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My wife and I are in our 50s and she has Stage IV cancer. She is on immunotherapy, which is kind of cruel because it extends her life so she can lie in bed in near constant pain. Her family are mostly overseas, and my family are too lazy and/or selfish to offer a hand. Her illness has destroyed her life and mine as well. I have next to no social life, as all I do is work and help her. I lost a chance at a promotion because her cancer has taken too much from my career. Now I'm viewed with a sideways glance at work. I guess I'm lucky to have kept my job, so far.
I emphatically refute the notion of caregiving being a choice. I had this dropped in my lap and there is no way out, with next to no help.
No, not everyone is cut out to be a caregiver, but who is it? I've lived in this house since I was born, sixty years ago. Then my brother came. We were a family, our parents, my brother, and myself. My father found a younger woman when he was in his early 60s'. My parents divorced and my mother got a deep depression. My brother got married. The time went by and 13 years ago my mother was diagnosed with Alzheimer's. Taking care of her was not my duty, it was just natural. We are still living together, no nursing home, day center, or any professional help, just she and me. My brother comes home two Sundays a month and I can go hiking in the mountains. It is hard. Watching your mom worsening every day is heartbreaking, and staying at home all day long without being able to enjoy a bit of human freedom is claustrophobic. Even the one-hour stroll we take every morning is a breath of fresh air. I am adaptable. Work out at home, can change my mom's diapers between sets of pull-ups (not all gym rats are able to do that), learn English as a self-taught... All that being said though, some times I wish I had gone to the edge of the world when I was 18... Being a full-time caregiver of a mother with Alzheimer's is... Is not not for everybody. I can attest.
Know your heart. know your limitations. know that the expectations are forever changing. know that your outcome may be very, very different then the one you visualized, imagined or assumed.
Change what you’re able too. know what you can’t change. Remember and never forget those two sentences are always interchangeable.
Find your peace and allow the Universe to guide you❤️🩹
Another point I see everyone dancing around is: no one ASKED them if they felt qualified, healthy enough and have the skill set to be a caregiver. It’s like everyone picks the most vulnerable person and is like: yeah you be the caregiver.
Ron’s comments down below I find especially toxic and unhelpful. I’d love to know how many children he raised as a single parent. Some of us don’t have to “grow” Ron; some of us are sick and tired already.
Thank you for this. My MIL is 85 and just had a mild heart attack. She lives alone and has HBP and diabetes. I am in my early 50s and have my own health issues. She doesn’t take good care of herself but she also won’t let me do anything like make her a medicine box or pay her bills etc.
She is an only child and had an only child. My husband (her son) is a very intensely busy physician who is also short handed and works out of town a few days of the month. Our 3 kids are adults and have jobs and live elsewhere; they aren’t married and so have no spouses or kids to help farm this out on.
It’s on me. All of its on me and I do a very bad job of taking care of myself. I had double knee replacement a few years ago and I’m recently coming out of a depression and have heart issues and am still recovering from lobar pneumonia 6 weeks ago.
My mil doesn’t want: a sitter, a housekeeper, a nursing home, home health, physical therapy, exercise. She wants me. She wants me (or my daughter) to literally go move in with her “just in case” and stare at her in that hot house with no lights on etc. She is also up all night and sleeps all day so she isn’t on a normal human schedule. She is willing to do absolutely nothing to help us out because she is a narcissist with a giant toxic personality disorder.
So guess what? She was nearly crying in her whiny waif voice the other day that she wants someone to come “stay with her”. None of her doctors told her she can’t drive or shower or get dressed. She decided all of that. I just remind her that we are doing what she wants: she doesn’t want a sitter so we didn’t get her a sitter. She doesn’t want a housekeeper, so we didn’t get her a housekeeper etc.
I am NOT her caregiver. I will NOT be her caregiver and frankly I resent that she decided I would be. I understand she is anxious and afraid. I understand that she took care of her elders because she wanted to. She got a lot of self confidence from doing that at the time. She isn’t me. (But you know narcissists think everyone is an extension of them)
I’m not doing it. I can only take her in small doses rarely. Absolutely in no way am I getting roped into this. She got mad the other day because I had her groceries delivered instead of doing it myself. I get my own groceries delivered.
I have read and read and read for 3 days on this. Look, we generation X have to get a backbone about this. The boomers were shit parents and we don’t owe them anything. She is going to learn real fast that she is getting a sitter (who we will pay) and she is going to be grateful for that person. They aren’t going to tell us what to do. They don’t deserve it. Would you let a child tell you what to do? I honestly don’t care what she wants. What is going to happen for her is what I decide I am willing to do.
I will take her to doctors visits and I will send her groceries. I will make a pill box for her and I will help her pay her bills. That’s it. That is all I am available and willing to do.
This is someone who treated me like dirt for 20 of the 35 years I have been around.
