Best Notify My Next of Kin…This Wheel Shall Explode….Absolutley Fabulous

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

The frustration level of caregiving is equal to the dropping temperatures here on the East Coast, which is at a 100 year low.  Pretty sure that’s true.

Finally after spending 6 months in rehab, my brother-in-law was finally home, healthy and enjoying his meals in the dining room with his best pals. Then the flu hit his facility. On Christmas.  But five days in the hospital with the flu, double pneumonia and a urinary tract infection did not keep  him down. Home on New Year’s Eve, he was ready to get back to his normal life.

When he, his neighbors and his caregivers all noticed that he was precariously listing to the right, they called me.

Now this wheelchair has been a problem for several months. A new set of footrests were installed and ever since then, the wheels get stripped. After the second time this happened, I told the repair people to really look at the problem.  The footrests were major culprits and needed a good talking to.

Here we were again only 60 days after new wheels were put on the chair. My brother-in-law looked like he was practicing for a circus act, as he sped down the hallway with his hair blowing in the breeze at a 45 degree angle.

When his caregivers called me, on Sunday, I was firmly ensconced in a charming little Italian restaurant 150 miles away in NYC. Of course, it’s adorable that they think I can actually fix the wheelchair.  I would have to have extra wheels, a special screwdriver, and actual mechanical knowledge. No wonder I have a God complex.

Monday, bright and early I call for repair assistance. I beg. I plead. I offer candy, money and my first born, whatever it takes to get this chair fixed ASAP, since he just got back to a semblance of a real life. What usually requires two weeks, will take two days. Okay, we can live with that.

Two days later, I arrive at my brother-in-law’s apartment for the 10:30 AM appointment. I’m psyched. Chair will be fixed. Man can get in chair and have meals with friends, all will be well in the universe.

10:30 comes and goes.

11:00 comes and goes.

“Hello, wheelchair repair guy, where are you?”

“He’s just a bit late,” they tell me.

11:30 his caregivers arrive to get him dressed to gently place him in his newly fixed chair. Except that it’s not.

12:00 comes and goes.

I have to call again. Why would they call me? I’ve only called them 10 times in the last 48 hours. It’s not like they have my phone number or know that I am waiting for them.

“Hello, wheelchair repair guy, where are you?”

“He got caught up at his last job, he will be there as his last appointment of the day. Sorry, i hope that’s okay.”

Sure. I only have to now order his meals to be delivered to his room, if it’s not too late. I need to reschedule all the caregivers because their duties will now change, since he is in bed and can’t get in his chair. I will have to go to the dining room and tell his dining buddies that they don’t have to set up his place, his tea, and his special condiments like they do every day because they are kind and amazing. But sure, no problem, you just show up when it works for you.

What I say is, “okay, just get it fixed, today.”

Miracle of miracles, I come back early in the evening to find BOTH wheels repaired, the foot rests changed and the chair ready to go. Too late to get my brother-in-law in his chair. But he says, “hallelujah” when I tell him he will be out and about starting with breakfast tomorrow.

On my way to a business appointment the next morning, I’m feeling quite smug as I know my brother-in-law is already at breakfast and I got the chair fixed in 2 days!

My phone rings. I answer with a happy lilt in my voice.

“Hello?”

“Hi Cathy? This is the caregivers. Larry doesn’t feel well. He refuses to get in his chair. He has a temp and should probably go to the ER.”

You just have to Laugh………….

©2015 CathySikorski

10 Doubts and Desires for 2015……

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HAPPY NEW YEAR  to all my kind and faithful readers!  In the spirit of the New Year, I am taking a Nostradamus point of view and a Pollyanna perspective.

Five things that will not change in 2015:

1. Medical Insurance Companies will not make our lives easier:

I know this is true, because I have already received confusing literature about co-pays, prescription drugs, and durable medical equipment. This from three different places for my brother-in-law, myself, and my friend with the traumatic brain injury. Wading through complicated, confounding medical gobbeldy gook will continue as before.

