Category Archives: Multiple Sclerosis

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’s at steak??????

In the last four months, my brother-in-law has lost somewhere between 25 and 30 pounds. That may seem like a lot, especially for those of us who have been fighting those last damn 10 pounds for years, but it has been a blessing.

He now has lost so much of his Buddha belly that he can actually turn himself a bit from side to side. This is a spectacular advancement in the world of MS and bed sores because he may now be able to spend more time in his electric  wheelchair and less time confined to bed to protect his skin from breaking down.

He, on the other hand, sees that he has been subject to lousy food and a Spartan diabetic diet.  Now, it is kind of hard to point out the beauty of lousy food and a Spartan diet. So after much praise for his ability to scooch around (yes, I do believe that is a medical term), I researched the possibility of getting some fun back onto his food tray.

He is still in rehab for a few weeks to get stronger from wound repair surgery, so I must get permission to adjust his diet. And I do. Everyone agrees his blood sugar is exemplary and he can have sugar instead of sugar substitute. His blood pressure is also stellar, so he can have salt again as well. Hip, hip hooray.

I take this as a sign that I can ‘bring’ him a special meal of his own choosing at least once a week. It’s actually getting to the point where I’m concerned that he might loose too much weight and then we have another problem. I know, the “oh you’ll get too skinny” story is usually baloney, but he has taken refusing bad food to new heights….and I don’t blame him. In fact, he would welcome baloney, but they don’t serve that…too salty.

So, as we live in the Philly area, I brought him his favorite naughty meal. It was a cheesesteak hoagie with hot peppers. That means there were condiments such as fried onions, lettuce, tomato, and mayonnaise all slathered on that sandwich. He ate every single bite, picked the stray onions, peppers and tomatoes off the hoagie paper, and wiped his mustache with glee.

When the aide came in for his institutional food tray and it looked like he hadn’t touched a bite, I debated whether to confess. Ah…what the hell……….

“I brought him a cheesesteak.”

“Well, good for him,” said the aide. “I don’t think one person ate today’s dinner. It was that bad.”

“So our secret is safe with you?”

“What secret?”

Sometimes you find partners in crime in the best and most unexpected places.

“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

 

 

Pizza, Pizza……………

Arising at 4 A.M. to get to my brother-in-law’s apartment before the ambulance transport so that I could quickly give him his medications before surgery, as archly instructed by the hospital staff, may have fuzzed up my mind. I’m pretty certain this was the conversation I overheard while watching and waiting for three hours before they took him into surgery:

Nurse on phone: “Yes, those were the instructions. Yes, no food or drink after 8:00 P.M.  last night.  Well, I will have to call the doctor and see if they still want  you to come in.”

Nurse on phone to Doctor:  “Your surgery for 8 AM just called. She wanted to know if she should still come in if she had pizza for breakfast.”

Nurse back on phone to patient: “The doctor says he wants you to still come in. You won’t be his first surgery, but he wants you to come in and see if he can fit you in. What? What’s that? Okay. Well, I will inform the doctor of that, but you still need to come in.”

Take with Pills in AM
Take with Pills in AM

Nurse to any other nurse who will listen: “So she just told me that she also took some opiates and some alcohol this morning too. I don’t know if that was while she was waiting for me to get back to her, or if  she forgot to tell me the first time.”

A different nurse to my brother-in-law, who has a rash around his lips from no liquid for  the last 15 hours, is starving, and has a second nurse stabbing him all over the place trying to get the IV line in so they can administer drugs to make him happy: “Your surgery has just been moved up, lucky for you the first patient had pizza.”

“Oh yeah,” says my brother-in-law, “I was feeling all kinds of lucky today.”

To their credit, not one nurse ever violated HIPPA by revealing the name of the pizza-eating, opiate-taking, breakfast-of-champions alcohol-drinking patient who cleared the way for everyone to move up the line.

