Identity beyond caregiving?

My identity had been lost in 2012 when my mother with mental problems could no longer care for herself and I lost my permanent job due to the economy. With her medical problems and constantly suffering falls at home until April 2013, my professional siblings helped out remotely to have Mom relocated from CA to a good nursing home in OR where she passed at age 95 in 2014. So I was finally able to focus on restructuring a career and fun, then landed a good permanent job by late 2015.

I have pretty strong (healthy?) boundaries about this. My mother with dementia would love for me to make her caregiving my entire focus. I refuse. As her only child, I make sure she has the best care possible, and I visit her frequently. But then I walk out the door and continue to live my life fully. I am available to make decisions about her care when needed, but I will not be the one providing the care. I certainly don't expect my child to be a hands-on caregiver for me in my old age.

I was trying how to go about how to find my identity when hubby had stroke. Oops, guess my identity was going to be caregiver and make the best of it. Now 10 yrs later, still a full time caregiver, but for the health of my soul, trying to separate a portion of myself from caregiver and to develop an identity that gives me life.

I think the problem in all cultures and religions is we are to "honor" our parents. And thats OK when the parent deserves it. But on this forum a lot of Caregivers have had abuse in their childhoods. They look at Caregiving as a way to finally bond with their parent. Show them they are loved and hope their efforts are appreciated and receive love back. This rarely happens.

I don't think the Bible says anything about children being honored. Really doesn't say much about raising children at all. For Caregiving to work, honor has to go both ways. We hopefully raise our kids to be independent. So at 18 they can be pushed out of the nest per se. A time for them to live their lives without our intrusion. To experience life. This becomes a time for us to grow too. We are now all adults. And we as parents need to treat our children as such. We need to honor them too.

Honoring is not one sided. You honor your parents by being there when they need help. They honor us by being cooperative. It doesn't work without compromise. Besides the child realizing limitations in the parent, the parent has to realize the limitations of the child and honor that. A child that has a home, husband, children and a job cannot give a parent 24/7 care. The parent has to be as independent as possible. When that no longer can happen, they need to except that life is going to change. They can no longer be on their own and the child cannot be their everything.

We can honor our parents without losing ourselves. We need to realize our limitations. We need to think before we get into a situation we may not be able to get out of. We hear a lot on this forum "we had to make a quick decision". We need to understand our rights. There was a woman who was just a roommate to the other woman who was in the hospital. The hospital called her to say time to pick up your roommate. Never thinking to ask, what will she need when she gets home. If she had known that the roommate had told discharge this woman could care for her, she may never had picked her up. Lots of people do not know, you pick a LO up or a friend you are now responsible for them.

As said, we can lose ourselves in raising children. Lose ourselves trying to be everything to other people. Forgetting that we have needs too. Why is it so hard to tell a parent "no Mom/Dad not today, need a day to myself" We need to give ourselves permission to have a life away from Caregiving and we don't. Ex: you want to hire an aide a few hours a week so you can have some time to yourself. Moms against it. She hollers, she cries and we give in. She should be honoring you and allowing u some respite. She should understand u need some downtime. If she doesn't, you take it anyway. No one should have that much control over ur life. So, IMO, we lose ourselves because we allow it. Because we are taught "Honor ur Father and Mother".

Well, I currently identify as a "former caregiver" and not much else because I developed an acute medical condition as direct result of working part time for this lady, and it was so painful that I had to quit. For over two months now, I've been so ill that I've been unable to get back to work at my main job, which was a small business. I deeply regret working for her, and if I'd known she would destroy my health one day at a time, I would never have worked for her.

You know what's weird, I didn't even identify as a caregiver the entire time I worked for her. I saw myself only as her chauffeur and personal assistant. It wasn't until I went to the urgent care center with acute illness that I realized how burnt out I was. When I read the doctor's chart notes about our visit, I was stunned to realize I had been her caregiver all along because that's what he called me, a "49-year-old caregiver."

When I was still working for her, did I feel like it was my primary identity or main source of self-worth? Absolutely not. But the job had some grave physical and emotional obligations attached to it, so it loomed large in my mind as a big source of anxiety.

