What is the one thing that bothers you the most about caregiving?

After close to a decade of this, losing myself totally. I know sometime in the past I did laugh,go out. It seems like a different person now. I wake up and go to sleep:How is she? Where is she? How many explosions (verbal) will there be? Is every single one of her physical and emotional needs being met? I feel selfish saying this, but, darn, sometimes I miss living.

Keepingup,
I completely understand except I am 5 years in ( living with her, not counting the rescues prior ) and I am really getting to the point where I am just not sure how much longer I can keep doing this all on my own, my own mental/physical health is really starting to show the damage this is having on me. I am actively looking for alternatives now before I become so bad, I am useless to help her in anyway. Now ALF’s are looking pretty good to me but where I live, anything to do with eldercare is a fortune! That is why I have taken all this on, so she doesn’t go broke because she won’t qualify for State Assistance, makes too much in her SS check but not nearly enough to afford outside help without blowing through what little money I have been trying to protect for the “just in case.” I gotta do something though, this is gonna end up destroying me.

Rainey69 call in help for maybe 2 days a week for a couple of hrs, just to give you a break. Some service ‘s are only 15:00 an hr and up. So that would be 60:00 a week. That’s not all that much. You say her SS check she makes too much, then use that for her in home help. Lots of services cater to just that kind of help, or bringing in just someone to clean. Your at caregiver burn out. Do something to help you out. Good luck Yuki

Yuki500,
She needs ‘constant watching” now, the rate where I live (and I worked as a caregiver so I know) is 30 an hour with a 3 hr minimum. That adds up fast! 3 hrs here and there is not helping the situation. I cannot keep going with an adult who’s mind is that of a 2 year old that cannot be trusted to be safe left alone anymore. She is getting way worse and I am running on fumes. She will be gone soon and I am not yet 50. Should I continue to allow my health, mental and financial state suffer until I am the one who ends up useless from the toll of the stress? I am smart enough to know “the time has come” and it is best for both of us.
I do not want to end up resenting her for the last bit of her life and I am getting there quickly. Everytime I check on her she is doing something she shouldn’t be doing. She is a major fall risk and memory almost gone. It’s like talking to a wall.

rainey - I have been wondering how you are. Things are getting worse, I see you mentioned above that your mum's income is too great for medicaid. This article explains about a Miller Trust for just that situation. I hope it is helpful for you. Keeping looking for alternatives!!! Some people are able to get aides in for a few hours a week -anything will help. Mum's money should be used for her care. Take care.

The unrelenting loneliness! Never having a coherent conversation except with health care providers. I actually started counseling just to have someone to talk with. The luxury of speaking with someone who can respond and keep the conversation going is worth more than the out of pocket cost!!!

Hi Golden,
Yes, she has become MUCH WORSE. My health is going down the toilet, too many traumas, I saved her money as long as I could for the day that she became a danger to be left alone and needed to be cared for 24/7. I gave her 5 good years of living and spoiling her.
I saved her life numerous times, gave up my career, health coverage, put a huge strain on my marriage, my sanity, dealing with my screwed up family, a few hours a day @ 100 a day isn’t going to help me nor her finances. If I put her in a facility, I can rent out her cottage which will greatly help paying for her care. If she stays, it is just more money going out with nothing to “offset the cost.” I am a pretty smart gal, worked as a caregiver for a major franchise for 3 years, I know enough to know when the time has come. * HUGS GOLDEN * To me, you are always an amazing woman I admire greatly! 🤩

Oh rainey (((hugs))))) and thx. I am sorry she is much worse. I think putting her in a facility is a great idea. You need to get your life and sanity back. Glad to hear you are moving in that direction. Good for you!

For me, the hardest thing is trying to figure out how much help my mom wants/needs. One week she asks me to take over monitoring her meds and the next week she is accusing me of thinking she isn't capable of doing anything. It seems there is a constant change between her wanting help and her yelling at me for trying to help. It is so very exhausting!!

