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.
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.
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. ♥️
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.
What a blessing to have met this wise woman.
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.
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.
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.
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".
To answer your question about the caregiver forum, someone once told me that the hardest job ever is caregiving. I didn't understand. Now I do. You need ALL the support you can get. And it never leaves you. It becomes a huge part of you. Maybe not unlike war veterans. Or like women and pregnancies. You go through so much that no one else understands, it is soul feeding to talk with those that do
Lastly, if it does define you, that means you were one of the brave who took it on when you thought you couldn't, the strong who made it through when you thought you couldn't, and the ones who gave every bit of love and caring from there being, when they didn't think they had it in them. And it forever deeply changed them.
Life after caregiving. I thought for sure I would go back to finance, but did further caregiving for awhile, when life took an amazing turn. I am now living my childhood dream of doing art for a living. Bless you in your journey.
Caregiving is not a one size fits all. It's not a cookie-cutter approach. If you have had two loving parents like I did, it's hard enough with the love going both ways both it's more manageable because the love is there.
On the other hand, there is nothing like America. If you look at the old John Wayne movies I don't recall any Urgent Care walk-in centers or physical therapists or assisted livings.
Basically a bottle of whiskey and Grandma is sitting in a chair with an afghan and family around her.
I attended a conference years ago and a lady from Argentina said something I actually wrote down in my notebook, "the U.S. lives for the self" other countries
are dependent upon one another and do things for the greater good.
Individualism is good to a certain point but sometimes you may have to serve someone who can't reciprocate. Keep in mind there are all kinds of services today that did not exist years ago.
Depending upon what region of the country you live in some of us may be in a better position or depending upon how involved you are in the neighborhood, Church or if you have some roots planted.
No one person can do this alone. You need to build a team, a network.
This past Thanksgiving big brother did not phone for well wishes...I phoned him earlier in the day. Lots of "free" babysitting has been provided by "our" mother over the years--rides, food, etc. I call it unpaid employment provided by Mom.
Rather than fester, I bought poinsettias for all of the neighbors who help us, ask if I need anything, the swim ladies who pick up prescriptions for us and our wonderful neighbors who knock on our door, "do you need anything"?
This year at Christmastime, big brother/his family will NOT be receiving a gourmet food basket as in past years because I thought it was to my/Mom's benefit to do for the one's who do for us.
My neighbor upstairs who brings me the morning newspaper on a daily basis gets a can of deicer for his windshield for his kind deeds.
The Eucharistic Minister(s) who come faithfully every Sunday in all kinds of weather will get a poinsettia.
By the way they were $1.49 for a 4-inch pot on Black Friday at the Lowe's Hardware store. I bought 2-8 pack trays and a box of Christmas cards.
If you feel that you have been consumed by your caregiving role because of the length of time, I would start adding people and/or activities to your life. Now I know every situation is different, but you want to still be standing when all of this is said and done. Save a piece of pie for yourself.
In all honesty, I too, think about what you wrote. I say to myself suppose this goes on for another 10 years...will my life be doctor's appointments, drugstore drive-thru windows and the weekly supermarket visit?
After this is said and done I don't want to be the girl in the supermarket saying to people, "do you want to see a picture of my cat Zoe"? Now, I don't even have a cat, I am not pet friendly but you see what I am saying.
You're wise and you are very honest in claiming what you don't want to happen but only you can make any changes.
Just some suggestions that came to mind--library card, online remote job, hair color, outsource anything that you can have delivered to save time, Dollar Store for cleaning products and retail therapy, local Y and join a swim group, have the Church people visit weekly, study a language, buy an instrument and pray everyday.
Know what's going on in the world--scan the morning newspapers, talk to your neighbors, call people on a Sunday night each week. Let them know you are still alive.
Important--save some $$$, your finances must be kept in order, your credit score, an emergency fund, a separate checking account, retirement. If it means cutting out gifts to stay afloat put the gas mask on first. Don't "assume" anything Mom said she would leave me the house. Get everything in writing.
In my situation, there is no big estate. I just love my mother!
Now, you can stop reading at this point. Because I’ve experienced that people become upset, when you bring race into it. So, if this upsets you, stop here.
