I became an emotional cripple caring for my mom 15 years that I lost my identity. When she died not only did her death traumatize me (she was 90 with insulin-dependent diabetes, which her kidneys failed due to years and years and years being diabetic--Alzheimer's did not kill mom). After 1-1/2 years I'm still recovering from her death BUT I forged my own life, got a job, perusing my Master's. I'm doing okay. However, I never regretted taking care of mom. She lived a good life. She died comfortably, and never needed any narcotics or psychotropics. Her skin was perfect. She was on hospice for TWO years. You only have one mom, and I love her dearly even after death...my grief keeps me connected to her.

BUT we all die, and she died shortly before COVID first hit. Nobody is going to live forever. So that helped me adapt to her death.

And for the first time in my life I can do what I want with my life. Believe it or not I still am getting used to this.

Putting my mom into a home was the best decision. It was too much for me to handle, as I have mental health problems. My mother was contributing to continued detioration of my health. Sometimes it takes more courage to let go than to continue a path that no longer works.

To add to my previous post - While I do need to change my behaviors in order to survive the very difficult demands of care giving it is important to hold on to aspects of me that are important such as seeing friends and pursuing my interests as best as I can otherwise I will lose myself in the process. It cannot be 24/7 care giving from one person as it will not be good for the care giver or the person receiving the care giving. I need to be able to relinquish some control and allow others to help me. This is difficult but nonetheless needs to be done.

Very painful caring for 90 yr old mom with 60 yr old drug addict brother in the same house and managing residential property. We all live in separate apts in same family home. Ongoing changes in my behavior needed in order to survive. These include: getting and accepting help, being good to myself, letting go of responsibility that is not mine (like my brother's addiction), letting go of guilt for setting healthy boundaries in order to shield myself from toxic behavior, letting go of my need to do things perfectly (sufficient is enough), letting go of my need for mom's approval (it ain't going to happen she takes me for granted and criticizes me), need to care for me while caring for mom..and the list goes on and on. I am a work in progress some days better than others with my new behaviors. Sometimes fall back on old ones. This is an extremely difficult time in my life and do not want to be in it but want to care for mom.

I would also add resiliency, heightened intuition and multi-tasking. Also, if you initially suffer from "letting yourself go" as I have, the ability to re-group and re-focus on your own needs and health so that you can be there FIRST for yourself and then for your patient. This is the same as putting the oxygen mask on yourself before your child. This was a tough one for me. Prior to caregiving I was physically fit; both a runner and yoga teacher. I gained 60 lbs and ate crap after a few years of caregiving. This was a quick fix due to only sleeping 3 hours at a time for many years (people on tracheotomies and breathing machines, needing to be turned, etc.) I'm slowly making my way back. This is crucial not just for your survival as a caregiver but also for that time we have to face when our loved ones pass on and we have to integrate back into the real world. It will be difficult enough to lose our loved one(s) and our purpose at that time and we will want to put our best selves forward to maximize a successful transition. Healing thoughts to everyone - both care givers and recipients.

great point about carers being bossy . it doesnt have to be that way . the carer is often decades younger than the care recipient and factually have no right ( or the intellect ) to push them around .

I always try to keep it positive but I sure am Glad someone decided to tell the truth here!

Yes its changed me. I am no longer Happy. My whole life is nothing but DRAMA and Misery now. I have lost my whole family in my eyes and that alone can change a person. I spend every day praying for an end to my nightmare. I spent my WHOLE life making sure I did things the right way only to have to turn around and pay the price for my parents who spent their WHOLE life doing everything the wrong way. There is NO REWARD. For some people care taking is nothing but pure H*LL.

I am so happy that the author of this article found caregiving so rewarding. I have not.
I love my mother dearly and for a dementia pt she's pretty easy care so far. But I hate this 24/7 caregiving role and yes it has definitely changed my personality and my physical well being. It has not been a positive change! I'm a 62 years old living the life of a 90 year old with physical and mental disabilities. I'm isolated from society. We don't go anywhere or do anything because of Mom's disabilities. All we do is sit and sit and sit some more. I figure I'll be lucky if I make it to 65. Keep telling me about the rewards of this caregiving experience. Maybe I'll see it before I check out?