2. Hospital stays will still make everyone crazy.

Now, granted, no one likes to be in the hospital. But as my brother-in-law just returned home from a bout with the flu (yes, we all had flu shots, to no avail) it still rankles that your own doctor doesn’t come to the hospital any more. You get a ‘hospitalist’ who doesn’t know you, does tests you probably don’t need (because he doesn’t know you) and get a crappy diet because they think you’re a diabetic when you’re not.

3. The skirmish about Obamacare

I am all for everyone having health insurance…..as frustrating as it can be, because I’ve seen first hand what happens when you don’t have it. However, when the new and improved arrives, there will always be problems, glitches and the need to massage it into a better place. And when it is a hot button political issue to boot, well, the conversation will continue to exasperate us all like those year end car sale commercials……endlessly.

4. Dieting

Yep. Here we all are again. Like my Nana used to say, “fat, ragged and sassy.” Will we never cease this battle? Nope.

5.  Facebook.

That’s it. Just Facebook. Persistently annoying and enthralling as it was in 2014 and will continue in 2015.

Five things that will change in 2015:

1. Hotels will give you free WIFI.

Yep. I discovered that in today’s newspaper. Yes, I still have delivered and read an actual newspaper (perhaps that too will end in 2015, but not because I want it to).

2. Airline fares will abate.

C’mon. They just have to. Fuel prices are dropping like flies every day.  The excuses are running cold. Airlines need customers like a fish needs water. Obviously metaphors and similes will dictate cheaper airfares.

3. Customer Service will improve

See #1 and #2. Pundits claim that true business success will return to the customer service model. We can only hope, as customers, that is.

4. People will be kinder and gentler.

I think we are all getting tired of boisterous debate. I declare 2015 the year of the kinder, gentler human being. We saw the film, “Unbroken” on New Year’s Eve. The humiliation of one human being to another is probably the most palpable part of that movie. Perhaps people will stop that, and just be nice, goddamnit.

5. People will stop dieting and laugh more.

We all know that by February 1st most diets will end. And thank God, people don’t seem to laugh so much when they are eating celery and carrots, and nothing else. I predict beer sales and comedy clubs will begin to prosper right around Ballentine’s Day. (yes, I said Ballentine, but for those of you who didn’t grow up on the East Coast, Valentine’s Day is just as good).

I wish you all a happy, hilarious 2015……because……..

You just have to Laugh……..

©Cathy Sikorski 2015

The best things happen while you’re dancing…..and then……..

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Recovery from a crazy weekend symbolized too much drinking, eating, carousing and not enough sleep. Good times. Recovery in the baby boom lexicon foreshadows peculiar changes.

Last weekend my husband and I went to two dinner dances. We love to dance. In fact, we took three different ballroom dancing classes this year.  Since ballroom dancing is one of the top five things you can do to stave off dementia, we figured a thrown hip or knee was a better choice than Alzheimer’s. You wouldn’t recognize ballroom dancing if you watched us, but we just love to dance and that was a legit way to get off the couch, do something fun together, and laugh at our mutual lack of skill.  Then we go back to our lounge lizard moves.

Now at our age, two late nights of dancing, in a row, is pretty risque. The problem is not the actual dancing. It’s the recovery. Saturday night’s gala lasted until midnight. Traditionally, at this affair, we are the last couple on the dance floor with our best friends. This is a country club affair, and if my husband is the recipient of an award  (which is often, because I married a winner in every sense of the word) then we dance more, he drinks more, we talk more and we recover more slowly.

Yes, he won.

Recovery now means we were up too late (past midnight!), too much physical activity

What dancing really looks like
What dancing really looks like

(dancing?) plenty of sleep (because we pass out in our bed as soon as we fall into it) and at least one person who was the designated driver and is only recovering from too much water. And yet, the morning after….the bones creak, the legs move slowly, napping is scheduled as a high priority the minute one wakes up, and the thought of grooming to a high level all over again is daunting.