Thanks Golden,
Your words are always reassuring! Spoke to her sister for a while today, she is still working as an RN in a very nice ALF in Chicago, she is 80!!!!
Sharp as a tack and in great physical shape even after going through two breast cancer surgeries, she is a marvel. Told her all the latest and she said she agreed this was the best plan under the new circumstances. She had phoned Mom on Sunday to wish her a “Happy Easter” and Mom asked her the names of her kids and how they were doing. My Aunt has never had children. *Yikes* 🤭
So, she just kept quiet and redirected her.
Mom of course was very unhappy when I tried having “the talk” because who really volunteers to go to an ALF, but I tried reminding her that before she ever moved in with my husband and I, I was completely honest and told her if she ever got to the point where she needed 24/7 care for her safety, I would not be able to do it and would have to put her in a facility. I never led her to think otherwise. I cannot worry about her if I am doing laundry, cleaning the house, taking a shower, making a quick run somewhere or going to sleep at night. When I am not feeling well, how can I care for myself? I know she will forget “the talk” and it won’t gel until I start taking her on tours of facilities. Oh how I dread if she has a meltdown. 🙏🏻

DonnaMae,
I know what you mean. There were many times I did not know how much to help and when to back off. Very confusing when they go back and forth. You just have to use your best judgement and if she snipes at you, then step back and observe (out of the corner of your eye if neccessary) and see how she does. Don’t let on you are watching her, pretend to be busy with something else and let her “do her thing.” Then you can see if she is struggling or if she is truly capable. This could change in a week of course! LOL! Unfortunately, behaviors can always morph and I have learned you have to reconcile with this fact. I have been through A LOT with Mom for 5+ years, her stubborness, denial, ignoring my requests, her calling me to help change her lightbulbs, appliance troubles, etc. Hang in there, nothing lasts forever. Do ask her not to yell at you, you deserve respect as well.

The feeling of being under-appreciated. Mom lives with me and I have done everything to make her feel safe and secure while holding down a full time job. My brother who lives 3hrs. away hasn't been to see her once in 4 years and my Sister lives out of state but will only fly her to see her if its' on Mom's dime (which she doesn't have) Both only work once in awhile part time. But....according to Mom they work sooooooo hard and are soooooooo busy. I get the mean tongue while the sun seems to rise and shine on my Brother and Sister's bottoms. Sometimes I get so mad and depressed I just cry. If I say anything against either sibling, Mom blows up at me so I just keep my mouth shut and hold it all in. I would like it just once if Mom acknowledged that I work un-godly hours (12-13hrs shifts, midnight shift) and do everything around the house on top of that. Thank God for this website so I can vent. God Bless all the Caretakers out there.

Yes, Sergeant1201, the toughest part for me is also that I'm not appreciated. I have one brother who didn't see my parents for over 5 years at one point (about a decade ago). My father's gone now. This brother is currently going on 16 months since he's bothered to come down and see my mother. The other two brothers come down more, but stay for very short visits. It's now going on four months since anyone's been down to see my mother.

I am not allowed to say a word against them. They are all so "busy"! We took my mother out to a park for Easter, and she told me later that day (when I took her to church) to make sure to thank my husband for doing that. *I* did it, too, but I don't count. I'm just the Dummy Driver Daughter!

(But at least she doesn't live with me, and never will. I am also not going to provide any type of personal care for her. She will have to pay herself for that kind of help. She has the money and can afford it.)

I know that one too. My brothers are “Oh so busy” while I gave up my career to be her fulltime caregiver. She never acknowleges the toll this is taking on me mentally, physically and financially. One of my brothers is on permanent disability! I can’t even go down that road anymore with her, it’s pointless and just gets my dander up again.

I am convinced caregiving can be an incredibly thankless job for many. The lucky “chosen one” or, the only one left standing when the other siblings have fled or made their excuses, why does the parent continue to sing their praises when they do nothing? Maddening. Here we are, beating our brains out trying to keep them safe, happy, comfortable at the expense of our own lives, happiness and freedom and what do we get? Ignored, scowled at, snapped at, if we stand up to them we are “dismissed” because they don’t want to hear our frustrations.
Now that I told Mom she needs to go to an ALF because I cannot watch her 24/7 365, now she LOVES me and is begging to stay. Too late. Too many accidents, ignoring my constant pleas to do the right things to keep her safe. It’s sad because it’s like a kid saying, “I promise to be good now.” She cannot understand that she is not safe alone anymore and she has used up all her second chances. Now I will go back to being the bad one because I alone will be the one choosing and placing her in a facility for her safety. I know she will think I am punishing her instead of remembering all the times I saved her, spoiled her rotten, sacrificed so much, saved her lots of money and handled everything for her while my brothers did zero.
That is why I feel it is thankless. The ones who are the caregivers get criticized, blamed, accused by siblings who don’t have a clue what we go through everyday but never offer to take them out for the day, ask us if they can help out, spend enough time with them to see for themselves how much their parents have declined giving them a tiny glimpse of what we deal with every single day.
I am so jealous of the siblings that are close and all take part in pitching in to help each other out. Wish I had been born into one of those families.

rainey - stick to your guns...

