Category Archives: Medicare

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

“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

 

Patience…the Patient has gone clear….

Have you ever had the experience as a caregiver (or even a co-worker) where you’ve been taking care of someone and they are clearly forgetting things and allowing you to have all the responsibility and power? Basically, they are done. They don’t want to engage in any way that is challenging or difficult. And okay, fine. You deal. And then this happens:

“You are going home tomorrow from the nursing home to your own apartment,” you say to your brother-in-law, with every so much enthusiasm because he has been waiting for this day for 5 months.

“I know, but I thought I was going home Tuesday.”

“Umm…you are….tomorrow is Tuesday.”

“Oh, yea.” Caregivee laughs at his own silliness. Then he says, “and it’s time to sign up for Medicare, right? It’s open enrollment. And we were going to look at all the options to make sure I had the best plan. Did you do that  yet?”

This is where I go through these thoughts:

I want to kill you.

Who are you and where is my brother-in-law?

When in the last 7 years have you even said the words, “open enrollment.”

I take a deep, cleansing breath, and say ,”sure, we can work on that when you get home.”

“Because your sister and her husband worked the same place I did and they are on the same retirement insurance. He had a heart transplant, so he’s no healthier than me, ” says the guy who refused to do his physical therapy just so he can hold a cup without spilling it.

Sometimes I want to run away from home.

Medicare 2015No worries. I will read the 500 page booklets from Medicare and your employer retiree plan and we will end up doing the same thing we have done for the last three years because the plans in your retirement only have one option with unlimited lifetime benefits. And you’ve probably used over a million dollars already. And your young, very young. Sick, but young. That’s what I think, but what I say is:

“Okay we will go over that, we have a few weeks yet.”

“Okay, just wanted to make sure you were on top of it. Now did I have lunch yet? Why is that picture on the wall crooked? I don’t think anyone changed the  clock to daylight savings time?”

You just have to Laugh…..”

©Cathy Sikorski 2014

 

It’s a Jungle out there…..

Caregivers are not permitted to take vacations. But good ones do so anyway. If you can get out of the country and be completely incommunicado that’s ideal (being incognito doesn’t hurt either).

My husband and I took a bucket list trip to Macchu Pichu in Peru. We nearly killed ourselves hiking mountains in high altitude and then melting with sweat in the Amazon jungle. No phone, no lights, no motor cars, not a single luxury…not really true, we stayed in some damn fine five star hotels for about five hours a night. But the only way to communicate with this caregiver was through email. In a country where you are not allowed to flush your toilet paper and must use bottled water to brush your teeth….WIFI is not high on their list. This caregiver was thrilled to be almost completely unplugged from the world for ten days.

I made sure the folks in my brother-in-law’s rehab knew that they must call my mother if any decisions needed to be made about his care. My mother gave them my sister’s phone number as well. They had enough phone  numbers to start a new yellow pages under “caregivers for Cathy’s brother-in-law.”

Baby Piranha searching for WIFI.
Baby Piranha searching for WIFI.

When I returned from conquering mountains and tarantulas, on a Saturday, there were six messages on my home phone and four on my cell phone from the rehab center. Insurance and Medicare had determined that my brother-in-law could be discharged from rehab to home, where he lives alone, even though the doctor insisted that he must remain on complete bed rest for 2 or 3 more weeks. The rehab center wanted me to know that his coverage was now terminated, three days before I returned from the jungles of Peru.

Even though they tried to call me TEN times…. with no response from me, they seemed to decide that I’m an irresponsible person. No one looked at the file to see if there was any indication of who else to call. No one took one teensy weensy step further and thought: “Gee, this is weird. That lady is in here several times a week bugging all of us for anything from therapy updates to a single sugar packet. I wonder why she is ignoring our phone calls?”

Nope.

I called on Saturday and was surprised to find that at the very least, they kept him in his room, assuming he would pay for it. Now they are  working very hard to see if they can get his insurance to reconsider.

So the good news is we checked a square off our bucket list. The better news is we didn’t die doing it, no malaria and no altitude sickness, no death by diarrhea, no tarantula bites. The best news is my brother-in-law isn’t home in a bed wondering if anybody knows where he is.

You don’t get a vacation and….

“You just have to Laugh…..”

©2014 Cathy Sikorski

 

 

What makes the Hottentot so hot? Courage….the Cowardly Lion.

So I have to prepare a story about courage for a story slam. This may or may not be it.

I think my Mom is one of the most courageous people I know.  She had 5 kids all under the age of 10, and was pregnant with her 6th when my Army helicopter Dad died in a crash. Along with my Nana, she raised six pretty terrific kids (I can say that, I’m the middle child).The problem arises when she mixes her courage with a bit of the crazy.

