There isn't anything rewarding about this.

I am tired of hearing there is a Heavenly reward from those who didn't lift a finger for their own elders. They didn't lift a finger during my husband's brain cancer & there was ZERO shaming or life altering demanded. Everytime I go home, I hear, "fix her," from her church friends who also didn't need to lift a finger for their elders. Why is GenX suddenly expected to give up absolutely everything? I want to take vacations, travel, enjoy my new marriage after widowhood, enjoy time with my future grandkids in various states, etc. Next time, I am going to ask them, "How many times did YOU bath your parents? How many times did YOU change their adult diaper? How many nights did YOU stay up while they wandered around the house out of their mind? How many holidays & vacations did YOU forego? How many years did YOU not contribute to your own pension plan or social security? How many years did YOU not have health, dental or vision insurance because you were a caregiver?

OMG! Truer words could not be said. I’m so sick of being told how good of a daughter I am and that I’m doing the right thing. That I’ll be so thankful I was here for my LO during this time. No I won’t!! I get to watch daily the person I loved fall apart and worry that it’s somehow because I’m not doing something right. I get to have siblings not willing to help at all but happy to judge the decisions I make. I get to watch my marriage fall apart because all our time is spent focused on the LO and not each other. I get to watch my own health fade and the years I should enjoy life waste away. If these are my rewards, why are the people around me not helping living a happy wonderful life, taking vacations etc? I can’t imagine that when my LO passes I’ll be anything but traumatized and guilt ridden I somehow failed them. I’m not a great daughter. I’m a sad, lonely, depressed one watching the person they love slowly die.

No there was absolutely nothing rewarding about how I spent the past five years of my life dealing with my parents who were miserable, suspicious, and unappreciative. There were no warm and fuzzy bonding moments, I can assure you of that.

I lived in a state of perpetual anxiety waiting for the other shoe to drop for those years and even though my father is in a nursing home my anxiety still continues. I pray to God to make this misery finally end.

I relate 100%. Some have told me I'm a good son for taking care of my mom. My mom told me on a couple of occasions that I would get the biggest mansion in Heaven when I pass away.

The only thing I've gained from caregiving is mental pain.

Sympathies. I am not an active carer but I manage my mother's finances as her sole surviving relative. She is in a care home. The decrepitude, disintegration and yes rot - is appalling and all I can hope is that she is not aware, although I think she must be even if the point where she can tell me is long gone.

She is unable to speak but just stares, confused. her teeth are rotten - those pre fluoride teeth from 93 years ago. She smells like she is dying from the inside out- may God forgive me, I find myself recoiling. I feel terrible guilt about it. She is lasting a long time in this purgatory.

I understand. I was my mother’s primary caregiver for 10 years before she finally moved into a LTC home in another city closer to my sister.

Last year, I was really struggling. What was hardest for me was the loss of my former identity and sense of isolation; also, the sense that I was perma-stuck. I tried to explain this to a friend who then sent me a card. She wrote that I was a ‘good daughter’ and that I had gone ‘above and beyond the call of duty’. Although it was nice of her to send me the card, she hadn’t really heard me. The card made me feel much worse, and I immediately recycled it.

@littleeskimo

If anyone was calling me and speaking in a baby voice I would tell them where to stick that without hesitation. My goodness, some people. Living a life of abuse and misery is not a 'calling' from God. It's an expectation of a selfish and lazy aging parent who did not plan for their own old-age care needs. Good for you refusing to take that jacka$$'s calls.

I quit taking this one church ladies calls because she was constantly talking to me in a baby voice about how this is my calling from God . and it must be like a vacation only working pt. I said since she thinks it is such a rewarding vacation that she can come over anytime .she shut up.

