Category Archives: Multiple Sclerosis

Come Join Me In My Kind of Town…..

My husband said this WAS bold….because of the ‘after gym’ glow. I think he meant, don’t quit your day makeup.

Gimme some sugar…………

I have found the Fountain of Youth, or so the news tells me.

For the last three or so years, I was trying desperately to get a medication removed from  my brother-in-law’s med list. The medication was called Metformin.

Larry was put on the medication to keep his blood sugar under control. One time…ONE TIME…when he was in the hospital or was having a particularly difficult medical time, he had a blood sugar test that was way out of line.

His doctor decided that he would put him on Metformin and keep an eye on his blood sugar just to make sure it wasn’t an aberration.

It was an aberration.

Every time he was admitted to the hospital in the last  years of his life, which was at least a dozen times and because he was on Metformin,  a drug used for diabetics to keep blood sugar under control, he had to eat a diabetic diet.

Larry hated a diabetic diet. Diabetics hate a diabetic diet. But Larry wasn’t a diabetic and about the only thing he enjoyed besides smoking and honey or sugar in his tea, was eating. None of which were permitted on a diabetic regimen.

He also had to have his blood sugar tested. This they did by pricking his finger before every meal. He despised that too. He couldn’t do it himself because MS robbed him of dexterity. Poking and prodding had become a daily occurrence in so many ways. Adding one more prick to the pile just…well pissed him off.

With each hospital admission, I would request that they review the medication list and his daily blood sugar and try to get him off the Metformin. In the meantime, he had to stay on that god awful diet and be prick insulted.

I won’t lie. I’d bring contraband into the hospital. I’d bring sugar for his tea. I’d bring hoagies and Peppermint Patties. Yeah, I did it. Sue me. If I could find one less thing to make his life miserable, I would do it. Because, by the way, he was NOT diabetic. Oh that.

I lobbied for that damn Metformin to go away with doctors in hospitals, doctors in nursing homes, doctors in rehab centers, and doctors’ offices. I even got some doctors to agree.

But here’s the rub.

Once a drug is on your list of meds at a hospital and you go back to the same hospital again and again, they never change that drug list. I’m pretty sure it takes an Act of Congress to make that change. Pretty sure Congress hasn’t agreed on anything since the 1800’s.

I went so far as to  change hospitals and was successful for a few days, until they decided he needed a heart healthy diet. It stopped the pricks (in so many ways) but he still couldn’t have sugar in his tea.

She could be 100 years old!
She could be 100 years old!

Yesterday, on a long drive to the airport during rush hour, I heard Robin on the Howard Stern show (yes, you now know one of my dirty little secrets….I love Howard) report that a new drug may help us to live to 120 years old!! Howard loved that idea, if you are lucky to be healthy and enjoy another 50 or 60 years.

This miracle drug is…………..you guessed it…………….Metformin. If you can navigate your healthcare or you want to live in a world of pricks.

“You Just have to Laugh…..”

© 2015 Cathy Sikorski

 

 

No Regrets…..

Hope you enjoy my Grand Slam Story Slam for 2015! Have a wonderful Thanksgiving, my beloved readers. I am so thankful for all your reading, comments and support. Hope this gives you a chuckle. I have never had one regret putting myself out there for all of you!

 

 

Out of the mouths of babes………..

When my sister died from breast cancer in 1995 she was just 41 years old.  My daughters were 6 years old and 3 years old. At their age, they knew it was a sad affair, but they were resilient enough that they adapted to the sorrow around them with the beauty that young children have. They made the grown-ups smile and realize that happiness could and would return one day, even if in a different way.

Trips to the cemetery weren’t really unusual for us. My Dad died when I was a little girl, my Pop-Pop was buried there and quite frankly the cemetery was bucolic, filled with flowers and beautiful. I also grew up across the street from two different cemeteries. We used to play there all the time. So I took my girls to our church cemetery when they were young, sometimes with my Mom or my Nana. We would plant flowers, the kids would get water from the old fashioned pump, and run between the headstones plucking billowy headed dandelions and blowing them into the air, making wishes.

So cemeteries were not a sad place for my girls. Four months after she died, it was my sister’s 42nd birthday. I told the girls I wanted to take something to Aunt Cindy’s grave. They wanted to go to the Dollar Store and get balloons, like we did for their school parties. I thought that might be a nice idea. So off we went.