Yes, FreqFlyer. I completely understand. Not only do I caregive 24/7 for my husband, but also a couple of days a week for my 86 year old mother who is bedridden for the past year or so, with serious dementia and all chose to leave her with personal caregivers vs nursing home. She's been that way close to 3 years now. It's very stressful and sad. No money left. The 4 of us kids are making up the $$ differences. Seems no one really "cares" for the caregivers.

Yes, caregiving has changed my personality. I am in my late 60's and my parents are in their mid-90's and they still live in their large single family home. Before the logistic caregiving, I use to be out and about with my career and visiting friends, happy go lucky, very lucky about my life, etc.... now I am a recluse, grumpy, very unhappy, ill half the time. My parents got to enjoy 25 years of a fun filled retirement.

Rewards? What rewards?? Maybe a reward of an early death because of the numerous serious health issues caused by the past six years of stress :P

For those caregiving for a spouse, mine was diagnosed with early onset of dementia is 2011 at age 55, so much for retirement. It's very easy to "push their buttons" and get them angry and they can say very mean, hurtful things to you. Be prepared for verbal abuse. You want to throw your hands up and say I'm not doing this anymore....but what's the alternative. It will take it's toll on you. I feel like I have aged 10 years in the past 12 months. I'm not sugar coating anything. This is absolute h*ll for both the caregiver and the one with the disease. Not the retirement most dream of or plan for, and it is miserable most days. So caregivers, take care of yourself first.

No I don't think it changes a person at all.As a matter of fact I think it makes us stronger.On a regular basis I take care of 7 disabled family member's and also help out 2 elder neighbors .I also took care of my best friend until she passed away and my father as well.It's a lot of work.But I won't have it any other way.I alway's took care of people I started at a young age of only 11 years old.At a catholic house helping feed the hunger and baby sitting peoples children from all other kinds of thing's .

great article, i also have gained an inner strength thanks to my parents, i also don't deal with the fake bs some people are about (family included) and last but not least, i've learned how drastically life can change and never take special things for granted....

There are rewards to care-giving. It depends on how many OTHER things you have to deal with. I was my mother's caregiver for 7 years. It was the best 7years of my life. I enjoyed doing it. I think what made the difference, I've never been married, do not have children. I really had no one to care for. Losing my mother this year was a major loss, more than others realize.

Hi there. I am the oldest only daughter and have 2 slightly younger brothers.What .I really don't understand from what Ive heard is why a lot if times all the responsibilty falls to the daughters.... I myself have been perm disabled for almost 20 years. Right now I have hwsrt problems my heart rate is 37 I need a pacemker, I also hsve been in constant pain from a botched operation for years. I have 2 blown out knees right now but cannot have them fixed bc no one us willing to help me with any thing. I have a large tumor on my uterus and a med sized one on my head. My dad passed almost 2 years ago.I probsyed a very conplicated will bc the attys wanted to rip my mom off. My bp has risen 40 points both lower and higher number..so now I have high BP.I AM LITERALLY SCREAMiNG at my brothers friends and anyone listening and NO ONE CARES and no one offers to help. I AM IN DISBELIEF AND SHOCK that after all I have done to take care of others at my own expense that I sm in this position. I NEVER would have thought that I be on my oqn raking care if mom myself and 6 animals and would beg for help and get nothing. I am severely depressed snd can barely get out if bed.My youngest brother insults me and says why. "Can't you handle this" and offers no help and the other one literally dosent give A crap and did not even go to my dads funneral or see him in the 3 years before he died but he continues to threaten my mom and me about money. AND SOMEHOW THREW ALL THIS MY MOM SAID IT IS ONLY FAIR THAT THE ESTATE BE SLIP IN 3RDS. This situation has destoyed my life and will continue to do so. My personality is not even remotely the same I snap on a dime I am misreable and in feeling like this this is not good for my mom either. I just can't wrap my head around how people can be so cruel and uncaring..even several people that gad promised ne rtf hey would help me have failed to show up even for a day...even when U said I would pay them!!!!! I have done nothing but take care of people my whole life. Why why can't anyone help me?????

I appreciated this article, especially the sentence: "It's helpful to remember that there's likely no greater route to depleting the self-esteem of an ailing elder than to have their children boss them around."

It's definitely a challenge sometimes being a caregiver. But I agree, there are many rewards.

Thank you for this article.

