Long distance caregiver guilt—feelings of not doing enough. Any advice on dealing with these feelings?

Thanks to all for your encouragement and advice. It is so appreciated and I am extremely grateful for this forum. Update: The ankle surgery went well, and mom even agreed to spend a week in a rehab facility at the doctor’s suggestion. She hated it, but I tried to keep her spirits up by sending flowers and treats, calling daily and helping her again get home health set up.

I put her in the drivers seat with home health as so many of you recommended, and that was going well. I felt optimistic for the first time in months. She sounded great when I talked to her this weekend and was so happy to be home.

fast forward to today. Seemingly out of nowhere, she was having a great deal of pain in her back and chest, and once again went to the ER via ambulance. Once again the scramble to make sure her husband had someone to stay with him. Again I am on the phone for most of the day talking to care coordinators, my siblings and home health. Again hoping my job will understand because I cannot work and deal with a crisis at the same time.

Surprisingly, I’m not feeling the pangs of guilt for living so far away. Instead I have anxiety and feelings that no matter what I do, things don’t seem to get better. I am certain that going back to the hospital was the right thing to do, and I am grateful that she realized she needed to go.

That said, I feel a profound sadness. I feel afraid to relax or allow myself to feel happy, because the moment I do, some other crisis comes up. Worse than that, I am starting to feel like a terrible person because I feel resentment for the constant state of crisis. So many people deal with far worse situations than this, and who am I to complain? I don’t resent my mom—this is not her fault—but I find I resent having a crisis to deal with just when I feel like I can start living my own life again. New guilt! Yay!

I hate feeling the way I feel, and I know I need to let go and let things unfold. She is receiving care. The doctors are working to get to the bottom of things. I already have connected with the social worker and home health. I am hoping that the timing is just a coincidence, but I can’t help but feel like we are going to keep living in this state of crisis. I used to be a really happy, optimistic person, but the sadness and resentment are creeping back in.

I don’t know what kind of advice to ask for. I just feel so grateful to have this forum where I can be honest about what I am feeling and hope that there is someone else out there who understands. I wish I could be more loving and gracious, vs the resentful sad person I am becoming, I appreciate everyone for listening. Thank you for being here.

Why don't you take a short trip to see your dear mom? You obviously love her very, very much. And you're very, very worried. I think seeing the result of all the good you've done, and just spending time together will be medicine to your soul.

Treecrout,

Good Lord girl!! When I read thru the list of things you've been able to accomplish from a distance, the answer is "Yes"! You're doing all you can!

Mom, is going to recover soon, but if you keep beating yourself up you're going to end up exhausted!

Please take care of yourself!!

Imho, please do not hold onto guilt. I moved in with my mother. I don't advocate an out of state care job. That was really hard. Prayers sent.

71 is YOUNG, for crying out loud. Let your mother take care of herself. It's nice she has your brothers' and your help during this crisis, but when she has healed, she should be on her own again. You can re-visit your guilt when she is 85/90 by which time I hope she and you - her children - will have figured out a care program. Of course people don't age at the same rate, or are equally healthy, but in my experience with my contemporaries in their late 70s -- we are all taking care of ourselves and not expecting anyone else to do it for us and we have plans laid out for ourselves. We are lucky, for sure, but considering a relatively healthy person 'old' and in need of help at 71 is just not called for. Lose the guilt. Live your life. As far as your MIL is concerned, unless she has a daughter, I think she is setting you up to take her in, in the future. Better nip that in the bud. You can love, you can care, you can help, but you have to preserve your own life.

My dear, it sounds like you are going above and beyond and I praise you for that. Have you talked to your brothers about your feelings? I can say from my experience that a call, text, FaceTime or even a card would have meant the world to me when I cared for my Mom. I did not receive any help, calls, texts or cards from my sibling. Your mother in law is thinking of a woman taking care of a woman. I can see that if your Mom needed bathing, she would want a daughter to help. I would keep open communication with your Mom and brothers. As far as her husband, does he have family? They should be chipping in to help him too. God bless you for caring so much!

I have thought alot before answering this. There will be alot of your parents should have planned, walk away, etc.

While I do not disagree, I think the most important thing you can do is listen to the hands on siblings and show empathy to their daily struggles. This is not to discount what you do but there is a huge difference. Sometimes the hands on person has a bad day and it is nice to have someone listen.

Wow, this reminds me of my childhood. From age 6 sister and I did all the house cleaning, helped with meals, did the dishes, made the beds, helped with laundry.

My brothers emptied the trash one a week and complained about that!