As you may know, she is a big help to me in my caregiving duties. She is a nurse and was

This pic never gets old!
This pic never gets old!

often  called upon to help me with nonagenarians. She is in charge of all the meds for my brother-in-law. So this lady has got it together.

She gives great advice, except to herself. A few years ago, my mom and my brother Chip, decided to take a trip to Canada. My Mom has had a cabin there since 1972. It’s very rustic. The cabin is nestled next to a little lake. Years ago, my Mom and stepfather, and any other rustic thinking person, would go there all summer long for fishing, wildlife, nature, no electricity, no running water.  The kind of place I would not set foot in.

For the past 5 years or so, my Mom goes only occasionally. She still manages to find people who actually want to go there, but the boat dock is rotted, the trail to the lake is overgrown with weeds, she no longer has a garden the size of the Louvre, and so it’s just a short trip for a few days with those escaping technology or their spouses.

This time Mom and Chip went to check out the new floor that my brothers and brother-in-law had installed. They drove 8 hours from home. They were there approximately 45 minutes, when my Mom tripped on the lip created by the new floor and promptly broke her arm. See, she knew she broke it because she’s a nurse. That and the crack that sounded the minute she hit the floor.

My mother insisted that my brother get back in the car and drive her home 8 hours with that throbbing arm and nasty seat belt, so that she could go to a hospital near home. Now as the one who was probably going to be her temporary caregiver, that was great for me. As someone who tests the limits of courage and common sense. this 83 year old grandmother should have had some sense knocked into her before she hit the floor.

Courage or Crazy…………you be the judge. In any case………..

By the way…that picture IS  the  actual cabin. I made my Mom email it to me….THAT is the next story!

“You just have to Laugh………..”

Cathy Sikorski ©2014

 

 

Does your right hand really know what your left hand is doing?

A million and one times, caregivers are told “take care of yourself,” “take time for  yourself,” “you’re going to have to put yourself first.” All of this great advice theoretically has benefit, but putting it into practice can backfire.

My Mom is a 45 year old in an 85 year old body. She is my right hand with much of my caregiving responsibilities. So when I had to include her in my caregiving queue, it was not only distressing but a bit of a last straw.

The first time it happened she broke her hip….no….she corrects me every time…she did NOT break her hip like some old lady. She fell while power walking and broke her femur at the top near the hip. While in rehab, Mom worked like a trained monkey to get out of there. But I still had to bring her laundry to rehab, go and check on her, help take care of her bills and her home, etc. As caregiving goes, it was one of the easier gigs.

Two years later, she needed a caregiver when she went to her cabin in Canada and within hours of arrival, she fell and broke her arm. She forced my brother to drive her  eight straight hours back to Pennsylvania for medical care because she didn’t want to get stuck in a Canadian hospital .

This time I was already inundated with caregiving for my brother-in-law, my mother-in-law and my friend who had recently experienced a traumatic brain injury.

My mother basically has 8 children. I put my foot down. I called a family  meeting and told my sisters (yeah the smart brothers lived far away) that I was not going to be the go-to person this time. I live the closest to my mother, but the rest of my sisters live within 15 or 20 minutes.  My oldest sister, Tina agreed to be the daily coordinator. All my other sisters divvied up the jobs of grocery shopping, cleaning, laundry, bathing assistance, etc.  Doctor appointments and pharmacy runs would be done as needed. Any mission that was not set in stone would require a call to Tina, who would either do it herself or ask someone to help.

My go-to Girl!
My go-to Girl!

 

My mother attended this caregiver summit. She understood everyone’s mission and consulted the chart of who was coming when. Since Mom had been assisting me with all the other people on my caregiving list, she was well aware of the time and energy commitment a caregiver puts out.

The last thing I said to her was, ‘if you need anything, you call Tina first. She will make sure it gets done pronto.”

The first week my Mom was home, I was so busy I barely noticed a week went by.  Day 8 my mother calls me:

“Hey, Mom, how are you? Is everything going ok?”

“Yes, everything is pretty good. I’m feeling good and I can do more than I expected. The doctor said I can’t drive for 6 weeks, but we will see about that.”

“Ok, we’ll see, but don’t do anything crazy.”

“Well, that’s why I’m calling you. I wanted to know if you would take me to the grocery store.”

Now normally, I would just say, “sure”, or ask what she needed so I could pick it up for her. But some little devil sat on my shoulder and shouted, “TINA.”

“Aren’t you supposed to call Tina?”

“Well, I didn’t want to call her because she lives so far away and you’re just around the corner.”

Through gritted teeth,  I said, “I’ll call you right back.”

And then I called Tina.

Don’t ever think that anyone, even your right arm, really understands caregiving. Which is why……

“You just have to Laugh….”

©2014 Cathy Sikorski

 

 

 

Caregiving blows hot and cold….