There were dozens of balloons decorating the walls and racks of the dollar store. I was surprised that the girls went right to the balloons to make their choices. They were usually distracted by the thousand different trinkets, candies, and party supplies that assaulted you as you walked in the door.

But they were on a serious mission.

Rachel, the big sister, picked first.

“I like this one, Mommy,” she chirped.

I immediately teared up and tried to stay happy and positive. Rachel could read by this time and the balloon said, “I miss you….”

“Of course, we will take that one, Rachey.”

Margot was still diligently looking through all the birthday greetings, the balloons with numbers on them and the ones in black were not to her liking. And then she found it, the perfect balloon to honor her Aunt Cindy,

“I want this one, Mommy!”

“Really, Margot?” I said a bit slowly, since my three year-old couldn’t read just yet.  “Why do you like that one?”

“It’s pretty, Mommy. It has pretty flowers on it and Aunt Cindy would like that.”

“Yes, sweetie, she truly would.”

Get Well 1Aunt Cindy would like the sentiment a thousand times more than the flowers… So I bought an identical one for Uncle Larry this week, as they are buried together, having a chuckle I hope.

“You Just have to Laugh………..”

©2015 Cathy Sikorski

You Make Me Feel….like an idiot….

Last week I had to spend 8 hours in the hospital waiting for my brother-in-law to come out of emergency surgery. All went well, in fact, so well, that they sent him straight home. Because he had been without food or drink for 24 hours, I decided to  go get him dinner and bring it to the rehab center. I didn’t trust that at 7:00 P.M. they would provide a nutritious meal, or any meal for that matter, because, you know, “the kitchen is closed.”

When I arrived at the rehab center with his hoagie, chips and root beer (okay, not so nutritious, but he was hungry and I was tired), there was a tray being delivered to his room. It contained one pathetic grilled cheese sandwich. That’s it, not even chips or a pickle, after no food for 24 hours. There wasn’t even a picture of Donald Trump or Jesus burned into the grilled cheese, and yet we were to believe that it was a miracle he had a sandwich from the kitchen at this hour!

The next day, I was exhausted. i just wanted to stay at home and work on my computer, sit on my deck, read a book and be left alone. As I was enjoying my solitude, I decided to play some music while I cleaned up the house.

I could not get the BOSE to turn on. The only way the BOSE radio and CD player works is with a remote control. The old BOSE, which died and they so thoughtfully replaced for a mere $250, had buttons on the unit and a remote. But someone in design thought, “Hey what do we need those buttons for? We have a remote!”

I’ll tell you what they need those buttons for.

So this remote which is the size and thickness of a credit card, does not work. No matter how many times or how hard I press those buttons nothing is happening. In my infinite wisdom, I decide : “Oh I’ll just put in a CD. I don’t need to listen to the radio.”

So in goes, Carole King’s amazing album from 1971: Tapestry.

I cant’ turn the volume up to drown out my warbling, because, you know, the buttons don’t work. So I sing softly, so I can hear Carole.

Three hours later I want to kill Carole. The earth has moved and everyone is so far away, but I can’t turn off the damn BOSE, because, you know the buttons don’t work.

I finally discover with a magnifying glass, in that credit-card-sized remote is a teeny, tiny place for a battery, which I do manage to purchase after going to three different stores.

It never occurred to me I could pull the plug, it was too late baby, for that.

“You Just have to Laugh…..”

©2015 Cathy Sikorski

 

“Where’s the Beef?”

One of the weekly treats I like to bring my brother-in-law, who is almost done in the rehab center, is a cheese steak. For some reason, this small gesture makes him enormously happy. He eats every single morsel and makes me pick up the remains with a fork so he doesn’t miss a bit. He’s become mildly obsessed with his food choices. This makes a lot of sense as it’s about the only choices he actually has on a daily basis.

If I wore a hospital gown every day, no shoes, didn’t go anywhere and could only choose my TV programs, I, too would be fanatically choosing my meals every day. So I try to be  understanding when it takes hours to go through the menu to pick his meals. I’m so understanding that I turned that job over to my mother. She meticulously goes through every single appetizer, main course, including condiments, right down to the amount of salt, pepper and sugar to bring with each meal, dessert and beverages. Then she makes a copy to leave with my brother-in-law so he can check to see what he’s having or if they brought what he actually ordered.