Thank you for sharing this article with us. Yes, I definitely am changing. After 10 years with Mom, I'm much less a Type-A person and more someone who goes with the flow.

Please to all caregivers out there: what saves your sanity and preserve your well being is you take your "loved one" to adult daycare facility. So they can be watched during the day and you can get respite for yourself. It is a win win situation. If your loved one's insurance pays for adult daycare (my grandpa's medicaid pays for up to 5 days of adult daycare) then you've hit the jackpot!
Remember, "ADULT DAYCARE" is one of the secrets of surviving as a caregiver!

Debralee, some days I feel as you. First my apologies to anyone reading this on my language at times, but I'm being honest and will try to tone it down.

But some days, yes, I say to myself, why the hell am I doing this? I can't keep going like this. It hasn't been long, only several months, not years like others, but it has been very hard, stressful and a fast progression. Yes, I love my Mother, but some days I'm also hurting myself, with the stress from worrying, if I could stop worrying. Yes, I've started smoking just a little again and some nights I drink too much.

Next week I'm having another cardiac cath test done again because I'm not sure if it's stress or my heart again.

Yes, my one brother helps a little, but the other craphead brother, who will get 1/3 of the whole estate, does crap -- 0, while I do 90% of the work. So, that makes me angry.

While I know my Mother's only desired is to die in her own home, will it matter in the end where she really dies? We didn't have this super duper Mother daughter relationship. I mean up until age 26 my Mother and I didn't always get along...you know Mothers and daughters -- plus I was a child of the 60s...lol. All my life she's given more respect to my brothers because they were responsible and married and had kids, whereas I never married...which meant what in her mind? I wasn't responsible and didn't have a real life. Thanks.

But then, there are those glimmers of light, where she grabs my hands and say, oh, Rebecca, I don't know how I can ever repay you for all you do for me and the great care you give me. I see how she doesn't want to eat, but because I stress to her if she wants to die in her house, we need to keep her just healthy enough to stay home and she just eats it, even though you can see on her sweet face, she hates it. She does try to please me. Plus, she did a super job of raising us, teaching us things, such as to save and plan, etc, even though mistakes were made; but all parents make mistakes. My folks made lots of mistakes raising us, but they did not have the information, TV shows, news, magazines or knowledge in the 40s & 50s that people in later generations had on knowing how to raise children. It wasn't their fault. They did the best they knew how and that is all anyone can ask.

What's really interesting is, my parents actually raised 4 children. The first born has not been in contact with the family since 95 and even though we contacted him on my Fathers impending death in 99, he found it "inconvenient to come." He is the only one in the family with a Ph.D. Book smart, but life stupid!

More important, Debalee, when your loved one is gone, you will have the memories I have of when my Father died in 1999 and I was his 24/7 caregiver. Slept on the lazy boy in his room & ate there: only thing I didn't do was use the potty chair. My Mother was beside herself on losing him and usually just laid in bed with him.

It didn't last long. Only one week as the doc told us when we brought him home from the hospital. But you know, Debralee, there is no amount of money you could ever give me that would compare to the good thoughts and memories I have from knowing I did the best I could to help my Dad have a good death surrounded by his family, free of pain, in his own bed even laughing and joking the day before he passed.

It is very special -- though sure, damn hard -- to help someone take their last journey. You are doing the best you can and when the journey is over, you will have the satisfaction of knowing you did all you could and the best you could for the person you love. No one can take that from you and there is no replacing it. So, please, while I know it is hard, try to remember, it is worth it. Plus, I believe you will remember the good, not so much the bad.

While I truly do understand it is sometimes hard to figure the rewards of caregiving when you are going through it, believe me, they are there, especially afterward. Also, you have the knowledge of knowing that you were able to do something that so many people were not able to do.

Just one final remark on the question: How has caregiving changed your personality? Well, here I go again on the language...lol...sorry. I am more of a b*tch. Now first let me explain that. I am very proud of the term b*tch. A B___ is a woman who takes nothing from anyone. My caregiving has me so stressed at times, that I'm not taking any crap from any one. You either help me or you get out of my way. Period. I don't care what you think of me right now, my Mother is my primary concern and anything else I don't care about.

There's a saying, "What doesn't kill you makes you stronger."

Inner strength does not come from being a 24/7 caregiver, but from knowing you cannot possible be a 24/7 caregiver!