I’m not a caregiver. I had a lot of kids in a ridiculously short time period (more kids than years) and I gave everything I had to raise them well. I’m done with caregiving. I’m exhausted and I’m thrilled I don’t have grandkids yet because I’m still worn out from raising my kids as basically a single parent.
My Mil is going to learn really fast that she can’t be in control of this. Tough tooties. She gets what she gets and she is going to learn to be grateful for that. I won’t be bullied and I don’t care what anyone thinks about this.
Generation X: don’t get guilt tripped into a way of life you already know isn’t for you. Stand up for yourself. It’s not for us to fix what our parents made happen in their elder years.
I dealt with a supposed so called caregiver she was ok for awhile until her moods changed as time went on she was caregiver to her mom before then eventually her mom passed away after all that she was still my caregiver as well however she became very manipulative and disrespectful towards me so she left and never returned glad she left she not a real caregiver! and should not be providing care to other clients.
I married my exhusband at the age of 16..had a child then realized we were too young and only playing house. I gave him custody of my son when we divorced a year and a half later. He and his family were more prepared to raise my son and he had a good job and they were very good with him. Over the years he grew into a great individual and cared deeply for his father as he should have. I credit his father and grandparents for making him the man he is today. His father raised another child as his own son . The boys have never wanted for a single thing their whole lives and anything they asked for they received. They are in their 30s and 40s now with their own families. Their father suffered a stroke and needs constant care. At the beginning of his illness the boys never left his side and made sure he got what he needed.the one son and his two daughters had lived with him for years after he divorced the girls and he moved in with his dad who cared for them while often financially supporting them. Well last year they decided they wanted their own place and asked me if I would help out with him so he wouldn't have to go to a nursing home. There were promises made and I felt like I should take care of him rather than him go to a nursing home. After all I owe him everything for doing my job and raising my son..Big mistake. One sons reputation should have told me everything he promised was a lie.Im expected to babysit his kids whenever he just drops them off . I can not even attend my own doctor appointments because they promised giving me a ride would not be a problem.My own health has deteriorated so much that I really am not able to care for him. I have not had a day off in almost a year.im 63 and they are young.if I ask for help they give me hell and say I'm not taking care of him. I'm at the end of my rope and have severe mobility issues.They tell everyone that I don't take care of him right but if I don't I wish they would tell me who's been doing it for a year and he hasn't died yet.ive told them I will be happy to move out if they want to come take care of him..They don't. I don't know what to do..its like I'm stuck here with no way out and I'm not willing to let myself die so they don't have to take care of him.
I had my first child at 20, my grandchild at 49 (and they lived with us) and we of course, had to help parent her. I moved my mom to the same city where we lived about four years ago. My sister does nothing and has visited just once in the past 30 years to see my mom. When she came for a visit last year, she turned it into a vacation. I am very clear that though I help with my mother (she is in a senior building with lots of services) visiting, cooking, taking her to the hair salon, etc. I do not want to be a full-time caregiver when and if it become necessary.
I finally feel my life is my own. Some days I feel selfish, but I know I'm just not up to it. I still work and traveled frequently before Covid. I have health issues of my own, not major, but would be unable to lift her, etc. I feel it would just transform my life.
I have given up so much of my life to care for my elderly parents. My dad passed away 2 years ago from end stage Alzheimer’s. He required an enormous amount of care, but I didn’t mind because we had always been close and he was always appreciative. My mom and I were never particularly close when I was growing up. I am the youngest and she was pretty much “done” with the mom thing by the time I was born so I became independent at a very young age. I have some real problems dealing with my mom because she is demanding, has no filters, and has no thought of how her actions affect me or my family. I gave up my life and freedom for this because my siblings refuse to step up. There is no easy way out for me and I resent it when someone tells me “well, it’a only fair, she took care of you were young...” It’s past time for people to stop with the guilt. We deal with enough without it.
I did not read every word of the nice article. So I may have missed something that addresses my concern. There are times when the financial situation of the elderly person is such that if no one in the family steps up to help, then the sufferer may get no care at all.... Duty and responsibility are very important parts of being part of a family
This is a helpful article acknowledging personal and emotional realities involved in caregiving. Many contributors to this forum are obviously struggling with resentment at being caregivers vs guilt if they do not assume this role.
Honesty about not being willing to be a hands-on caregiver is the healthiest choice someone can make. If you are the Responsible Party for someone who needs care, you are being responsible by arranging for professional care and assuring that legal and financial obligations are met.
What a helpful, intelligent, and insightful article. The person who can feel productive, fulfilled, andsuccessful as a hands on caregiveris very very rare. However, i have seen two such situations and they were beautiful.Every person and every situation is different, but the main point is that hands on caregiving should be a choice.I have chosen not to ever try to be a hands on caregiver in a permanent or even long term situation. I tried twice for a three week interval and i found it was impossible for me. I placed my terribly crippled, ill, and widowed daughter in a great assisted living facility. in such facilities, a day staff works 8 hours giving good care and supervision. then, they go home and a night staff comes on duty. An at home constant caregiver is in a very different situation.Kudos to those who can and do act as fulltime caregivers very lovingly and successfully.God bless them all! It must always be a real true choice. Nobody should ever feel obligated to do it.Also, managing the lives and affairs of a helpless dependent person is in itself a lot of work and responsibility and does show a lot of true love.Full time hands on caregivers should always have respite of some kind at least once a week or more or possibly even daily.Every case is different ans all needs should be evaluated and re evaluated. Love to all!