Based on my experience helping my aged parents I think you have been doing the lions share. I agree with other comments that your mother should be taking on some of the tasks. Don’t count her out yet. If you are doing all this now what will it be like in 10-15 years?

Please don’t give up your life in Florida.

This may make you chuckle.. when my out of town sib hears my future plans to move... "But you'll be staying near them! (The aging & disabled ones) You'll stay in town! Or edge of town! Or close by! You won't want to be far away! You can't move further away....you're the close one!!!!"

Then the penny dropped.

I am not a long distance caregiver but how dare someone tell you that it is YOUR responsibility because you are a "girl"....really, that is old fashioned.  Honestly I think you are doing the majority of the work because setting up appts, getting things arranged, making all the calls is the most frustrating stuff to handle.  take to doctors appts is a breeze compared to dealing with people over the phone.  Do NOT feel guilty......you are doing way more than 75% of the work.  When you don't have anything to do for a couple days (no calls, etc).......unplug by listening to your favorite music, sit and watch birds (if you like to), watch some old movies you like, etc.  take a walk or a drive somewhere where you can sit and watch or just relax.  Thank goodness you have brothers that are there to take her to appts.  that is a big load off your mind.  Hope others will be able to give you some suggestions, but don't let the mother-in-law say you are responsible for all of it.  that's not true.  wishing you luck.

I am lucky (or unlucky) enough to be the only 'allowed' caregiver since my grandma has dementia/ Alzheimer's. There were plenty of times where I just needed one person to make one phone call for me and was frustrated to tears that no one else would make that call on behalf of grandma and they don't. So, you are doing more than you know for those people that are in-person caregivers. Don't burn yourself out now. It's a marathon, not a sprint. Keep up the good work.

You're probably going to throw something at me when I say this, but have you ever thought about how your parent's wellbeing in old age isn't actually your duty? Don't let anyone tell you otherwise. You're probably getting older now yourself and have kids/other duties to attend to. Could your parents have raised you while taking care of their old needy parents for 5-15 years straight? No. This is a new dilemma younger people are facing this generation, thanks to medical science keeping people alive longer with chronic conditions and turning them into big toddlers who are unable to keep on living on their own. Even a baby starts to do stuff itself after a couple of years. My parents never had to look after their parents, but I've spent plenty of time looking after them already.

Stop caregiving altogether, and have them pay for their own caregiving. I've actually come to the conclusion that we shouldn't have to do all of this old age caregiving, especially with no pay whatsoever and our already limited free time.

Don't get me wrong, I love my parents, but it's just not my responsibility to do everything for them. If they don't have enough saved up to pay for help, then you need plenty of family members to divvy up the work equally, and take turns. Of course, you're just too far away to give in-home care and I don't think anyone should tell you otherwise.

You are doing many of the important and time-consuming tasks that must be done when caring for elderly parents. I am the primary, hands-on caregiver for my mother who is now living with me, but I can’t tell you how much my sister & brother-in-law in another state have helped from that distance! I could not be doing this without their support & encouragement. When I need something researched or a product ordered that would help with care, they get right on it. I know my sister feels guilty living so far away and not being able to share the on-site tasks, but I wish she wouldn’t. I can call to vent, also, which goes a long way to maintaining my sanity. ;-) When they offer to pay for a few hours of respite care each week or a housekeeper to ease my burdens, it blesses me beyond measure. We haven’t done those things yet, but just knowing they are available helps me breath easier.

Team work can look a lot of different ways—for your mom, it seems like your brothers and you are all doing parts to care for your mom. Congratulations to you all—from what I see, that is rare! Please don’t use your energy on guilt. Know that you are stepping up in a valuable way. You owe your MIL no explanation; do not give her the power to make you feel badly about yourself. No one owes anyone caregiving. We step up because it is what we “choose,” not what we “owe.” (Although there can be many reasons, some healthy, some not, for choosing to care give, and a good therapist can help us figure those out, because it can be complicated.) Stay in touch with your brothers & mom to learn what the needs are and continue doing what you can. No place for guilt. You’re doing great!

Your mother in law should butt out. Where is it written that only the daughter can be a caregiver? And if she brings it up again, ask her if she will have any thing negative to say if you leave your husband (her son) to go take care of your mom.

Just continue doing what you're doing. All of those things make it easier for the brothers to do the physical work. Keep the communication open with the brothers so that mom's needs are reevaluated as this goes along. Other decisions can be made for her living arrangement and care as things change

Guilt is for people who are doing something wrong. You're not. BUT, it's inherent in our humanness to feel 'responsible' and it sure doesn't help when someone criticizes you for really doing your best.