I’m entrenched in the rehab cycle right now. Many days to the rehab center every week are required to watch the progress of my brother-in-law, keep an eye on his care, and to make sure he’s behaving like a human being to the overworked, understaffed people running around trying to please everyone, and pretty much pleasing no one.

The very first day he entered rehab,in the dead of summer, he wasn’t there two hours and protesting royally about the heat. Now, MS sufferers really do need to be temperate. So his complaints were absolutely legitimate. To my amazement, the staff relocated him immediately to a bed where he would be next to the window and air-conditioner.

His first two roommates complained bitterly because they were freezing. My loved one had the thermostat at 60 degrees because he was alternately too hot and too cold. Ya’ think?

But the third roommate hopped on board with my brother-in-law, lickety split. They conferred daily, maybe even hourly, about how freakin’ hot it was in their room. The good news was that one guy wasn’t bundled in a sweat suit and blankets, while the other was half naked in a hospital gown embarrassing anyone who walked down the hall and peeked in mistakenly.

Flat Stanley in PA
What they want it to feel like

Every time I entered their room, the two gentlemen of Verona were commiserating about the unseemly state of the weather in their room. No matter how many times I reset the air conditioner, it wasn’t cold enough……for them. Meanwhile, anyone on the staff who was in  menopause was hanging out in their room to cool off.

By the third day of this, I was at my wit’s end trying to make these two guys happy. The only saving grace was they were enjoying the mutual complaint department. Sort of an “us against them”, giving rehab a fun kind of flavor.

Yesterday morning I entered their room and noticed that the staff had pulled the curtains closed during the night. The curtains were romantically billowing in the window forcing  the air conditioner to blow all the cold air straight up to the ceiling. I went to the window to draw open the curtains and let the cold air directly into the room. That was when I noticed the window panes had quite a bit of condensation. Looking closer, I saw the window was actually open. In fact, both windows were open. Open.

All night long, the July heat was drifting in through the open windows, allowing all the humidity to circle around and settle on their hot sweltering bodies. Ugh. Really? Someone came up with this idea as a way to cool these guys off?  I closed the windows. I asked the gentlemen to tell the staff to keep the windows closed.

The roommate quickly informed me that he thought the open windows constituted a good idea. It would allow circulation and air into the room at night. This logic reminded me of my mother-in-law.  Every time she left the house in tropical heat, she turned off the air conditioner. We told her she might as well turn off the refrigerator every time she left the house too, as that logic goes.

I return the next morning and the condensation is just waiting for me to put “Cathy was here” on the window.

Okay, so … I give up…..

“You just have to Laugh….”

Cathy Sikorski

 

 

 

 

 

What do Depends and Dr. Pepper have in common?

I just read an article that says there’s  a ‘new trend’ that men are becoming caregivers. Hmmmm. I picture this:

Me: Honey, I need you to go get Depends.

My man: Okay. Where? What aisle? What size?

Me: Go to WalMart. They are in the aisle where there are feminine hygiene products. The package is green. Get Men’s Large.

My man: Okay. Which Walmart? Where is that aisle? How many packages do you want?

Me: Go to the Walmart in our town. Go behind the aspirin aisle. Get two packages.

My man: Okay. When do you need them? How much do they cost?

Me: Never mind.

See.. here’s the thing, My  man has done absolutely nothing wrong. He wants all the right information. He wants to do it correctly and I want him to read my mind, clearly and accurately and I don’t want to explain anything.

I’m sure many a caregiver would gladly give up her caregiving duties to a member of the opposite sex…but it’s like diaper changing ………you’re just not doing it right……………..and that’s where you get in trouble.

Don’t scare your male helper away. Trust him. You did marry him, or raise him, or punched him when he was your big brother tickling you. It’s like Dr. Pepper:  I can do it, you can do it, he can do it, we can do it, wouldn’t you like to be a caregiver too?

P.S. This is not to say the those brave men who are caregivers already, don’t know what they’re doing….they are apparently just more ‘trendy’ than women caregivers.

You just have to Laugh………..

Cathy Sikorski

 

 

 

 

Death by Desk

Just before I was to leave for four days, return for one, and then leave again for four days, one of my hired caregivers calls:

“Hi Cathy,” she says with trepidation.

“Oh no, what now?” I say.

“No, it’s fine, really. It’s just that your brother-in-law needs a new desk for his computer.”

Okay, I’m thinking, that can probably wait for a week or so. It is an old computer table, sort of the pre-IKEA era, where you bought these cheap wood-like substances and put them together and hoped they lasted a few years. Way before laptops when your computer was a piece of furniture that needed a piece of furniture.

“Okay,” I tell the caregiver, “no problem, I’ll come do some measurements. When I get back I’ll get a table over there ASAP.”

There is a bit of silence on the other end of the line, for just a shade too long.

“Hello?” I say.

“Oh, I’m sure that’s fine,” she says, ” I’m just worried about death by desk.”

WHAT?

