It’s one of the things we midlifers, hanging out here in the middle-aged cheap seats, most dread: the idea that our parents may someday become ill. On a rational level, we know it’s highly likely that at some point we’ll need to step up and help take care of our moms and dads. But at an emotional level, we want our parents to remain in the driver’s seat, firmly planted in the position of authority figure, indestructible and steadfast.
My dread became reality two weeks ago when my kid brother called me with the news:
“Mom’s headed to the hospital. You better get down here.”
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Down here was sunny Florida. The call came on a Friday morning and by late Friday afternoon I was walking into a South Florida hospital room to be greeted by Mom looking pale and frightened. But then I also saw this in her eyes as I walked to her bedside: relief.
I learned a lot over the five days that Mom was hospitalized. I learned that when it’s necessary, I can drop everything and focus on what’s truly important. I learned that people deal with stress in very different ways: I become take charge; take-no-prisoners; lead, follow or get out of the way. That demeanor needed to be tempered often to let others deal with their stress and emotions in different ways. I also gained some valuable life experience regarding what it takes to survive in a medical environment.
- Medical professionals do not speak the same language we do. When I worked in the federal government we had our own special coded language of acronyms and government-speak. I could string together sentences consisting almost entirely of three-letter abbreviations. It’s no different in the medical world. The problem is, when you’re sick and you’re scared, those long phrases for medications, spoken with such authority, are extraordinarily intimidating. I found myself often asking nurses to repeat or even spell out the medications that were being given to Mom.
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- Everyone in the hospital needs an advocate. I discovered I could provide insights for the doctors and nurses that Mom was not remembering to bring to their attention. When doctors were there to examine her, I would check my list and gently remind Mom to mention things like hey Mom, did you want to tell the doctor your stomach has been upset? Or, Mom, didn’t you want to ask for more ice the next time the attendant was in the room? These may seem to be trivial issues, but they accumulated quickly. Mom’s job was to get well. My job was to manage all the other “stuff.”
- Write sh*t down. I became a crazed list maker. It was the only way I could keep up with everything that was happening. During one of the initial doctor visits he entered the room and began to quickly explain Mom’s condition to her:
“So, with c-dif colitis we treat you intravenously…”
“I’m sorry doctor, Mom has what?” I asked.
“C-dif colitis.”
“And what is that exactly?” As I was asking I was also taking notes on my smart phone.
The doctor curtly replied, “Since you seem to be looking that up on the Internet…”
“Um, no doctor, you see, I’m just taking notes on my I-phone. I suffer from CRS–can’t remember sh*t–so if you don’t mind I need to write this down.”
From then forward he was forever known to me as Dr. Jerkface.
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Here’s the thing: most doctors don’t speak human, they speak medical school. You have to ask questions, take notes, and let it roll off your back when they seem exasperated with you. I’m sure they thought I was an over-protective daughter. Don’t care, not even a little bit. And, for the record, not all doctors are jerk faces.
- Nurses get to go straight to heaven. The nursing staff at JFK Hospital is exceptional. Some of the most loving individuals I have ever met. Their patient demeanor and caring dispositions were nothing short of amazing. Even when I knew they were dog-tired at the end of a 12-hour shift, they always greeted Mom with a smile and a kind word. I hope they know how much they are appreciated.
- Even in the worst of circumstances, a little humor helps. Mom was presented a nasty tasting medicine to drink and the nurse asked if she wanted to mix the medication with something like ginger ale. When Mom deadpanned back, “You got any tequila?” I knew we were on solid turf toward recovery.
Mom is back home now and well on her way to being fully healthy again. I love you Mom, early Happy Mother’s Day and I hope to be sharing a tequila shot with you in the near future.
Have you ever taken care of a sick parent? What were your lessons learned?
Cheers,
Kimba
Thanx for being my advocate. I can never express the gratitude & pride I feel for your take charge attitude. You know I love you & look forward to seeing you in June..under better circumstances. Great blog & great responses.
Mom, I was happy to be there for you, then and and always.
How your post rings true Kimba! It is indeed a shocking thing to find a parent in hospital, and your point about learning a lot yourself was certainly my experience too.
Two years ago my dad went in to a Specialist Hospital for a Quadruple Heart Bypass.
Take 1 … Leaving early, mum and I drive my dad to the hospital, then get him settled in. Dad’s having many tests to make sure he’s all set for the Operation. My brother arrives from France where he’s living and we chat till time to go and check into our hotel some miles away. Next day we return, and spend time, doing what you do when marooned in a hospital! Dad’s not allowed food or drink whilst waiting for the surgeon to find him a slot. At 6pm a doctor comes by to say that Dad will not be having the op that day (been emergencies) so he has to go home!!
