Fawnby Asked January 2023
Do you send bulletins to keep family informed about every serious health issue?
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I receive frequent emails from relatives about in-laws’ health decline. Lately one has been diagnosed with dementia and another is clearly on the way to that diagnosis. Last year someone had a kidney hospitalization about which everyone was informed, complete with info about lab reports. With these folks, almost every doctor visit produces an update for family and friends and requests for prayer. Sometimes it's downright depressing. My husband and I prefer to keep our medical issues private, but what do you do? Do you feel the need to inform family of every little thing? Just curious about how others handle it.
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I'd appreciate knowing what's going on with the in-laws. My husband and I weren't told until two weeks after the fact that his dad had had a heart stent inserted, nor were we told when his mother was hit by a car.
They're not big on communication, and we're the only ones who don't live within an hour of my in-laws, so we're continually out of the loop.
And also technically releasing personal medical information is a violation of HIPAA. Whoever is POA for Health should keep Health Information private.
There is a site, CaringBridge. Someone can set up the site and anyone that is interested can go to CaringBridge and get information and can also post questions, send messages and the like. One post in place of several emails to friends and family members.
If you do not wish to read about the health matters of "Aunt Betty and Uncle Marvin" you can chose to delete email or just give a quick glance to make sure "Betty and Marvin" are still alive. (no disrespect to either).
I knew that when certain elderly aunts and cousins called me. 99 percent of the time, it was either that someone died or someone was in the hospital.
I do have one elderly cousin who even when she was in her late 90’s would talk about what she was going to do the following year! She was upbeat and positive.
So much of this truly depends on a person’s outlook on life. Some people feel that it’s important for ‘everyone’ to know ‘everything.’ Others are more private and don’t want others knowing anything.
I went through this with my husband. When he was diagnosed with cancer, he asked me not to tell anyone. I respected his wish. I really think that he needed to process the situation privately first. Later on, he told me that he didn’t mind me sharing it.
Everyone in my family were pretty private about health issues. Total opposite on hubby's family. Oh my gosh, I am ready to use Excel to keep track on who has what. I would need 10 pages just for hubby's grown daughter as she is an over-board hypochondriac.
I've decided the phone rings both ways...my kids ask about their Grandparents. The others do not.
Half of them lived out of state so there wasn't much they could do realistically at the beginning. As soon as I figured out this was going to be a lot of work almost every day, I decided to send out regular emails to the family, but they were categorized in the subject line: Daily Update-FYI Only, Update-Please Read and Respond; Urgent: Need Input ASAP; and after that it would roll into texting. I did this because I was the daughter-in-law, and step-DIL so I never wanted anyone to be able to say "I didn't know..." or "You shouldn't have done that..." for any of the decisions that were being made on their behalf. For 1-1/2 years I performed almost daily care or management, chauffering, coordinating, researching, decisioin-making (even though I was not the PoA but the actual family PoAs allowed it), etc. Maybe your in-laws are doing it for similar reasons, or they feel under-appreciated, or it is a passive-aggressive way of wanting help?
My husband has a myriad of health issues, mostly stemming from exposure at the World Trade Center. Frankly, it's more uncommon for him to go to the doctor and NOT have them found something else. Most times, at least to us, it's minor, but to his sister AND our children? I would rather tell them about every "little" thing than risk NOT telling them and then that "little" thing morphs into something much bigger and I get accused of *not* telling them.
My daughter yelled at me because when she was in college, and my mom took a fall, we didn't call to tell her. Well, mom was falling every other day, and I didn't think it was a big deal - mom had no injuries - but my daughter was upset that I kept her "out of the loop". In her mind, anything that precipitated a trip to the ER was something I was supposed to notify her about.
And don't even get me started on telling some people and not others!!
Sometimes it's just easier for the person disseminating the information to just put all of it out there to everyone and let THEM decide what's worthy of worry and what isn't.
I get what you’re saying. I think everyone has to decide what is best in their particular situation.
You have to do what is best for you. It’s becomes exhausting repeating things over and over too.
I know what you mean about the ‘falls.’ My mom fell quite a bit. So, every time she fell, her alert service called the people that I placed on the call list so I didn’t have to make phone calls about ER trips with my mom.
But then, my phone was blowing up while in the ER while trying to handle the situation at hand. It was always a constant balancing act. Sometimes I was sorry that I had added people to the call list.
I can understand that people live far away from each other but to not call a brother, who seems to keep in touch, his brother died I just can't imagine.
I am with you these emails are a little much, TMI. (Too much information)
I agree. It crushed my dad when my aunt didn’t bother to call my dad when his brother died.
Like you say. if it is someone that you aren’t close with, it’s a different story.
Oh gosh, they wouldn't actually do that would they???
As a caregiver, I have sent email updates to the woman's son who just "adores" his dear mother, but refuses to assist with her care or even the decision-making about her care. The last thing I need his him showing up at the last moments of his mother's life asking whether such-and-such drug or procedure was ever tried. I would also cc two adult grandchildren on the same message. One grandchild asked me to stop. The other grandchild would occasionally thank me for the info. The son asked me to stop emailing updates and would rather I communicated differently (i,e. text, message in a bottle?, telegram?). He said he doesn't like checking email, but a text message pops up on his phone. I found this hurtful. I have vision problems, and email is much better for ME than text. I think I can choose the mode of communication since I am caring for the mom? So, I still write the emails, but I send them to myself. That way, I have dates when things occurred and the specifics and I would not have to remember off the cuff when "dear son" frantically started asking questions one day. He has never once asked me why he does not receive updates anymore. Granted, my updates could get lengthy. But, even the longer updates were only hitting the most pertinent things. Writing up every single thing would fill a novel on a monthly basis.