The next day we both tried to lay low knowing full well our other set of best friends would expect dancing mania, especially since they just completed a course of ballroom dancing with us. We did not disappoint. Although, with 30 minutes of rock and roll left, I could see my intrepid husband slowing down.

“My legs are giving out,” he whispered, as he twirled me in towards him.

“My feet are killing me,” I said quietly, as I did the cha-cha around him.

Now I know what Ginger Rogers meant when she said something like: You try doing this in high heels and backwards….and Fred gets all the credit.

As we limped to the car, the second night in a row, I said to my dancing partner and life partner, “I don’t think we can do this again.”

He mumbled something back which was either, “sure we can, we love to dance,” or “I think we can refinance.”

Drinking coffee at the breakfast table the next morning, I hear my husband coming down the stairs mumbling, “Ow, Ow, Ow.”

I would have gone to the bottom of the staircase to help him, but I had just crawled over to the coffee pot and wasn’t about to do that again.

“You just have to Laugh…”

©Cathy Sikorski 2014

 

 

I always tell the truth. Even when I lie……Al Pacino

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There is a Medicare rule that requires your Part D (which is prescriptions only) provider to now call you before they send out your medications.

Many of these Part D providers also require, or at least push for you, the patient, to purchase your medications through the mail. The insurance provider wants you to have your doctor order these medications directly from them and then the magical pharmacy in the sky sends the medications to your home.

This process has its ups and downs. On the up side, your medications are delivered directly to your door. For many a senior, ill person, or caregiver, this is a blessing. Nothing is more delightful than not having to go to the pharmacy a million times a month for meds that run out at random intervals.

However, often our elder parents, aunts, and friends are frustrated by their inability to have that paper prescription in their hot little hands, take it to Phil, the Pharmacist, and go home knowing they have the correct meds as confirmed by Phil, and they don’t have to wait days or weeks to see the meds they need.

Now that Medicare has added this ‘protective’ provision that your insurance company must call you on the phone and confirm that you or your doctor ordered this medication, that you actually want the medication and that you wish it to be sent to you in a 90 day supply, another fun-filled element has been added to the mix.

So for me, it goes like this.

My brother-in-law struggles a bit with the phone, pays no attention to his meds anyway, and has for 5 years, relinquished any responsibility for anything. So, I leave a message at my brother-in-law’s doctor’s office requesting they order the medication.

I get 2 or 3 emails from the Part D insurance company confirming that a mysterious prescription has been ordered. They can’t put the name of the drug in the email, so I have to go to the Part D website to see if the correct drug has been ordered. My brother-in-law takes 40 pills a day. So I have to wade through the list to make sure all is correct.

Then Part D Insurance Company calls you on the phone. I never know when this call is coming. If I  miss the call, I put the process behind until I can respond. Now, for all of you who may need acting lessons in the future, I was a theater major in college for a bit, and I will be giving lessons. Now.

When the caller asks you if you are your brother-in-law, drop your voice three octaves and mumble a reply that sounds something like, “Yus.” You’re only talking to a machine, never a real person. Every other question, as his Power of Attorney, I have answered a million times, so I have the answers. But remember mumbling and voice alteration are your friends.

You will be pleased with the results when they conclude the call telling you your drugs are on the way! Just in case you don’t remember this conversation, they send you yet another 2 or 3 emails to confirm that the mysterious drugs, whose names shall not be mentioned in an email, will be delivered shortly.

You’re welcome, and remember all my caregiving thespians….

“You just have to Laugh…..” but don’t do it while mumbling and dropping your voice a few octaves.

©2014 Cathy Sikorski

A Caregiver Confesses…………

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

Not every day in a caregiver’s life is worthy of a pat on the back. Last week the visiting nurse called me with her weekiy update:

“Hi Cathy, all is well with your brother-in-law,but I’m calling today as his advocate.”

Uh-oh. What does that mean? Immediately, my hackles go up. I don’t actually know what hackles are, if I have them or when they go up and down. But I do know that some red flag is waving behind my eyeballs, and I have become defensive before she even says her next sentence. And here’s why. I am his advocate. Not you. First, I am a professional advocate. Second, I am the one who goes to bat for him almost on a  daily basis. And third, if you are telling me you are advocating for him to me….that must mean you are about to tell me what I’m doing wrong.