Take 2 … 2 days later he gets a call to say can he go back to Hospital 4 days later! My brother is off to the US on business, so I alone go through the same routine with mum… Fortunately, this time the Operation goes ahead.
Dropping everything, and spending those days at the hospital, and propping up mum was an emotional and surreal experience… but like you I have nothing but praise for the nurses. Luckily Dr Jerkface wasn’t around! I looked up all those long words too, and we had lots of questions!
What a relief, when you know they made it through.
So pleased your mum is back home and doing good 🙂
Jacs
Jacs, you and I are now kindred spirits in more ways than one. Here’s wishing that neither of us ever needs to go through this again, and, if we do, we don’t have to deal with Dr. Jerkface.
I agree. It’s always nice to have some act an advocate when dealing with illness. I always end up being that person for some reason. I guess I ask all the right questions. Nice post and lovely story!
A toast to all the gals who show up, speak up, and take charge!
Kimba I know that feeling , both as I spent much time with elderly parents and not being given the correct info from doctors. They do think they live in ivory towers as i discovered when i chose to self- diagnose after beaming informed
Great your mother is healing
Suzie, you are a shining example of “be your own best advocate.” We definitely know our own bodies better than anyone else.
Thank you Kimba for your insightful, blog post that speaks from experience, the soul and shoots straight from the hip, bringing in a must needed ‘breath of fresh air’ especially to those often ‘stuffy and uncomfortable doctors offices’. The toss of the coin often leaves having to ‘do the research, be our own best Secretary’ digging into our characteristics of honesty….the ‘melting pot and spice’ that we call ‘she bear’ (or in my case Scottish, Welsh, Italian, English).
The metaphor you only imagine. We do this to protect, to be the most honest for your loved ones, and being so true to that ‘she bear’ that calls us into action. I thank you for your wonderful insight and I’m so pleased your mum is now well.
Aw, thanks Vanessa! I’ll happily wear the She-bear hat with pride.
Oh geez, don’t get me started. I lived 2000 miles away and moved back to care for my mother while she was dying. The Drs. were A**holes who had a different standard of care for people over 90. The, “You need to understand they are dying” is not acceptable for reasonable care,
it is scary when our parents get sick and have to be hospitalized. It certainly helps when doctors speak a language we can understand.
Hi Kim, I’m here from the Pub Bloggers Network and really agree with this post so much. My mom passed away 3 years ago after only a month in the hospital and keeping track of all the doctors who came and went and all the confusing words they kept tossing out to us was a horror.
You are so right about the advocacy part too!
I look forward to exploring more of your blog!
Susie
Thx for stopping my Susie. There’s got to be a better way to manage all the information that is thrown at you in a hospital. At one point I felt like I needed to set up a white board of who each doctor was, when they came by, and what they said. And this was just for five days, I cannot imagine what a month must have been like. I don’t know what the answer is, but I know that being fully informed is the first step.
Excellent post, and everything you say is so true! I have been known to ask doctors to please speak in words we can understand. I mean, come on.
I’ve heard that there are required classes in med school where they are supposed to learn the importance of clear communication and responsive bedside manner. I think it must not be a required course!
Your blog rings so true with personal experiences I have had – myself & family members.
Thank you for sharing yours… it makes others feel that they are not alone in their experiences.
Thx Betty. I am seeing here how many of us have shared these types of experiences. I wish there was a handbook that someone could receive as soon as a loved one is admitted to a hospital – maybe I’ll work on that!
Great blog! So glad it has a happy ending. You should send a link to the nurses at JFK to let them know! Maybe they will post it up for other daughters of patients to read.
Hey Dani, I might just do that – thx for the suggestion.
I would love to scream your point #2 from every street corner! We can’t downplay the value of advocates — ever! Glad your mom is doing better!
Thx Ruth. The experience really opened my eyes to need for EVERYONE to have an advocate by their side.
I’m not a superstitious person by nature but the older I get the more paranoid I become about admitting that other than the day of my birth I’ve only been in the hospital one time and I can count on the fingers of one hand the number of times I’ve been sicker than the sniffles. I’m starting to wonder if the woman upstairs has something truly spectacular in store for me to exit this mortal plain! Anyway, my point is I have little experience with either doctors or hospitals. Both of my parents have passed on but neither in situations that required lengthy hospital stays – good news I suppose. But I’ve definitely learned a lot from your experience – especially the importance of keeping a sense of humor. 🙂
Marty, may you have nothing bu healthy, happy days ahead of you.
I’ve had more than my share of doctor’s appointments. Most have been good, but some are jerkfaces. Making lists and having a sense of humor helps a lot
I find that humor can be the ultimate tool for disarming even the biggest jerk faces in the room. That and flattery, but I’m much better at making a joke than kissing an ass.