I have found what it’s like to be considered a self-sacrificial caregiver — even when I’m not a caregiver. I suppose that, when you are female, overweight, seemingly-kind and of color, that you become the go-to person for caregiving, even when you’re a corporate professional, pursuing your career.
During my life, people have assumed I’m a teacher of little children, when I actually wouldn’t know what to do, because I belong to the final generation of my family and there are no children. I’ve known how to fix cars and computers. But, I have no experience with children.
But, assumption has also transferred to neighbors in my building. People who feel they decide that whatever my “fantasy life” is of going to work for big name corporations, that I’d be more comfortable and better suited, working for them, for free.
It is obviously not simply a racial stereotype, but one for women of any color. It’s also not simply an assumption, but I have been pressured and strong armed into giving up my life, life pursuits and career, by my narcissistic mother, a woman a few doors away (including her 3 children who are about my age (50s)), and a neighbor who lives just beneath me. I’ve been pressured to do tasks, but a newer car, care for my neighbor’s dog, and buy a newer car to, I assume, handle all of the tasks my downstairs neighbor intended for me to handle and so I could take her places, at my own expense, during any of my free time she wants and she is only 6 years my senior. She became perplexed, befuddled and angry, when I told her no 2 years ago and is still in hopes that I will “come to my senses” and provide her with free care. I assume that she feels it is a grooming process, where she’d start me off with something small, soon to include free cooking, cleaning, laundry, travel, pet care and health care. She has had both of her knees replaced, back issues and says she believes she is coming down with MS, but I’m unsure if I believe the MS part. For her, the lockdown, where I was working from home, was to benefit her. When she began asking these things, was just weeks after the lockdown began so, we weren’t even certain what dangers COVID held so, apparently, she felt she was making decisions for me, as to whether I needed to be safe or not.
i say all of this to say that, I understand the loss of identity, because one can lose their identity, simply based upon what others want and how they view them. The regimen of actual caregiving is exponential to that. You have no actual time. In addition to that, no one else sees that, nor has empathy for you. It becomes societal role play, where those who become caregivers, while it is important and needed work, become an appendage to those they are caring for. I’ve heard that many caregivers die before the person they are caring for. In the many situations where we care for our parents, once we’re in our 50s, as they are likely in their 70s or older, it may become an early demise for us. So, loss of identity? We have actual loss of life, sometimes, caring for people who decided they didn’t want long term care instead…
Care taking can also easily become overwhelming and burdensome when the care taker feels forced into the situation and has no support.
I know exactly the people you're talking about. The ones who think they're angels or better than everyone else because they allowed the caregiving process to become their whole life and identity. I will speak honestly here and tell you I cannot stomach that lot of people. They make me sick. If someone is willing to sacrifice their own health, family, friends, and life in order to become a slave to the demands and care needs of one person, they are very selfish indeed. They throw away their marriages, children, jobs, and friends because they choose the self-imposed slavery caregiving so easily becomes over all these other things.
These people are martyrs, and I hate martyrs.
Just the other day my mother was lying about me to one of her elderly friends on phone. She's been doing this since I was a little kid so no surprise. I'm spending the Christmas holiday in NY with my husband, son and some of my in-laws. We're Jewish. My mother and family are not. It's Chinese food and movies for us. Her friend tried to guilt-trip me about not doing the holiday for my mother then started with the 'don't you love your mother?'
I spoke honestly to her and said I thought she should really stop running her mouth because she doesn't know what she's talking about. That yes, I do love my mother and am the only one of her children who ever did a d*mn thing for her. I love myself, my man, and my kid more though. They come before her. Long before.
I remember back when I was a kid this friend of my mother's. Her life was miserable. Her MIL who was a nasty piece work got moved in by her son when his father (the FIL) died. She "supposedly" had dementia but I don't think she did. She hated everyone but had a real sweet tooth for her DIL (my mom's friend) and was just a miserable, negative a**hole. Her DIL let herself become a caregiving martyr years and years. She hated her MIL and with good reason too, yet became a slave to her. That's not love. I don't know what to call that, but it's not love. People who have lived these lives of self-imposed yet totally unnecessary misery think everyone should too. This is what happens to people who allow caregiving to become slavery. It ruins their lives and sometimes they never get over it. It's their choice though.
I'm happy to hear that you are aware of what can happen and will not let it happen to you. Never let caregiving become your whole life.