I find this OCD behavior over food and menus daunting. Probably because I’m on a diet. Or maybe because ever since my babies grew up, I’ve become Attila the Hun about having to worry about any body else’s food. And yet, as my mother and I were visiting him the other day the aide brought him a grilled cheese sandwich for his lunch.

The looks of horror on all our faces told her she was not leaving that room unscathed, because we had just finished this conversation:

Brother-in-Law: “What am I having for lunch, today?”

Mom:”I don’t know, let me look at your copy of the menu. So you chose a hot dog and a cheeseburger for today.”

Me: “Oh you’re having your own summer picnic!”

With that the grilled cheese sandwich arrives. This poor girl is accosted by all three of us with a resounding chorus of “Noooooooooooo!” like she had finally brought the hemlock as we had all suspected.

ice cream sundae“Don’t worry,” the aide said, “I will call the kitchen and get what you ordered.”

Now I’m trying to figure out how ‘hot dog’ and ‘cheeseburger’ looks like ‘grilled cheese’ on a pre-printed menu. But I still want to give everyone the benefit of the doubt. As I go to look at the menu, my brother-in-law starts to eat his grilled cheese.

“I might as well eat some of this, who knows how long it will take,” he mumbles through bites.

He eats half the sandwich, half the ice cream sundae, which he did order and it is now melting, and lo and behold the hot dog and hamburger arrive sans condiments. We take care of THAT catastrophe and all is well in the land of lunch.

By the way, I finally got my hands on that menu….there was no grilled cheese sandwich as a choice anywhere on any day for this entire week. I imagine the people in the kitchen saying things like:

“Oh we ran out of hot dogs, these people won’t notice a grilled cheese instead. I hope they’re not lactose intolerant.” Or any other kind of intolerant.

“You Just have to Laugh….”

©Cathy Sikorski

Mothers and Daughters…..Part 131

My daughters have come from far away cities to visit for a few days. It has made me reflect on Mothers and Daughters. I could do entire blog just about Mothers and Daughters….daily.

Last week as we were leaving the rehab center where my brother-in-law would be departing for surgery never to return, Mom and I began to take the few personal belongings from his room.

As we were leaving, my Mom picked up the three little mylar ballons each on its own stick, that people had given my BIL for his birthday the month before. I thought she was going to throw them in the trash. But she clutched them to her bosom like she had just discovered a new grandchild.

“What are you going to do with those,” I asked, ok accusingly. I asked accusingly. The whole point of this exercise was to leave behind the crap and just take what was absolutely necessary.

“Well, they’re his. I don’t want to leave them behind,” she said by way of obvious explanation to her idiot daughter.

So I turned to my BIL:

“Do you REALLY want these crappy balloons?” I asked. Ok, I asked sarcastically.

“What balloons?” said the guy in rehab who was getting ready for surgery and clearly was not in a festive mood.

“Ugh. Mom, throw that crap away. What does he need it for?” I asked her.

“Well, I could give them to other people with birthdays. Like Jeannie, it’s her birthday soon. I could give her one.” said my Mom innocently.

With that the guy in the bed pipes up, “Yeah, give one to Jeannie and tell her it’s from me and Happy Birthday.”

So home with us the balloons go.

This is the same woman who three days later calls me and says:

“Okay, I’ve cleaned out all of your BIL’s clothing from his dresser, and gave away everything he’ll never wear. I took all his medical supplies and meds and stored them in my house until we figure out what to keep in his new apartment. And I’m going to start taking pictures off the walls next week.”

“MOM!,” I said with the crazy attitude that every daughter wants to say to her mother every time they talk.

cell“What are you doing? We don’t even have a place for him to live yet after surgery. If we can’t get arrangements made, he may have to go back to his apartment temporarily. Let’s not make it look like a prison cell. There’s plenty of time to throw things away.”

Of course, I’m thinking, “at least he’ll have some nice balloons to look at, wherever he goes.”

“You Just have to Laugh….”

©2015 Cathy Sikorski

 

 

Who you gonna’ call…Dustbusters…….

So the saga for my brother-in-law continues. Of course it does, I’m a caregiver.

