Looking for understanding: My caregiving role with an unexpected diagnosis.

I didn't know what topic category to put this under, so I chose Care Decisions. This isn't really a question. I'll try to be as brief as possible.

Mom, 93, lives in memory care 4 hours away from me. She has osteoarthritis in both knees, heart failure, and mid-stage dementia. With the aid of her walker, medication, and a great memory care staff, she's doing remarkably well, with the exception of attitude. In my opinion, Mom's biggest problem is her bad attitude. She's like Fukushima, killing everything she touches.

My relationship with Mom is fragile due to her high-octane narcissism and accompanying emotional abuse. For over 2 years, I've been Mom's medical and financial POA. Thanks to years of therapy, faith, and practical advice I've received here, I've moved from hot mess to coping reasonably well! Yay for me! I should point out I get help from my younger sister, who like all family members didn't escape the poisoned apple.

Quite recently, I got a diagnosis of pulmonary hypertension, which at 65 came as a real shock to me. It's a relatively rare condition, progressive with no cure. Apart from chronic depression, anxiety and a minor cardiac issue, I've enjoyed good health for most my life. Ongoing testing to find the cause will decide my treatment. Doc assured me I'm still in the early stages. With treatment, I may have another 10 years, time to make plans, put things in order, etc. Some might say I should be happy to have 10 years, which is more than some people have. But when I think of the progression of discomfort, supplemental oxygen, swelling of extremities, ascites, and heart failure; the testing, the therapies and limitations, I wonder how many of those years will be "good." One of my earliest memories is of my great grandmother in the hospital, dying of heart failure.

I look in the mirror and it doesn't seem real. Staring back at me is a woman young for her years, the very image of health. And for good reasons. I never smoked. Never drank alcohol. Never did illegal drugs, (and very few legal ones). Exercised. Pursued good health and good attitude. I love my life with all its imperfections. I cherish my creative endeavors, my happy marriage, my children and grandchildren and I thank God for these blessings. But now.....

I didn't see it coming. I'd always associated my current mild symptoms with the previously-mentioned cardiac issue, something the doctors always brushed off as being insignificant. They weren't worried so I wasn't either. Turns out PH is easily overlooked in the early stages. We didn't know something more insidious was going on. It may sound awful, but I was looking forward to a few years of mental freedom. As it looks now, the cycle of life and death won't play out as I'd expected. From an emotional standpoint Mom was totally unequipped for being a parent. She turned the tables, expecting me (from a very early age) to parent her. So I did, "taking care" of her her emotionally. In the absence of nurturing, I brought myself up and did a poor job of it. And so it followed that when Mom got old and genuinely needed care, I took on that role, perhaps not easily, but at least I was familiar with it. As time went by, I imagined the limitations of Mom's life, of her passing away and how that would impact me. I imagined freedom from that role for good, and wondering what it would feel like.

But as it is, she's still going strong, fueled by anger and lust for control. She may outlive me. Maybe not. These next few years feel like the final exam I don't want to take.

I haven't told anyone but my DH. He's in total denial. My kids have anxiety issues, and it feels premature to tell them. And of course I won't tell tell Mom for obvious reasons. She wouldn't give a rat's behind anyway since it isn't about her.

Thanks for listening. Sorry about the the wordiness. This will all look better tomorrow.