I am doing my best to assist my 71 YO mom as she recovers from ankle surgery. She lives in Illinois and I live in Florida. I have a brother who lives about 20 minutes from her and another brother who lives 90 minutes away. My brothers have been able to help with getting her to and from the hospital, but I have taken on a lot of the administrative and research tasks, as well as doing my best to support them financially (paying for car rentals, etc).
I have been able to coordinate a lot for her, including setting up home health for her—including in home doc visit and labs (this was for an issue unrelated to the ankle), working with the social workers for each hospitalization, and getting her set up for a stay in rehab post surgery. I’ve also been working with local agencies to help with things like installing grab bars in her shower, transportation, etc. Her husband has early onset dementia, so I have been researching resources for him as well, including respite care for my mom, as she is his primary caregiver.
While I think I have been able get a lot accomplished and take the pressure of hours of phone calls and research from my mom, I still have awful feelings. Am I doing enough? Am I doing the right things? No matter what I do, another crisis seems to pop up. Is it my fault? If I have a good day, I feel guilty. 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.
My mother in law told me recently: “this is your responsibility since you are the daughter.” That made me feel even sadder for living so far away.
I have a very happy life in Florida. I do not want to give it up. That said, I am living in an almost constant state of anxiety and guilt. My mom is only 71, and prior to the ankle issue, she was getting along well. She is very independent and I want to support her. It’s just been all consuming lately, and I am feeling burned out and helpless.
I know there are many long distance caregivers out there. Any advice on dealing with these feelings? I really am doing my best, but I can’t help but think that my best is not good enough 😢
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.
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!!
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.
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.
Then the penny dropped.
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.
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!
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
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'.
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.
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 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!
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.
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.
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.
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.
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.
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.