“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

 

 

 

 

 

It’s not the size of the Ship……

A ‘side effect’ of Multiple Sclerosis can be a myriad of urinary tract infections. If left unfound for even a day or two, these infections can turn ugly very quickly. In the old and infirm any nurse (do not translate doctor, only nurse) can tell you that a UTI can make the patient seem crazy, terroristic, and downright demented. Once the infection is under control, your loved one returns as if they were on an amnesiac’s vacation.

Caregivers who experience this more than once are always prepared and at the first hint of trouble, we get a urine sample, a doctor’s appointment, an antibiotic, or whatever it takes to stave off the impending doom.

And………………you make sure, as a caregiver, that no one steps on your toes, whilst trying to prevent a UTI.

After spending three consecutive Friday nights in the ER due to UTI infection, even my brother-in-law doesn’t allow any shenanigans when it comes to prevention. The one thing that can cause a UTI faster than you can say ‘UTI’ is a Foley catheter. This is an internal catheter, not to be confused with a Texas catheter which is the big ol’ nice name for a condom catheter.  Oh, those Texans, anything big and manly belongs to them.

One fine Wednesday night, my brother-in-law spikes a blood sugar that Willy Wonka would be proud of and must high tail it back to the hospital. This spike, sure enough, signifies an infection. His white count is higher than Mount Everest and his behavior is actually still normal. Yay….we caught it in time.

Hooked up to IV antibiotics, treated for a few other annoying maladies, and complaining about hospital food tells me that recovery is just around the corner, with one tiny (or he would have you believe extra-large) exception. They don’t have his size catheter in the hospital. Really. They don’t have his size catheter in the hospital. Because every single man in the entire tri-county area is one size fits all. And girls, you thought size mattered.

I make a hasty trip to my brother-in-law’s apartment to snatch from his personal Texas catheter supply. As we entered his hospital room, my husband said to my brother-in-law:

“No worries, man, we have brought the ‘hombre grande’ catheters you ordered.”

And even though I can believe almost anything any more, three days later, I had a suspicion and grabbed a fresh supply of catheters to take to him. I eavesdrop through his hospital door as they are changing his sheets.

“You aren’t using my catheters,” said my brother-in-law, “these don’t fit.”

“Yes we are,” said the aide,” I think the nurse is getting a Foley catheter, so we don’t have to change the sheets so much.”

“No, no, no.” I heard him say. “I have UTI’s and a Foley is not for me.”

I burst through the door, like Cathwoman :

“I bring the correct catheters!” Sort of Shakesperean and Marvel comics at the same time. “There will be no Foleys, these are the ones that fit.”

As she leaves the room, with a weird expression on her face, I checked the supply of his private catheters in his room. Nope, they have replaced them all with the wrong size.

You have to be on guard….and…………..

“You just have to Laugh……………..”

Cathy Sikorski

 

The wheels on the bus go round and round….

Wheelchairs break.  ( See:  When Wine and Wheelchairs do Mix)  To fix them, you call a wheelchair repair guy. The first time I did this, it was because the joy stick was not working properly.

“Hi, this is the repairman. I’m at the apartment.”

“Yes,” I said, ” I’m so glad you’re there.”

“Yeah, well, I’m not allowed to work in the chair if the guy is in it.”

“But it’s only the joystick,” I said. “He can’t do anything if his chair doesn’t work, and unless you are going to lift him into his bed, you can’t fix it.”

“I’ll have to come back when he ‘s not in the chair.”

“Okay, when will that be? Can you tell me and I will make sure he is in his bed at that time.”

“No,” he said, “you have to call and make an appointment.”

Round One: Wheelchair repair guy.

The next time it was broken, I made sure that my brother-in-law wasn’t in the chair when they were coming.

“Okay,” the new wheelchair repair guy said, “we can fix it, but we have to take it with us.”

“I sincerely hope you brought another chair with you,” I said, “because you can’t strand him in bed until you get the parts you need. ”

“Ummm, yeah ok, we got a chair in the van.”

I rush over to his apartment, there sits a 1957 circa barely electric wheelchair for a person of very small stature. He looks like he’s practicing to be a contortionist.

Round Two: Wheelchair repair guy.