“Okay,” I say calmly, “what’s up?”

“Since you’ve put him back on bed rest, he is frustrated and really angry. He doesn’t want to be in bed most of the day. He needs to be in his wheelchair and out and about with his friends. He needs to go to the dining room for every meal and have that independence.”

And here’s where I’m not so happy with myself….but this is only the first part of my confession.

“Let me tell you something (not a good way to start an open-minded conversation). He  just returned home from 10 months in and out of the hospital with 6 of those months straight in a nursing home.In just four days after being home, he began to have bed sores again and problems with open wounds. I feel pretty certain that he does not want to go back to either of those places and so since I know that bed rest was the only solution, I instituted that. Within 10 days of you seeing him, those wounds have significantly healed and he is almost able to return to his normal routine.”

“Well,” she replied, “I’m sure that’s what he needs.”

“I am not trying to make his life harder. Quite the contrary. But I will be sure and let him know that you have advocated for him.”

“Okay, thanks and Happy Thanksgiving!” she said as she got off the phone at breakneck speed.

The Thanksgiving remark sort of slapped me back to reality as well. I was feeling less grateful for her help and more needy of explaining my part in this Passion Play.

And then I misbehaved.

I went over to my brother-in-law’s apartment to discuss his advocate. I waited until the next day, so I could explain to him that I’m not a monster, I’m not insensitive to the fact that lying in bed most of the day is boring, not fun and makes for a long day. I only have his best interests at heart, and I don’t want him to end up back in any place but his home, where he is as happy as he can be.

When I arrived, he was watching TV in his chair.

“Hey,” I said, “your nurse tells me your mad at me.”

“Yeah,” he said, “I don’t want to be in bed so much. ”

And this is where all my sensitivity training, my caregiver’s heart and I’m pretty sure my 26 years as a Mom comes in to soothe and explain how all my hard work for him is truly in his own best interests, that I love him and want him to be healthy and safe and happy and that sometimes that road is a little bumpy.

“Get over it, ” I said.

I thought he would just have to laugh…..and guess what…he actually did………

©Cathy Sikorski

 

 

2014 Reasons to be grateful….okay only 10…..

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Everyone has something to be grateful for…just look around you:

1. Grateful that my cleaning lady is downstairs and I’m up here typing.

2. Grateful that my company left, not because I didn’t LOVE having them here, but now I can forget to put on a bra, or clothes and run to answer the phone or quick send that email.

3. Grateful for my sister who basically cooks the entire Thanksgiving dinner, except the turkey and stuffing and brings it to my house. You should all be so lucky, especially when it’s snowing.

4. Grateful that my brother-in-law is home and snuggled in his independent living and not in a nursing home anymore……even if the visiting nurses still try and get me to look at the miraculously healing wound on his derrière.

5. Grateful for my darling, amazing, commenting, fun, funny, interesting readers of this blog.

6. Grateful for Depends, mail order drugs, external catheters, bed pans and spit cups. Yes, those inventions make my life better.

Wine...just wine
Wine…just wine

7. Grateful for the Hallmark Channel, bad Christmas movies and wine, really grateful for wine.

8. Grateful for all the people, Facebook posts, somee cards, and Pinterest posts that make me laugh.

9. Grateful for heat, electricity, water and wine, not necessarily in that order.

10. Grateful that I am able to sit here and write this blog because I have an amazing husband, daughters, mom, brothers, sisters, friends, a cleaning lady and wine.

Thank you all for being my readers, my friends, my supporters and my partners in laughter…Laughing alone isn’t nearly as much fun and…..

“You just have to Laugh………”

©2014 Cathy Sikorski

 


	

	
	

		
			



							


	

				

					

		
				

			Book Review: Are You Kidding Me? by Stacey Gustafson
		

		
		

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I have been given the great honor to provide my most excellent readers with a book review on a humorous tome called : ARE YOU KDDING ME? MY LIFE WITH AN EXTREMELY LOUD FAMILY, BATHROOM CALAMITIES AND CRAZY RELATIVES.