Hi, this is a very insightful look into the often overlooked aspect of caregiving. Caregivers who do love, respect, and have happy memories with a loved one, does not erase the frustration and exhaustion that can go along with long term caregiving.
However, I would like to know how others deal with feelings like mine?... when the care is for someone you DON’T have love and respect for.....
FIL has been living with us for over 3 years, following the death of his 3rd wife. He had a stroke about 10 years ago and has Parkinson’s. FIL does not have a mean or hateful personality.... maybe would be easier if he did because then ALF would be in play. He does have to be pushed to shower/change, which I have harped on enough to hubs to get him to finally say something. The last stinky stint was 6 weeks of non-showing and 4 weeks of not changing clothes. I suspect he has been flushing his underwear down the toilet, as they “disappear” and our plumbing continues to back up. Just one of many things that have been ruined in our house since he has moved in.
As much as hubs loves and respects FIL, they stand on some weird ceremony of only talking about surface stuff. Hubs is terrified of embarrassing him in any way.... he is so foul that I am too embarrassed to have friends over, and have to be on constant guard to keep my crawling granddaughter away from him. Who knows what’s on his hands, etc? Many of my friends have had to deal with elder parents and have no problem kindly directing them to the shower, etc..... so all of this coupled with a long list of reasons, lend to my having no respect for FIL... all personality traits that I deplore, past skirt chasing at the top of the list, and knowing full well he would be doing it again if he were able.
SO with this said, I guess what I am really looking for is affirmation (or not), that my feelings are not out of bounds here, and that I am not alone in feeling as much resentment as I do? I work from home and every time I have to go into the living room where he sits all day, I am irritated. I can’t stand to touch him, and avoid doing anything of a person nature for him. It did not start this way, but once I confirmed what I had already suspected about him, there was no unringing that bell.
Hubs insists on sitting with him in the living room every single night until 9 when he gets him his water and gets him to go to bed. Then comes into our bedroom and that’s our time.... right..... (Incidentally, we were empty nesters all of 2 months before he came)...
Hubs wants to hang on and keep him here until the point he can no longer feed himself or toilet alone....
In essence, hubs has a lot more respect and caregiving for his dad, than the other way around.... what to do????? What do I do with this resentment???? The statement of it (resentment) taking on a life of its own, could not be more true.... it is like a 4th person in the house. Am I a horrible person? I did not know how much resentment and animosity I could feel for someone....
I struggle with this issue constantly, in that I am the only caregiver in my family. I do understand individual differences in people, but I struggle with why my sibs don't just grow up and do what needs to be done as an adult! I can't think of anything that I have had to do as an adult about which I have said, "I just can't do that." Doesn't an adult do whatever life demands? Obviously not, as my sibs don't, but I still don't really understand why I do everything that has to be done and none one else does. I still don't get it after reading your article, Carol. :( I also notice that this question of sibs not helping is probably the most common one raised on this site....
While one might start out willingly and youngish, as you age and the caregiving responsibilities become 24/7 with no room for anything in your life... and, you see yourself age... (you don't want to look in the mirror)... and, you've lost your job, friends, family and any opportunities ahead... and, your dreams begin to fade, because you know your body is feeling it all now... You look at cargiving, the present and future with a daze ahead of you... you don't know who,you are any more or,what will become of you... yes, caregiving changes as everything around you changes...
Little late, but as for Ron's comments, I'm sure most aren't using the article to justify them not caring. Sometimes care giving doesnt help you grow. It's about trying to fit society's expectations. It's like asking someone to be a police, doctor, lawyer, etc who isn't up to it. It's the care receiver that may need to grow and take a step back and look at how all this impacts the care giver. I've been through similar thing and being female care giving is more expected. Looking back I see I was never made for that and being so young as well..It's about being honest.
Tinyblu... Welcome to the (caregiver's) Monster Club. So many of us feel the same... We've given way too much... our lives... I have so many feelings wrapped up in one body... not healthy... Today was another one of 'those' days where I broke my back by taking my mother on a day long trip and she is never happy.... sucks the life out of me... You are so young... that's a great thing in your favor... I hope,you can devise a plan to get your life back on track... You've already done too much...
I really needed to read this. Sometimes I feel so awful that I literally HATE every aspect of caregiving... and Dad is in a ALF! The main thing is, Dad was OLD already when I was born- almost 50 and because of the life choices he made, he found himself pretty alone in his old age. Add to that the fact that he has been legally blind since I was born and pretty crotchety his entire life, and it pretty much left me being his "caregiver" since I was 6 years old.
