Follow
Share

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.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
I too love my mom and do whatever to make her happy and safe. I also try very hard to have a life of my own . But either side of my weeks holiday was fraught with making sure she’d be ok while I was away. Prescriptions / food / potential hospital visit if her blood count drops.
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.
(5)
Report

Perhaps it's different as a wife, since that's been my identity for over 25 years. I'm grateful to be able to be my husband's caregiver, and pray for the strength to be faithful to that calling until his last day.
(4)
Report

Many excellent comments on this thread. It's true that there are so many elders who imposed chosen martyrdom on themselves with caregiving but are then resentful when no one will become a martyr to their needs and wants. This happens all the time.
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.
(3)
Report

Cp31979: The caregiver who leaves behind her husband, daughter, family, pets, home and life to move in with their elderly parent in another state MANY states away says "It is and was all time consuming." That would be THIS author.
(3)
Report

My sister has taken on the role of primary caregiver and I am forever grateful to her. Mom is safe and in a LTC facility but is very needy. She wants my sister to call each of her grown children daily. And if we don’t pick up she becomes very anxious. I do a weekly Facetime chat and almost daily telephone chats which is more than a lot of residents receive. I remind myself of how fortunate I am to live far away and not needing to be hands on. It’s a choice I made and I’m ok with that.
(3)
Report

You are making the right decision to ensure you live your life well, as well as care for your mother's life. I retired and took over full-time care of my mother one month before the Covid-19 lock-downs began. I ultimately became a grocery shopper with no other outlet and my dreams for my retirement died. After two years, all lock-downs ended, but my circle of friends, my career, and my plans had all disappeared. I can't seem to be able to start living fully again, I just let myself get very old, too. Don't ever give up on your plans, ensure Mom is well-cared for, and keep chasing any dreams you have now or you could forget how to live like so many primary caregivers seem to do. Good luck and don't let anyone make you feel any guilt for living fully.
(6)
Report

imout01,

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
(0)
Report

@Luta65

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.
(4)
Report

Luta65, great to see you again.❤️

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.
(2)
Report

It's true, that can happen. I fought an internal battle w/being a caregiver (I have a life!) but eventually I gave in, and it became my life. Other caregivers were my friends and company. When it was over it was like....the person in the movie who was alone, lost at sea. Not seeing any signs of life as far as the eye could see. Dramatic huh? lol...well, that's what if felt like.

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.
(5)
Report

I read a recent post on this forum where the OP described a situation of dedicating his/her life to taking care of a parent who had been deeply betrayed by a then newly-disabled spouse. There was a strong sense of love that came through and that is lovely between an adult child and an elder parent. The attempt to right a wrong done by another was not so much.

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?
(5)
Report

@ imout01

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.
(4)
Report

Ireland great post.

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.
(2)
Report

RedVanAnnie so true. Yes, for some, it is their calling and it creates purpose in their life. For others, they are snatched out of their purpose, by being forced into a caregiving role.

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.
(2)
Report

BurntCaregiver and I have disagreed before. But, we are on par here.

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.
(3)
Report

Happiness is not part of this story and you are not Mary Poppins ("just a spoon full of sugar" won't do a damned thing). What we can do, as daughters, is to protect them and bring comfort and security wherever we can provide it or arrange it.

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.
(5)
Report

I agree with donttestme. But, I’ve seen, right from the start, even when I’ve said no, that it is a dynamic of completely blurred lines.

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.
(4)
Report

I think what TouchMatters also means, is to have enough to give yourself. There are many who don’t mind becoming caregiver to one person. But, for them, it may not be a lifelong goal, to care for one person after another. Also, caring for someone you love and actually want to care for, is entirely different, from someone entitling themselves to your life, particularly if they’re an outsider. This does happen and it’s up to the potential caregiver to either handle the care or erect boundaries. But, there is no such thing, at least in my book, where someone designates me as a caregiver, without my approval.
(2)
Report

At this point in my life, the caregiving is the most important thing that I do, like it or not. It's basically the only thing that I do.

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.
(14)
Report

It is making a decision - by understanding that if a person (care provider) allows another to drain their physical/mental/psychological energy that they will soon have nothing to give to another. One needs to focus on finding equanimity and balance, and setting boundaries.

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
(5)
Report

It wouldn’t be healthy to make your caregiving your entire life’s purpose. After all, caregiving has an “end”. Your life won’t end though when your caregiving does. That’s why it’s so important to keep doing what you can for you, while your caregiving. I would say it’s about balance, but caregiving is all consuming, so it’s hard to “balance”. So I’ll say it’s about the little things you can do for yourself. Little snippets of rest, enjoyment, distraction.

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!
(7)
Report

Yes, unfortunately it does. The care-giving can become an identity that forms the rest of your life. From a personality perspective not always in a bad way, but from a time perspective, you could lose years of your life.

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.
(9)
Report

I guess my response is not the norm to this question.

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.
(12)
Report

I have never allowed caregiving to be my identity and I did it as employment for 25 years. It's a job that I stayed in because the pay was so good in private care. I've been the caregiver to my mother for a few years. In reality I've been her parent most of my life. Anyway, I'm done doing this. Others can come and do for her. I will bring hired ones in.
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.
(6)
Report

My motto is that you have to maintain your own life so you have a life to return to when the caregiving journey ends. Too many people give up their careers, their homes, their hobbies and their social needs when caregiving. They neglect their marriages, their children, their own health and happiness and then spend years trying to climb out from under the rubble. Long term caregiving is a choice. How involved you are day to day as a caregiver is a choice. It can’t be forced on you. Never forget that.
(7)
Report

Some care takers are fulfilled by a sense of purpose and self-worth. When their patient dies, they are left at loose ends for a while, feeling somewhat useless and uneeded. This does not have to be you, but it is not always a negative place to be.

Care taking can also easily become overwhelming and burdensome when the care taker feels forced into the situation and has no support.
(7)
Report

It is time for you to start touring assisted living facilities and choosing one for your Mother if she can afford it and if not selling her home and finding a assisted living home or take care of her and eventually place her in a nursing home if there is no house to sell . A lot of our choices are based on economics - some people can’t afford assisted living or a elder attorney. Some people do not know they have a choice - most people are doing their best . Society has yet to even recognize Caregivers and most people don’t choose the role either . Good luck your going to need it .
(8)
Report

I remember that, when my mother became caregiver for my stepfather, part of her depression was likely loss of identity, when I look back on it. Caregiving often requires not just mountainous work, but, you may even feel you actually lose the right to do anything else, including basic self care, like sleep and eat. While I couldn’t help my mother back then as, I didn’t really understand, she was good at seeming someone unaffected, and I was working 2 jobs and doing work for the family business, when I look back, I have a better understanding now. Caring for him and a legal case she took on and loss, in his name, subsequent to his death, is in part what may have led to her own, 13 years later (earlier this year).

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…
(6)
Report

Good Morning,

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!
(16)
Report

I was stunned when I felt I would have to put my life on hold for my Mom. I couldn't see that at all. But everything fell into place to make it happen. I was laid off after 36 years. No more financial analyst. Soon, every ounce of energy, brain cells and love I could muster was needed to care for my Mom. And that snowball grew quickly! I saw her through to the end, and I will never regret it. Best time spent, EVER. I didn't really like my Mom to begin with. Now, I ADORE her.

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.
(10)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter