I’m just curious. Does it seem like a lot of caregivers begin to self identify as the most important thing about them is just the caregiver of their LO, usually with AD or dementia? I have unfollowed several FB and other support groups because I feel like all of the people have no identity left other than caregiver and they see nothing, even self care, as important as sacrificing everything for that cause. I don’t want to become that. I love my mom and will do whatever I can to keep her safe, healthy and happy. But I’m not going to make it my entire life’s purpose. I guess this isn’t a question. But curious for feedback or perspective.
Although there’s often only 1 caregiver, it should be a team
effort, when it can be.
This is what was missing from my potential caregiving situations. I have a sister, who while she was receiving the gift of living 4 doors from our mother, after not being involved in family affairs, for many decades, was angered that helping mom wasn’t a team effort. She wasn’t aware and wouldn’t have cared anyway, that mom was becoming abusive towards me and that isn’t allowed. But, I suspect that she felt there should purely be domino effect, meaning mom works and dies, I work and die and she steps in at the 11th hour to inherit all. Didn’t quite work out for her, so she’s enraged. Let mom live in horrific conditions, while she just had food delivered to the door.
The other thing is, it’s going to be hard for people to regain their footing after years of caring for someone. You’ll be older and taken out of circulation. You may have your own health issues by then. People forget what they wanted and who they were, even when they’re holding down a really good job.
What you said here was devastating and completely true:
"Often, when you become a caregiver or are even merely seen as one, even when you are not, it can quickly spiral out of control. You can become designated, which means others disappear, while you and your resources, emotional, psychological, even financial, you name it, just evaporate."
My health has taken a turn for the worse because I let someone set her sights on me as a part-time caregiver. She was not a family member, just a lady who was desperate to round up multiple friends and acquaintances to care for her several days a week because she had no family members within easy driving distance. I was designated as the Wednesday person.
It was not a role I sought out. I was guilted into saying yes. What a fool I was.
She treated me well and she paid me for my time, but you could tell she deeply resented having to rely on non-family members like me to help her. She complained constantly about her grandchildren and their spouses for being lazy ingrates (including the one granddaughter who helps with caregiving when she is able). She was even angry at her best friend for dying twenty years ago, because she had secretly designated that person to be one of her caregivers in the years to come.
Her rants about people not filling their designated roles in her life were endless. Even when her Mexican gardener would visit his extended family in Mexico, she would get bent out of shape because she felt personally abandoned. Everything was all about her.
She used to scream these rants directly into my ear as I drove her in my car. She would scream about it in her living room too, but only after asking me to close the front door so that the Ring doorbell camera would not capture the audio, which was being monitored by her granddaughter.
I always treated her sympathetically because she was obviously depressed, but her tirades made me increasingly uncomfortable because I knew that if I ever had to stop being the designated Wednesday caregiver, my name would be added to her ever-growing list of people she resents.
The end result of all her close-range screaming was hearing damage for me, so I finally had to quit. What I find incredibly hurtful is that her granddaughter has expressed zero sympathy for my hearing loss, probably because she hates me for no longer being the Wednesday helper and it's one more day of the week that she will have to cover herself.
My big takeaway from all of this is that an emotionally needy elderly person will divide the world into only two types of people: "good" people who will fill the designated caregiving role that they have in mind for you, and "bad" people who don't want to get involved. And even if you're one of the "good" ones, you'll still be seen as a selfish traitor if you ever have to quit.
That's why you may as well cultivate and treasure your identity outside of caregiving, both during your stint and afterward. The identity you choose for yourself will be far more real than the distorted one that others want to place upon your shoulders.
Where is the sense of self-identity in working to make up for the actions and behaviors of a cruel parent toward a kind one? It seemed very retrograde to me, a commitment to remain an enslaved child to an elder parent who was wronged and a self-denial that rang of a too-deep sacrifice of self. Reading that post made me want to shake the OP awake to the possibilities of his/her own life.
What I found dismaying in the OP on that one was a strong sense of willing servitude and a dedication to righting a wrong done to one parent by a deceased parent. This involved a refusal to ever place the surviving parent in a SNF, basically no matter what. To me, this was all based in love and pain too jumbled to sort out and resulting in a fairly young person enslaving him/her self to a life of caregiving. Too sad.
For me, because I worked in health care from my teens and ended my Nursing career in Hospice (which I loved), I feel I've done my part, been in the trenches. I still identify myself as an RN in terms of profession and life skills, but it's not the totality of who I am, not by a long shot.
Perhaps for some people, they have never been able to fulfill an underlying tendency toward altruism and the role of being a caregiver provides them with another view of themselves, an opportunity to express their sense of caring that was not any aspect of their professional identity or even their parenthood. Maybe a few years of helping an elder parent remain at home is truly healthy, but becoming enslaved to it, imo, is not.
Perhaps others are simply co-dependent, as are many in the Nursing field; I find this to be unhealthy. We cannot throw away our own identity over the hands dealt to our loved ones or, in many situations, as a result of their own poor choices and demands placed on children that are misplaced.
