It just gets more and more awful.
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.
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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.
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.
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.
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.
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.
Give her some time to recover. She may be strong enough to remain at a plateau for a long time.
As for the UTI...with my mom we change her frequently, be sure to clean and dry her private areas, and use a barrier cream to help...also give her as much water as we can get her to drink which is challenging at this point.
We have really worked on preventing bedsores. One of my daughters is a nutritionist at a nursing home. She told me to keep her protein up to help keep her skin healthy. We do so by adding tofu, Greek yogurt and other protein rich foods. She also drink 2 Ensure plus a day. In addition we use an alternating pressure mattress on her bed and of course change her position frequently. We don't always do a full side turn, just a slight adjustment to move her. When she used to be able to get out of bed (even though it was a dead lift to move her), we had a nice memory foam pad in her transport chair and another alternating pressure mattress in her recliner.
My mom has stage 7 Alzheimer's so our situation are very different. We have a DNR on mom...did you get the actual sheet completed? I didn't know I believe needed that, thinking my mom's birthday wording on her POA was adequate. I found out the I was wrong when she had a seizure and I called 911. I spent the entire day fighting first with paramedics and the with the ER doctor. Now I have one and it is taped on her bedroom door in my home. We will never again call the paramedics...whatever happens, happens with us by her side telling her we love her. I hope my little bit of experience can help you. My thoughts and prayers are with you.
I've had a thought about your situation. I don't know if you are familiar with Family Systems approach, but it says that families tend to have roles, and it's difficult for one member of a family to change much, that other family members may feel an internal pressure to become the way the changed member was. So maybe if when you were young and helpless she was an angry or aggressive person, now when she is helpless and young acting, you feel internal pressure to be aggressive and disagreeble. And that's not in keeping with you past behavior or values, that's why you are so uncomfortable ....Just a thought . Look up Family systems approach to read more.
Caring for m mum who is due to turn 88 next month as well as my 95 yr old dad. Mum is a dry "drunk" and I share a similar story as you: caring for a parent who wasn't there consistently when growing up +.
When I got here she was d*mn near dead with nightly hard liquor binges which my father has been her enabler and in denial. I cleaned up the mess best I could and she eventually had a stemi and on warfarin tried to drink - but only made vascular dementia and advanced CAD worse. In writing this, I see now how much pressure I have been enduring in the madness along with the sick unhelpful sibling dynamic. Of course the siblings all say I am the one who causes issues. Always have. I am the scapegoat.
I have asked myself the same questions you have - along w should I call 911 - I am not even POA (one of my siblings in another state is!) and m answer is YES. Because she always says she wants to when serious things comes up despite the IDEA of letting go that she has ascribed to. It's her choice dementia or not. This is a choice between life and death and if she can ask for help in that moment, I am not going to deny her that right. I am but mortal and can understand the disparity between the IDEA and the REALITY of the dilemma when that moment comes.
I am getting help for the yrs of insanity before this as well as now. She was going to AA but then my dad said it was disrespectful to her and they both insisted the whole town knew due to the group gossiping (untrue). The doctors are not stupid - they knew due to her blood tests and accidents etc.
Dealing with a dry drunk who acts like a manipulative, poorly adjusted toddler having a tantrum is harsh - Unlike a toddler she will not improve and grow out of it. If anything - vascular dementia and yrs of this behavior will only intensify before tripping the final line. We had some relative success but it has been undermined due to my narcissistic dad and unstable sister along w unhelpful family who consider this role of mine a blessing for me. Must be why they never visit except when they want to assuage their own guilt a la last call for alcohol.
So for myself there was a brief window of relative connection - and then the family - dementia - and yrs of addiction caught up and robbed me of anything much more positive with her. Most of the time I avoid connecting with her emotionally and do the work that needs doing. The rest of her kids can step up for the emotional part. I walk into a room and she starts some kind of verbal assault followed by passive aggressive pretend crying - thinking it is funny though I ask her to please speak to me like an adult. It's so d*mned frustrating I have given up on connecting much these days.
Wish I had more help to offer.
In other news, my mom was in the best shape she's been in since before the UTI/hospitalization last night. I don't want to jinx it, but we went out to dinner, she sat in the wheelchair with no complaints, and actually ate some real food. She was literally bedridden for the last month. Fingers crossed.
Personally, D-Mannose powder was a lifesaver for me when I was dealing with UTIs. It only works on e-coli, though. You drink it in fluid or take it as a capsule. I think it's inert and not digested, so even if it doesn't help it won't hurt.