Tag Archives: MS

Or we’re gonna’ go round and round……..

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Sometimes a girl has just gotta’ dance. Whilst deep in the Rumba, the dance of love, according to our ballroom dance instructor, I actually turned off my cell phone. I take this ballroom dancing seriously, since I read it is the number one hobby that can stave off dementia. Plus, my husband can’t believe I have found an activity we can do together where children, siblings, parents, caregivees, nurses, insurance companies and doctors can’t get in touch with me.

After 90 minutes of “slow……..quick, quick” and wine and cookies (okay, there are other perks to ballroom dancing), my husband and I are happily re-connected, refreshed and ready to go home.

As we leave the dance floor and enter the parking lot, it’s snowing like a blizzard out there on November 13th. This should have been my first clue of disaster.

Fine. I’m refreshed, I can deal with the first frostbite of the year. Then I checked my phone.

Two calls from my brother-in-law. Two messages and a few other missed calls and texts from his caregivers. Uh oh.

The good news is my brother-in-law called. At least I know he can dial his new phone. He insisted I bought a completely useless phone that he couldn’t operate. So there’s that.

I cringed for the bad news as I listened to the messages:

Message 1:

“Cathy, this is ‘L’, nobody got me out of bed for dinner, and no one delivered my meal either.”

Message 2:

“Cathy, it’s an hour later. Don’t know if you got my first message. I didn’t get dinner. Wish someone would have warned me that  I wasn’t getting dinner tonight. I guess I’ll be ok.”

It’s now 90 minutes after the second message…the exact amount of time it takes to learn the dance of love with 6 variations. I call him back. No answer. Either he has passed out from hunger, someone came to his rescue, or he gave up and went to sleep.

I text the last caregiver who I know was with him to give him his night meds. No response. I make an executive decision to let it go until morning. Based on his overall weight and eating habits, I’m pretty certain missing one meal won’t end his time here on earth.

The next morning on my way to his facility, I called his caregivers. I wasn’t planning on taking this side trip to see him, but I wanted to reassure him that I received his phone messages and was taking care of business. They assured me that someone had set up his meal for dinner. I’m not so sure. My brother-in-law doesn’t have dementia. He just generally only thinks about things he cares about and leaves the rest to me.

When I get to his room, after breakfast, (I wanted him to be fed and in a good mood………I learned a thing or two from having toddlers), I asked him if he ever got dinner last night.

“You called me twice last night to say no one brought you dinner, remember? Did you have dinner or not?”

He looks at me like I have the head of Medusa, or am speaking in Italian.

“I don’t remember calling you or if I got dinner, but I just had breakfast, so what’s the big deal?

I just Rumba my way out of the room………….slow….quick, quick…..slow….quick, quick.

“You just have to Laugh…………….”

©Cathy Sikorski 2014

What’s at steak??????

Caregivers, Humor, Multiple Sclerosis, Uncategorized, , , , , , , , , ,

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

 

It’s not the size of the Ship……

Caregivers, Humor, Multiple Sclerosis, Uncategorized, , , , , ,

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….

Caregivers, Humor, Multiple Sclerosis, Uncategorized, , , ,

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

Caregivers, Humor, Medicare, Multiple Sclerosis, Uncategorized, , , , , , , ,

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….

Caregivers, Humor, Medicare, Multiple Sclerosis, Uncategorized, , , , , , ,

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

Caregivers, Humor, Medicare, Multiple Sclerosis, Uncategorized, , , , ,

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

 

 

 

 

Less Shark, More Beer……………

Caregivers, Humor, Multiple Sclerosis, Uncategorized, , , ,

“L” the newly diagnosed diabetic has my mom call me to ask:

“Do you have a list of foods that are good for him to eat?”

“Why, yes, yes I do. The list is in the white folder from the hospital.  Why? What is his concern?”

“He doesn’t know if he can eat a sweet potato?”

I’m guessing because it has the word ‘sweet’ in it.

“Yes, I say, “sweet potato is ok, but white potatoes, not so much.”

“Well, ” my mom says, “he’s drinking a beer now.”

A BEER?

“Yeah, a beer is wheat and sugar..that’s a no.”

“He says he doesn’t care, he’s gonna’ drink it anyway.”

So………………………the potato question………………….?????

“You just have to Laugh…..”

Cathy Sikorski

Angels and Sharks…….

Caregivers, Humor, Medicare, Multiple Sclerosis, Uncategorized, , , ,
Shark in my beer!
Shark!

Angels really are everywhere.  As are shark infested waters. You just have to be aware of both.  As I was trying to get the best possible care for “L” in the hospital this week I was ‘attacked’ and rewarded at the most unsuspecting times.

 

 

After three days of hemming and hawing about how to address his pressure sores, the surgeon did a procedure bed side and decided that he needed to go in surgically the next day. When I came to get a progress report, the caseworker informed me that “L” would have surgery at 1:00 P.M.(give or take a few hours) and then would be immediately sent home.