So, I escaped. I went to college and grad school, got a job that I loved, started earning decent money and living my life. Then all of his bad habits caught up with him. In December 2015 it became apparent that he couldn't live alone anymore, and no one was there to pick up the pieces but me. His other 7 living children have nothing to do with him.
So, out of guilt, I took it on (and lots of codependent programming) with anger and resentment on top. I'm not a patient person. I'm not diplomatic. I shoot straight...all of which are BAD qualities as a caregiver.
...and it's terrible to watch this man SLOWLY deteriorate. So, with a resentful heart, I faithfully trudge to visit and help when the ALF can't. I work two jobs to help pay his expenses that he SHOULD have been able to pay had he been more prudent in his financial affairs.
My whole life has been devoted to him. Now I want to LIVE mine. I'm turning 40 this year, so it's time for ME to live instead of watch him die. Yep... caregiving has made me a monster.
These comments from people saying they are not cut out for this job are false. The truth is..nobody can do this long term without sacrificing their entire life.. Family members don't pitch in...that's the sin..they don't get it and dont want to get it. I disagree with this person who wrote the book..I had no choice..I just did what I had to do because my mother took care of me as a child and deserves the best at her age. I have no life and can't take it anymore. I hire people and they dont commit. So....you just do it...because no one offers to help...I begged for even a break. I am so depressed most of the time. Ive lost track of time. Spent entire yr looking for decent person to help. Sad part is that her own kids dont see her...no compassion..too selfish....
It's been two years since I last wrote on this thread, and as we all know things can change in a blink of an eye. Last year my Mom [98] refused caregivers and refused to move to senior living... she had a major fall and spent her last 3 months in long-term-care. She needed that higher level of care, something which would have been physically impossible for me to do being 70.
Dad [95] was unable to live on his own, so he had me interview professional caregiver agencies, and I found one that worked out so well that we had the same two caregivers for over a year. Dad really enjoyed them, lot in common, both had a great sense of humor which was good because Dad had his crazy sense of humor, too. These two women where like the grand-daughters he never had.... I know it sounds like they were in their teens or 20's, but were in their 40's.
Some people were surprised when my Dad moved into Independent/Assisted Living, but that was his idea, as he said the house was too much for him to keep maintaining. He had me empty and sell the house since he knew I was logistically skilled and had a lot of experience in that field. He loved his new residence, said he wished he had moved in years ago. He loved the attention. Plus he was able to bring his two caregivers with him. Dad was stating to deal with dementia, so when he woke up in the morning, there standing over him was the smiling face of one of the caregivers :)
Doing what I did above allowed me to once again become the "daughter" instead of a "caregiver" which I wasn't cut out to do back when my Mom was still alive, unbelievably stressful which caused a lot of friction. My Dad passed a couple of months ago, so I can rest easy knowing I did the right things.
Thank you so much Ron for sharing your beautiful story... What a wonderful, spiritual, positive experience you had taking care of both your mom and dad. I feel your parents and God are with you always with you. I know how it is to lose one parent, let alone both (I lost my Father when I was 18... my youngest brother was only 11... I would have thought that he would have been with (and helped) his mother much, much more after that... (rather than keeping a distance) but, I guess that's his to live with). Thank you for sharing this inspiration with me (and us) on AC ...
Heart2Heart, I agree with your comments. I am sorry for your situation. I had a similar situation where my siblings were very against my parents wishes for their care and made life a living h*ll. It is very difficult having to "walk on egg shells" around one's siblings while fulfilling your parents wishes. I struggled with the anger my siblings caused and still struggle with the after effects. All of that on top of caring full time for a mother who had Parkinson's and Alzheimer's including watching over her most of the night to help with her night time dementia, confusion and obsessive behavior. God provided me the strength to get through all of this and I am finding that this trial and the grief with losing my parents has brought me closer to Him (which is good). I am happy I did what I did as I know my parents were very grateful and that I was able to provide them with excellent and loving care that they would not have received elsewhere. To hear my mother tell me and others how blessed she was to have me as her child and to have me care for her is priceless. To hear her tell me daily that she loved me is priceless. The last words she uttered were "I love you". I could ask for no greater reward. Also, having seen how often caregivers do not provide good compassionate care, how difficult it can be getting the proper medical care and knowing of the horror stories from Assisted Living (a person died in her room and no one knew for 3 days, just down the hall from a friend in one of the best local AL places in this area), or from Memory Care Units (people coming into your room and peeing in the corner, taking your stuff, climbing into bed with you or climbing on top of you -- staff not being there to help you when you fall -- patients medical needs (diabetes) not being properly taken care of --- patients heavily medicated so they do not cause problems) and Nursing Homes I am so glad I was able to keep my parents from such environments so that they had a loved one providing care which in itself is priceless. I hope you can get the help you need in providing care and that you are blessed for the love you have given your loved ones. God Bless you.