The other good thing about CaringBridge is that the people who are invited to read the site get email/text notifications when I post an update, and I get notified when new comments get posted.
If it's the "circle" close family I just send a text on a thread to my siblings.
The rule is whoever breaks the thread (basically answers off of the continuous text) since baby sister pulled this stunt when Mom was in hospital during the Pandemic, then the thread is done.
I agree, medical stuff is ok on the surface in the supermarket. Mom had a fall but she's back home and on the mend. That's it, end of story. No blood work details, patient continues to thrive or any other TMI--too much information.
When the ladies from the prayer chain call we just request prayers for healing. Even the Churches do not "advertise" health issues but keep it generic.
I think people get so upset that when a loved one has an emergency basically in the early you will tell anyone who will listen because your routine has been thrown off and you don't know what you are dealing with.
As time goes on and the sickness progresses there's an acceptance where you fill in your close circle of friends, prayer chain and try not to let it consume your entire life.
Amen...
I have a very quiet mystery with its lack of family notification (just the opposite of too many messages) to share. I visit my father's grave often. Back in 1956, he divorced my mother after six children, I the youngest, and remarried about 5 years afterwards and fathered another son by my stepmother. One day in late 2020, I discovered my late step mother's name added to Dad's headstone. She had many medical problems and passed away in Alabama near where her son, my half-brother and his wife lives.
I notified family up in OR to check in with half-brother and his wife in Alabama if they arrived ssfe because of the toronados. They are apparently OK.
Just learned this weekend that niether my family up in OR, nor anyone else, was notified of our step-mother's death, because half-brother's wife thinks that Dad's first six children will seek his inheritance that had once been his own mother's (my paternal grandma's). Who is this half-brother's wife, a Gatekeeper? I would never seek money, nor am I'm aware that will anyone else will, just to live send love connection with our very fractured family. I am very alone with prayers and love.
He wouldn't answer texts, phone calls and often if I went to the house to put eyes on mom, he wouldn't let me in.
We had more than one family mtg where he promised he'd keep us all up tp date with a short monthly email. It never happened, not once in 18 years.
Mom passed in Aug and luckily, I had seen her just a few days before she died. I KNEW she was slipping and was becoming very tired and forgetful--had I not gone to see her when I did, I know her death would have really caught me off guard.
There's a fine line between sharing every blood pressure reading, blood sugar test, amount of insulin she needed, change of meds..stuff like that, no need to share. BUT the overall status of her well being was not shared and he'd complain that 'nobody helps'...but then made it impossible TO help.
They say its a two way street in fact its a one way they hold that information so we don't know. Sucks. BIL has dementia and is in a nursing home. They think I should share the finances with them when in fact I can't because of government regulations.
Prayers
Personally, I do not feel obligated to publish wellness reports to relatives whom we never see or visit.
When I assumed driving my wonderful mid 80s M-I-L to doctor appointments and to the ER, I decided to make sure all her children (they lived many states away) were on the same page. After each doctor visit for an illness, I would send a short e-mail summery of the problem and treatment plan, no labs unless one requested them. When M-I-L told me that she did not want aggressive care, I told them what she said and "please feel free to discuss it with her on their next call." When she need emergency surgery, I made sure she got to talk to each of them briefly.
My brother-in-law and sisters-in-law were appreciative of being informed. M-I-L got forgetful and was hard of hearing and so could not accurately relate what was going on to them. As her health declined everyone knew her desires and the medical problems leading to her current condition. When the time came to sign papers for end-of-life care, there was no family disputes, just time for them to talk to their mom about their love for her. Some even had time to arrange flights to visit her.
So done properly, informing those who need to help make decisions, worked well for our family.
On the other hand, my very private SIL was hospitalized for a week last fall with congestive heart failure. We never knew anything until she returned home & called to tell us. Two weeks ago she had a stroke & was hospitalized six days before her daughters notified us anything was wrong. We were able to see her twice before she passed away on day 9. They were honoring her wishes, but most of the rest of the family felt that we should have been notified sooner with something that serious. She had been more alert the first few days, but by the time we were notified, she was barely conscious.
I learned early on which of my husband’s five kids actually wanted to know about his health issues and which ones needed to know as little as possible. All live within a few miles of us. After his Alzheimer’s diagnosis over a year ago, two daughters (the oldest & the youngest) checked out saying they had gone thru it with their mother and they couldn’t do it a second time, but of course went straight to Facebook to post about their “poor Daddy”. Two other daughters keep in touch with me from time to time, but don’t visit. His son stops in regularly & offers to take him places so I get some time to myself. A few months ago, out of the blue, the oldest daughter called to take him to breakfast. They were gone about 30 minutes. She dropped him off at home & left (I found him wandering out in the yard). Within an hour of dropping him off, she had posted a picture of him on Facebook with a story of how her “poor daddy is losing his mind”, and garnered dozens of sympathetic comments, mostly from complete strangers to us. My husband can still scroll Facebook, saw her post (I’m blocked) and was mortified and furious AT ME over the post. But he didn’t want to confront her or have me step in. Some people just want to milk any drama they can from family issues.
Notifying those who should know and want to be kept apprised of the situation is fair. Those who aren’t really interested or aren’t close friends or family don’t need to be kept informed of every little thing. Those who are only in it for the drama need to be kept at bay. If my husband were hospitalized & appeared to be close to death, I’d tell his son & the middle girls. They could share it with the oldest & youngest if they felt it was necessary. Having purposely chosen to check out of his life, I don’t feel it warrants any effort on my part to let them know anything.