Apparently this is called a vlog…sort of…..I’m cheating. This is my Story Slam about the day I lost my Nana…………..she didn’t die…………….I actually lost her…………..in the mall………………….
“You Just Have to Laugh………..”
©2015 Cathy Sikorski
Category Archives: Caregivers
Real elegance is everywhere, especially in the things that don’t show…Christian Dior
It was going to be a happy day. After months of being in and out of rehab, my brother-in-law was returning home. His current rehab center was about an hour away from me, so I was a bit late in getting there to do all the discharge baloney.
Nonetheless, they called me when I was 10 minutes away from the facility, as his wheelchair transport was already there. The transport driver was ready to go and wanted to leave before I arrived.
“Is he dressed and ready to go?” I asked the discharge nurse.
“Yes, they are just waiting for you to get here and sign the papers.”
“Well, if he’s ready and they can’t wait 10 minutes, he can get going and I’ll be there to gather his things and sign,” I replied.
“If you’re only 10 minutes away,I’ll see if they can wait,” said the nurse.
“Either way is fine with me,” I pleasantly replied…after all, it was a happy day.
I arrived in less than 10 minutes, and went into his room to gather his things.
There was my BIL in his bed, in a hospital gown, just shrugging his shoulders when he saw me.
Right behind me followed the discharge nurse.
“I thought you said they were transporting him home?”
“Well, the transport driver said he heard you were going to be an hour late, so he left.”
“Where would he hear that? Twitter? Facebook? The Huffington Post? I literally just told you I was 10 minutes away!”
“I don’t know,” said the nurse, “but that’s what the front desk said when I told them to send up the driver.”
“Okay,” I responded incredulously and losing my pleasant disposition ever so quickly, “but you told me he was dressed and ready to go. He’s in a hospital gown.”
“Well, that’s dressed,” he said a bit defensively.
Now, granted, this is a rehab facility. Fashion is not the highest order of the day. And if you’re not running around the hallways, or eating in the dining room, a hospital gown may be your couture du jour. However……..
“Ummm…….no….that is NOT dressed for someone who is going home in a wheelchair and right to the dining room at his home, for his meals. I’m pretty sure no one wants a Sharon- Stone-Basic-Instinct reveal from a hospital gown , while having their salad course. It brings a whole new meaning to ‘dining al fresco.’ You need to get him dressed in his clothes which are in his closet here.”
To which my brother-in-law pipes up: “I’m a bit chilly.”
Ya’ think?
“You just have to Laugh…………”
©2015 Cathy Sikorski
TBI or TMI…..Huh!
When my friend, Lisa fell down a flight of stairs and suffered a traumatic brain injury almost six years ago, those of us in her inner circle, including Lisa, were completely unfamiliar with the rabbit hole we were entering.
Eventually, as we learned to navigate the medical system, the caregiver system, and the devastating financial consequences of just such a trauma, many in the inner circle, including Lisa became less and less cognizant of the fact that she continued to suffer from a TBI and that the long term ramifications were unknown and ongoing.
Because Lisa is an extremely lucky gal and has brilliantly navigated these shark-infested waters of unknown medical complications, many people, even in the medical field, and including Lisa, would take for granted that months and years into this recovery she was just fine.
So we would go to her neurologist, or neurosurgeon and they would tell her that this recovery takes time. And she would say, “but i feel fine!” Then we would go to the grocery store and the price of oranges would be higher, or they would be out of her favorite toilet paper and she would tear up. And I would tell her, “it’s okay, it’s the brain injury.”
And so I told her, ” it’s okay to tell people you have a brain injury. In fact, when you are interviewed by Social Security, or your family doctor, you need to tell them that things like that just happened in the grocery store, and it takes you unaware. That’s the brain injury.”
We would be out with our friends, and Lisa would either just stop engaging or step out of the restaurant. The over stimulation was too much for her. At first, we all thought she was being rude, only interested in conversations that were about her, (because she always jokes that oh, this isn’t about me?), but then we realized, then SHE realized that she just had to go rest, her day was overwhelming her quickly and dangerously. She has to continuously protect herself from possible seizures. So again, we told her…just say you have a brain injury and it makes you take some actions that seem weird to others.
“Huh,” she said.