For those of you who know me intimately, no this is not about you and I didn’t write this book. (That does not mean you shouldn’t panic about the future).


Stacey 2This rollicking review of life comes form Stacey Gustafson and gives us funny, charming, naughty and brutally honest snapshots of 20 years of ups and downs in her family. The fact that they still love her and talk to her is downright incredible.


Some of my personal favorites include driving lessons with her eldest called : Stressed Out in the Passenger Seat, even my daughters will tell you to this day that I am the worst passenger while they are driving.


Also loved, Toilet Phobia, not because I grew up with one, like Stacey, but because I am always on the lookout for one and can see how I might get confused once I’m in there.


I wished I had been living with her during her “Burnin’ Love” period.  There can never be enough homemade pizza…..or so I thought.


And her mother’s antics are actually more like me than my mother. I saw a peek into my daughters’ future, and it was scary.


Stacey captures the craziness of family life and gave me all the smiles I miss from reading Erma Bombeck.


I’m sure you can find ARE YOU KDDING ME? MY LIFE WITH AN EXTREMELY LOUD FAMILY, BATHROOM CALAMITIES AND CRAZY RELATIVES  at Amazon or a book store you love…if not ask for it and make them get it for you!


Best of luck, Stacey. You are definitely in my corner where


“You just have to Laugh…..”


Below is Stacey’s blog and how to link to Amazon to get her book!


Amazon: http://www.amazon.com/Kidding-Extremely-Bathroom-Calamities-Relatives/dp/1937303314/ref=sr_1_1?ie=UTF8&qid=1416585271&sr=8-1&keywords=stacey+gustafson




Blog:  http://staceygustafson.com


 


©2014 Cathy Sikorski

	

	
	

		
			



							


	

				

					

		
				

			Nailed it……………
		

		
		

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I am getting a mani-pedi tomorrow.  First, ballroom dancing and now mani-pedis. Who is this so-called caregiver? But I have to because I’m going to a Masquerade Ball where I can use my new and improved dancing skills.


This brought me to the conclusion that my brother-in-law could use a mani-pedi himself. I just can’t get him to the salon. No one will transport him in his humungous wheelchair if it is not a medical necessity. Now actually, it is a medical necessity. Because he is diabetic, he must have his nails taken care of as a function of keeping infection and fungus away. The podiatrist will come to his apartment and take care of feet, but not fingernails.


Conveniently, there is a salon in the building where he lives. After 6 months in a rehab nursing home, wanting to feel clean, and groomed and just as much  a regular guy as possible, we made an appointment for my brother-in-law to get a haircut and a manicure at the salon in his building.


Sorry.


The manicurist won’t cut his fingernails. They are too hard to handle and she’s afraid of hurting him or cutting him. Albeit, she is supposed to be a professional manicurist. She suggests I get the visiting nurse to do it.


I text the visiting nurse. This is our text conversation:


“Hi cathy…We r not allowed to cut nails due the (sic) the risk of infection with diabetes..Sorry :(”


“Thank you for telling me. Do you know what other people do?”


“A podiatrist for the toes and I guess they do the fingernails themselves.”


I know. Already you are saying…………but Cathy, if he could do it himself you probably wouldn’t be asking this question…..to a nurse.


I can only come up with two possible solutions:


1. Pretend he is a bride and make arrangements for a personal manicure on his “wedding day.” I know some manicurists will do that. They may require an entire bridal party, but I’m sure I could get my mom and sisters, maybe some nieces and girlfriends to show up.


Or


2. See if I can get him a mail order bride that is a manicurist.


Either way the word bride seems to be the answer to my problems.


“You just have to Laugh…..”


©2014Cathy Sikorski


 

	

	
	

		
			



							


	

				

					

		
				

			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

	

	
	

		
			



							


	

				

					

		
				

			Patience…the Patient has gone clear….
		

		
		

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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