Glad your mom is better! And having had C-dif myself, I 1000% sympathize. Poor thing. What a blessing that she had you there with her. My mom is almost 90 and I’m helping her. She’s really sharp and with-it, but when she is sick, scared or nervous, she forgets things.
BTW, why are doctors so hostile to us trying to become more educated, via the Internet. Man, you really have to hide that sh*t from them.
First of all, you have my deepest sympathies with regards to your bought with c-dif, it is indeed terribly debilitating – I would not wish it on anyone. And, I have high hopes that I will someday be talking about my 90 year old Mom, she’s two decades away from that milestone. Doctors must have to deal with a lot of armchair quarter-backing from folks ready information on the Internet. I get that. But it doesn’t give them license toe be A-holes. IMHO.
Went through this with my parents, annnnnnd now! I get to go through this with me as the patient this time. In my 60s, been hospitalized twice in the last 12 months. Getting a surgeon to talk to me, not at me, to slow down, to repeat things. This is becoming one of my best skills.
Thanks for showing how you rock this!
Blessings,
Sue
Sue darlin, you need a virtual advocate and I am there for you any time.
I went through Multiple Myeloma with my dad when he was just 57 years old, and recently stayed with my mom for a week following a stroke. Not only do you need an advocate, you need to do your own homework. My dad’s oncologist put him on a calcium drip, but I read that with a lot of bone breakage too much calcium is already in the blood. I called the orthopedic doctor and he rushed in to stop the drip. Too many patients, too few caretakers, too many specialists. Be the best advocate your parent can have.
Donna that is SO spot on! I dove into every thing I could find out about my Mom’s c-dif colitis: causes, cures, expected long term implications – an informed patient makes better choices.
When I had my surgery (finally) three days after my car accident, the doctor came out and told my mother that both of my legs had been operated on and I was doing well. She called all my aunts and uncles to tell them I’d be off both my feet for quite some time – so when my uncle came in to see that I was only casted on one leg (because they’d actually only operated on one of them), he was quite relieved. Apparently the doctor got me mixed up with the surgery he’d done before mine. All that to say – yes, you’re absolutely right. And most of the nurses are angels.
Oh man, I’m not sure I would have forgiven that doctor for making such a big mistake! But they are human just like the rest of us so I supposed I shouldn’t be so quick to judge. Every nurse who worked with my Mom was bucking for sainthood – I have a new loving appreciation for their vocation.
I was never in this position but have great respect for anyone who cares for their aging parent/s. Your sense of humor will get you through the rough spots, which is obvious in your post.
Aw, thanks Carol. I come from a long line of jesters, so the humor is deeply embedded in my DNA.
I remember all those acronyms from way back when I was an Army wife. I’m so glad your mom is well and back home again. You both did a good job – you,supervising her care and her, getting well again.
Oh my gosh, I’m married to one of those Army guys! They get together at a cocktail party and it’s a completely different language. “He’s an O6, she’s a CWO 4…” sometimes I have to remind my husband that they do have first names!!
That advocate thing? It’s very important. All your advice: spot on.
Thx Carol. I now have such an appreciation for the hospital staff who work tirelessly to help the sick and ailing.
You are so right on about all of this. I went through it with my mom (colon cancer) my dad (heart attack and aneurysm) and my grandmother and great-aunt. Those that do not have an advocate (especially the elderly and confused) are so unfortunate and nurses do go straight to heaven. As for the doctors, I met a lot of jerk-faces but don’t remember their names. The ones I choose to remember are the ones who were kind, offered hope and treated my family like people not numbers. Great article.
You’re right Teresa, there were doctors that were kind and took the time to answer all my questions and showed sincere interest in my Mom becoming well and developing a healthy treatment plan. And you are the patron saint of advocates! I’m so sorry you’ve had to take on the advocate role so often with your family.
I do every single day but in the beginning I wish someone would have told me to be prepared for it. I was smacked right across the face with so many things at once. There are so many little things that you never seem to think about that pop up all at once. We’ve since gotten over this part of life and are amazingly settled into our life where mom is no longer the parent and I am no longer the daughter and it is okay…for now! I would say have a conversation NOW. Who’s job will it be to do what? Who is going to manage her care? Get a POA you don’t have to use it yet but having it beforehand can save you especially with the medical stuff. Without it if she can’t speak they can’t tell you anything at all. It’s about $300 now or $3000 later and lots and lots of headaches.
Rena this is all GREAT advice. Especially the POA. This experience has really made me pay attention to how things need to be handled if and when something like this ever happens again.
Another great post …… So true, so touching !
Thx Hon!