“Well, you probably have to see it for yourself, but he was so happy to be back at his computer after recuperating in bed for two months, that I think he just got a bit carried away when he needed to move his chair and go to lunch.”

“Ummmm, Okay. Well, I can go over there today and check it out and then we will decide from there. How’s that?”

“I told him I had to ask you first if he could have a new desk.”

“It’s fine. Of course, he can have a new desk. Let me just take a look.”

As it turns out, I have an old pre-IKEA desk I needed to get rid of, so I measured that first and went to my brother-in-law’s apartment with tape measure and confidence that death by desk was a bit of an exaggeration’

When I get there, he’s sitting at his desk on the computer and seems fine. “So what have you been up to Speedy Gonzales?” I ask him.

Sometimes I think he goes too fast and furious in his motorized glee  because his dexterity and hand control are more difficult due to the MS. But truly, sometimes I think he kind of really enjoys speeding around in that wheelchair wreaking just a tiny bit of havoc. In the old days, I’ve seen him drive a car and a lawn tractor and a bit o’ the race car driver was always a part of this guy.

I glance around at the side of the desk obstructed by his wheelchair and there are the pieces of the three drawers strewn all over the floor. I begin to take measurements and I see the other supporting side is knocked out from the grooves at the top of the desk that would keep it together. I’m wondering if he is actually holding up this desk on his lap.

“Yeah, you can’t sit here until I get you a new desk. This is dangerous! How about if I just get you a very sturdy table? You don’t use these drawers for anything, and that way you would have lots of room underneath for your chair, and you wouldn’t be knocking the supports or drawers with your chair when you wheel around at the speed of sound?”

“No,” he says, “I would like a desk just like this one.”

Okay, first of all, they don’t make these dinosaurs anymore. Second, I’m not buying and putting together a piece of crap so he can play demolition derby when no one is looking. And third, I actually do care about his safety and do not want death-by-desk to become our new fun game like in The Deer Hunter.

I’m on my way to get a good sturdy table, I’ll tell him I’m looking at vintage shops for a desk just like the one he has.

You just have to Laugh…………

Cathy Sikorski

Bahamas or Disability? I’ll take both….

If I could invent an insurance company manual that would be 101 things NOT to do at an insurance company, I think I might have all their training contracts.

Out of the blue, my brother-in-law receives this letter from John Hancock (see A discussion with John Hancock) stating that he has a bit of a long term disability benefit coming to him. He would have had a huge benefit, but back before he began to ask for help and my Mom and I realized he was going down the tubes fast, he would just let his mail pile up. This resulted in a Superfund clean up of his papers and mail when he was cut off from all disability payments. That’s when I ultimately found a myriad of uncashed checks, uncompleted forms for benefits, and lots of other important matters literally brushed under the table.

I plowed through everything and re-instated his disability benefits, paid all his bills, eventually got 7 years of back taxes completed and found something like $9,000 in unclaimed property from the state.

But I truly never saw any documents from John Hancock. So when this letter came saying that he lost his benefits for failure to pay his premiums seven years ago, I just had to take that one on the chin. It was “B.C.”–before Cathy.

Yet still there was a tiny stipend that was guaranteed by the company. All he had to do was apply.

I was finally allowed to apply once he came home from the hospital. I looked over the application and put it on my “to do” pile for the end of the week.

The next day I received another missive from John Hancock:

“We received your request to reinstate long term care insurance. Please fill out the following forms and we will process your request in a timely manner.”

The forms were 9 pages long, asking for medical information, employment information and if you had ever been disabled.

I was pretty certain that my brother-in-law who has had Multiple Sclerosis for over 15 years, has been wheelchair bound for almost 3 years, and has caregivers 4 times a day to bathe, dress and give him his meds, would not qualify for reinstatement of long term care INSURANCE.

Oh, if you only knew how tempted I was to fill out those forms and have someone spin their wheels on this absurd ‘request’.

But I did the right thing and called the 800 number on the letter:

“CONGRATULATIONS! YOU HAVE WON A CRUISE TO THE BAHAMAS! AND FOR CALLING TODAY, YOU WILL ALSO WIN THREE NIGHTS IN A RESORT OF YOUR CHOICE!”

I obviously  misdialed, so I checked the number and dialed again very carefully:

“CONGRATULATIONS! YOU HAVE WON A CRUISE TO THE BAHAMAS! AND FOR CALLING TODAY, YOU WILL ALSO WIN THREE NIGHTS IN A RESORT OF YOUR CHOICE!”

So apparently with John Hancock, you win a prize for being disabled.

I scanned the nine page document to see if there was a different phone number and there it was. The real John Hancock began with 888 not 800 as in their cover letter. I pondered how many long term disabled people were on their way to the Bahamas just knowing their disability checks would be there when they got back.

You just have to Laugh…..

Cathy Sikorski