It just gets more and more awful.

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Mom is home from a week in the hospital fighting a UTI that went septic, plus a bad bedsore. A nurse visits daily to treat the sore, and she must be turned on her side every two hours, like a rotisserie chicken, as my daughter says. She has her marbles and her sense of humor, though her short-term memory is bad after a stroke left her with no use of her dominant side a year ago.

She has 24/7 care, so that's good, but, boy is this depressing. She has no life at all currently. She can barely move or sit in her wheelchair what with the bedsore regulations. I love her deeply and can't bear the idea of losing her, but this is crazy. If this bedsore is cured, then what? How do we prevent another one and another UTI that could become septic? Best-case scenario, she returns to her state of a few months ago, where she was able to sit in her wheelchair for a few hours, go out to dinner, and have a drink and a meal.

On top of it, she has gone from fiercely independent and edgy/difficult to completely dependent, sweet, compliant, and very needy of my attention. I'm her only child and we have always been extremely close, but she was a drunken mess during my childhood, not there for me at all. And now I am there for her constantly, handling her bills, lawyer, insurance, home care, plus visiting and talking to her on the phone all the time.

I don't want sympathy or to be reminded how hard this is and how sorry everyone is (nasty as that may sound, it makes me feel worse). I want advice on how to reconcile my current devotion with her past neglect, plus how to deal with the ongoing health issues that will likely keep repeating themselves.


xina, there is no reconciling the past with what is going on now. I thought about her being sweet and compliant, then thought about how that may make me feel worse. I actually like it better when my mother is being her mean self than when is being her sweet, child-like self. I don't know how you feel about it, but I don't handle the sweet very well.

Something I have started trying to do is to think of making my own heaven on earth in my mind. I can get lost in bad feelings with childhood wounds reopening. There is so much negative all around me. Sometimes I think I'm jinxed, but then I hear other people are surrounded by the same things. The bad feelings hurt ME mostly, so I think about bringing heaven here to help myself. I guess you can say it is like choosing how I feel, but I try to let it go deeper than that -- like letting it wash over me.

Okay, now I've sounded totally cuckoo, but it helps me some. Mainly it helps me think of how I can control the way I feel. This is for me and not to make me be a better caregiver. I haven't learned yet how not to be scared about what is going on when it comes to my mother. I just put it all in god's hands when it came to my father. That isn't working so well with my mother because she is a card. Dealing with all the emotions when alone is a tough thing to do. Different people probably have different things they do to deal with the emotions. We can't stop what is happening with out parents. We can only respond at the moment and try to keep our internal selves safe from what threatens to tear us apart.
How old is your mother?
She is 84, NYDaughterinLaw.

Thank you, JessieBelle, for the wise words. I like the idea of creating a heaven, or a "happy place." I know there is no point in dwelling on the past. My mother always loved me to pieces and really did the best she could, given her own major issues. But there is a part of me that feels like, "well, now you got yours, Mom! No drinking, no escaping anymore. Just face to face with cold, hard, truth, just like I was as a kid."

Yes, seeing her so sweet and vulnerable is absolute agony. She's like a little puppy in a cage, wanting to run around and have fun, but no one's letting her. Too sad. She was SO not like this.

I am not surrounded by people who have been through as much, at least in real life. My cousins, especially, are very kind and supportive, but they are constantly telling me how resilient I am and how hard my life has been, etc. I know they mean well, but I don't WANT to be the pitiful person who has to be "so resilient." Every time someone says "you poor thing," or "wow, you've been through the ringer," or "you are so strong," or "I'm so sorry," or - the absolute worst, "I don't know how you do it," it makes me feel much worse and confirms that they are not in my shoes. I'm sure that's unfair of me, but that's how I feel.

You can't resolve the past but maybe there's away for you to understand it. Many people drink to cope with an underlying, not diagnosed issue, such as clinical depression. I'm not saying she suffered from this illness. However, she may have struggled with some personal issues and didn't think you were of age to understand so her only way of coping and dealing with the issues at hand was to drink them away. My father did this. If your mother didn't have a support system of family and friends, then her family and friend were the bottles of alcohol. Growing up we think our parents know everything and at a young age we don't understand that they also are "human"...they make mistakes, they have troubles...they have work issues...etc. You know what I mean?

As for as dealing with ongoing health issues: No matter the age of the your mother, you should think of her quality of life. There will be this issue or that issue that comes up. The disease process and it's complications can't be reversed. As for me, my mother could easily live another ten years based on her recent blood work but she's been suffering badly from the complications of vascular dementia which has caused her to be homebound for the last four years. Death With Dignity isn't available in our State. She doesn't have the mental capacity to stop eating and drinking on her own. I've recently decided enough's enough - for her - and the next time she gets a UTI or pneumonia, I'm not treating this and I'll be putting her on hospice, letting nature do it's thing. I'm not advocating you do this, I'm just letting you know where I'm at. I'll be a basket case after she's gone but I'm tired of seeing her suffer for this long without me reversing or even halting her disease process along the way. Her future is more pain and more suffering. It's simply not fair to her. We're all going to die from something.
Xina; don't get caught up in your mom's current state.

Give her two weeks and see where she comes back to; get an assessment as to what her needs are then. from the agency.

This is going to sound terrible, but when my mom was post stroke, dx'ed with vascular dementia, I just had to disconnect from the "mom" piece and treat her as another client.

Sad to say, it was all too easy to do. I grew up in an era of "it's good enough" and "what do you expect" and "life isn't perfect". I use the same phrases when thinking about mom's care.

I'm sorry if this sounds terrible, but it's how I get through this.
I agree that there is no reconciling the past with the current issues. If you need to work on the past, do so. Those of us with abusive childhoods often have issues we still need to work on. The present is the present and needs to be dealt with. Your mum is declining from the sound of it. You may not be able to prevent another UTI going septic. It is what happens as the body winds down. The reality is that you will lose her.You are looking after her business, providing her with the care and support she needs. It is what you can do. The mother I knew all my life is not, for the most part, the woman in the hospital bed that I visit. She is more even tempered, due to meds. Still she is my mother. She needs care, which I arrange in an ALF, and her business looked after, which I do. I don't visit often as it triggers PTSD from childhood. We do the best we can and they will eventually die anyway.
I wish I could disconnect and detach, Barb. Oh how I wish! This year after her stroke has actually been precious. No more arguing, no more drinking - just a lot of love between us. It's sort of like the relationship I always wanted with her, and soon it will be gone. I actually *try* to manufacture my anger about the past with her, but it doesn't work because she is so sweet now and obviously I'm not going to be cruel at this point. People tell me it will be easier to lose her since we've had this nice phase, but I think it might be even harder. Anyway, what will be will be.
Also, Careisgiving, I hear you completely about wanting to stop medical interventions. But my mother is mentally competent and made clear to the dr at the hospital that she is DNR/DNI. I've asked her if she wants to die, and she explicitly says no way. So if she does get sick again and says she wants to go to the hospital, do I refuse to call 911? If she had terminal cancer, that would be different. It's very, very complicated, for sure.
As people age, the skin (both internal and external) thins and there's less lubrication. As such, things like UTIs become more common. The hospital is the worst place for an old frail person. Hospital infections are rampant; it is the nature of the beast. More bacteria are becoming more resistant to antibiotics and, if one sets in, good luck getting her back home. Perhaps you can explain that to her. Old people often view doctors as demigods but the days of Doc Baker from Little House are long past. Have you asked her if she wants to die in the hospital or at home?
She will not talk about dying - at all, anywhere. She's not going to die, as far as she's concerned. Even though she wants DNR/DNI, I have no sense that she believes she is anywhere near that point.

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