So for some time, we would be at a medical appointment for say, her wrist, or her toes which would not seem to be the stuff of a TBI. And Lisa would wax poetical with the nurse, who was just trying to get her vitals, about how she has a brain injury and this is how it happened and these symptoms she is here for may seem odd to you, but not to me, since I have a brain injury.
Or we would be in the drug store buying shampoo and vitamins and nothing of any medical significance and she would tell the clerk that it was so nice to be out on such a beautiful day, and you really appreciate those things once you’ve had a brain injury. To which the 16 year old clerk would respond with a look of panic.
Or in a coffee shop, she would tell the waitress that she probably should not have any more coffee, because she has a brain injury and she’s thinking that since certain things can cause seizures and over stimulation is one of them for her, that perhaps too much coffee isn’t a good thing. But it really hasn’t proven to be the case, so what the heck, fill up the cup. To which the waitress looks at me with the coffee pot poised in mid-air with a “what-the-hell-do-I-do-with-that-information?” kind of look. And I just shrug my shoulders.
Or at the hairdresser when she tells her about the 40 platinum coils in her brain that stopped the brain bleed after her TBI, not that it affects getting her haircut or anything. To which the hairdresser looks at me with scissors poised in mid-air and I just shrug my shoulders.
That day I realized perhaps my advice had been taken a bit too literally and said, “maybe you can STOP telling everyone you have a brain injury.”
To which Lisa replied, “huh.”
“You Just have to Laugh…………”
©2015 Cathy Sikorski
Good Luck with that Appeal…….
This is a Medicare Card. Everyone’s Medicare Number is their Social Security Number.
Conversation with Medicare Appeal Board:
“Do you have the Social Security Number of the person who is appealing?”
“Sorry, I don’t.”
“That’s okay. Do you have their Medicare Number instead?”
I rest my case.
“You Just have to Laugh…..”
©2015 Cathy Sikorski
Is your Plug Male or Female……..
Today’s tale is a bit vulgar….but I find honesty to be the best policy.
As my faithful readers know, I, with no training or inherent skills, have become a wheelchair repair expert over the last few years. I was able to get a different BIL (code for brother-in-law) to transport the humungous wheelchair to the rehab center, so disabled BIL would be able to get out of bed every day. By the way, there is no service, or transport that will take an empty wheelchair…well….anywhere….you have to find your own way to get it there.
One day, I’m walking down the hall of the rehab center and the physical therapist is manually pushing the electric behemoth with my BIL in the chair.
“What’s up?” I ask her.
“Oh my God, I’m so glad you’re here. No one can figure out how to get this operational.”
Because it had been a month since my BIL was even in the chair, and memory issues are a part of his disease, he was of no help either. In 2 minutes, I had everyone operational and instructed for the forseeable future.
Then we went home.
I stayed with my BIL for about 6 hours that day. As happy as he was to be back in his apartment, he was feeling insecure and squeamish and not ready to be alone. I arrived home in time for an 8:00 PM conference call.
At 9:00 PM my phone rang.
“Hello, Cathy, this is the caregiver.”
“Hey, what’s up? Is he okay?”
“Oh, he’s fine, no problems. But we can’t plug in his wheelchair. It seems like a piece of the plug is missing that connects to the battery. So we can’t charge the chair.”
UGH. He needs that chair. He needs to be out of bed and as upright and mobile as possible to have a life where he goes to meals, talks to friends, plays SODUKU on his computer.
“Okay, I’ll come in the morning and look at it.” I must’ve been very tired. I’m still not a wheelchair repair person, what was I going to do?
Before I left the house, I called the wheelchair repair people, who told me the only thing they can do is order an entire new charger which would take 3 weeks. When I asked what he’s supposed to do in the meantime, wheelchair repair guy thought for a minute or two (really??? no one has ever asked you THAT before?) And told me he could look around and see if they had a loaner charger, but that would take a day or two.
As I set my hair on fire in protest (only in my mind) I went over to my BIL’s apt. examined the plug and set off for the rehab center. I checked his room, as they had just cleaned it, we called down to housekeeping, I went to the nurses’ station, therapy rooms, front desk and had the social worker call the ambulance transport to look for it. No dice.
I went to my book club and my French Class. Mai oui…..I do some things for my self!