Last week the wheels became so stripped from bumping into the footrest that I called them to replace the wheels.

I made sure my brother-in-law was not in the chair. He was safely tucked in his bed watching TV. I made sure they knew exactly what was wrong with the chair so they could bring the requisite parts. I made sure they had my cell number to call in case of any problems. And I emphasized that he needs this chair. Period.

Okay, I admit, at the time of the wheelchair repair appointment, I was at my book club discussing The Burgess Boys and how messed up the world is. I see a call come through on my cell, but it didn’t ring and it’s the wheelchair repair guy.

“Hello, is everything ok?”

“No, ma’am. I have been knocking and knocking on the door but no one answers.”

It was so very hard for me to remain calm.

“Well, sir. I can understand that. You see, it’s your company policy not to allow the customer to be in the wheelchair when you are there. So in order for that to happen, he is confined to his bed and cannot get up and answer the door. A Catch-22 wouldn’t you say?”

No answer.

“Why don’t you just knock, and then go in? Okay?” I tell him.

“Well, I guess this one time. We’re not supposed to go in, if no one answers the door.”

This is a wheelchair repair guy.

Round three: Wheelchair repair guy.

Yup, I just can’t win.

“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

 

 

Go to Girl and Go Go Gadget

Invariably, on the day you need to be in your car for 8 to 10 hours, that is the day, all hell will break loose.

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

My go-to girl is my amazing 85 year-old mom. Weird, for a caregiver, I know. But she is a former nurse and raised six kids, so she knows her stuff. She pours all the meds for my brother-in-law, she helps me out in every pinch and she loves going to the ER with me. So when she calls, I answer…immediately.

“Hello?”

“Cathy?”

“Yes, Mom,” I say on my handsfree car phone as I’m driving 65 miles an hour down the turnpike on my mission to hit as many major cities in the metropolitan area for various necessities on Easter weekend.

“Um, I’m at L’s apartment, and his wheelchair stopped dead. Can I release it and push it down the hallway to the dining room so he can go to dinner?”

“Wait, no, you can’t push it. You are 85 for crying out loud, that wheelchair weighs a thousand pounds without the big guy in it.” (See When Wine and Wheelchairs don’t mix….)

“Look, Mom, since he had the wheelchair fixed, there’s a button on the back that sometimes disengages his controls. Can you see the button on the back?”

“No, I can’t get behind him, he kind of stopped weirdly in the middle of his room, and I can’t get behind him.”

I can’t really figure that one out, but okay, I’ll work with what I’ve got here.

“Okay, can you stand on his right side and look behind his head area. That’s where the button is. See if it’s red or green.”

“Oh, ok, yes ok it’s green, wait, now it’s red.”

“It sounds like it’s cycling through. Just turn it off and then back on and then see if he can use his own controller. And stand far away, he’s been known to take off like a bat out of hell when we are trying to figure this out.”

“Oh…..okay.”

She fiddles with it a few times and it doesn’t seem to work. I’m still stuck between 5 eighteen wheelers on the turnpike and going nowhere near L’s apartment.

“Okay, Mom, I’m gonna’ call for reinforcements to come help.”

“What? I can’t hear you, you’re cutting out.”

“I can hear you perfectly,” I say.

“Well, I can’t hear you,” she says as her pitch rises in frustration. But of course she could or how would she know I said that?

“HANG UP, I WILL CALL YOU BACK!” Because somehow I think yelling is the answer.

My reinforcements are hard to find, so I call her back to say I’m working on it.

“Hello, Cathy?

“Yeah, Mom, I’m trying to get you help.”

“Oh, that’s ok, I was waiting for your call to tell you that as soon as you hung up it started working. He started to drive toward me, and that seemed ok, so he went to dinner.”

Ummmm…you couldn’t call me?

“Ok, well that’s good, thanks for the update.”

“Oh and Cathy?”

“Yeah?”

There’s a big hole in the wall where his headrest got imbedded into it when he went too fast in reverse, so we’re gonna have to get that fixed.”

You just have to Laugh……

Cathy Sikorski