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.
Please let her deal with the consequences of her choices and live your life. You've paid enough for her choices, time to stop. No one knows how long we have, doctors should be shot trying to play God with giving out time frames. You don't have to believe it or own it. They don't know.
Bigs hugs! It is never easy getting a life changing diagnosis, but you can use it to really change things for yourself.
This might help. PH is just high blood pressure. Medication along with oxygen is used for that.
With medication management pulmonary HTN can be controlled and managed well. It may be non curable but manageable.
Good luck! Remain positive!
But you! You are handling it (here, anyway) with courage and grace and clear-sighted wisdom, in your signature articulate and organized way.... and I am thinking, there should be a book or a movie in this somewhere ... because Can'tDance has a style all her own, and it just shines through in her every word, no matter what the issue is, even this. If life gives you lemons, you maybe can't dance, but you will stomp the life out of those suckers and turn them into lemonade and sell it on the sreet corner in some kind of hoedown party celebrating a victory of not dancing! 😆
You have a lifetime of caring, Sister Can'tDance. Now it's time to apply that knowledge to taking care of yourself. Because doing that is how you take care of the living: your DH and kids. The ones who really, truly need you. It's time to break out the dance shoes and dance like nobody's watching. Dance for you, as long as you are able. "I hope you dance...."
You might look on this as a gift of sorts.
You can set up now how you want to be "cared" for.
You can tell your DH and soon the rest of the family what you expect and what you do not want them to do. As a caregiver you know the stress this can put on everyone including you.
How far do you want to pursue treatment, what will you do what will be the stopping point. And none of this is set in stone you can change your mind as things progress.
As for Mom's attitude...it is hers and hers alone. You can not change her attitude but you can try to change your reaction to it. (difficult to do after 60+ years I will admit) But use your diagnosis to make this a "new you" and deal with what is important to you in a new light.
Early on in my Husbands diagnosis of dementia he would do things that just drove me up a wall and rather than argue I would leave the house, go for a walk around the yard or go sit in the car and listen to the radio for a bit. It was enough to get my head on right, he did not even realize I was out of the house that is how detached he was. Any time he did something that would upset me I would leave the room. It did get to the point where I could not leave the house though. Another way I turned the attitude was I would just start to laugh. I mean a real laugh, it may have started just as a little haha but soon I would be laughing and he would start as well and that would diffuse the whole thing. You might try just laughing at whatever she is doing to "kill what she is touching"
Best of luck to you and your journey and keep us posted.
I think kind of diagnosis blind-sides anyone.
I can't think of a single sensible thing to tell you, except that I think that sitting with this news, processing it and making some plans ( travel, bucket list items/experiences) is completely justified.
Your mom is being cared for by professionals. She has what she needs. Take some time off from worrying about her.
Again, ((((hugs)))))).