Then I returned to his apartment, there was the charger plugged in. But as my engineer BIL told me, truthfully, it was smoke and mirrors. It wasn’t charging at all. I showed the plug to him and hoped he had some brilliant insight. Nope. So I said to him:
“Well, you know what Nana would say?” She had a fine adage for problems when something would just not fit into a hole.
“Yep,” he nodded, “put a little hair around it.” Yep, that’s what she always said.
Luckily BIL is a fiscal conservative and only used 3% of his power that day.
We then had the brilliant idea to call some local durable medical equipment providers and one dear soul sent me to Interstate Battery. As I was leaving with high hopes and the battery, my BIL said:
“I don’t know how to tell you this, but as an old man would say, I think you’re pissing up a rope!”
So with those axioms under my belt and a big huge 24 Volt battery in my arms like a newborn. I went to a big, ol’ manly grease monkey, full-of-testosterone battery warehouse.
And this is where the Good Samaritan works when he is not out on the road rescuing.
Keith worked for thirty or forty minutes to rig this battery charger so I could use it. The first thing he asked me is if it’s a male or female plug. I considered my Nana’s advice, but that didn’t lead me to any conclusion. I suppose I should have been able to deduct the answer, but I panicked and just looked as cute as I could. In that environment, I was a shoe-in.
By the way, there was never a missing part. It had been so abused over time by pulling it out by the cord that it basically pulled the charging plugs too far down into the casing.
Keith told me he has a few friends in wheelchairs and he sees this all the time, where they can’t get timely repairs and no one seems to care. He told me to just ‘Pay it Forward.’ I told him I try to do that, and he said, “well then, now it’s coming back to you!”
Sometimes…..”You just have to SMILE….and laughing never hurts, either.”
© Cathy Sikorski 2015
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Techno and Testing………..
As I sit in the waiting room for my husband to have his colonoscopy, I am reminded of all the times I’ve been to various hospitals and doctors’ offices for tests of one kind or another as a caregiver. Sometimes, I think we test like our patients are the next subjects in a high school science experiment.
When my mother-in-law was 86 years old, I took her to her cardiologist for a semi-annual check-up. By that time, she had a pacemaker and was required to have it tested in the office to make sure it was working properly. In the interim, they had sent her home with a machine that she was to use monthly to check the battery and operation of the pacemaker over the telephone. This was hilarious.
Marie had to take out this little box, put two wrist bands on herself, call a phone number, place the phone in an electronic phone cradle at just the right moment, while holding some gizmo over the pacemaker on her chest, and wait for the buzz to tell her all was well. It sounds simple. But the set-up, the conversation with the technician and the ultimate getting the phone in the cradle at just the right time was a comedy of errors. Phone check-ups had to be by appointment only. I tried to get there on the exact date every month to help her, but some dates were just not possible for me. So after training my mother-in-law, this darling 86 year-old woman who lived alone and had not the slightest relationship with technology, did the best she could. I prayed she could do it, or in the alternative prayed that the pacemaker just worked until the next month.
At this bi-annual visit with her cardiologist, the good news was, her pacemaker was working just fine. Dr. Smarty Pants, however, had no trouble telling us that every month they weren’t getting the best reading, and we would need to do better. You know what I wanted to retort. But instead, I said, “Okay.”
Marie took it personally and tried to explain how hard she worked to get it right, but by that time we were dismissed on that topic to discuss further things.
Dr. Smarty Pants was concerned that Marie’s chest X-ray showed a slight spot on her lungs. The X-ray had been taken as a standard procedure due to her heart condition and pacemaker. This spot, however seemed new and the doctor was concerned.
“It could be nothing, or it could be a sign of further pathology,” he said to us.
“Well,” I said, “exactly what would you like to do?”
“I think we should do some more tests,” he declared. “I would like to do a CAT scan, or perhaps even an MRI, and then based on those results, we may have to do a biopsy of the lung area to see what we are dealing with. And then, based on that information, well, actually, as soon as we have the results of the CAT Scan or MRI, I would probably send you to a lung specialist as this is not a cardiology issue in any event.”
“So let me get this straight. As her cardiologist, you want to send this 86 year-old woman for a CAT Scan, and MRI, a possible lung biopsy and then off to another specialist, as this isn’t really your bailiwick anyway? Do I understand that correctly?”
“Yes.”