I was a son taking care of Mom. She was an active person all her life. Involved in her career (until the age of 85), the community, and always supportive of me and my siblings.
I never dreamed I would take on the role of caregiver. I hoped Mom would live a long life without any medical issues, and when the time came, she would just pass on (I know, not realistic). After she had hip surgery, it became clear she would need assistance if she were to remain in the home she and my late Dad purchased years ago. So my journey as a caregiver began.
During the time I took care of her, we developed a daily schedule that made things much easier. Was it perfect, no. Were there arguements, yes. Did I get frustrated, you bet. Not at her, but because I could not control what was happening to her. She never complained, even when I would clean her behind three times a day to try to prevent pressure ulcers. My job was to keep her clean, well-fed, and content.
I was truly at a loss when she passed at age 93 in January. While many my age are retiring, I was now asking "What do I do next?" Through luck, I was able to get a job in a field that I worked in years ago. Unfortunately, it was not long term, so I am looking for work again.
Do I identify as just a caregiver? No, but I do include it as part of my professional experience. There are special skills required for that role, skills that can be transferred to other situations.
As I note in my profile, being a caregiver is the most exhausting job ever (mentally, physically, and emotionally). I sometimes question how I handled certain situations (would have, could have, should have) with my Mom, but in the end, I know I tried my best.
I have been taking care of my mom (dementia, COPD, blindness) for 10+ years at my house and it's an honor that I would do again without question. I work a full time job also and have a care-giver during the day so it's not full-time care-giving (other than all evenings, nights and weekends). Mom is a sweet and cooperative person so I know I have an easier situation than some others.
The one thing I've realized, especially during the holidays, is how much I have lost of me and my future. No husband, no boyfriend, only a few close friends who understand that my time is not my own and work me into their lives. Most of my friends have moved on and are living life to their fullest. I still take care of myself, do outdoor things and try to stay active, although I've put a normal exercise routine on the shelf because I'm so tired.
I worry that when Mom passes on, I will not have a purpose so I understand your post completely. For me, work is just a paycheck and is by no means gratifying in the sense of bringing me joy. I have great neighbors and people who care about me (and Mom) and I know they will help me get through after Mom passes on. I just wonder what life will look like for me then. You are right to be concerned about how much you sacrifice. I have 2 siblings that don't help at all and if I had it to do over, I would have set better boundaries and required them to do more, to spend more time with mom, to give me 'breaks' so I could go on vacations and spend time with friends. They are consumed with themselves and don't have it to give, at least that is what I tell myself.
I hope this post doesn't add to the reason you un-followed some FB support groups. I just wanted to tell you that I understand, I agree with you, and I know you are doing the things that I should have done early on: protect you.
I just read the post by "BurntCaregiver" about people like me making her sick and being very selfish. Interesting perspective.
The issue is caregiving is 24/7, 365. That’s doesn’t leave much “you time”! So it becomes a question of having help, and sadly, lots don’t have much help, if any. Therefore “you time” gets put on the back burner.
The Ideal is to have at least some time for yourself. But it’s so difficult. Enter, support groups. First it’s good to know you aren’t the only one experiencing this. Second, you can get some pretty good practical advice and ideas from other people and how they handle things.
Rather than quitting support groups, perhaps make a suggestion that a portion of the mtg is devoted to improving the caregivers life? I mean knowing you aren’t alone and getting practical advice DOES improve the caregivers life, a bit doesn’t it? Again, it’s the small things.
Or you may find a different group helpful, such as a grief support group. I should think they handle more of “putting your life back together” issues, as well as grieving, which you are doing also.
Find resources in your area where someone care help with caregiving, so you have a bit of time for yourself. There are organizations and church groups that may have volunteers to come sit with your loved one, while you do something else. Or while you just rest. There are state resources as well.
Even at a full time job, you get vacation and sick days. Caregiving is like 3 full time jobs! Burnout is a real thing and if you don’t have some ways (even little ones) to keep “yourself”, you will be lost after your caregiving stops. I guess it’s caregivers 5% for yourself and and 95% for your loved one. The percent changes if you have a bit of help.
