I have been the primary caregiver for my 88-year-old mom for over 20 years. She was fairly healthy when my father died. But she was living alone until recently and has (in my opinion) some major untreated mental health issues. These issues have basically distanced her from other family members to the point where she relies very heavily on me for all her emotional and physical support. She made me her health care proxy, power of attorney, and executor of her estate, just to give you an idea. My 4 siblings are mostly on the periphery; only helping in times of crisis and even then, they really don't let it interrupt their regular daily lives. Mom has had several major health events over the years and now has terminal cancer.
I have tried to get my siblings more involved but they ultimately throw their hands up and always have excuses for not being able to help more.
Meanwhile my mom is very manipulative and only wants help from me because the others "don't know how to do it" or "don't know the way she likes things." She is an extremely anxious person and refused to get paid outside help at home whenever I attempted to set it up. Also refused things like a fall alert button, etc.
I work full time and have a spouse and kids at home.
Now she is at the end of her life. After a course in the hospital and rehab over the past 2 months, she is in a nursing home. She wants to go home but that's just not possible.
Now I feel guilty for not being by her side all day every day. My life continues as it always has, while my poor mom is scared, anxious, and dying alone in a nursing home. I see her probably 4-5 times/week for 2-4 hours each time. Is that enough? I just don't know any more.
I love my mom but there's no doubt that caring for her over the years has taken its toll on me. I have always had this nagging goal to "make her happy" but feel like a failure because she complains about everything no matter how much I do. She appreciates and loves me one minute and complains about every minutiae the next. Now at the end of her life, I still/again feel like a failure because I came all this way by her side and now it's like I'm deserting her.
I just don't know what the right thing to do is any more.
I have FMLA but if something major were to happen I don’t have enough time off. I try so hard to get her to understand that I have a job, house, pets, my own health issues, and basic ‘life’ things but she just won’t. I feel so much guilt having to say no to things. It’s almost as if when I tell her I need time to myself she calls/texts MORE.
I don’t know anyone my age in a situation like this so just reading these replies helps beyond words. Thank you for all you do and the amazing responses.
I have made her a priority, canceled personal plans, put my life on hold.”
Sometimes dying people live a lot longer than we expect. It would be one thing of your mom was actively dying right now, but she’s not. You need to get into a routine that YOU can live with because this could go on for many more months. If you feel resentful now, and keep arranging your life around mom, you will be toast by the time she actually passes.
You have done what you can for her.
You have acted in her best interest.
You have a life.
You ...YOU..can't "make" her happy. Only she can do that and from what you have written she probably doesn't know how.
Is mom on Hospice?
Hospice even in a facility can help. And one of the goals of Hospice is that no one will die alone. So a Volunteer can come in and visit. When mom is at End of Life , actively dying a Vigil volunteer can come in and be with her, and you if you are there so that when you can't be with her she will not be alone.
You are not deserting her.
You have done the right thing, you are doing the right things. Don't let anyone tell you otherwise.
I think you're right that she doesn't know how to be happy. It's just heart breaking to think about.
She is not on hospice yet, but only because she doesn't trust what they and I tell her. She is very suspicious and refuses to sign for it, thinking we're trying to trick her into something. For now, the nursing home is doing a good job taking care of her at least. She also will not sign a DNR, even though she recognizes she is at the end of her life, has refused invasive treatments, and says things like she "doesn't want to do this anymore." I don't think she understands what the DNR is, and anytime someone attempts to explained it to her, she gets irate. She's anxious and scared and fighting to stay in control.
I should clarify that my siblings are visiting her. They have stepped up in these past months. It's just that my mom has always depended on me almost exclusively, so she does not have expectations from them. Their daily lives are really not that impacted in comparison to mine. I take time off work, have FMLA so i don't lose my job, go see my mom when it's a good time for "her", not when it fits "my" schedule.
I have made her a priority, canceled personal plans, put my life on hold.
My siblings have never done any of these things. Maybe that was my mistake from the start and now I'm paying for it.
Make the time that you can spend now valuable. Say what needs to be said and make sure she is getting good care. That is the gift you can provide now. You do not control her responses or her actions.
I wish you peace during this difficult time.
Im sorry for the struggles you have been through. Thank you for sharing your wisdom and reassurance.
You did not fail her in any way.
You cared for her for so long .
You have made sure she is where she needs to be .
You are visiting plenty .
You are not responsible for your mother’s happiness .
You deserve to have your time with your own family at home.
There is nothing else you can do different .
You are not the only people pleaser here, we get it.
What you said sounds exactly like my mom:
"Meanwhile my mom is very manipulative and only wants help from me because the others "don't know how to do it" or "don't know the way she likes things." She is an extremely anxious person and refused to get paid outside help at home whenever i attempted to set it up. Also refused things like a fall alert button, etc."
I ended up supporting my mom in hospice in her own home. I tried to do it alone but I brought in a lot of hired help over time against her wishes (mom was bed bound). I am still recovering from the physical, mental and emotional exhaustion, even though my mom died over a month ago. She was in hospice for over 6 months.
I really wish I could have just been there as a daughter. And as you said, being healthcare proxy, POA, paying the bills and being executor of estate is more than a handful in itself. Plus you have put in years of caregiving prior to this. It's time to give yourself a break. The biggest lesson I learned was I could never "make her happy". I wish you the best.
The past few years have made me realize that the only way to get my own life back is for my mom to die. What an awful thought.
Thank you for your support. It's comforting to know I'm not alone with a lot of these feelings.
It was never your job to make her happy. That was up to her.