I have no problem being a caregiver, if I can get the respect and support from my family (includping the parent I am 'trying' to take care of). But, when they fight with you and don't think you know what tour'rw doing or talking about, after spending ALL your time/life in doing so.... this is when it becomes toxic to the caregiver.... Most of the time this 'hardship' for the caregiver usually comes gradually with time due to always being on guard (with the 'family/siblings' that is never around, but knows everything... and treats you like a piece of crap...)... It's exhausting enough dealing with all the daily tasks, Dr's, etc... (entertainment director?)... If you're an exception that have never had such failing resistance... Count yourself extremely lucky!
I agree that not everyone has what it takes to be a good hands-on caregiver. This requires the caregiver to show respect, kindness and compassion and to have patience and humility. I would challenge those who took this article as justification for not being a hands-on caregiver to take a close look at themselves in the mirror and ask if perhaps they should "grow" some as a person. I never ever thought I would provide the care for my father and mother that I eventually did. I actually told them I would not provide elements of care that I eventually did. I am very glad that I did provide that care as it helped me grow substantially as a person and gave me many opportunities to show my parents love and compassion and to have memories that only a caregiver will have and that will last for the rest of my life. After having seen first hand the lack of good, compassionate care that is provided by many paid caregivers in the home and in Assisted Living or a Nursing Home I am very thankful that I was able to provide for my loved ones in their home and show them my love for them in a very personal manner.
I just read this article from a reference in another thread. Thank you! Especially for the part that says there is no one way to be a caregiver. This is something my two siblings and I have clashed over. There has been a lot of accusation and judgement regarding our different points of view but after a year I think we are finally calling "truce" by accepting each of us has different things that we are able and willing to do. Also to agree to disagree on what "caregiving" means. I am coming to realize just how fortunate my parents are to have THREE people making their best effort to watch over them and care for them. Even though my folks don't acknowledge that... they just expect us to do for them, it helps me to know that my siblings and I are all caring loving people in our own ways. Very nice article!!
I have never considered myself as a caregiver even though I raised my son by myself. I am one of six children and have four sisters. My brother passed away in 2012. My mother and I had a falling out four years prior to me finding out she could no longer live alone in her house and it was all I could do to go see her. We had never gotten along and I tried my best to keep my distance even though I lived about 35 miles from her. After finding out that my mom was making some pretty big mistakes in her life (after she retired) it was clear that someone had to either move in with her or she had to move in with one of us. I had hoped it wouldn't be me because I had been living a pretty good life and was working full time as an artist. I had a mortgage, a husband and life was good. After finding out that two of my sisters had already stolen from my mother and one of them was in the process of stealing my mother's house and property, I simply couldn't allow this to continue so I stepped in. I didn't want to not one bit. My mother had not treated me well and we were not close at all. I resented my mother for staying with my abusive father and I really didn't enjoy being around my mother because of her controlling personality. However, I am her daughter and I simply couldn't stand knowing that she was being ripped off. One of my sisters already had Power of Attorney without even letting the rest of us know and she had turned into a modern day gypsy. She had her claws in all of our mom's affairs and was just about to spend our mom's life savings on a motor home my sister had always wanted. I hired an attorney, had my sister's POA revoked, gave it to myself, changed my mom's Will and removed everyone and I moved my mother in with me and my then husband. In doing this I of course lost my job of nine years. I took an early retirement which yields me a very tiny pension. When I moved my mother into my house, every one of my sisters cut the ties with us. They showed their true colors to me but it wasn't surprising. My family had always been dysfunctional so how could I expect my siblings to step up and do the right thing. My husband didn't want my mother living with us so he began staying gone and eventually I caught him cheating. I had to make a hard decision. Do I allow him to stay in our house so I wouldn't lose it knowing he had cheated or do I kick him to the curb and lose my house? I kicked him to the curb and lost my house. I lost everything when I stepped in to take care of my mother and it's now been six years and I have never recovered. I will be 61 in May and even if I put my mother in a nursing home where she belongs now, no one is going to hire me. I am very resentful and not towards my mother but towards my sisters. They used my mother all their lives and when she needed them the most they turned into bandits and tried to rob her. My youngest sister who is ten years younger than me was supposed to be the daughter who was going to take care of our mother. Her husband had been my mom's beneficiary for years and I was okay with that. For decades I felt very comfortable about my youngest sister being the one who would move our mother in with her and her husband but it was not to be. In fact, my sister was the first one to cut the ties. With no explanation whatsoever in six years, my sister has never once called, emailed or written a letter explaining why she is no longer in our lives. I saw something she posted on Facebook a while back. She had commented on a photo that one of my nieces had posted and it was a photo that my mom was in. My sister posted, "I miss mom." I was furious. She misses our mother??? Why hasn't she called? Why hasn't she sent our mother birthday cards, Christmas cards, Mother's Day cards? Why has my sister not explained why she isn't in touch? This has been the biggest mystery of a lifetime and is something I guess I will never know. So anyway, here I am living in my mother's house in a town that I have always hated in a house that holds so many awful memories and I am stuck.
kathyt1, are you cut out to be a surgeon; what about a firefighter or EMT; how about being a State Trooper? I wouldn't call you selfish for not going into any of those professions that help people, I would say you had common sense to know you aren't cut out to do those things. Believe me, I wouldn't want to go to a surgeon if he/she didn't have a passion for the job he/she was doing.
