the individual doing the c'giving as well as the person being cared for and it just gels, all of it.

My story on it all, well documented here, in another thread.

I was never the hands-on, living with me, c'giver. Hats off to those who do so.

But I knew it was too much when there was resistance on the part of the LO as to any "others" assisting and yet .. the need so great that it then negated almost any ability on my part, to have any resemblance of what I call a "life" of my own, to enjoy.

For me, that did it.

I had to exit.

AC board here was enormously helpful in getting me to see it/own it, that I get to release from it all, ... that it's not mine to own .. and that the LO's needs, don't get to command my every waking breath and action for each day. Doesn't have to be that way.

And honestly, I don't know which was harder, at least in my case, .. the sticking into the trenches of c'giving .. or turning to walk away from it, and the emotional anguish and (pushback from other LO's who thought that a wrong approach).

The latter being almost, in my estimate, as gut wrenching a the former, if not as gut wrenching, at least in my experience.

Some posts break my heart. Some are bizarre. Some remind me of when I was struggling with my mom, even before mom lived with me and I was taking care of my mom, dad and brother.

It became too much for me, both emotionally and physically.

I knew that I could no longer do it. I let go. It takes strength to let go.

Sometimes we hold on thinking that we are doing the right thing. Obviously for some of us, we aren’t.

I would never want to hurt anyone who successfully was able to be a caregiver in their home. Disregard this post if that is you. I am happy that it worked out but for many of us it is too much of a struggle.

Please share what made you realize it was just too much and you could no longer do it.

Share how you felt after you let go of the enormous responsibility of caregiving.

Share how this forum or any others such as a therapist helped you.

Thanks to all caregivers that have stayed behind to help others. It’s a gift from your heart and I know it’s appreciated.

I certainly needed each one of you during my struggle when I was stuck for far too long.

I feel whole again. Caregiving robs us of so much when we give too much. We become bankrupt!