Golden,
Oh believe me I am, no turning back no matter how she cries. She never saw fit to defend me, care about the sacrifices I made so I will do this and know
A) It IS the right thing to do under present mental capacity
B) If I don’t, it will be my own demise physically as well as mentally.

I have done as I promised, I will sleep better than I have since I took this on.

******Hugs ***** My conscious in clear. 😁
Thank you for your support, it means a lot to me!

Rainey and Sergeant, God bless you two! I could not do it; we had my mom for 3 years when she was mobile/driving and in better shape; it didn't work for any of us. So I know we won't be taking her if she keeps going downhill, as she's been doing lately. After reading how hard it was/is on you all, and how unappreciated (I, too, hear about my totally absent, not even calling, EVER, brother from her), it cements that determination. I know two ladies whose kids have kept them in very nice ALs for years now; they do what they can and visit as often as they can - even the out of state ones. This is what will happen with my mom if she continues to decline, tho it will be NH for her, I think by then. I love my mom enough not to become her caregiver/enemy, which is so easy to do. If guilt rises up, SWAT it, and enjoy your new life!

Thanks Mally,
You are a wise woman to know your limitations, wish I could have known mine before going down this long and nightmarish road.
Looking forward to getting my life back again!

This thread really hits home. Thank you all for sharing it helps me to turn here at difficult times. Caregivers so often become “the enemy”. My mom seemed to change with the flip of a switch. So mean.. I was.. caring for her until she turned mean to me and my family. She is siding with a spoiled entitled adult child that disappeared from the family for years after stealing most of my parents nest egg. Now my father passed and this irresponsible adult child comes back and mother is “running” with her staying out all night drinking, smoking and gambling. Guess I should be happy mom is having a good time. But l am saddened at times how I was shut out and treated like the bad guy. Guess I should have kept my opinions to myself but was.. trying to watch out for my mother. At any rate I choose to stay away and never step foot in their town again. I’ve received so much valuable help here. Yes, getting my life back and it was literally a nightmare at times. A new awakening now. Many wise folks here. Thanks to all on this forum and stay strong.

I am with you all. My mom is currently living with me but is able to do for herself (92). And we enjoy each other much of the time, but she switches and says snide under-her-breath comments, which anger me so much. I was always her "golden child" out of 2, and mom always talked about everyone else to me. My brother died a few years ago, and I gave up a perfectly good job to live back near home, but I chose a different city 3 hours away which I love and have lived in before. I am back to working full-time, albeit out of my home. My mother lives with me now but as a narcissist, she is difficult to be with, still talks about others and tries to have things her way. But I have been incorporating boundaries, and at some point, there will be ALF in her future. She doesn't know that, but I do. I have limits and wants and needs, also.

Oh my gosh yes, it always ends up turning into a game of "well my problem is worse than your problem because..." and just ends up turning into a huge argument.

I hate crying, absolutely hate it, despise it, and loath it. My mom is an emotional person and sometimes she ends up crying due to either physical or emotional pain. Also, moaning in pain, right up there with my hatred of crying.

Becoming the worst version of yourself after years of stress, worry and being trapped. I used to be fun, enthusiastic, creative, adventurous, looked forward to things, now I DREAD waking up everyday wondering what will happen with Mom today. Getting her into an ALF can’t come soon enough for me.

Rainey69, You know, it would be so fun to have our Moms in ALF and all of us get together for a vacation, a cruise, a something, and just laugh and relax !!!