I got the same, have for years. When someone told me it's such a gift, I thought why don't you walk in my shoes for one day and say that.
But, having said that, after 6 years of sole caregiving for my precious mama with alzheimers, and her death 3 weeks ago, I finally get it. We were always best friends, did everything together, had fun, travelled, all of it. She wasn't difficult, the disease was. Watching her waste away and lose herself was heartbreaking. But bottom line now, as broken as I am, I'm so glad she was here with me, not in a home, and not with my sister or brother who would not have taken her. She was the love of my life, and I got the best of her, precious years shared with her. Despite the pain, exhaustion, burnout, living in prison, I still had her, just like the rest of my life up to now. Everyone has different experiences with alzheimers caregiving. If you haven't done it you can't possibly understand. That's why I'm so thankful for this forum. We all understand, despite different situations. I'm grieving so much, worse than I could have imagined. I've been afraid of her dying for years because I knew how horrible it would be. Well, it's worse. I miss her every minute of the day. But, now I do see what a gift I was given. The mental and physical toll will be years in recovery. My heart will never recover. But she was still here and knew that I loved her and she was safe. She was like a little child and just wanted to be held and loved. At least she had that. Maybe not as much as I should have, but the best I could manage.
I didn't get hospice soon enough. A month after they "signed her up" she died. I had little support when I needed it the most.
So watching my beautiful, full of life, enchanting mother waste away for years was absolute hell. But, the good times, when she was still lucid enough to watch tv and comment on handsome men or silly shows, far outweighed the bad times. The last weeks were the worst, but she always knew me, and as long as she could talk she would say she was ok, even if she wasn't.
I wish I could say magic comforting words, but there are none. This is a mind bending, heart wrenching ordeal to live through.
Try to remember daily that you are caring for her out of love and she knows that.
Im barely functioning, but I will go on and I'll be ok, because that's what I promised her the day she died.
Yes, you're in hell now, but when it's over and she's gone, I think you'll feel that it was worth every minute of pain and torture that you are going through. Actually the day my mama died, as I had been up for 2 nights giving her the pain med every hour, I didn't think I could make another night, and told my sister that very thing. She was on oxygen and in a coma by the last day. She passed less than an hour after the chaplain left that day. She was ready, so weary, so tired. Her little body struggled for so long. She became bedridden one week before she died. That was the beginning of the end.
Please ask for help now. It's true that hospice is not the 6 month timeframe that we hear. They will continue to renew every 6 months. You need help now, while you have time to make sure you're comfortable with the aides that come in, etc. Hospice is a lifeline. I urge you to use it. Your dr can send the orders.
I wish peace to you and yours. It's a long, difficult, lonely road. But you are doing it, and she knows it and is grateful. Whatever you believe, you are not alone. God bless you.

I'm so sorry. The only thing I can tell you is that you're not alone. I'm right there with you. It's debilitating watching a parent age. I'm going through it with my mom. For your own sake please think of your goals and your dreams for the future. You won't be a caregiver forever. It seems like you will be but you won't be. Just know the day will come when you can put yourself first. And there is nothing selfish about that at all. You matter too!

So many good responses here. We had to place my 91 year old widowed father in an AL home. He was not safe living at home alone after several falls - even with an aide coming in 2-3 times a week to drive him to MDs, for shopping and just some companionship.We lived 1700 miles away at that time and I moved in with him for about 2 months during the transition of moving him into assisted living which we slowly introduced him to. (The aide was supposed to do some light housekeeping but he just needed some company so I never complained but my sister - who visited him once a year for 2 days raised hell with the agency and I was livid at her. Here we had someone who was dependable, who he liked and the house was not in bad shape. He lived alone, wasn't cooking, didn't have a pet so really how dirty could it get? Dusty yes but she provided companionship which was most important at that point. So my sister got mad saying she'd like to be paid $25/hour to sit and keep someone company. She has not helped at all since my mother died so how dare her complain about how we were trying to handle the situation from afar!) He also got meals on wheels delivered. I was fortunate that my husband was very helpful and caring but my sister? MIA - off in Europe, still working and earning nice money. That is another story and we no longer speak except when I update her about my Dad. DH & I subsequently moved closer to him and see him about 3 times a week. It's not a state where I'd like to live and at 70 my good years are also limited. It is so sad watching his deterioration. Despite there being activities at his AL home, he does not/will not participate. They manage his meds, have pretty decent food for institutional food in a nice dining room setting for each meal, and from what I observe do try to take good care of the residents. So even though we are fortunate that my Dad can afford an AL facility, there is still a lot to manage - his finances, and we do take him to his MD appts and bring him to our house or out a couple of times a week. It's depressing and exhausting because the dementia has affected his memory and since he does nothing all day conversation is very limited and awkward. Good luck to all of us - this is a very hard road to travel. I often feel like I am living my life around father instead of enjoying what little time I have left (I'm 70 now).

