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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.

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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)))))).
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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.
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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 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.
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Oh no!!! Can't, I'm sending you lots of {{{{{hugs}}}}} and best wishes. I just want to add that doctors are wrong all the time especially about how much time a person whose determined to live has left to live. The Pulmonary Hypertension Association offers so much information for you. Please transfer the energy you've been giving your mother to learning about PH. You are in my prayers. Again {{{{{hugs}}}}}
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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...."
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katydid1 Apr 2019
Well said DesertGrl53, Well said!!!!
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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!
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Thinking of you!
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https://phassociation.org/types-pulmonary-hypertension-groups/
This might help. PH is just high blood pressure. Medication along with oxygen is used for that.
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People ran from Fukushima and didn't look back. Do the same for yourself, run as fast and far away as you can. Dealing with this is going to be an agitator to your condition.

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.
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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
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I agree with everyone else. Your mom is being taken care of by professionals. Turn all your attention to yourself now. Find out more about your diagnosis and what you can do. Make plans to enjoy the years you have before you. I am very sorry for your situation and keep you in my prayers.
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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.
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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!
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ExhaustedPiper Apr 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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Cantdance,

Yes, you Are going to be OK, especially with that great attitude of yours! Fight fire with fire, and learn all you need to know about PH, as well as keeping up on your good health regimine, and especially keeping your stress levels down.

I am sorry you have been given this crummy diagnosis, but thank God you have good family that loves you, and will keep you in good spirits!

Your being proactive in regards to minimalizing your involvement in your Mother's care is most important, there are the proffesionals to do that work, and leaning on your sister for more help in doing all that now, I am sure that she will understand. Take Care!
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I speak as someone whose parent had PH. He regularly exercised, just like you, although he did enjoy his rum.
The early diagnosis will help you prepare for the self-protective actions you need to take. Wear pressure stockings when you need to. Definitely get tested for sleep apnea. It commonly appears in people with the disorder, and treating it will prolong the 'good years'. My father's was secondary to pulmonary sarcoidosis, so his treatment path may differ from yours.
However... stuff that raises the blood pressure is very, very bad for PH. You probably have been advised to cut the sodium from your diet and have been put on something to help control the blood pressure, but emotional abuse and stress also put you at risk. My parents bickered throughout their marriage, but near the end the poor man would turn blue during arguments.
I really think you need to release the reins with your mother for your own health. My father passed away in 2012. I hope that, since that time, they have developed new treatments for PH that will prolong your good years and your life.
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CantDance Apr 2019
Sarah, I believe you! Many moons ago, before this diagnosis, I was advised by my primary physician to curtail my contact with my mother for the sake of my health. As it is, I care for her remotely. It is truly a blessing that I live 4 hours away. So much the more now! I visit her once a month and keep the visits brief. The longer the visit, the more likely she is to misbehave! And not just with me.....sis also. Mom is such a pill she's driven away most the family. She's a real show-timer: all sweetness and light around everyone but family. It's tragic, but not of my making. Mixed in with the dementia is seriously disordered thinking. Mental illness, maybe? Which would explain a lot. I'm pretty zen about it now. This forum has helped me enormously. People here have "been around the block" a time or two. The secret is listen to their wisdom, apply what fits, and put it into action.
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I see you’ve had good advice and you e got boundaries in place. The only thing I would add is to see your mom every other month rather than every month. She’s well taken care of and you’ve really done your bit. My best to you as your journey ahead! Hugs!
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sudalu Apr 2019
I wouldn't even go every other month to visit. First and foremost, take care of yourself. If those visits make you anxious, don't go. She's lived her life. Now it's time for you to live what's left of yours (hopefully many stress free decades). If that dreaded guilt causes stress, call her and explain the situation. Then detach.
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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.
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cherokeegrrl54 Apr 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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I have been thinking and praying for you, CD, and a Bible text came to mind to share with you. I'm sure you're familiar with it: "All things work together for good to them that love God, to those who are called according to His purpose." Rom. 8:28. I love it that this text does not say *some* things, or *many* things or even *most* things. It says ALL things. And God "is not a man, that He should lie," so we can take this to the bank; we know it is true! That means even this dx is going to be a blessing for you in some way, CD!

Maybe, just maybe, because of this dx, you will finally be free of the misery that is your mother? I don't know.

I, too, had a miserable mom. I had to overcome an agony of guilt and anguish to make the decision to set myself and my children free from her toxic behavior by removing ourselves from her presence and influence. I grieved for years (no counseling, couldn't afford it) but I came out on the other side, where I finally realized I'd done the right thing - for both of us.