He had surgery yesterday. Finally, after 12 weeks in rehab of staying in bed with a shop vac on his behind to suck the wound into a better place. I don’t know, that’s what they tell me. It’s actually called a wound vac…but it’s a mini shop vac that stays on the wound 24 hours a day to help the healing process.

My Mom, a nurse from the ’40’s says all they really had to do was keep that wound clean and dry and open to the elements. That’s what Rosie the Riveter nurses used to do and it worked fine. Of course, because his wound is on his bottom he would have had to be lying on his stomach for 12 weeks, with his derriere on display for the world to see. So I’ll take the shop vac method. Plus, if he takes home the vac, maybe it can double as a Dustbuster.

Surgery is a resounding success. The only downside is he cannot be in a sitting position for 4 to 6 weeks. I know. Maybe solitary confinement and water-boarding would be more pleasant. But what are you going to do? The problem with these damn bed sores is that they don’t heal if you don’t stay off of them. And ironically, as bed sores, you can’t stay off of them easily if you are, well, in bed, which is where they insist he stay.

So, now the protocol is that he must be lying on his side or flat on his back at all times.

My brother-in-law is an engineer. He’s actually a rocket scientist as he worked in that industry.

His first question is:

“How do I eat?”

This drives me crazy.

Not only is it not rocket science and he is a rocket scientist, he can’t figure out how he’s going to eat.

By the way, his engineering brain wants to kill me every time I have to do something with his wheelchair or tray table and I can’t figure out the best engineering way to handle it. I’m actually on his side, when he yells at me. I am NOT an engineer. I have no spatial skills whatsoever. I can’t play pool because I don’t get it. Physics eludes me. So when he is trying to explain to me how to turn the tray table around the OTHER WAY so that the feet don’t bump into his cath bag, and I just keep shoving…well he wins the frustration game that day.

MilkshakeBack and forth we go the caregiver and the caregivee with our remarkable skill sets and loss of patience for each other’s nincompoopery (I’m absolutely positive that’s a word in the caregiving lexicon).

So when he can’t figure out that he will have to lie on his side and chew and swallow the best he can, and have as many milkshakes as nature will allow to keep his calories up, and that we won’t starve him. He will have help like he’s always had these last years, well I want to …………..say a prayer of thanks that I can help. (Not really but I wanted to look better than the jerk I am in this moment).

“You Just have to Laugh…..”

©2015 Cathy Sikorski

Kelly, Kelly, Kelly, Kelly…….

I have been trying for 3 weeks to get physical therapy for my brother-in-law. He is in rehab but has to stay in bed for healing purposes. My argument is that there’s no reason he can’t be doing upper body strength training and exercise to keep those muscles from getting weak.

I asked five different people and everyone was going to “get back to me.”

This is what happened when I was in the rehab center and  they actually did:

Nurse 1: “Gee I don’t know about therapy ,let me go check. I’ll come back and tell you.”

Nurse 2: “Well, we are nursing. You will have to talk to Physical Therapy. Go downstairs to the Physical Therapy room and ask for Kelly, she is the Director.

So downstairs I go. In the  Physical Therapy conference room are 5 people. They all have name badges. I talk to the one wearing the name badge ,”Kelly.”

Kelly 1: ” Well, let me look at the register. ”

She doodles around on the computer for a few minutes.

Kelly 1:”Hmmm.I thought I could tell you why your brother-in-law is not getting therapy, but I have no idea. I’m going to have to talk to my supervisor.”

Me: “Okay. I’m going back upstairs, you can get me there. By the way, who are we waiting to talk to?”

Kelly 1: “Kelly.”

Me:(very slowly and deliberately,so I get this right)”But…. aren’t…. you……. Kelly?”

Kelly 1: “Oh there are three Kellys.”

Great. Back to my brother-in-law’s room I go. I am greeted there by Nurse 2.

Nurse 2: “I found out that your brother-in-law doesn’t qualify for therapy.”

Now this is where they expect me to say, “oh,okay.” I don’t do that…… not ever, never. I say things like:

Me: “Why?”

Nurse 2: “I have no idea, I’m nursing.”

With that dandy tidbit, in comes the Social Worker, Courtney, one of the first five people I asked about physical therapy.