My MIL would pick at me, always asking ONLY about my troubled brother and sister and kooky mom, never anyone else. And then she'd go on to critically put me down for not doing better, or more. Of course, she had no idea what went on inside the dynamics of my family. When she also began to criticize how I was raising my kids--OK, that was the last straw.

Ignore the nay-sayers and do what you reasonably CAN, and try to find ways to outsource as much as you can. If mom (who is only a few years older than I am!!) cannot work out some of the basics of living w/o you, ask her if she'd feel better in some kind of ALF. Chances are she'll step up and do for herself more if she knows the only other possibility is group living...

I stopped talking to or being involved with my MIL almost a year ago. Slowly, after 45 years of her nonstop nastiness, I am coming to lose the 'guilt' I would always feel when DH would slog up to her house, spending an entire day being yelled at and then slogging home, depressed and anxious b/c he didn't have ME there to buffer the comments.

I am finding that if I do not put myself first, NOBODY else does. Literally. It's been a hard lesson to learn, but an important one. I am quite sure I will be a fairly young widow and my kids do NOT want to be in charge of my life.

Guilt is one of those 'useless emotions' along with anger. So hard to process and put away. But unless you have actively hurt your mom, you have NOTHING to be 'guilty about'.

Your feelings of guilt and not doing enough are irrational. Your mother has two sons nearby. Just because you are her daughter does not mean you have to assume the gender roles she has in mind. I agree that she may be grooming you to leave your life in Florida - don't do it!

There may come a time when you and your brothers must have a frank conversation about what's called the charade of independence, which means that you, your brothers, and others are propping them up but they truly are no longer independent.

Your mother has a broken ankle and her husband has dementia. That is a lot for anyone to manage especially because their needs are so different. Who has durable power of attorney both medical and financial for both your mother and her husband? In my opinion, it is a bad idea for anyone to take on the responsibility of caregiving - long distance, nearby or under the same roof - without having the authority to make decisions.

Your mother must consult an attorney and get her and her husband's important paperwork done i.e. living will, DPOA, will. Especially in the age of COVID, not having a clear understanding of end of life wishes only makes things harder.

You can help a lot from Florida. You can get their budget together and get an understanding of what they can afford to pay toward the assistance they need. Ideally, an ALF with memory care (should her husband need it) would be ideal. You also can hire a geriatric care manager in her state who knows the ins and outs of entitlements and benefits of which you can help them avail themselves.

My biggest message to you is this: be objective about your mother's and her husband's respective situations and do not get sucked into enabling a charade of independence. Based on everything I've learned from this forum, it only ends badly for all involved.

I am experiencing a very similar situation with my 85 YO mother who lives 200 miles away. My brother and three grown grandchildren all live within minutes of her but she calls me when she's in distress and says there's no-one to help her. A big part of the problem is that she doesn't want to ask them for help and expects it from me since I am her daughter. There's a well-worn path between her house and mine, but each time I go to help or visit I feel like I have not accomplished much of anything, and leaving has become very difficult.
While the burden of guilt may be somewhat self-imposed, it is very real. Many people have told me I am doing the best I can and that no matter what, I should not feel guilty, but I do.
I don't have any real answers but I do believe we need to "give ourselves a break" emotionally so that we don't squander our own health and well-being. It is truly one of the most difficult things I have experienced, and from what I have read here, the same goes for many people. Just know that you are not alone.

'I have had a few people express concern that they feel I am running myself down, but I still feel like if I can’t solve all of the problems, I am not helping. I know this is an impossible task, but I still feel terrible and like it is somehow my fault.'

I understand how you feel as I feel the same and my mother lives down the road, so it's not just a matter of distance! Since my mum moved near us she has given up any independence she had, although it's true she is 86, not 71. But she still expects us to do things that she was doing for herself till she moved, so moving closer is not always the solution. I don't feel in charge of my own life any more.

I think you are doing a great job and your brothers have just as much 'responsibility' as you do (I'm still not sure how much help we truly 'owe' our parents in old age). If you burn out, who will help your mum then? And who will help you? I am seeing a counsellor to process these feelings, so maybe you could try that?

All the very best!