Totally get it. My mom was with us for a year before she had a stroke and had to enter a care facility. She also had light dementia symptoms. We paid a person to take care of her while at my home because I was still working full time. I knew whatever things I did for her was more for her than for me. And I was the only one tasked with taking care of her because my sister was living in California (still). But it was a chore nonetheless for which I knew I would never see a "reward" since all of her financial resources went to the nursing home. I was sort of glad to see her in a facility where she could be cared for 24/7. But nursing home care is not pleasant unfortunately. You have so little to choose from. Fast forward to today, now I have a relative of my boyfriend in my home that we care for 24/7 because she has incurable cancer. The boyfriend felt sorry for her and didnt want her in a nursing home. Basically we are watching and waiting for her to die. She is somewhat mobile thank goodness but still needs SO MUCH CARE. The toileting is the worse for me. I hate it. I hate that she requires so much assistance with everything. We are her maid, cook, chauffer, shopper, gotta get her dressed and undressed, help with toileting, etc, etc, etc. I have to do most of the work because her brother still works, albeit from home, but also doesnt do the gender sensitive things. And sometimes I feel like she doesnt get how much work it is and how much she needs to thank us, regularly. Im at the point that I feel like if I dont get any pay or any "rewards" from her family, Im going to be very pissed off. This is why we all need to plan ahead because it's going to happen to most of us sooner than we anticipate. And those that take care of you need to get those "rewards" because it literally sometimes is the only thing keeping us going. We deserve those rewards. Sorry not Sorry.

I totally understand how you feel. People are always telling me "Your mom is so lucky to have you" or "You got this." Like that's supposed to mitigate the utter mental exhaustion of managing another person's life. (Yes, I'm feeling a bit bitter today.)

Thank You for saying exactly how I am feeling!
There is nothing rewarding about watching my wonderful MIL disappear. She’s alive and at home but it’s not what I would consider living. She’s just rotting away from dementia. Her never ending worry, the inability to make any decisions, the confusion, the anxiety, the catatonic states she gets into, the incontinence, the lack of joy. That’s not living. Not in my book.
My husband and I have been living with her for over 3 years and it’s taken a tremendous toll on my well being. My husband says he’s fine but, I know he is kidding himself. I honestly don’t need or want to hear anyone say thank you or I’m sorry. Those words mean nothing.
It’s just a waiting game for all of us and a horrendous one at that.

Give your mom lots of hugs. Not little sideways hugs, but full on two arm hugs held for at least a full minute. You'll both benefit from them.

@Anthsgirl, this is an international forum for caregivers, so of course you are welcome! I had friends who emigrated to the US from South Africa. There is a definite cultural difference, but watching horrified as our loved ones fade away is the same in any culture.

I'm glad that my comments helped you. I'm taking care of my fourth family member with dementia. So yes, I do get it, and I hope to see you here again.

Welcome. You'll find lots of information and decades of experience. We live in a rural area, there's almost nothing here for caregiver support or dementia patient support. This forum has helped me a lot. Hope the same for you.

Welcome to the forum and thank you for speaking the truth!

For me, the most rewarding thing about the caregiving saga will be the day it ends.

My mom told me I'll get the biggest mansion in Heaven. I'll be getting it sooner instead of later if she keeps working me to death.

Hello again. I want to say thank you to everyone who has commented so far. I also want to apologize for not replying sooner. But, as you all know (and also yet again proving my point), my time is not my own... I want to especially give a big THANK YOU to Fawnby - your comment in particular meant a lot to me. I pretty much always feel like nobody really GETS it, but everything you said tells me that you DEFINITELY "get it." Thank you, so much.

I wanted to try and explain my situation a bit better, but frankly to REALLY explain it, I would need to write an entire novel. And for that, well, I don't have the time, and I wouldn't want to impose on anyone else's time to have to make them read it...

BUT, to be short, at the crux of my problem, is that I am NOT in America. I'm South-African. I joined this forum because I was desperate to talk to people going through the same things that I am going through. However, searching for something similar to this website, based in my own country? Lead me nowhere. So, I created my account nonetheless. Though, as it is, I can obviously only vent, on here. There are no resources or help at my disposal.