Courtney 1:  “We just had a meeting with Kelly(presumably Kelly2) and she said he doesn’t qualify for therapy.”

Me: “Crazy question here….why?”

Courtney 1: “Well because his surgeon said he can’t get out of bed into a chair yet.”

Me: “I know, I talked to the surgeon’s office and they don’t know why you translated that into, ‘he should turn into a useless vegetable with no muscle mass until his wound heals.’ Which is why I had the surgeon’s office call you to say he could have physical therapy of his upper body in his bed.”

SpicyNurse 2: “Oh yes. They did call me. That girl on the phone was rather ‘spicy’ demanding that he get physical therapy and that they never said he couldn’t have it.”

Spicy? Really, a doctor’s office wants their patient to get some appropriate care and that’s spicy????

With that I look at Nurse 2, she looks at Courtney 1, and well, there we are, in a spicy conundrum.

Me: “Get him therapy, now. I don’t care how many Kellys it takes.” Wondering if that was spicy enough to get something done.

That was yesterday…..waiting for a spicy response any minute now.

“You Just  have to Laugh…..”

©2015 Cathy Sikorski

 

 

 

Hello? Hello? Anybody there……?

For a few years, I have been telling my girlfriends  (yes we old people still call our friends who are girls, “girlfriends”), that we should consider bank robbery as a new career since no one is every looking at us or paying attention to us. Pretty sure that was Diane Keaton’s idea in the movie, Mad Money…and then realized it was because it was written by Callie Khouri of Thelma and Louise fame.

So yesterday, when I went to the hospital to find out the status of my brother-in-law, I was still taken aback by events clearly attached to my age, and my apparent Invisibility Cloak that  I forgot to remove.

Weirdly, I was very dressed up because I had just been interviewed on a television show

Killer Caregiver on the Loose and On TV!
Killer Caregiver on the Loose and On TV!

about my new book: Showering with Nana: Confessions of a Serial (killer) Caregiver. Sure why shouldn’t I give myself a shameless plug here in case you missed it!

So when I went to the nurse’s station asking for information, I was told he was being discharged in two hours.

Imagine my surprise, as no one had called me to discuss his medical condition, I had no idea why he was in the hospital let alone leaving the hospital. I was informed that his nurse would come to his room to discuss all that with me in a few moments, as she was busy with another patient.

Okay.

A young woman walked into his room in scrubs.

“Are you his nurse?” I asked, hopefully, as time was ticking by and his transport was coming and I still had no idea about his medical status.

“No,” she said a bit bewildered, “I’m a doctor. I’m here to look at his wound.”

“Well, you better hurry because he’s leaving in an hour and you can’t do it yourself as his wound is on his backside and someone would need to help you turn him over.” Translation: I’m not the one who is going to do that.

Never saw her again.

His nurse arrives and I ask, ” I understand he is going back to rehab in an hour, I just want to know what was determined about his medical condition. Are they changing any of his meds and what did they decide as to what happened to him?”

“Well, I don’t know that. You’re going to have to let me go get his discharge papers.”

“Okay?”

When she returned, she started reading his med list to me. And I would ask what is that for? How long will he take it, etc.

“Ugh, you will JUST HAVE TO LET ME READ THIS TO YOU.” It was like she was reading aloud and just discovered that someone was actually in the room with her.

Stopped her right there.

Very quietly and calmly I said to her: “You need to stop talking to me this way. Your attitude is hurting my feelings. I can’t “hear” you if you can’t stop being mean. ”

“I’m sorry if you feel that way, ” she countered.

“I do, and you need to get the attitude out of  your voice.”

AND THEN,  we were able to have a medical discussion about our joint patient.

Regardless of the adorable hot pink dress I was wearing, that clearly does NOT make me look young, hip and in-the-know like I had imagined, I was at least able to demand some respect, if I couldn’t get it by default.

Since when did ‘middle-aged woman (okay  maybe a bit OVER the middle part) equal stupid? Please see this article below, which is a much more erudite, clever and a possible workshop for those of us navigating these waters!

The insults of age

A one-woman assault on condescension

 

https://www.themonthly.com.au/issue/2015/may/1430402400/helen-garner/insults-age

 

One thing many of us seem to  have in common is that we know:

“You Just have to Laugh……” You can tell by our laugh lines!

© Cathy Sikorski 2015