At least you have awareness and are doing what you can. I am in a similar situation except I am the primary caregiver for two elders with my sibling in FL who has an attitude and no respect or appreciation for all that is done that she has avoided by her move 18 years ago. She has no ethics, no empathy, no sense of obligation. While our parents continue to thrive with me living under their roof, her answer would be to move them into assisted living or a nursing home which would be very damaging in everyone elses opinion who knows the players. Recent example: My desire to do my best for them led to stress that apparently contributed to an aortic dissection, which is often fatal. I wound up getting to the hospital in time, had surgery. She somehow was notified and flew in. Of course last minute flight was more expensive. She picked up the tab for several alleged meals for the elders, claimed to pay a bill etc, and tallied up her costs and incidentals to being some hundreds of dollars and 41 cents. Yes to the penny. Because I am POA, she thought I would just write a check out of our parents funds. I told her if she expected that, she needed to ask our father (mom has dementia and is clueless) as I took direction on writing checks etc from HIM as it was his /Their money. Her point is that it is NOT my money so I should stop controlling it and just write the check. It is not your SOLE responsibility, and your brothers are lucky you are doing what you can. Ankles heal. The feeling of being burned out is too common. If you google Long-distance caregiving you might find some info or additional resources. You're doing what you can. In my case the sibling has opted to blame me for my illness and rub my nose in it for making the choices I have for staying here and winding up as a caregiver. She is an equal source of stress. Told me she hopes "I survive." She made her own choices as well, to take on a mortgage, and I reminded her of that comment she regularly throws at me.

I was caregiver from 3,000 miles away for decades. The guilt, anxiety, anger, stress and depression were unbearable. Life became miserable for me and those around me. I did the best I could. How to handle? 1. This forum. 2. Home caregivers if you /they can afford even a little. They were a godsend for me. 3. Therapy with social worker or psychologist. 4. Do not self medicate with alcohol/ drugs to help feel better. Makes it much worse. Exercise instead- walk, whatever. 5. Be kind to yourself. You are doing the best you can. Give yourself a break. Give yourself a hug for being the best any parent could hope for. Take care of yourself first. You deserve it! My best to you. (((Hug)))

I agree with others that have said to ignore your MIL. It is not your responsibility because you are a daughter. You are doing an amazing job and helping so much. Stop with the guilt - it doesn’t serve any purpose. And please - do not give up your happy life in Florida. Read through some of the sad stories posted here first! You are already feeling burnout! I would say that it may be time for your MOM to make some future plans for her care in the years to come. But it’s not your job to do that for her, and it’s not your job to take it all on your shoulders. I went to counseling to help deal my my stress and anxiety and found it very helpful.

First..ignore MIL.
You are doing what you can.
Even if you were living with mom I am sure there would be time that you would feel you are not doing enough.
What you could do is make sure that your brothers know how much you appreciate what they are doing. Make sure that you thank their spouses or significant others for the help they are giving.
Personally I would much rather take some one to the doctor than to sort through all sorts of paperwork.
It might be time to seriously discuss what plans there are for dad though.
Is he going to be able to remain at home? Is it going to be safe for mom to care for him? Is the house set up so that she does not have to do a lot of stairs? As dad declines can m om handle him? These are all questions that ran through my mind when I was caring for my husband. When something happens to the primary caregiver it is a reality check and a look into the future and all the "what if's" that come up.
Is dad a Veteran? If so the VA might have options.
Does dad have other health issues? If so is he eligible for Hospice? Mom would get some help as well as Medicare will pay for Respite. (about 1 week per year)

If you are doing your best that is all that anyone (including your MIL) can expect and do not let anyone tell you differently.

You are doing a great job! Your mother-in-law is wrong; it is not the sole responsibility of "daughters" to care for their aging parents. Your 2 brothers are there for your parents as well. They should be looking in on your parents several times throughout the week. If your brothers can be at the house daily to help with meals, cleaning, care of mom, and care of dad.... then the all bases are covered. If those are issues that plague you, then it may be a good idea for home health to come in daily to take care of those tasks. If you go the home health route, you can talk to your mom to make sure the the workers are completing their tasks as mom would prefer.

The only way you can have more control is to move your parents down to stay with you, which would probably wear you out faster.

Please try to get some away from concerns about caring from your parents every day: exercise, enjoy hobbies and social activities, talk to friends about something other than your parents, read a Bible, and pray.... You need to learn to let go and let your brothers and others do the care you coordinate.