Every day spent in her company was a day where I was 100% responsible for keeping another human being alive. I did not enjoy the burden of that feeling.

Every day spent apart from her was a day where I felt guilty, knowing that she secretly resented me for having a life of my own.

I will never work for her again, but I still think about her daily because once a person turns to you with the expectation that you help keep them alive, there's a creepy psychological bond that forms, and it's not that easy to get rid of.

Compared to anything else you might do for work or for recreation, keeping somebody alive is so important that everything else seems to pale in comparison. Hence the guilt and the feeling of obligation.

Mostly it comes to acceptance, understand our limits, ability to unwind and maintaining our lives, friendships hobbies, any interest.
Accepting is biggest thing for me, because I know with progressive disease there are limits and potential of only getting worse, so making plan A & B for those is crucial and provides stability for me. No matter what happens, I know I need to remain myself.

A lot of wisdom here!

Unfortunately, this is why 40% of caregivers die before the person they are caring for does.

We weren't created to live someone else's life and suppress our needs, feelings, desires and hopes.

I think caregivers need to learn to not jump every time their loved one hollers, how to say no and how to create and enforce boundaries. This would change the statistics and people would be less unhappy moving into care because they know the world doesn't spin just to satisfy them.

We don't let children think they are the only ones that matter, I can't imagine why we would let an elder think they are the only one that matters.

Balance and boundaries.

Balance is the secret to success.

What a blessing to have met this wise woman.

When a daughter or son is a full time caregiver at home, to a parent with dementia or AD, that role BECOMES their entire life. The parent winds up being SO much work, that the caregiver has no life of her own. She's up all night with mom, worried that she's wandering, walking the hallways, getting into mischief, and doesn't want to sleep at night anymore. During the day, she's fixating on bathroom issues or any number of things where she's asking the caregiver the same question a million times in a row. It's relentless. And all consuming, the time that's taken up with the dementia ridden parent and their 24/7 needs. Caregivers oftentimes wind up with either compassion fatigue, burnout or BOTH, needing medication to just function on a daily basis. Guilt eats them alive and prevents them from functioning in any capacity anymore b/c they feel like they 'should be doing more'. They've 'promised' their parent they would 'never put them in a home' and here they are, years later, worn out to a frazzle and STILL waiting on the parent hand & foot, suffering and sacrificing THEIR entire life for the sake of their parent with dementia. Many times, the daughter or son is retired and a senior HERSELF, too, wanting to wind down a bit yet stuck in a back breaking role that has no end in sight to it.

So, yes, to satisfy your curiosity, many caregivers DO lose themselves, their identity, their lives, oftentimes their marriages, their jobs, their incomes, all in an effort to be the best caregiver to the parent they feel obligated to care for until they die.

Which to me is not the same as a mom who decides to take some years off and raise her child, who blossoms into a productive member of society, and one who gives as much as she takes from her mother. Vs. an elder who continues to go downhill until death, always taking more than they give, and leaving their caregiver an empty husk as a result. Not always, but many, many times.

Just stick around AgingCare for a while and read the posts. You'll see what I mean for yourself, in short order. You've already seen it on FB and other support groups b/c in reality, it's unavoidable. There are very few full time caregivers to a parent with dementia (if any) who have managed to carve out a full, happy life of their OWN as well as being the chief cook and bottlewasher for their parent. They're normally way too wiped out at the end of a long, harrowing day to want to do anything else but lie down and SLEEP for a few blessed hours in a row.

If you don't want to make caregiving your entire life's purpose, and your loved one gets bad enough with their dementia, then you should probably look into Memory Care Assisted Living or Skilled Nursing for them. And even then, you'll wind up devoting a good deal of time, effort, and emotional energy to your loved one living outside of your home. It's just the way it goes with elder care. But once they're placed, at least your home will be your sanctuary once more where you CAN sleep and function without being asked the same questions repeatedly, or cooking/cleaning up bathroom blowouts, etc. That's one of the upsides of placement vs. home care.

But it's still all hard, that's for sure. Best of luck not losing your identity as a caregiver.