Now my mother-in-law is just sitting there in her paper gown, probably freezing, as it is cold in there and I haven’t even taken my coat off, watching this banter .
“Let me ask you this doctor,” I said pretending I was just seeking information, but wanting to put my hands around his throat while he strangled out an answer if he were lucky enough to survive.
“Tell me a bit more about this spot on the X-ray. Is it big, is it new, what do you suspect it could be?”
“Well, it’s tiny, and we haven’t seen it before. Honestly. Sometimes it could just be a spot or speck of dust on the machine and not pathological at all. But we don’t know that for sure.”
“Okay,” I say incredulous but still pretending to be seeking only information and not the death penalty….for him…..”Let’s just say you find the worst case scenario after all those tests, the biopsies and whatever else you do….then what? My mother-in-law is 86 years old. She has a really nice quality of life. She has heart problems, diabetes, and high blood pressure. What exactly would you do or suggest under those circumstances?”
“Well, truthfully, I probably would just make her comfortable, she’s not really a candidate for surgery or even intensive therapies.”
“Um…hmm.. that’s what I was thinking, Doctor.” Of course, what I was really thinking was: “You’re an idiot.”
“Based on that, Doctor, I think she’s already pretty comfortable so we will pass on further testing and let nature take its course.”
My mother-in-law lived 11 more years, with nary a cough.
“You just have to Laugh…….”
©Cathy Sikorski 2015
Ugh….Comcast….or common sense?
“I’m pretty sure I have a brain injury.”
You wouldn’t think this would send me and my friend into gales of laughter because she does have a brain injury. And she is a walking miracle. So whenever anything goes awry, this is her go-to phrase. Five years ago, she fell down a flight of stairs to a concrete floor and her injuries were life-threatening. After the initial trauma with extensive treatment and still later, after she was further misdiagnosed and needed emergency brain surgery to place 40 platinum coils in her brain to stop bleeding, she recovered.
Although disabled, and under constant threat of possible seizure, she lives on her own. She has successfully navigated these treacherous waters and her band of supporters are actually the beneficiaries of her hard work, as she has reclaimed her independence as much as possible.
But every once in a while………..
Her cable and internet died for no discernible reason. She called Comcast, put up with their shenanigans for hours on the phone, and then emailed me the written confirmation of their repair plan. Not only were they going to charge her $50 to come out, but they were not going to come out for a week.
I told her this was unacceptable (okay I said bullshit). She called Comcast again the next day, wasted a few more hours of her precious time and was assured that someone would be at her apartment at no charge the next day.
“You’re not going to believe what I did,” she said to me.
“Oh, you didn’t forget Comcast was coming, or miss them or fall asleep, did you?” I asked.
“Nope, you’re just not gonna’ believe it…….”
This really nice repair guy shows up. He’s young and handsome and very charming.
“Uh ma’am,” Mr. Handsome Repair says, “you’re green light isn’t on. The TV is not on.”
“I noticed that when they were trying to send the signal to repair it from afar, but it didn’t respond to the signal, so I didn’t know what to do,” my friend said in a bit of confusion.
“Okay, no worries, let me see what I can do.”
He goes around the back of the 50 inch TV, he shuffles among the wires and all the components, and he too appears flummoxed. She knows this because he just keeps muttering, “hm……………..hm……………………hm.”
He stands up and looks around her teeny, tiny apartment. His eyes light up. He looks at my dear friend, with a bit of pity, no doubt, walks over to the door, as if to leave and reaches up to the door jamb.
“Are you going to get something out of your truck?” She was afraid he was just going to go without explanation.
“No, ma’am.” And with that, he flips the light switch next to her front door and everything churns and sputters to life.
“All your components are plugged into the plug that is operated by this switch. So you might never use it, but someone flipped the switch on you and cut off the power to everything. That was your problem.”
She likes to sheepishly say in these kinds of cases……”Sooowwweeee.”
I assured her, this is not a brain injury this is an old lady affliction. Our ego, our common sense, our thinking outside the box appears to degrade with our eyesight, gravity ridden faces, and loss of car keys. Not only did she navigate Comcast twice without losing her mind, but she got a chance to spend time with Mr. Handsome Repair Guy.
After a certain age that’s a win-win.
“You just have to Laugh…..”
