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Sschrader32 Asked April 2020

Is it normal for parents to hide doctor's feedback?

My mom is 80 and fairly healthy; some heart problems. My dad is 90 and has had congestive heart failure issues since his open heart surgery years ago. Last week he was rushed to the hospital and after testing negative to COVID 19, they finally drained his fluid. They also said he has a blood infection. He lost 11 pounds! He was able to come home on Saturday and went to Cardio Dr today. They called and said Dr has two suggestions that they are going to talk about and decide. Then the Dr wants to see him in a month. My thoughts- severe heart failure they have an option to do something or not do something. Which I want them to decide on their own. How do I support them with their privacy, help support him for end of life but not get over emotional? Life is not normal now anyway, but how do I try to keep as normal as possible?

Lockett2166 Apr 2020
Ask the medical people to talk with them and give them the options (but keep you posted) thus allowing them to talk with the right people about what they want. If you do it, it could be stressful and cause confusion. Then, right or wrong, support their choice and let them know their wishes will be it.

Daisy9 Apr 2020
We made a point of spending the majority of the day with my MIL at least once or twice a month when she lived in a near by town. EVERY time we visited she told us "I've just seen the doctor (dentist, eye doctor, etc.) and I feel good". We seriously doubted she had seen all her doctors every month but never commented. Only later did we realize she was losing time and exaggerating her visits, probably as a side effect of her Alzheimer's, the extent of which we did not realize at the time.

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Llamalover47 Apr 2020
One can live a long time with CHF and until you know, support them as best you can and try not to worry.

97yroldmom Apr 2020
The book “Being Mortal; Medicine and What Matters in the End” by Atul Gawande is really helpful. PBS made a movie based on this book several years ago.
If you google him you can find several interviews. His five questions we all should be asked are great conversation starters and might feel right to you now.
Privacy is their right but I agree with helping them to understand their options and letting them know you are available to help them get answers and assistance. If your dad has had CHF for years then I can imagine that he is very tired.

Isthisrealyreal Apr 2020
My mom will tell me that the doctor said, blah, blah and blah. I keep telling her that I would find a different doctor that would speak English instead of charlie brown adults language.

She is the one that brings up the appointments and then doesn't want me to know anything. Okay, so I just visualize Charlie and his gang while she is blahhing away.

I think it is very common.

EllensOnly Apr 2020
When Mom's cardiologist wanted her to have a valve replacement at 83 I knew she wasn't up to it.  We went to the specialist and he went over everything with both of us and her response was NO WAY!  It was her decision, I went because I wanted to hear what was said and be able to ask questions so that when she had questions later I had some knowledge.  From there forward I went to all appointments with her Drs. for the same reason.  Not to make decisions for her but to have knowledge and help her follow instructions and she only half listened to what was said.  When we got to the end I had enough knowledge of what her conditions were and what her wishes were to make the choice of comfort care when she could not.  Now as I have a few health issues of my own I try to keep my son informed so if there is an emergency and his father isn't available he will know how to help me.

my2cents Apr 2020
Let them decide, but you need to be there in the meeting to be sure they completely understand what the options are. Then you discuss with them and make decision. Don't think of it as taking away their ability to make a decision, rather, ensuring they understand what the dr says. (I know intelligent, young people who have no idea what a dr just said to them)

LNReason Apr 2020
Hope all these responses help. I know situations where parents do not want to burden their children - They don't want to be a burden to them so they don't share everything. It is evident that you love them and are concerned.

Being prepared and asking questions ahead of time is great. Best wishes.

sboyle625 Apr 2020
I have insider's point of view, perhaps it could be helpful. My wife Cheryl is transitioning into the final stages of DDD. I am Cheryl's caregiver and also enjoy congestive heart failure. Fifteen years ago I was given two months to two years to live. Have tried all the treatments and have had to many "second opinions".
I'm a statistical outlier. So much for the happy story😁

I make phone calls & send out a weekly emails to friends and family with news and updates. We have three middle age sons each of course reacts differently
to our challenges. Each of our sons respects our privacy
What I find works best are the smallest of things, ask if there is anything you can do to help. This may sound strange but every once in awhile call them what you did when you were a child.
I remember praying that my mother would not move in with us after my dad's death. Just keep the lines of communication open & caring without perceived condescension.

Best of luck

Alicew234 Apr 2020
One can live for years with heart failure. Try not to worry. And yes, in my experience, it is very common for parents to keep medical information to themselves. I don't know why. We couldn't even get (some of) them to keep their medical power of attorney in the loop. I have to say, it does nothing for family unity to make your children feel like you can't trust them with your private information.

MargaretMcKen Apr 2020
I had a different reaction reading your post. It could be on the cards that the talk you want to have with your father could hinge on his concerns about your mother if he dies. He may ask you to look after her. She may expect to move in with you. It will be a very emotional time all round. Make sure that you don’t promise something that you don’t want to do, and that is not really in the best interests of all concerned.

JoAnn29 Apr 2020
I agree with Grandma. This is a decision between Mom and Dad. If he needs to be drained, then his CHF is in its final stages. I would say one decision may be Hospice. Or to continue with drainings.

Daughterof1930 Apr 2020
My dad has end stage congestive heart failure, which sounds ominous but can last a long time. It’s so far been a slow, steady decline over years, but becoming more steady. He mostly ignores his cardiologist and the advice he’s given, especially the parts about diet and sodium intake. He’s admitted to the hospital every few months and fluid is pulled off, so far the most was 16 pounds. We’ve run out of further treatment options other than Lasix at home and the periodic hospital visits for pulling more fluid.
I have no way to know how long this may last for your dad. It often isn’t quick. As adult children, we just kick in to listen, be of help where it’s needed, and provide encouragement.

Grandma1954 Apr 2020
Just let your parents know that you love them and you will respect any decisions they make regarding their health.
Let them know that the only time that you would have reason to question a decision is if the doctor(s) thought it was unsafe.
So for example if they elect NOT to obtain treatment you would support them and respect their wishes. On the other hand if it were unsafe for them to live where they currently living you would have to have a discussion about options.
Also let them know that these are decisions they can make but IF they want your opinion you would be happy to discuss with them.
The question is are you ready to discuss End of Life with them?
You might want to call a few Hospice in your area and get some information so you are ready and you can share that with them. And there are options Palliative Care and Hospice are 2 sides of a coin and if they are not ready for Hospice Palliative might be an option.

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