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.
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I am dealing with a similar situation, which I don't need to go into here. But please know that your story has motivated me to make some difficult care decisions concerning my 92-year-old mom that I have been putting off. For what it is worth, that is a huge gift you have given to me, and I greatly appreciate it.
Please check back in here and let us know how it is going. Best wishes to you.
So often in these threads people suggest stepping back from care-giving and say take care of yourself first, otherwise you are no good to anyone. It is so true. Mom doesn't need to know, she'd probably just find ways to blame you for getting this. I'm sure my mother would! As for your kids, I think it would be best to learn all you can and have all testing done to see where you stand before bringing it up to them. By then you should have time to plan for your own future and then can best advise yourself and your family members. It might be good to at least broach the subject with your sister, in order to offload some care to her - you can give her details or you can just provide bare minimum, such as having a medical issue and you need to back off. Your choice how much information to give to her.
Given advances in medical care, and following the advice/treatment by your doctor, you have a good chance at many more years of life. Don't focus on the *possible* symptoms and fallout of this condition or the timeline - with good care and treatment you may never have to worry about them. Remembering how it was for your grandmother is no way to look at it today! She did not have the benefits of today's medical systems.
Clearly to reduce some stress AND focus on yourself and the rest of the family, offloading some responsibility for mom is advisable. Others suggested appointing another POA - unless the documentation specifies a secondary POA, you won't be able to do this in a legal sense. Mom has dementia, enough to be in MC, so she cannot appoint another and a POA cannot appoint someone else - HOWEVER, you can delegate duties to others, if they will comply. Offload as much as you can and limit visits (4 hour drive is stressful enough, never mind the visit!!!) Hopefully her financials are stable and require only minimal intervention on your part. Medical - this is where sister might be able to fill in for you, if mom needs a lot of medical treatments.
Not knowing a lot about this condition you have been Dxed, I did a lookup. There was a nice overview at:
https://www.heart.org/en/health-topics/high-blood-pressure/the-facts-about-high-blood-pressure/pulmonary-hypertension-high-blood-pressure-in-the-heart-to-lung-system
From that site, this was the most positive statement and stood out to me:
"While pulmonary hypertension has no cure, you can live an active, fulfilling life by working with your doctor to manage your symptoms."
Focus on that!!! You CAN still have many years of active happy life!
Best of luck and keep your chin up.
God bless you.
Hugs!!
Do I want to devote my time to caring for my mother, who is in a good place with great care?
Or do I want to devote my time to caring for the family I have chosen - my DH, my kids, and myself? And even more, what do I love most about this life? What things give me energy, happiness, and fulfillment?
In addition to the medical care you now must arrange for yourself, I hope you're able to dig into your most deeply held and cherished values. Learning them may surprise you; they might not be what you expect! But it's all okay. Knowing these things about yourself will help you make good decisions as time goes on and life throws different things at you.
Sending support and energy your way. Never apologize for "wordiness." Keep us posted on how you're doing!
You are in the best possible position, mentally and emotionally, to handle this diagnosis. You have great strength of mind and heart and it is time to direct it towards yourself. You have taken good care of yourself in the past and so will do it now. Work like heck to keep that positive attitude - it will help you in every way - the mind and body are so interconnected.
I don't mean to raise hopes, but have you gotten a second opinion? That's always a good idea, if only to be sure you've explored all avenues.
Be open to alternative therapies, also, if they seem at all relevant. For example, Eastern medicine may be a good supplement to Western. I have been impressed how helpful it can be to use different modalities to get at a physical problem, and not rely just on my Western doctors.
It's a good time to build a plan for your finances, healthcare, housing. You can always change it, but having a plan can bring peace of mind.
It's also time to start building a support community for yourself, if you don't already have one - I'm thinking of people who you can meet in person and talk with. A therapist may be helpful, also.
There is still lots of joy out there for you. Thank you for sharing with us.
Prayers right now you!
At 65, my own "organ recital" includes a few things but not, AFAIK, high blood pressure. My Gran suffered from it, took meds and lived to 86. My mom suffered from a heart murmur diagnosed at 25 and took meds, lived until 87 in her own home until passing at 90. If these events took place so many decades ago, it stands to reason that your heart issues will receive excellent, improved care in 2019. Best wishes to you.
(((HUGS)))
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!
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.
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.
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...
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
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.
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.
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.
Thanks for your insights and prayers. I'll be still and wait for God to reveal His plan.
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.
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
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.
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!
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!
I wish you many happy times with your husband, kids and grand-kids. That needs to be the priority. The only priority, imo.
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.