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I've finally had to admit that in the two years my mom has lived with me, I've spent more days burnt out than not. She is 94, with memory loss. Trying so hard to make her life better, and do a good job of caregiving, I've been stressed, irritated, struggling with disliking my mother and controlling my responses,and resenting the extreme shrinking of my own life.


This summer, I've taken stronger steps to take care of myself and my own health, making strong enough boundaries with my activities that I could be pain-free from my Chronic Fatigue Syndrome symptoms for several weeks. It was lovely to be able to take care of myself in this way!


Last month, she fell and broke her hip. The surgery went well, then she got pneumonia and was in ICU for two weeks. I was there several times a week and calling the nurses twice a day the other days to check on her. My own illness got worse, and I was in daily pain again, even more than before.


Now she's in rehab, sick for ten days with a nasty c-diff infection she got in the hospital. I made a commitment to stay home and rest until I could at least be pain-free. That means I haven't gone to see her in a full week. My daughter (the only other family in the area) went 5 days ago. I stay in touch with the nurse manager daily. I'm going tomorrow for a care meeting with doctor and PT.


Today, as my own physical pain is so much relieved, I am feeling all the guilt. I know intellectually it is not necessary for me to feel this way. She has both a cell phone and a phone on the table in her room, and she doesn't answer either one; that would be such a good solution to keep in touch. She knows how to call me, but she's probably been too sick to talk on the phone anyway as she can hardly stay awake and has been sleeping all the time.


My mind and heart both tell me it's OK to take care of myself, that I will see her tomorrow, and that she will call me when she is ready to connect. Somebody else I'm used to listening to inside myself keeps telling me it's NOT OK AT ALL! Maybe my inner kids, who believe they HAVE TO make my mom's life better whenever she is even a little distressed.....


Anyway, I'm so glad to be here because I know I'm hardly the only one feeling this way!!!! Your thoughts and experiences on healthy boundaries and "yes" to self most welcome.

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Wow, goodenergy, you sound really burned out. It must be so hard being the only adult child tending to the needs of such a frail elderly parent, especially one that you have such conflicting feelings towards, and especially when you're struggling with health challenges of your own. I feel your pain, honestly. Many of us are in similar positions. I don't have CFS, but I have a badly arthritic foot and I have to do almost all my mother's walking for her because her strength and balance are so poor she can only walk about 20 steps even with a walker. Clearly you've needed this break.

You seem in the past to have put a lot of pressure on yourself "to make her life better and do a good job of caregiving." Now you're learning to respect the fact that your heart isn't in it and your body isn't up to it, and not make yourself sick trying to do more than is needed, or more than you reasonably can. You seem to have devised a system of keeping yourself from being overwhelmed with stress and resentment to the point where you start getting sick. I've tried to do that with my mother too. I try to avoid doing anything for her if I believe it will inflame my resentment of the whole situation (demanding, entitled parent; lazy, unhelpful siblings).

Maybe your mom needs to stay in a residential setting over more of a long term so you can take care of yourself and use your own energy only for the most necessary tasks. Or, if there are family out of town, maybe somebody could take her for a long visit or come into town for a while to relieve your burden. Unfortunately, I'm well aware that out of town siblings seem to believe that the parent's care has nothing to do with them. But your mom seems really sick right now, and this might be a good time to prevail on out of town family to swoop in and lend a hand. If not, you still have the right and the obligation to take care of yourself.
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It's the jekyll and hyde of the heart and mind. I feel guilty, I shouldn't feel guilty, I should go, but I'm tired. Just go down the list and it's the same battle. My parents, especially my mom, is very attached and it can be really hard, since she is sweet most of the time, but uses that too I think to manipulate. It got a point where I just thought I was going to wear out completely running back and forth.

I've done a few things to help with boundaries and adding more yes for myself. One was that I got in home companion care for mom primarily twice a week for three hours since August. It's a friend who works for a company and she just thinks the friend is coming over during her lunch break or else that would have never been accepted. This one change alone has helped a lot and taken the pressure off. Mom still tries to get me to come over after she's gone, but the answer is a strong no, unless it's a true emergency. If it were I would go of course. My friend makes sure they have food and takes care of the things I would do if I were there.

I'm there on the weekends to visit and help and hub goes one to two times a week also. They are learning to adjust as long as I hold to my convictions. Otherwise, I'd be a basket case by now. And I would have been roped back onto the rat wheel which would be my fault. I think a bit easier though since they don't live me. It's still a daily challenge, but much better!
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Participating in this forum has helped me establish healthy boundaries with my inlaws and help my husband establish them with his parents. His parents started making so many bad decisions that it was impossible to keep up with fixing their messes. And I was angry. I was angry with my inlaws for their inconsiderate, selfish, co-dependent, dysfunctional behaviors and with my husband for enabling his parents to be daily pains in our behinds. My husband and I talked about what was possible to do for them and what we weren't going to do anymore. Then we 'aired the grievances' with his parents and told them we were both angry and worn out. My inlaws can be manipulative and revisionists of history and I was proud of my husband for calling them on that too. So now the family dynamic is better but maintaining healthy boundaries is something we both have to do regularly because if we didn't my inlaws would suck us right back into their dysfunction. Maybe there's an easier way to establish healthy boundaries and I'd love to learn how. I wish you lots of luck!
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I think that when we use our best judgment and have a good faith basis that our decision was right, then that's all we can do. I like to think that we all have some idea of what is reasonable. We can use that as a measurement tool. I like to think I'm conscientious, but I know I don't have heroic strength. I am so grateful that I was raised to do my best and be at peace with it. My guilt is from when I do wrong and know I'm doing wrong. When I'm working to the best of my ability, if it's not sufficient, there is no shame. To me, getting your rest and refueling your body is imperative for a person with Fibromyalgia. And visits to hospitals offer risks. Make sure your immunity is up before visiting. Wear a mask and sanitize your hands after leaving. I was taught to be gentle with myself and others.

If you have trouble having expectations for yourself, why not try to look it from another perspective. If you were hiring caregivers for your mom, would you pick a place that only had one caregiver, who had a medical condition, to work around the clock to attend to all of her needs? I wonder if your expectations are realistic. You seem to ignoring your own healthcare needs. I hope you take care of yourself too. Wouldn't you mom want that for you?
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