“You really don’t have to be young to find a friend in a teddy bear.” -Rachel Newman
I have become sort of immune to authority figures in the world of medicine and insurance. My friends would tell you my immunity started long before caregiving. My older brother, Chip would say I made my self the authority figure right around 5th grade when I would tell my Mom what Chip wanted for lunch. My baby brother Bill would say, “Cathy doesn’t have any problems with authority, as long as she is the authority.”
Okay, fine.
I’m bossy and pushy when I need to be.
But sometimes I am surprised by the far-reaching influence of my bossiness.
I was grilling the nurse in the hospital about the details of my brother-in-law’s discharge. What day were they thinking? What kind of meds would he need when they sent him home? Did they know I had a 24 hour notice rule, so that I could set up his at-home caregivers? Would they call the insurance company to confirm the need for ambulance transport since my brother-in-law was non-ambulatory? Would the case manager call me so that I could give her the time of day that transport would work best for the caregivers as well as his meal time at his facility?
My brother-in-law was so used to this diatribe, that every once in a while he would chime in with a: “Yeah, when can I get out of here!” emphatic remark. He liked looking bossy, too.
His hospital roommate, a kind and gentle Teddy Bear of man, whose family had quietly visited with him just a few hours earlier and had now left, was patiently listening to all of this. We had exchanged greetings earlier. He was very soft spoken. Even his young grandchildren were very quiet and respectful. He didn’t have his television blaring, like my brother-in-law usually does. He didn’t pull his curtain shut or ask for privacy. He didn’t call his own nurse for any assistance during this time. But he was clearly awake, aware and watching all this broo-ha-ha. He seemed to be taking it in with great interest, but just stayed calm and quiet.
After I had hashed out all the details that I needed to make the exit from the hospital as smooth as possible for my brother-in-law, I noticed that his roommate called the nurse over to the side of his bed. She very graciously went over and asked if she could help. Before he could say another word, she cautioned him that she was not his nurse, but if she could help she would.
He looked at us, and then looked up at her with pleading eyes and said ever so softly: “I, too, was wondering when I could get out of here and go home.” Then he looked at me, and I swear there was a twinkle in his eye that was a dash of courage, but still a Teddy Bear, asking for his own reprieve. I’m pretty sure he winked back when I gave him the thumbs up!
“You just have to Laugh…………”
©2015 Cathy Sikorski
Best Notify My Next of Kin…This Wheel Shall Explode….Absolutley Fabulous
The frustration level of caregiving is equal to the dropping temperatures here on the East Coast, which is at a 100 year low. Pretty sure that’s true.
Finally after spending 6 months in rehab, my brother-in-law was finally home, healthy and enjoying his meals in the dining room with his best pals. Then the flu hit his facility. On Christmas. But five days in the hospital with the flu, double pneumonia and a urinary tract infection did not keep him down. Home on New Year’s Eve, he was ready to get back to his normal life.
When he, his neighbors and his caregivers all noticed that he was precariously listing to the right, they called me.
Now this wheelchair has been a problem for several months. A new set of footrests were installed and ever since then, the wheels get stripped. After the second time this happened, I told the repair people to really look at the problem. The footrests were major culprits and needed a good talking to.
Here we were again only 60 days after new wheels were put on the chair. My brother-in-law looked like he was practicing for a circus act, as he sped down the hallway with his hair blowing in the breeze at a 45 degree angle.
When his caregivers called me, on Sunday, I was firmly ensconced in a charming little Italian restaurant 150 miles away in NYC. Of course, it’s adorable that they think I can actually fix the wheelchair. I would have to have extra wheels, a special screwdriver, and actual mechanical knowledge. No wonder I have a God complex.
Monday, bright and early I call for repair assistance. I beg. I plead. I offer candy, money and my first born, whatever it takes to get this chair fixed ASAP, since he just got back to a semblance of a real life. What usually requires two weeks, will take two days. Okay, we can live with that.
Two days later, I arrive at my brother-in-law’s apartment for the 10:30 AM appointment. I’m psyched. Chair will be fixed. Man can get in chair and have meals with friends, all will be well in the universe.
10:30 comes and goes.
11:00 comes and goes.
“Hello, wheelchair repair guy, where are you?”
“He’s just a bit late,” they tell me.