Me and my parents are "state patients," here in wonderful South-Africa. Which is to say, we are dependent on public health "care," and also everything else that is state owned and ran. What that boils down to, is, well...to put it bluntly, public health, here? Is basically the worst horror movies you've seen your entire life, all rolled into one, multiplied by about a hundred... And, like I said, that's just the tip of the iceberg, but I just wanted to point out that the suggestions of help, unfortunately won't help me. I mostly just want to be able to talk to someone else.
I do hope it's okay for me to be on this forum, despite not being U.S based, myself.

The next time someone says this to you ….
Ask them when they are coming over so you can “ reward “ yourself with a day off .
I bet they won’t say it anymore.

@Drivingdaisy

With all due respect to you, I did in-home caregiving for 25 years as my employent. Many of those years were through homecare agencies.

Caregiving part-time for a little extra money maybe can be rewarding. When you have to make a living at it, that changes it.

I've had clients who were nice and we had many good times together. Those are the clients who only need some companionship. There's no actual work involved. Trust me, there's nothing rewarding about having the contents of a soiled diaper thrown at you by a stubborn, demented elder who doesn't want to change. Now factor in the verbal abuse along with it. I've had too many of these people on my service to use the term rewarding.

Why I took care of my mom (who got really nasty with and to me in her last years) was strictly for my own internal “reward.” I can sleep at ease with myself knowing I didn’t shirk doing what I could for her. BUT, I didn’t do more than I reasonably could. I sold her last home, used her money as she would have wished it used for her care, followed her guidelines for where/how she would live (an assisted living she, herself, had chosen even though she totally forgot about that and blamed me), etc. I never personally took her to the bathroom nor any other hands-on care.

Big primary thing I did consider my responsibility, and gladly took on, was seeing to the care and rehoming of her cat.

I did not find caring for my mother rewarding. I actually found that I am not a Caregiver. I am a person that likes a place for everything and everything in its place. Dementia is so unpredictable. You never know what they will do. I did not do well with that. I did not like bathing her and hated toileting and cleaning up. She was basically easy, but it was all on me and at 65 at the time, I was a Senior too. I placed her in a nice AL after 2 yrs of her living with me.

I believe people say these things due to their own fears of needing care someday , and either worries or assumptions of how they will get care.

There is still a societal expectation to care for a parent . These people are perpetuating it.

Sorry, but I found caregiveing though a company, very rewarding, I got very attached to my clients, and learned a lot.

As for my mom, Ive learned so much , about me and my family dynamics, I wouldnt trade what I've been though, except maybe, that it took me so long to learn.

There's nothing rewarding about it. I did it for 25 years as employment, I own a homecare business, and was a care slave to a parent for a long time. Nothing rewarding here. Not a damn thing.

You don't have to do it anymore. Put her in LTC or bring in more homecare staff. There's options. You have choices.

Someone wisely said, 'Don't light yourself on fire to keep someone else warm'. This is true. What happens to your mother if the stress and misery of caregiving causes you to get sick or have a heart-attack? Something like 50% of caregivers die before the person they are caregiving for. Your mother wouldn't want that for you.

Look at your options. Don't be guilted into continuing in caregiving when you didn't do anything wrong. Good luck.

100% agree with this. There is no "reward" that would make up for the toll this has taken on not only my mom (she had a brain aneurysm in may 2022) and myself, who has been the sole 24/7 caregiver since then.

Parkinson's with associated cognitive problems and extreme fatigue is mentally exhausting for me at times. My husband is either mostly non-verbal, attention of a gnat, and occasionally nods or shakes head to answer basic questions (are you hungry/thirsty); or on good days he understands what's going on, can talk to communicate basic wants or ideas.
He hasn't wanted to get out of bed since July 2024. The procedure of hoyer lift to wheelchair is too painful.

The waves between good days and bad days is the worst roller coaster ride. I'm sure for him as well as me. On the good days he gets mad about being turned, cleaned, diaper changes. He recently tried to whack me on the side of the head. First time and hopefully only time.
I want the good days without complaints, but that's not possible.

It's been 26 months since non ambulatory, and no, it's not rewarding in the least. I love him, and have gotten in home help. I will get more help as his needs increase. It's laborious. That's why it's called Labors of Love.

So agree! Many have said to me "You will get your reward in heaven"...I say the hail with that!