Sorry if I sound selfish to you, but I was recently thinking if I was a hands-on caregiver for my parents under the same roof, what if *I* fall, who is going to pick ME up? Many of us are senior citizens ourselves. Lot of us have our own age related declines.
I can do logistics and help my parents that way. Recently we all had several conferences with an Elder Law attorney so that my parents could have all their legal paperwork updated.... if it wasn't for me, they would still be sitting on a Will that is older then dirt.
Kathyt1's platitudinous comment is like something out of a fire and brimstone sermon from the Middle Ages without relevance in the 21st century. Had she actually read Dante's Inferno, she'd know that Dante puts virtuous non-Christians into the first circle and there's no circle for callousness. Moving on...I'm glad I read this article and hope more people read it before making big decisions about elder care. What's right for one family isn't right for all. Love comes in many varieties and can be expressed in many ways.
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Not Everyone Is Cut Out to Be a Caregiver
I emphatically refute the notion of caregiving being a choice. I had this dropped in my lap and there is no way out, with next to no help.
I've lived in this house since I was born, sixty years ago. Then my brother came. We were a family, our parents, my brother, and myself. My father found a younger woman when he was in his early 60s'. My parents divorced and my mother got a deep depression. My brother got married. The time went by and 13 years ago my mother was diagnosed with Alzheimer's. Taking care of her was not my duty, it was just natural.
We are still living together, no nursing home, day center, or any professional help, just she and me. My brother comes home two Sundays a month and I can go hiking in the mountains.
It is hard. Watching your mom worsening every day is heartbreaking, and staying at home all day long without being able to enjoy a bit of human freedom is claustrophobic. Even the one-hour stroll we take every morning is a breath of fresh air.
I am adaptable. Work out at home, can change my mom's diapers between sets of pull-ups (not all gym rats are able to do that), learn English as a self-taught...
All that being said though, some times I wish I had gone to the edge of the world when I was 18...
Being a full-time caregiver of a mother with Alzheimer's is... Is not not for everybody. I can attest.
Know your heart.
know your limitations.
know that the expectations are forever changing.
know that your outcome may be very, very different then the one you visualized, imagined or assumed.
Change what you’re able too.
know what you can’t change.
Remember and never forget those two sentences are always interchangeable.
Find your peace and allow the Universe to guide you❤️🩹
Ron’s comments down below I find especially toxic and unhelpful. I’d love to know how many children he raised as a single parent. Some of us don’t have to “grow” Ron; some of us are sick and tired already.
She is an only child and had an only child. My husband (her son) is a very intensely busy physician who is also short handed and works out of town a few days of the month. Our 3 kids are adults and have jobs and live elsewhere; they aren’t married and so have no spouses or kids to help farm this out on.
It’s on me. All of its on me and I do a very bad job of taking care of myself. I had double knee replacement a few years ago and I’m recently coming out of a depression and have heart issues and am still recovering from lobar pneumonia 6 weeks ago.
My mil doesn’t want: a sitter, a housekeeper, a nursing home, home health, physical therapy, exercise. She wants me. She wants me (or my daughter) to literally go move in with her “just in case” and stare at her in that hot house with no lights on etc. She is also up all night and sleeps all day so she isn’t on a normal human schedule. She is willing to do absolutely nothing to help us out because she is a narcissist with a giant toxic personality disorder.
So guess what? She was nearly crying in her whiny waif voice the other day that she wants someone to come “stay with her”. None of her doctors told her she can’t drive or shower or get dressed. She decided all of that. I just remind her that we are doing what she wants: she doesn’t want a sitter so we didn’t get her a sitter. She doesn’t want a housekeeper, so we didn’t get her a housekeeper etc.
I am NOT her caregiver. I will NOT be her caregiver and frankly I resent that she decided I would be. I understand she is anxious and afraid. I understand that she took care of her elders because she wanted to. She got a lot of self confidence from doing that at the time. She isn’t me. (But you know narcissists think everyone is an extension of them)
I’m not doing it. I can only take her in small doses rarely. Absolutely in no way am I getting roped into this. She got mad the other day because I had her groceries delivered instead of doing it myself. I get my own groceries delivered.