“No,” I said calmly, the first time.

The caseworker just looked at me with a questioning glance.

“No,” I said calmly the second time. “He’s not having surgery and then put in an ambulance on a gurney with a huge wound on his backside and then sent home where he lives alone and I have to put caregivers in place. Especially since you have no idea when  that is.”

“Well, I understand,” said the caseworker, “but the doctor said he can go home.”

“Well,” I said, “if you understand, then you can tell the doctor the he doesn’t understand, and that this patient, who is non-ambulatory and needs care cannot go home ten minutes after surgery.”

We went round and round a few more times, and it wasn’t a square dance.  Finally she left and returned with the ‘good news’ that he could stay over night after the surgery. What she didn’t know,( or maybe she did as I just was saying: “No, no, no, no, no, no….oh yeah, and no.”) was that I would probably have stood in the doorway with both arms held onto either side refusing to let them take him out.

Angels or Angelicas are everywhere.
Angels or Angelicas are everywhere.

Everything goes well, and we get him home. I entice my sister and her husband to come for a lasagna dinner. It is a sham. I want them, a nurse and a mechanic to figure out a way to invent a seat cushion that will take the pressure off  “L’s” bum. They are kind and helpful and come to L’s apartment the next night. My sister expertly moves and manipulates ‘L’ in his bed so he stays off the sores. It’s poetry in motion how she tells us what to do and how to do it. Meanwhile her husband is taking measurements and cogitating on an invention for the wheelchair seat.

Then his caregivers show up. They take the reins and say, “don’t worry, we will make sure he is turned, fed, his blood sugar is checked and he stays clean.” I am so blessed.

I come in the next day, there is “L” completely naked, having a nice lunch, and saying: “I decided it’s easier for everyone if I just stay naked.” And while on some level that’s true, I really hope the cleaning lady skips this week.

Angels and Sharks, Angels and Sharks.

“You just have to Laugh……”

Cathy Sikorski

 

 

 

What do a Pediatrician and Blanche DuBois have in common?

Caregivers, Humor, Medicare, Multiple Sclerosis, Uncategorized, , , , , , ,
Fun at the Pediatric Dentist!
Fun at the Pediatric Dentist!

I have been searching for 2 years for a dentist to treat my brother-in-law, “L” who has MS. The issue is that L is wheelchair bound and cannot get out of the chair at all without the assistance of at least two people or a Hoyer Lift.

The dentist, eye doctor and any other pyhysician or medical facility that we have to go to, must have a wide enough room for him to enter, leave, turn around and be treated in. Thanks in great part to the Americans With Disabilities Act, most medical facilities have come to the place where L can be accommodated. But the dentist is a challenge.

Most dental offices here in Smalltown, USA are converted homes and even if we could get into the lobby, we can’t get into the treatment room. And on top of all that, since L can ‘t move from his chair to the dental chair, many dental offices I have contacted would not see him.

To be fair, his own dentist offered to try and get the lift from the wheelchair van to come even with the outside deck of the dental office, and then maybe we could skootch him through the glass sliding doors and into treatment. And I considered it until we had snowstorm after blizzard after ice storm.

And then L broke a tooth.

Now I had to put this into high gear.

I called the MS Society, who put me in touch with a dentist who was far away. Kindly, that dentist agreed to see him, but had no openings for 3 weeks. I called my own dentist who had no access at his office, but I thought he would have a recommendation. The first office was unable to help me. The second dentist was a pediatric dentist, so I was pretty sure that was going to be a wash. Never assume.

Pediatric Dentist, Dr. Zale, agreed to see L. We entered the office and were immediately surrounded by picture books, Legos, toys for every age, and a beautiful array of kids from toddler to teen. I told L not to smile too much because the broken canine in his mouth might scare the little ones. But those kids played around the wheelchair like it was a dining room chair at home. If the toy they wanted was on the other side of L, they just looked him straight in the eye and walked around him to play.

Dr. Zale and his staff took my brother-in-law into a very large and airy treatment room, somehow got him x-rayed and fixed him right up. There was no time to do a standard cleaning so they made an appointment for him to return before I even got back to the desk to pay. He was now their actual patient!

Six weeks later, the Jeff Gordon of wheelchair drivers, my brother-in-law, hits the high speed button on his wheelchair, bonks his head on his computer and completely breaks off the new tooth. I called Dr. Zale, they got him right in and took yet another two hours to fix that smile right up. Because it had taken longer than they expected the front desk ladies said they would just send me the bill. This is the bill I received:

No Charge per Dr. Zale..
No Charge per Dr. Zale..

Sometimes you just have to be ever so grateful for the kindness of strangers,  and

You still just have to Laugh…….

Cathy Sikorski