Myownlife,
Funny I was just thinking that there should be a get together for all the caregivers that was a nice vacation like Maui or some other lovely peaceful place where we could all rest and have fun that we really do deserve after all these years of servitude. Great idea! 🍹🏝 🎉 💃

I wish we could all get away! I'm accepting that my life is basically over - mom is declining and so is my health. It's all about her, and my duty to her. There is no money for a nursing home, and she would give up quickly if I placed her, and my daughter would never forgive me for that, as she is very close to her grandmother.

Then after caregiving will be the long grieving. (Yes, I've tried antidepressants, and they do not work for me and have horrible side effects). No chance of a career for me, or even a decent job. It is what it is, and all I can do is pray for peace, and I literally pray for cancer so that I die before needing a caregiver.  My daugher is not going to be allowed to sacrifice her life, and that is what we caregivers do, and there is no end in sight, at least for me.  What remains of my life is defined by caregiving. I don't feel like a person any more, just a servant to my family. 

DANA235,

You NEED to give yourself some respite, somehow. Urgently.
And you NEED to start taking care of yourself. Urgently.

You’ve truly given up on life and are experiencing a deep depression, help yourself Dana! Please commit to do something for you everyday, can you go for a walk for half hour in the morning and then go get coffee, see a friend or get a manicure for an hour or so in the afternoon? Something that you enjoy and doesn’t require a long time away, but you NEED this, please trust me.
Your daughter if nearby and who loves  her grandma...and loves YOU! Will likely be glad to stay with her while you do that. Right?

Don’t pray for cancer! you are praying for it so your daughter doesn’t have to sacrifice herself to care for you...yet, do you know how hard and traumatizing it is to see your loved one deal with the monstrously of cancer?? And then die?

If you want to help and protect your daughter, do it by helping and protecting yourself!!
I’d suggest look for a therapist ASAP! But I don’t think you will, so please at least do some of what I’m suggesting, go for walks, breath! Smile, find the bright side of life in the small things.
I pray your find the strength to help yourself!!

Dana,

I agree with Roses003. Your life is not over.. do not let guilt and caregiving do this to you. Your life is just as important as anyone else.. even your mother. No one should have to give up their life to keep another going on and on.

You aren't going to do your mom any good in the long run if you don't take care of yourself first.

I relate to your post as I have also had very low times through my caregiving journey. Please realize that your life matters. You need to get away.. you can grow from this experience if you take the right path.

Please reach out and get help!

((Hugs))

Dear Dana , we’ve all been where your at. Believe me it’s hard work, and ,no thank you’s. I know. But you have to take a step back, and say I’M worth it. I need to start taking care of me! I agree with everyone one this site. I was there right where your at. Stop and even if it’s just having a glass of wine and bubble bath, go do for your self! Yuki

Rosses003, Katiekay, Yuki500, thanks. I do have a therapist - we do phone sessions because I cannot leave Mom unless I have a sitter. Mom has limited mobility and vascular dementia, and if I leave her, there's a chance I'll find her on the floor. I do try to take breaks when I can, get a sitter, a little time at the gym, or just to the library or bookstore. Work, even only three days a week, is a saving grace because, awful as it is to say, it gets me out of the house. Speaking of, the house is a wreck, and I have no energy or motivation to tidy up or clean, and that makes Mom more depressed because she always kept a perfect house. She cries all the time and says she feels so bad about being a burden to me, and I say she isn't, that she took care of me and helped raise my daughter, and now I take care of her.

My daughter is going to college out of state and in a very demanding program. She's going to summer school, and I am not going to ask her for any help with caregiving. Eventually, I'll probably have to sell the house and place Mom in a nursing home. She's in rehab now after a UTI, to get her strength back, and she needs two people to transfer. I can't handle this. I have a wonderful aide who comes three days a week, when I'm at work, to help with Mom but that's not enough. I don't know, maybe if I hire more help I can keep her at home longer. I know Mom thinks a nursing home would be a place to die, and she is right. Some thrive with the activities there, but when I've gone out of town briefly and placed her for respite, she just sits in her room and watches TV. She reads still, but that's becoming more difficult.

Maybe it's depression, and the drugs don't work for me; I've tried. But I think it's just reality. There will not be much left of me when caregiving ends. All I can do is pray for strength to get through one more day.