I am adding because I am in a similar situation. My mom is 79 and my dad just passed away. Mom was his sole caregiver and due to her caring for him 24/7 she neglected her stage 3 advanced ovarian cancer that we only recently discovered.
So being the only child, my wife and I are staying with her temporarily. We live in Mexico and have the perfect retired life, living on a lakeside community with no crowds , noise, etc.. we have our hobbies and exercise routines. We really don’t worry too much about COVID because we don’t have many outsiders. We live inn a small village with norm too many people or crowds.
All this was disrupted when we came for dad’s funeral two months ago. Of course, mom plays the guilt trip by saying she doesn’t have anyone else to take care of her, and she blatantly says that she expects me to stay until the cancer is taken care of. This could take forever.
We have been with her in cold Massachusetts since dad’s passing. We are waiting for the next doctor’s appointment to get the next prognosis. I am not sure what we will do. I am guessing that we will have to put our foot down and just move on. She will be okay. She is doing chemotherapy and does get a little sick and weak fora few days after . But medication and the doctor’s chemotherapy adjusting, that should improve.
I will return if she gets really bad. And she has friends that check in on her. We have also hired a part-time health aide that will come once a week to check on her and help her out. Mom can do a lot and she drives. Mom knows how to get rides back and forth to chemo so I feel that she is prepared for any help.
Covid does not help. Cancer patients are high risk so she needs to take extra precautions. We have faith in God and we pray for everyone’s healing and I know things will get better. I just have to get past the guilt and get back to our lives. We have nothing going on here. And I am afraid that our health and relationship will pay the price. We can’t stand the cold and dark dreary weather. That’s why we left 15 years ago. Our basement apartment is sufficient, but it is exactly that, a basement apartment with limited space and lack of outside view.
So enough about me. I am sure that there are other people out there with similar situations and I am wondering how you all deal with your situation. How are you handling it? Thank you for your input.

You are doing great! Stay in Florida! Perhaps ZOOM communication with brothers is a VERY helpful method of face-to-face keeping-your brothers-more-involved. AND that is a very positive approach to helping.

the term long distance and caregiver are mutually exclusive of each other as caregiver refers to one who is in person there helping with all the daily day to day week to week hands on care that involve so much. To avoid confusion w others I would say you help with making calls and appointments rather than a caregiver

I experienced something similar until my mother passed last summer. You are offering a great level of care to your mother from a distance. I too experienced anxiety related to doing enough long distance as my mother’s needs changed.

Societal expectations imposed on women are unfair and misogynistic. I too experienced out of line comments from a narcissistic sister in law, a neighbor, and cousins about my role as the daughter despite my brother living in the home.

Dealing with your anxiety or feelings of guilt despite all you are doing might be helped by talking to someone. Have you considered a therapist? There are many virtual therapy services these days due to the pandemic. There is also a caregiver hotline here: You can reach the Caregiver Help Desk by calling 1-855-227-3640.

This is a very hard time and my heart goes out to you. I’ll just say there are several options in a care plan and pending resources, please don’t uproot your own life without considering them.

There is a “working daughter” community that has a FB forum as well as a website that offers helpful perspectives and resources.

Take care of yourself too.

There is no such thing as a long-distance caregiver. The loved one is still by themselves. That means the person is still able to take care of themselves. I took care of my mom 15 years with Alzheimer's and she depended on me 100% for her life support, and it got to the point I had to bathe, shower, change her, and it was hard and very complicated.

Treecrout

I took care of two parents from three states away for about ten years. No other family or local help. Went through every elder crisis imaginable.

You’re probably doing over and above the call of duty here. Maybe even enabling mom by doing stuff she could do herself. I now realize that if I had pulled back a bit my folks would have had to move to assisted living sooner and had a few years of socializing and good care. But I took care of ever little detail and my folks were not the least bit cooperative. They refused any in home help. Not even meals on wheels. So it was almost too late by the time I got them into care. They weren’t able to do much at that point except eat and sleep.

I used to ping pong back and forth between feeling guilty for not being there and wanting to choke the #&@* out of them. They were good people but just didn’t comprehend how much they were expecting from me.

They’ve both since passed away and I have no guilt. You can always woulda coulda shoulda yourself but as people age and develop medical and cognitive issues the menu you’re choosing from just gets worse. You ain’t gonna fix everything.

My advice, start laying track. Get all the legal stuff, wills, end of life issues done. From what you write it doesn’t sound like living at home for these folks is sustainable much longer unless they have lots of money for in home care. Start looking into facilities near you or near them. I kept my folks in their hometown until my mom died then moved dad near me.

Good luck to you.

It is all consuming and overwhelming so you may need to step back a little.
Like I wrote in my last post, some of what you did the hospital coordinates that with the patient. If your Mom is independent then she should be able to work with the hospital concerning her care. My Mom always did with Dad up till he passed and she was 78. I only stepped in when her Dementia made it impossible.

Do not disable Mom. Brothers either. Yes, she has a long road ahead of her with husband. But these are choices she needs to make. You can only do what you can do from a distance. You have brothers close by. Just make them know you are there to help as much as u can from Florida. God, I hope my daughters don't think I can't handle a broken ankle. A husband with Dementia, that I can't handle. Had a hard time excepting it with Mom.