I have read and read and read for 3 days on this. Look, we generation X have to get a backbone about this. The boomers were shit parents and we don’t owe them anything. She is going to learn real fast that she is getting a sitter (who we will pay) and she is going to be grateful for that person. They aren’t going to tell us what to do. They don’t deserve it. Would you let a child tell you what to do? I honestly don’t care what she wants. What is going to happen for her is what I decide I am willing to do.
I will take her to doctors visits and I will send her groceries. I will make a pill box for her and I will help her pay her bills. That’s it. That is all I am available and willing to do.
This is someone who treated me like dirt for 20 of the 35 years I have been around.
I’m not a caregiver. I had a lot of kids in a ridiculously short time period (more kids than years) and I gave everything I had to raise them well. I’m done with caregiving. I’m exhausted and I’m thrilled I don’t have grandkids yet because I’m still worn out from raising my kids as basically a single parent.
My Mil is going to learn really fast that she can’t be in control of this. Tough tooties. She gets what she gets and she is going to learn to be grateful for that. I won’t be bullied and I don’t care what anyone thinks about this.
Generation X: don’t get guilt tripped into a way of life you already know isn’t for you. Stand up for yourself. It’s not for us to fix what our parents made happen in their elder years.
Thank you for listening to my vent.
My sister does nothing and has visited just once in the past 30 years to see my mom. When she came for a visit last year, she turned it into a vacation.
I am very clear that though I help with my mother (she is in a senior building with lots of services) visiting, cooking, taking her to the hair salon, etc. I do not want to be a full-time caregiver when and if it become necessary.
I finally feel my life is my own. Some days I feel selfish, but I know I'm just not up to it. I still work and traveled frequently before Covid. I have health issues of my own, not major, but would be unable to lift her, etc. I feel it would just transform my life.
Thank you for this article.
I gave up my life and freedom for this because my siblings refuse to step up. There is no easy way out for me and I resent it when someone tells me “well, it’a only fair, she took care of you were young...” It’s past time for people to stop with the guilt. We deal with enough without it.
Grace + Peace,
Bob
Honesty about not being willing to be a hands-on caregiver is the healthiest choice someone can make. If you are the Responsible Party for someone who needs care, you are being responsible by arranging for professional care and assuring that legal and financial obligations are met.
However, I would like to know how others deal with feelings like mine?... when the care is for someone you DON’T have love and respect for.....
FIL has been living with us for over 3 years, following the death of his 3rd wife. He had a stroke about 10 years ago and has Parkinson’s. FIL does not have a mean or hateful personality.... maybe would be easier if he did because then ALF would be in play. He does have to be pushed to shower/change, which I have harped on enough to hubs to get him to finally say something. The last stinky stint was 6 weeks of non-showing and 4 weeks of not changing clothes. I suspect he has been flushing his underwear down the toilet, as they “disappear” and our plumbing continues to back up. Just one of many things that have been ruined in our house since he has moved in.
As much as hubs loves and respects FIL, they stand on some weird ceremony of only talking about surface stuff. Hubs is terrified of embarrassing him in any way.... he is so foul that I am too embarrassed to have friends over, and have to be on constant guard to keep my crawling granddaughter away from him. Who knows what’s on his hands, etc?
Many of my friends have had to deal with elder parents and have no problem kindly directing them to the shower, etc..... so all of this coupled with a long list of reasons, lend to my having no respect for FIL... all personality traits that I deplore, past skirt chasing at the top of the list, and knowing full well he would be doing it again if he were able.
SO with this said, I guess what I am really looking for is affirmation (or not), that my feelings are not out of bounds here, and that I am not alone in feeling as much resentment as I do? I work from home and every time I have to go into the living room where he sits all day, I am irritated. I can’t stand to touch him, and avoid doing anything of a person nature for him. It did not start this way, but once I confirmed what I had already suspected about him, there was no unringing that bell.
Hubs insists on sitting with him in the living room every single night until 9 when he gets him his water and gets him to go to bed. Then comes into our bedroom and that’s our time.... right.....
(Incidentally, we were empty nesters all of 2 months before he came)...
Hubs wants to hang on and keep him here until the point he can no longer feed himself or toilet alone....
In essence, hubs has a lot more respect and caregiving for his dad, than the other way around....
what to do????? What do I do with this resentment???? The statement of it (resentment) taking on a life of its own, could not be more true.... it is like a 4th person in the house.
Am I a horrible person? I did not know how much resentment and animosity I could feel for someone....
Thank you for taking the time to read!
So, I escaped. I went to college and grad school, got a job that I loved, started earning decent money and living my life. Then all of his bad habits caught up with him. In December 2015 it became apparent that he couldn't live alone anymore, and no one was there to pick up the pieces but me. His other 7 living children have nothing to do with him.
So, out of guilt, I took it on (and lots of codependent programming) with anger and resentment on top. I'm not a patient person. I'm not diplomatic. I shoot straight...all of which are BAD qualities as a caregiver.