When I say I pray for cancer, I do not take that lightly. Mom and I took care of my Dad when he had cancer; she did most of it the first time, took him to his chemo treatments, and he had four good years. When it returned, he only lived two months, and I did more of it. We were both with him when he died. Both depressed after that, but life went on. I get none of the cancer screenings, and if I get it, I will be honest with my daughter about why. There was something left after caring for Dad, there will be very little after Mom. It's been suggested to pray for a servant's heart, and I have to admit I've been resisting that. But being in this situation, I am meant to be a servant to my family. I just hope I can hold out long enough to see my mother through to the end, and my daughter through college. I just hope she finds a partner; she has no family but me and my mother. My health is declining, migraines getting worse, and I am terrified of a stroke and winding up with vascular dementia like Mom. Can you see why I would prefer cancer so I can move to Oregon? I'm already on more antihypertensive medication than Mom, and I was so healthy before caregiving; I used to run half marathons and now, barely walk a mile or two.

Thank you for giving me a place to vent. Now it's off to see Mom in rehab and literally beg them to keep her another week, or maybe I'll put her in respite for a week, though if I do that I'm afraid I might not be able to bring her home.

Came across this today, and seems appropriate for those days I feel I just cannot go on with caregiving, but must, and have to accept that my life is being a servant to my family. Maybe some day I'll see it all as rewarding, but right now, it feels like a long and difficult penance.

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the things which you think you cannot do.”

— Eleanor Roosevelt

Dear Dana,

Both of you, your mom and you, are trapped by depression, and I think you know that very well. That is why you see all dark and she does too, well, aside from all the physical limitations your mom has, which are a very understandable reason for her to be so depressed too.

You know Dana, you may have heard this on this site many times but it’s true. Not everyone is built for caregiving. And someone that has a hard time with depression is not meant for caregiving, no matter how much you want to do it.

Because what happens when we do something we’re not made for is that things start to get out of control, and that affects the person doing them and, in the case of caregiving, also the person we’re caring for.

I can relate to what you say about your mom always keeping the house in perfect shape and you not having the energy to do the same. It is interesting when you stop living with a person for several years (in my case probably about 18 years) when you live together again you discover or remember many aspects of their personality or their ways that you didn’t before. In my case it was how neat my mom likes everything to be, and I mean neat. Great order everywhere all the time is very important for her. I can perfectly live cleaning the house once a week, but my mom cannot. And to her point, where we are it seems like dust flies everywhere so it accumulates more easily; yet, that doesn’t bother me and probably would not bother many, but It actually makes her ill when things are not in the shape she likes them to be (and it is her house, her environment).

I’m telling you this, so you realize that you are right, and even the fact that her house, her environment, is not in the shape she would like it to be makes her most definitely more depressed. And you simply cannot give anymore.

And that’s one tiny example of things that another person could do, because that’s what they do for living in an outside care facility, that you cannot. 
I understand it breaks your heart to think about that possibility, but sometimes we are terribly mistaken thinking we are doing the best we can do, when there’s another option that actually could work much better. So, I’d say, why don’t you give it a try to place your mom where she’d be well taken care of, and it doesn’t matter if she doesn’t participate in their activities, the mere fact that she will be attended to, in a clean and orderly environment, and YOU coming to be with her every day if you want, spending quality time with her...I think that, after a while might start feeling like the right choice for her and for you.

When one is becoming empty, no matter how much you try to give, it really makes you feel worse because you literally have nothing to give other than your good intentions. Maybe it is time to take a step back and re assess the situation, don’t you think?

Is your mom going to feel like you don’t want to take care of her, that she is too much of a burden, that she’s been left to die in that new place? Maybe..at the beginning. But if you say she says she wishes she wasn’t such a burden for you, I think she will feel relieved, as a mother, to not be that burden anymore, something inside her might really appreciate that and feel relieved.  And if she sees you are doing better, looking better, I think she will feel better as well!

All I’m suggesting is to give it a try, a good try. And go be with her everyday, take her out, talk to her. Become her daughter, friend and companion again, I think that gets lost when we caregive. That I’m sure would light her life up and yours again!

You might be inclined to immediately discard the suggestion, because when we are depressed and in such a deeply complex situation we don’t think there’s another way. Yet, remember others that are not living the darkness you both are, may see what you don’t.

Think about it. When one is not made for caregiving (physically, emotionally, mentally) one needs to accept it, and do something about it, for your loved one and for you.