I'm bipolar and was undx'd and unmedicated at the time, in my 40's. I was really unwell. I had come to realize that "honoring my mother" did not mean "tolerate abuse from," it meant staying as far away from her as possible, lest a homicide result. It took years, and meds, and later, therapy (insurance, I think, I don't remember) before the hurt and rage cooled, but it did and eventually I was able to understand and forgive her for her mental illnesses and addictions before she passed, though of course she knew nothing of it. This may sound terrible, but I was able to think of her as a bees in their hive. I did not have to hate her, but neither did I have to crawl in the hive with the bees. I knew if I did I'd get stung. It just made good sense to stay clear of the bees!

It is good to be at peace within myself over this. I could not have reached this place of healing if she had remained in my life. I pray peace and healing for you, my friend, of every possible and necessary kind.
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CantDance Apr 2019
Desertgrl, I hear truth in every word. I, too, used to think honoring a parent meant pleasing, accepting, putting up with abuse. Not true! Forgiveness and healing can't be forced. They happen when your mind is "ready." I admit where Mom is concerned I have more work to do (forgiveness and letting go). But as time goes by, I see more clearly how troubled she was and is and how totally unequipped she was to be a parent. With understanding comes forgiveness.

Thanks for your insights and prayers. I'll be still and wait for God to reveal His plan.
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Lots of sympathy AND empathy. I am a non-smoker who has asthma & mild COPD - from second-hand smoke. I believe your condition is treatable AND I believe you will outlive your mother. I didn’t develop PH but respiratory ailments are no joke. See a pulmonologist, get moderate exercise, and stay as healthy as possible. I was diagnosed in my 40s and am 81 now. Best of luck!
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CantDance,
You'll be in my daily prayers for everything you need to improve your diagnosis and live a healthy and happy life. As you know, all things happen for a reason, and this is a wake up call to put yourself and your family first.
I completely understand how a difficult or narcissistic parent can drain you mentally, physically, and spiritually, and those are the areas you must now concentrate on and take the suggestions here and from your doctors that speak to your wellness.
This site has made such a difference in my life, and I come here when things are good and bad to gain and keep the strength needed to keep safe and healthy boundaries. I also keep everyone here in my thoughts and prayers. It's difficult in different yet similar ways but we all understand.
My best to you and each person who is trying to love and honor their parents but also maintain their lives.
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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.
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StandstoReason Apr 2019
What a wonderful, practical, full-hearted response. Thank you!
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Buddy.....Lloll....these people made it through the depression beat the Germans in world war 2 and built the nation. Believe me they are not going to care much about what constitutes a good personality or attitude in the eyes of a 21 st century person. Best you can do is play along a bit.
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Leave this in God's Hands. Don't Overthink it. Prepare if Necessary for Mom in case of tan "Emergency" and what would Be Best from the Rest for Mom..God love you, sweetie.
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I had a similar thing happen to me. My mom died last year and I did in-home hospice for her in her home in the boonies of Maine. After her passing I was on deck to care for my 84 year old dad who suffered from congestive heart failure and Mesothelioma. He had been told he had a year to live. He kept telling everyone he had beat it and felt fine. Constantly he would fire the people I would hire to help him, wanting only me to do the job. But I live 2 hours away and had a job and home to care for. I also have 7 grown children and 9 grandkids all down here near me. So I did the best I could. But I got tired and his constant outbursts and constant telling me I don't do things as good or like my mom really got to me. He was really verbally abusive. I started to feel really sick, like you do with the flu. Even though I felt so bad I still looked like I wasn't sick. I would be up all night with leg cramps and pain. So one day when I was home checking on things I saw my doctor. He ran tests and I have Sacroidosis in my lungs, chest, thyroid, skin and eyes and now this week I found out its in my neuro system. My dad passed 6 mos. after my mom but I swear to this day it was the stress that brought this all out. I had fought it years ago and it went into remission but high times of stress can make it shed. I feel like death and am looking at disability :( It's not easy being a caretaker. My mom was a breeze she did everything I asked and then some. My dad was a fighter and fought me on every little things. I hope you feel better. I tried to get my dad to undertand how sick I was and he just laughed. Sometimes its better to not even tell them. When they don't seem to car or are only into themselves it just makes it hurt all the more. Prayers :)
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nymima Apr 2019
I attribute the stress of caring for my difficult mother for my cancer. I was so stressed out the first 3 1/2 yrs of caring for her that it made me sick. I had to change the way I deal with her or I would risk my health again. I am still her caretaker 3 1/2 yrs later! But her health is not as good, so she is not as combative and mean. I pray to outlive her just so I can feel what life is like again without care taking. That would be a gift after all this!
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My prayers are with you...You’ve imparted me with such wisdom on your(our) caregiving journeys..I re-read your posts as reminders on my journey.😇

Time for you..your health, your bucket list, your hubby, kids, etc..
As you’ve reminded me.. Great staff take care of Mom, let calls go to voicemail, days( not hours!) for your needs..Sow the love, laughter, priceless memories w your immediate family..Prayers & hugs to you.. cinzim281
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So sorry to hear this.
Prayers that you will ge
many more years than the Dr said.