FYB describes a situation that I find horrendous and it's such a shame that anyone would become entrapped in caring for anyone so abusive and in a family system so dysfunctional. I hope that most among us would know to get out with the first signs of abuse and simply report the situation.
I dodged a bullet by not bringing my Mom in to live with us, estate matters simply did not allow for anything but a SNF. By the time she'd been in care for a few months, it was very clear that my family and home life would have been destroyed by having her with us, not to mention the wear and tear on me personally.
In reading through many posts in the forum, I wish that more people were willing to wave the white flag and simply admit that a SNF is best for all. There are exceptions, of course, and no one should be placed in substandard care facilities. But I find it so very sad that too many give their lives and their health to years of caregiving, often in situations that are heartbreakingly desperate and unhealthy.
Perhaps we could all use some co-dependency counseling?
I'd say you have to have extremely strong boundaries to balance your life. Keep non-caregivers in your life and DO non-caregiving activities to balance it. While I was in the caregiving business (was home manager, staff of 6 including me) it hit me one day - what did I/we used to do in the office setting to make the job more enjoyable? I started incorporating things like baked goodies every Friday; we saved recyclables and took ourselves out to dinner; always having candy snacks available; spending time at each shift change talking to those going & coming to show I cared about THEM; we sometimes socialized outside of work; we celebrated birthdays, we played pranks on each other; and I bought flowers for whomever I was short with that day because I could be an a** occasionally. We didn't have any staff turn over for 1-1/2 years, right up to the day they moved into a facility.
I’m with you and it was the choice I made, to continue my livelihood and career, than to suffer at the abuse of my narcissistic mother. I will not care for a self-destructive person, who wishes to take me with them.
I have now been to her home and a good friend is helping me to clear it. As a result, at least for me, this has made me clear on the fact that my sister, who was tasked with providing her care, by being allowed to live in a home just doors away, wasn’t simply enraged with my absence, despite her being gone for decades, but enraged with our mother. It is absolute hoard and squalor, with wildlife having internal access. All of the complaining of mom having neuropathy, never ended up in having her diabetes managed, as far as I could see and only having the symptoms managed. Other than that, my sister simply had food delivered, for mom to drag in, for 4 years.
Each side has their story and perspective. But, sadly, even a narcissistic parent can get caught in the middle, even while they’re trying yo drag their children under with them.
The lady I worked for wasn't abusive, and her family probably wasn't dysfunctional. The way I see it, her anger and defensiveness came from the fact that she had been the primary caregiver for not one but FOUR family members who died.
Caregiving had been a huge part of her identity, and she wore it as a badge of honor. Now that she was old enough to need some caregiving herself, she was frustrated because there was not a single surviving family member who was willing to martyr themselves for her, seven days a week, the way she had martyred herself for the four who had died.
I felt very bad for her, so when she kept turning to me for help, I felt unable to say no, even though I could have.
I was definitely being codependent, and I didn't even know it right away.
Great to see you as well and I trust that your life is reaching a livable balance.
I read that about the food delivery in another comment and I had no grasp, until this, of how very deeply dysfunctional your NPD sib was in her 'caregiver' role. I hope that everything is getting sorted and very glad to know that your friend is helping out, giving you support and a sounding board for some of this. A lot to process, no doubt.
Glad to touch base again and hope to see you around! Hey, did you check out the stem cell option yet? x
I have a lot experience with caregiving and have worked with a lot of families over the years. I find that what really bothers caregivers (be it family or hired) is not the care recipient's health conditions or what they have to do for them physically. Having to change a grown adult's diaper, give them a bath, feed them, clean up after them is disgusting and gross. I'll call a spade a spade here. We all know it. Getting some homecare assistance helps with that problem.
What really makes caregiving miserable is the abuse. The negativity, the blatant disrespect and disregard the caregiver gets put on the receiving end of. The asinine stubbornness, the abusive neediness, and the ridiculous games the care recipients will often play just for the sake of complicating simple things to cause trouble. The ingrate, entitled behavior of the senior brat who resents needing care so they bully their caregivers. This is what makes caregiving work miserable and mentally draining.
I've had clients that were totally invalid yet never complained. Never behaved abusively to their caregivers. No disrespect, nastiness, or negativity. A caregiver will go the extra mile for these clients to make them happy. Me, I'd go the extra five miles to. If I caught it from a client like this, I knew it was because there was something wrong and not because being an abusive a**hole is simply who they are.
I don't play games. I never had a problem dropping an abusive client from my service.
I don't have a problem dropping my abusive mother from my service after the new year in the spring.
If I have a night off I usually make up by going the extra mile to cook her a favourite meal during the day and end up going out smelling of cooking, as I run out of time to wash hair because just as I’m leaving she needs the commode / mobile phone needs texts deleting. So I’m always late for my dates because there’s always a hold up and I don’t leave washing up to the carers who don’t wash the dishes properly. It’s still stress and worry. I’m never free from mom to have a life but I do try. I’m so so tired out from it I feel it’s not worth going out or booking another holiday.