Read books you like, listen to music you like, watch a TV show you like, listen to a podcast. Keep doing your hobby (even a condensed version), keep speaking friends, exercise - there’s lots of free youtube showing isometrics and other in home exercises with no equipment. Put on a facial mask. Spray your favorite perfume or a dab of lipstick. Wash your face! Brush your teeth! Comb your hair! A little self love is better than none. I don’t know you, so I’m not sure what you like that can be done easily, but you get the idea. It’s about small doses of self love and taking time to stay connected with the world, even in little bits.
Good luck to us all!
What happens to many people is that they never put their self first for a multitude of reasons (lack of awareness of need, low-self esteem, family history/triggers, being told (or internalize that) they are 'selfish,' not aware of self care (needs).
And, most never set boundaries due to lack of awareness of the need to do so (not a criticism, is a fact). When caring for another, a loved one, they are set up on an 'immediate' steep learning curve (valuing one's self and feeling okay / good about it, dealing with guilt, understanding it is absolutely necessary.)
What I hear in your statement here is anger and perhaps some guilt.
What are you looking for in your statement to us?
There comes a time (or perhaps not) when a family care provider realizes that they can do 'so much' and it may not be enough. It is a matter of accepting what is and figuring out alternatives, i.e., volunteers, enlist church members to help. Or at some point(s) realize that there is no more you (loved-one) can do.
You do all you can to 'keep her safe, healthy and happy." (I'm not sure about the happy part... most are not happy). A person needs to be realistic and realize that they must maintain their self / and self care is being selfless. If we do not take care of our own well-being, we cannot be there for another. And, then we fall apart -and have to crawl back creating our on health/well being.
Gena / Touch Matters
My world has become very small as I have had to let go of so much in order to care for my mother. It's a job that I never wanted.
When this season is over, I will be throwing off the caregiving identity without reservation and moving forward into what I hope is a more restful and peaceful time in my life.
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. Pretty sure that, even for caregivers who maintain regular employment, when the person they’re caring for says or actually has no alternatives, yes, it’s all them and it is fully expected that they become utterly sapped, in what can amount to exchanging one life for someone else’s. It is those, who’s boots are on the ground in this, that understand this and your to the individual to monitor how much they can and want to give. But, lines become quickly blurred and the expectation by the care recipient and outsiders, can be that you perpetually give, from an empty well.
As humans, we face the dilemma of seeking out "our purpose." I've gone down several paths looking for my purpose, only to learn that I had more to learn and needed to choose carefully whom I wanted to devote myself to. As I learned with raising my three children, it was a devotion, not a purpose. I am always reminded of this profound saying, "Why make someone a priority, who only thinks of me as an after thought?" When they left home, they never looked back.
As a fatherless child (he was killed in war), taking care of my mother was an honor that I did for him as much as I did for myself; but, I was not a nurse, so that experience was not a purpose. I gave her to God and told him, I would be responsible for holding her hand and loving her until the end (actually, I love and miss her terribly, still).
Just my two cents here.........your purpose is to make meaning of your own life. When you come to the end of the road, look in your rearview mirror and ask yourself if you did your best. If you did, then you can be proud of your accomplishments and pray that you receive the same treatment as you walk the final part of your journey.
For me, there is no appointment of being caregiver. I decide. Who I didn’t care for, was a narcissistically abusive mother. I don’t have guilt, despite others who try to guilt me. The “But she’s your mother” tune played out, because she should’ve acted like it then.
Im also not guilted but a neighbor that has merely decided how lucky she is, that she moved downstairs from me and decided I’d be her caregiver.
There are people who care give, because they love who they are caring for and, given the recipient’s mental status, are appreciative of that care. But, coercion, guilting, smear campaigning someone into caregiving? Fortunately, I have excellent boundaries.
It may even be a legal issue. If you have been forced into caregiving, without your consent, as if you are a slave, it may actually violate labor laws. You may need to document how someone is coercing, threatening or making your life uncomfortable, because they’ve decided you will be their caregiver and you haven’t complied. Some care recipients will even be abusive and threatening, if you do become their caregiver. But do not do whatever they want. They may even complain to the authorities and they may be compensating you with nothing. Of course, here, I’m talking about caring for an outsider, who is having you work for them, against your will.
Note that there are states that will also compensate you for your work and you are probably going to need it, if you’ve given up you sick days and your health, your livelihood and your health benefits and your retirement, to care for someone.