I think I would tell my mom and if she can't be nicer to you, while having a facility take care of her, I would lessen my visits.

You deserve your last years being spent with in peace with those you love and live you back.
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MJInslee Apr 2019
Dear bevthegreat, (a wonderful online name, btw) Your reply is lovely, except I have to advocate that the mother not be told. In my case, so much like the original post's, my mother did not treat me any better. She was not nicer. She had the best care, and my brother and I doted on her. I have a single regret: Telling her that the reason her beloved younger brother did not visit, was because he had died (years earlier before her dementia). She was shocked. It did no good. She still asked for him, etc. I wish I had not delivered that news to her at that time. I kept all my own bad health news to myself, as she wouldn't have been able to be any consolation.
I like your suggestions to lessen the visits. And your kind wishes to get many more years that predicted, as she does deserve spending her last years in peace with requited love. Thank you for reaching out...
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This could be me writing this story, but I was diagnosed with Non-Hodgkin Lymphoma 2 yrs ago! My mom still lives in her own home a few doors down from us. She is 93 yrs old with a heart condition due to valve problems. I haven’t told her about my diagnosis as I don’t want to stress her out. It just wouldn’t be good and would accomplish nothing. My daughter moved back from another state with her son just to be close-by in case I need help with my mother or I need help! I had visions of my mother out-living me! Fortunately I treated for the cancer and have been in remission, but I am still not at my good energy level.

I am the only one left out of her 3 children. My 2 sisters passed away with health conditions, as well as my dad. I had to pick up the ball over 7 yrs ago to care for her because she was legally blind and couldn’t be independent anymore. So here we are. I pray for her sake that she goes before me because my daughter works 2 jobs as a single mother and my mother will have to go into a NH. So far, she manages okay on her own, with help from me however. Her latest prognosis of valve problems is causing some very difficult health situations which I am trying to get to the bottom of, and things are getting a bit out of hand. But I understand your situation. It is scary. Life is unpredictable.
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CantDance Apr 2019
nymima, thanks for sharing your story! I agree with you about not informing your mom. It isn't useful on any level. With dementia my mom just stresses, forgets a few minutes later what she was stressed about but will still be upset, acting out, etc. Better to maintain the unemotional "gray rock."
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I, too, am 65 and have a diagnosis of PHT, along with aortic valve stenosis, mitral valve issues, chronic heart failure and diastolic heart failure. I have had a pacemaker for 10 years because of sick sinus syndrome and have had 2 cardiac ablations and a cardioversion for a-fib. Was in the hospital 4 times over 6 months and ended up with a pericardial window with 3 tubes draining fluid from my lungs and heart. All this as a result of radiation treatments I had 43 years ago for Hodgkins Lymphoma.

I’m sharing this to encourage you to find a doctor who is current with all the latest research and treatment options. My doctor - researcher and practitioner at one of the top hospitals in the world - is full of optimism and even though he says I have an 85 year old heart in a 65 year old body, he has been very open about all the steps we will take to treat these conditions. Has your doctor mentioned a CardioMEMS to you? My doctor is still trying to get approval from Medicare or through a trial for it, but it provides real time info to the doctor on what your heart pressures are at any point in time. There is so much research going on now - there’s no reason to feel anything but positive and hopeful. Good luck to you!
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You know how to care for yourself and get the answers you need. I suggest you stay away from your mom and any perceived duties about her for a very long time. It's wonderful you have a sister. Lean on her. I nearly died 10 years ago from heart failure. I recovered, still have the issue with my heart, but learned to manage it with no further decline. Just stay super vigilant about your own being, including your mental state. I think you know how to handle this news and how to go forward. Best wishes to you.
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Dear Can't. My heart goes out to you ((HUGS)). You have received such good advice from this forum that there is nothing for me to add. Please take good care of your self and put yourself first. If you need professional help to do so, get it.

(((HUGS)))
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