Looking for some clear eyed advice from this thoughtful and caring group.My mother is 93 and up until the last 18 months has been able to live independently in her home. She has a will of titanium and is adamant that she continue to live at home, despite how debilitated she has become. I live 6 hours away; my brother lives 2 hours away. Over the years she has had a number of medical events – cardiac and orthopedic - that had me taking care of her 24/7 for anywhere from 3 weeks to almost 2 months at a time. I thought that was the right thing to do, and while my husband had his concerns about me, he understood and supported my decision to be with her.The past 18 months have been incredibly difficult. Last June she broke her hip and I went in to be with her for the surgery and set up her up recovery. She needed to go to a rehab facility or have round the clock home health services, neither of which she wanted. She decided on a rehab facility which would keep me in town with her. She absolutely hated rehab and let us know of her displeasure many, many times a day. During this time, my husband was diagnosed with a rare and aggressive cancer. I got my mother out of rehab after only a week and set up partial home health services – the maximum she would agree to – and came home to be with my husband. While caring for him, I was still in daily long distance contact with my mother, her doctors, and the home health agency. My brother did the heavy lifting with in-person visits and supporting her additional hospitalizations for a broken elbow following a nighttime fall when the aide wasn’t there. My personal situation didn’t diminish her constant negativity (“I know you have a lot on your plate, but…”), physical distress, and unhappiness with the home health people. She has regularly accused me of siding with them against her and railed against me for taking charge of her life by setting up the services. She does not see our relationship as a partnership for her care – it’s either her way or no way.My husband died late last year and I’m still trying the find the time and space to grieve. My mother has taken up all the bandwidth. Since he died I have been to see her 4 times – once for 11 days when she broke her shoulder after another unsupervised nighttime fall. She also has severe heart failure and is now basically bedridden at home with the same partial home health services. Last time I was in to visit she asked me if I would move in with her. I told her as gently as I could that I would not, though she was welcome to come to me and I would visit as much as I could. She understood, but I continue to receive multiple daily calls from her saying that she is sick, how she is sick, and that her life is terrible. When I ask her if she wants to call an ambulance, she says no – she just wants me to know how she feels. Her cognitive status is shifting but she was deemed competent at her last hospitalization.Understandably, this has created a lot of complicated emotions – compassion, guilt, resentment, anger, frustration – as well as just constant emotional exhaustion. On the positive side, my brother and I are close and on the same page. But we are just wiped out from the self-absorption, negativity, and inability to understand that we have twisted ourselves inside out to keep her at home per her non-negotiable wishes. It all feels impossible. Is there something else we should be doing? How do we keep body and soul together? We’re both working to establish boundaries but there are a lot of cracks in the defenses. Thanks for letting me go on. Just reading the other posts in this forum has been such a big help.
Perhaps talking with a therapist can help you to learn how to manage your part in this drama created by your mother and how to reclaim control of your own life.
Your mother is making her own choices. You do not need to step in and help her manage her life. Let her do it without you. If you have offered an option that you are willing to provide to ensure her safety and comfort, and she refuses, it's ok to let her try on her own and fail.
Of course you have complicated emotions. Compassion, resentment, anger, frustration and emotional exhaustion are all valid and understandable. Guilt has no place in this mix of emotions. You are not doing anything wrong to feel guilty about. You did not cause your mother's condition and you can not fix it.
Continue to make suggestions and to offer to do the things you are willing to do for her. If she refuses, don't bend over backward to allow her to make the demands. As long as you allow your mother to call the shots, she will continue to make selfish demands. Be the shot caller of your own life.
The only thing you can do is step back and let the cards fall where they may. That will sound heartless and alien to you and your brother, but you are orbiting around her and doing what she wants when that is not reasonable. When she has the next health crisis, you will tell the hospital, rehab, etc, that she has no help at the house. She has no one near by that can come and stay with her around the clock. You are 6 hours away and cannot do it under any circumstances, and brother is 2 hours away and is also unable to care for her daily.
What this will do is force the situation to be rectified by the social worker at the hospital. The magic words are "unsafe discharge". Just repeat that over and over. She will be alone and she is an unsafe discharge.
You cannot make her happy. You can, if you like, listen to her complaints without feeling compelled to fix them. If she is indeed calling to tell you how she feels and that's it, then you can simply listen and say, mom that sounds really hard, I'm sorry that's happening but I'm willing to be a shoulder you can cry on.
The only way she is staying in that house alone is because of you and your brother. Without you two, she would be forced into other options. So in reality, you're not keeping her safe and happy at home alone, you are enabling her to stay in an unsafe situation for a longer time. It's hard to hear any of this and harder to go through, but you need some time for yourself. You've suffered a major loss, and you need time to grieve and recover from not just your husband's death but all the other changes in your life over the last few years. Consider this point in time YOUR emergency, and take care of yourself, please. You are worth it.
As someone who has been caretaking for my mother-in-law with Dementia from another state for the past 3 years, I can relate. It's incredibly hard to keep going back to put out fires with no end in sight. I'm also sorry that your mom is being difficult which just makes it harder and more unpleasant. From what you wrote, it really sounds like she needs Assisted Living, both for her wellbeing and for yours. There are so many stories of parents who fiercely resisted it, only to discover that they liked it. You can't just disregard your own wellbeing because she wants it her way. I'd draw some strong boundaries and give her a choice to stay home alone or to go to Assisted Living.
Thus you will become more uninvolved. You take one call a day from her - or one call a week or whatever you decide. If mom feels the need to rave on and on about how miserable she is, how about regular sessions for her with a licensed counselor? Her PCP might be able to recommend one.
Why would her being in a rehab facility keep you in town with her? Or is that something you decided you must do? She is a demanding parent (often referred to as a "senior brat"), and I understand how she has trained you to think that you must repeatedly exhaust yourself on her behalf. But - what if you didn't? What if she had to do without? What if she ranted and raved and no one was there to pay attention to her? Would her life be miserable? Probably, but even with all her anger and blaming and shaming of you, she isn't happy anyway. Your taking it and taking it time after time has produced no happiness for her at all. Yet you still sacrifice to make her happy, you still allow it. I'm not trying to dump more abuse upon you, but there it is.
I've given you some things to think about, but please don't discount them. Sometimes we need to pivot our thinking away from our beliefs that are hurting us. Then we grow, understand, and start to let go of the burden that was placed there by a domineering parent who never should have placed it on us in the first place.
Please keep us posted, and good luck. I send you sincere condolences on the loss of your husband.