11:30 his caregivers arrive to get him dressed to gently place him in his newly fixed chair. Except that it’s not.
12:00 comes and goes.
I have to call again. Why would they call me? I’ve only called them 10 times in the last 48 hours. It’s not like they have my phone number or know that I am waiting for them.
“Hello, wheelchair repair guy, where are you?”
“He got caught up at his last job, he will be there as his last appointment of the day. Sorry, i hope that’s okay.”
Sure. I only have to now order his meals to be delivered to his room, if it’s not too late. I need to reschedule all the caregivers because their duties will now change, since he is in bed and can’t get in his chair. I will have to go to the dining room and tell his dining buddies that they don’t have to set up his place, his tea, and his special condiments like they do every day because they are kind and amazing. But sure, no problem, you just show up when it works for you.
What I say is, “okay, just get it fixed, today.”
Miracle of miracles, I come back early in the evening to find BOTH wheels repaired, the foot rests changed and the chair ready to go. Too late to get my brother-in-law in his chair. But he says, “hallelujah” when I tell him he will be out and about starting with breakfast tomorrow.
On my way to a business appointment the next morning, I’m feeling quite smug as I know my brother-in-law is already at breakfast and I got the chair fixed in 2 days!
My phone rings. I answer with a happy lilt in my voice.
“Hello?”
“Hi Cathy? This is the caregivers. Larry doesn’t feel well. He refuses to get in his chair. He has a temp and should probably go to the ER.”
You just have to Laugh………….
©2015 CathySikorski
A Caregiver Confesses…………
Not every day in a caregiver’s life is worthy of a pat on the back. Last week the visiting nurse called me with her weekiy update:
“Hi Cathy, all is well with your brother-in-law,but I’m calling today as his advocate.”
Uh-oh. What does that mean? Immediately, my hackles go up. I don’t actually know what hackles are, if I have them or when they go up and down. But I do know that some red flag is waving behind my eyeballs, and I have become defensive before she even says her next sentence. And here’s why. I am his advocate. Not you. First, I am a professional advocate. Second, I am the one who goes to bat for him almost on a daily basis. And third, if you are telling me you are advocating for him to me….that must mean you are about to tell me what I’m doing wrong.
“Okay,” I say calmly, “what’s up?”
“Since you’ve put him back on bed rest, he is frustrated and really angry. He doesn’t want to be in bed most of the day. He needs to be in his wheelchair and out and about with his friends. He needs to go to the dining room for every meal and have that independence.”
And here’s where I’m not so happy with myself….but this is only the first part of my confession.
“Let me tell you something (not a good way to start an open-minded conversation). He just returned home from 10 months in and out of the hospital with 6 of those months straight in a nursing home.In just four days after being home, he began to have bed sores again and problems with open wounds. I feel pretty certain that he does not want to go back to either of those places and so since I know that bed rest was the only solution, I instituted that. Within 10 days of you seeing him, those wounds have significantly healed and he is almost able to return to his normal routine.”
“Well,” she replied, “I’m sure that’s what he needs.”
“I am not trying to make his life harder. Quite the contrary. But I will be sure and let him know that you have advocated for him.”
“Okay, thanks and Happy Thanksgiving!” she said as she got off the phone at breakneck speed.
The Thanksgiving remark sort of slapped me back to reality as well. I was feeling less grateful for her help and more needy of explaining my part in this Passion Play.
And then I misbehaved.
I went over to my brother-in-law’s apartment to discuss his advocate. I waited until the next day, so I could explain to him that I’m not a monster, I’m not insensitive to the fact that lying in bed most of the day is boring, not fun and makes for a long day. I only have his best interests at heart, and I don’t want him to end up back in any place but his home, where he is as happy as he can be.
When I arrived, he was watching TV in his chair.
“Hey,” I said, “your nurse tells me your mad at me.”
“Yeah,” he said, “I don’t want to be in bed so much. ”
And this is where all my sensitivity training, my caregiver’s heart and I’m pretty sure my 26 years as a Mom comes in to soothe and explain how all my hard work for him is truly in his own best interests, that I love him and want him to be healthy and safe and happy and that sometimes that road is a little bumpy.
“Get over it, ” I said.
I thought he would just have to laugh…..and guess what…he actually did………
©Cathy Sikorski