My experience is with one primary caregiver, my 14 year younger sister, also youngest of four sisters. She never left our parents home, due to her own mid 20’s crisis, it was never really discussed, as she slowly, but surely became our parents “everything”, cause they had health issues, that grew into dementia as well, both of them. Mom is now immobile, incontinent, and does very, very little for herself. She has a bell, in fact. They are the strongest threesome ever, codependent as it gets, and she has been refusing help for the past four years. They enabled her, now it is her job to do the same, letting them do as they please, cause they let her do as she pleased, and no one else, gets a say about anything, except their caregiver.

Our parents put her in full control. I’m oldest and we have two sisters in between us, and it amazes me it took so long for us to fall apart. We did it in silence, us two oldest, traumatized by everything being completely out of our control, and the two youngest, having been allowed to behave however they wanted in life, by our parents, were never put in their place, by us older sisters, because we didn’t want the door to our mom and dad, closed on us. It was still closed.

It was a mistake to give grace over and over again, for sisters who didn’t deserve it. We have a divide in our family between the two oldest, who were taught and expected to fish for themselves, and the youngest two, who were enabled, spoiled and fished for, and it’s made for a tough time for us oldest.

Before I write anymore of my sad story, this is the first year our family became broken, finally, very peacefully because I refuse to fight, refuse to put anyone in their place, know it would change nothing anyways….so I’m giving up seeing my mom and dad in person. Last seen May 22, and I hand delivered homemade meals to them, for three years. They live ten minutes away, and now I just send photos, videos and emails, that I hope my sister shares with them, because she has not answered my emails or texts, in four months. No reason. That she has shared. She did say they love their digital frame, and please send photos, and videos, it brings them precious joy. I read that as “it is easier to see your media, than for us to see you”, and maybe it is. I have a huge camera roll. Truthfully. So I am still doing what she asks.

Do I feel some caregivers become only that, and it takes over their identity? I have experienced it, and combined with PTSD, from covid protection and isolation of our parents, our sister has been very much so affected. Serenity prayer. My parents cannot use a phone, do not drive and drink whatever kool aid my sister gives them. I am only able to get to them, if I talk to her first, and she’s gone silent.

My salvation, as a 38 year sober gal, sane thru 12 steps, is that my “God”, knows how hard I tried. I know how hard I tried, and I pray my sister has a moment of clarity, and stops icing my number two sister, and me, out.

Does this happen in all families? No, but when a primary caregiver complains “no one will help”, sometimes there is a reason, and it has to do with the Primary, who wants full control, cause she can take it. My story, and I’m sorry if this was too much. I am thankful for this website, wonderful real, truth telling group of honest folks, who have been there. I am no longer able to live in guilt, “GRIEF not guilt”, cause I finally get, I did nothing wrong. My folks just aged badly, and gave all their secrets, to their youngest, who I hope doesn’t go first. I worry about her, love her dearly, but will be focusing on my, our life, going forward, cause we’re 63 and 67, and it is our turn to have the awesome 60’s our parents had. They did not take care of their parents at all. They did not take care of themselves. We are, scared not to. All of this hurts more than I can express, cause we did ok for a long time. I wish you all the best, seriously, it is hard. Odaat. ♥️

It's not unlike being a stay-at-home mom like I was. It does engulf your identity, which isn't a good thing ideally, but some of us make that sacrifice because we've always made that sacrifice since the first baby arrived. Moving on to caregiving the parents is just a natural progression.

I wish I'd developed more interests of my own over the years because my kids and my parents are now gone, and I'm kind of "unemployed" with nothing to fall back on.

I came to AC forum originally seeking advice on a few questions regarding my dad, now deceased. I’m no longer a caregiver for an aging parent, but what I do have is an adult son with a complex health situation and an hypoxic brain injury. Through his life I’ve met many parents in similar kinds of situations who make their child into their complete world. They know few other topics, many have lost their marriages and other relationships, and often have a sense of martyrdom. I had the good fortune of having a neighbor when my son was young, whose young son had a complex multi handicapping condition. She said the wisest thing one day, that her son “is a welcome part of their family and their lives, but never their whole lives, but simply a part” I’ve tried hard to emulate her words. It seems far too many caregivers get caught up in making the caregiving role their lives, instead of a welcome part. I’d hope we could all not resent the role, but not be consumed by it either