...and it's terrible to watch this man SLOWLY deteriorate. So, with a resentful heart, I faithfully trudge to visit and help when the ALF can't. I work two jobs to help pay his expenses that he SHOULD have been able to pay had he been more prudent in his financial affairs.
My whole life has been devoted to him. Now I want to LIVE mine. I'm turning 40 this year, so it's time for ME to live instead of watch him die. Yep... caregiving has made me a monster.
Dad [95] was unable to live on his own, so he had me interview professional caregiver agencies, and I found one that worked out so well that we had the same two caregivers for over a year. Dad really enjoyed them, lot in common, both had a great sense of humor which was good because Dad had his crazy sense of humor, too. These two women where like the grand-daughters he never had.... I know it sounds like they were in their teens or 20's, but were in their 40's.
Some people were surprised when my Dad moved into Independent/Assisted Living, but that was his idea, as he said the house was too much for him to keep maintaining. He had me empty and sell the house since he knew I was logistically skilled and had a lot of experience in that field. He loved his new residence, said he wished he had moved in years ago. He loved the attention. Plus he was able to bring his two caregivers with him. Dad was stating to deal with dementia, so when he woke up in the morning, there standing over him was the smiling face of one of the caregivers :)
Doing what I did above allowed me to once again become the "daughter" instead of a "caregiver" which I wasn't cut out to do back when my Mom was still alive, unbelievably stressful which caused a lot of friction. My Dad passed a couple of months ago, so I can rest easy knowing I did the right things.
Also, having seen how often caregivers do not provide good compassionate care, how difficult it can be getting the proper medical care and knowing of the horror stories from Assisted Living (a person died in her room and no one knew for 3 days, just down the hall from a friend in one of the best local AL places in this area), or from Memory Care Units (people coming into your room and peeing in the corner, taking your stuff, climbing into bed with you or climbing on top of you -- staff not being there to help you when you fall -- patients medical needs (diabetes) not being properly taken care of --- patients heavily medicated so they do not cause problems) and Nursing Homes I am so glad I was able to keep my parents from such environments so that they had a loved one providing care which in itself is priceless.
I hope you can get the help you need in providing care and that you are blessed for the love you have given your loved ones. God Bless you.
I am coming to realize just how fortunate my parents are to have THREE people making their best effort to watch over them and care for them. Even though my folks don't acknowledge that... they just expect us to do for them, it helps me to know that my siblings and I are all caring loving people in our own ways.
Very nice article!!
One of my sisters already had Power of Attorney without even letting the rest of us know and she had turned into a modern day gypsy. She had her claws in all of our mom's affairs and was just about to spend our mom's life savings on a motor home my sister had always wanted. I hired an attorney, had my sister's POA revoked, gave it to myself, changed my mom's Will and removed everyone and I moved my mother in with me and my then husband.
In doing this I of course lost my job of nine years. I took an early retirement which yields me a very tiny pension. When I moved my mother into my house, every one of my sisters cut the ties with us. They showed their true colors to me but it wasn't surprising. My family had always been dysfunctional so how could I expect my siblings to step up and do the right thing.
My husband didn't want my mother living with us so he began staying gone and eventually I caught him cheating. I had to make a hard decision. Do I allow him to stay in our house so I wouldn't lose it knowing he had cheated or do I kick him to the curb and lose my house? I kicked him to the curb and lost my house.
I lost everything when I stepped in to take care of my mother and it's now been six years and I have never recovered. I will be 61 in May and even if I put my mother in a nursing home where she belongs now, no one is going to hire me.
I am very resentful and not towards my mother but towards my sisters. They used my mother all their lives and when she needed them the most they turned into bandits and tried to rob her.
My youngest sister who is ten years younger than me was supposed to be the daughter who was going to take care of our mother. Her husband had been my mom's beneficiary for years and I was okay with that. For decades I felt very comfortable about my youngest sister being the one who would move our mother in with her and her husband but it was not to be. In fact, my sister was the first one to cut the ties. With no explanation whatsoever in six years, my sister has never once called, emailed or written a letter explaining why she is no longer in our lives. I saw something she posted on Facebook a while back. She had commented on a photo that one of my nieces had posted and it was a photo that my mom was in. My sister posted, "I miss mom."
I was furious. She misses our mother??? Why hasn't she called? Why hasn't she sent our mother birthday cards, Christmas cards, Mother's Day cards? Why has my sister not explained why she isn't in touch?
This has been the biggest mystery of a lifetime and is something I guess I will never know.
So anyway, here I am living in my mother's house in a town that I have always hated in a house that holds so many awful memories and I am stuck.
Sorry if I sound selfish to you, but I was recently thinking if I was a hands-on caregiver for my parents under the same roof, what if *I* fall, who is going to pick ME up? Many of us are senior citizens ourselves. Lot of us have our own age related declines.
I can do logistics and help my parents that way. Recently we all had several conferences with an Elder Law attorney so that my parents could have all their legal paperwork updated.... if it wasn't for me, they would still be sitting on a Will that is older then dirt.