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.

Can't, big, BIG ((((hugs)))))).

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)))))).
Helpful Answer (21)
Reply to BarbBrooklyn

Thanks so much for your kind responses! You were just what I needed! And it's true: The diagnosis doesn't look so scary today. Besides, I've always taken a proactive stance with my health. You know: the old "ounce of prevention" attitude. It's a good attitude and I'll stay with it. Need to lower my sodium intake.

Doc offered a time frame at my insistence, and I see now that wasn't prudent. It's only a WAG, right? And the verdict is still out about cause. Still awaiting CT chest results. A sleep study will be on my schedule soon. Probable heart cath.

I've enlisted more help with Mom's care as I redirect my focus. Reduce stress. Embrace the positive. Reject the negative. Hand over to God. Allow DH to process on his own schedule. Enjoy kids and grandkids. Enjoy life. It's gonna be okay!

I appreciate you!
Helpful Answer (20)
Reply to CantDance
ExhaustedPiper Apr 12, 2019
You are such an inspiration. Your attitude is wonderful!

I wish you many happy times with your husband, kids and grand-kids. That needs to be the priority. The only priority, imo.
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wow...... Can't, many(( hugs ))to you. Barb said it well - just want to add not to give another minute of thought or angst about your mother. Detach..detach. Don't let her take any more of your precious energy. Let calls go to voicemail. Time to take care of yourself and your husband.
Helpful Answer (17)
Reply to Linda22

I will play the "Pollyanna" here..(does anyone remember that movie anyway?)
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 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.
Helpful Answer (15)
Reply to Grandma1954

Oh, Can'tDance, I'm so sorry to hear this! I feel like I'm just getting to know you, how kind and brave and ... and practical and tough and feisty you can be .... and now THIS.... well, this is just crappy news!

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...."
Helpful Answer (15)
Reply to DesertGrl53
katydid1 Apr 11, 2019
Well said DesertGrl53, Well said!!!!
Hang in there! Pulmonary hypertension is more common than you’ve been told, especially in those with sleep apnea. It’s not rare. Are you on CPAP? That’s usually how it is treated. Have you had an echocardiogram or stress test? Often pulmonary hypertension is b/o aortic stenosis (heart valve issue).
With medication management pulmonary HTN can be controlled and managed well. It may be non curable but manageable.
Good luck! Remain positive!
Helpful Answer (15)
Reply to Shane1124

Getting news you don’t expect is devastating but it also is a good chance to prioritize and decide what’s important to you in life. I’m sorry you’re dealing with a health diagnosis that’s hard, sounds like from the comments already posted that you may have more hope for management that you were given. The hope I know you have is choosing what to allow in your life, choose the things that bring you positivity and joy, lose the things that bring you stress and negativity. You’ve done well by your mom, now it’s time to do well for yourself. Blessings to you as you move forward
Helpful Answer (14)
Reply to Daughterof1930

Don't know about tomorrow, but I'm sure this will all look better, or at least not so menacing and unfair, when you have a lot more answers to the medical questions; and, importantly, when you have spoken to your sister and arranged time off from your mother duties.

Also, without feeling the need to go into your personal details, lean on the facility's manager. Explain that you'll be in the back seat for (say) six weeks or up to three months, can you count on her support to keep mother just ticking over.

Take a break until you know where you are. Otherwise every indifferent and self-centred word your mother says to you - whether she knows of the news or not - will click the ratchet up another notch.

This is so unfair! I wish I had something more constructive to say, but I certainly do feel for you.
Helpful Answer (14)
Reply to Countrymouse

Wow, so sorry for your new knowledge. I am your age and cannot imagine receiving such news. The closest I can come to truly understanding is when my husband in his early 40's was diagnosed with Stage IV Melanoma... ok, so surgeon told us "they got it all". We believed him. So fast forward to a few years later after multiple treatments, surgeries, medications, for the "all" that the dr. didn't get when it metastasized to just about everywhere. And we were so young, and I was so dumb, so imagine the shock I felt when the dermatologist took me aside, and told me husband had a prognosis of 5 years. She said it very flatly, very "doctory", no compassion, and it was like a rug yanked out from under us. What about the golden years we were supposed to have after the kids were grown? Etc., etc.

So, now 20+ years later, I am 65, same age as you, and I cannot begin to imagine the pain you feel. There are tears in my eyes now as I think of how you must feel having been issued a timeline. I am so sorry, and when you possibly can, try to forget, to "unhear" the number and the rest, throw out the clocks and watches in the house, and enjoy each day to the fullest. Plan something each day to look forward to, even little things, like plant a flowering bush, write something, read a book and get lost in it..... but keep coming back to this forum and talk to us. I will keep you in my prayers.
Helpful Answer (14)
Reply to Myownlife
StandstoReason Apr 14, 2019
What a wonderful, practical, full-hearted response. Thank you!
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I am so sad to see this news, CD, sending a huge hug your way. I get your feeling of "one day I will be free" and now this news which makes time much more precious for YOU.

No matter what, YOU have to be the number one priority right now. That freedom you have thought about, it needs to happen NOW. It's time to be selfish with zero guilt. And it's not being selfish anyway, it's necessary self care.

Talk to your DH and map out some plans. Plans for YOU and plans that will make YOU happy. No more compromising, for anyone.

It might be a good idea to tell your sister. She will need to step up a little more for mom (or not) because it's time for you to let go of that responsibility. Your mom doesn't deserve to suck another single once of your life energy. She's had MORE than her fair share.

You need to be the priority now.
Helpful Answer (12)
Reply to ExhaustedPiper
cherokeegrrl54 Apr 13, 2019
Couldn’t have said that better!! Your words are so honest and true...
CD, possibly its time to appoint a secondary POA to take over. YOU need to be top priority from now on...much love and many blessings. Healing energies coming your way daily...Elizabeth
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