Category Archives: Caregivers

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

 

 

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What if it IS always Sunny?

Caregivers, Humor, Uncategorized, , , , , ,
https://www.etsy.com/shop/Lydiasdrawingboard
Lydia’s Drawing Board

I love the show CBS Sunday Morning. And every time I watch it, I think of my Aunt Jean. When she would visit from Australia, we would usually watch it together and in spite of her serious macular degeneration, which made her practically blind, and her hearing loss in both ears, which the use of hearing aids only caused constant beeping and buzzing throughout the house that she couldn’t hear, we were somehow able to converse about each story just a little bit.

I was always beguiled by her insight and questioning in light of the ‘skips’ in information that had to occur with each tale from Charles Osgood. But there was one segment every single Sunday where Charles would tell you what interesting stories were coming up in the week ahead. Like, Monday there will be an important decision from the Supreme Court, Tuesday is national Ice Cream day (YAY), Wednesday is the Kennedy Center Awards, things like that. And that segment would have a fake calendar with sunbursts, which is the theme of Sunday Morning.  

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And every Sunday, she would say to me, “Oh look we’re going to have beautiful weather this week. It’s going to be sunny every single day!” And I, every Sunday, would say:

“NO, AUNT JEAN, THAT’S JUST THE CALENDAR ABOUT STORIES!”

And she would be intent on the TV and not even look my way. And then she would turn to me and say:

“Well, we can go shopping and out to lunch with your mother, and go visit Marie. It will be lovely!”

And I would still be saying, “No, no, no….that’s not what it means…..”

I don’t think I ever once let it go.

So on what would have been her 91st birthday to a lovely, sunshiney woman who was my Aussie Mom…..and on Mother’s Day. I’m letting it go.

Every day is sunshine. What a great attitude.

Happy Birthday, Aunt Jean. And Happy Mother’s Day to my amazing Mom, Mary Ann, the spirit of my beloved mother-in-law, Marie and every other caregiver who gives the love of a Mom every day. Hope your smiling and laughing today.

You just have to Laugh

Cathy Sikorski

P.S. Thanks to Lydiasdrawingboard for the amazing artwork!

Some hairy things are cute…others not so much

Caregivers, Humor, Uncategorized, , , , ,

I am a caregiver who tries to take care of herself.

Sometimes it goes haywire: A Girl’s gotta’ take care of herself, for example. Other times……

This morning I put much effort into grooming. It is the weekend. I have been way too helpful to others and wanted to put my best foot forward for weekend activities. The shower was hot and steamy, I got out the high end shampoo and conditioner, used the pretty smelly body wash instead of the manly anti-bacterial soap, and set down the path of shaving.

Sometimes I use the cheap disposable razors, but today I put a new blade in the new Venus razor. All you gals out there know this is the high end, expensive disposable blade razor.

Lately, I’ve been suffering from a sore neck. So looking side ways into my armpits has been a challenge. I guess the hot shower eased up the stiff neck because when I looked left and right it seemed like King Kong’s cousin had moved in under my armpits.

Well, this would not do.

I took that sharp, Lady Venus tool to the task and waited for the beauty of each stroke to clear away the debris.

Nothing happened. Nothing.

I scraped and shaved and swore, knowing that one of those things would definitely work.

Nothing.

Now I’m pissed. I spent good money on that high end appliance. If it’s named Venus, it should make me look like a goddess. It should be so sharp, I’m worried about losing my arms, not just my armpit hair.

Ugh. And how am I going to tackle my legs?

I try another blade. Same result. Of course I’m the one who got the defective pack of blades, because I always have boatloads of time to return things.

I don’t know why, but I think that if I just stare at this razor long enough, it will do what I want. Like the look I used to give my kids when they were little.

So finally, I just decide even though that blade snaps in tightly and perfectly, could it be in upside down?

Oh what the hell. I snap it out and try to turn it around, knowing full well this is stupid since it would only snap in one way. Now the shower is getting cold because I’ve been conducting experiments.

Damn! That sucker turned around and in one swoop worked like a Hoover. Only cut myself three times. But I find Sponge Bob Squarepants bandaids very sexy on weekends.

You just have to Laugh…..

Cathy Sikorski

 

 

 

Well, I DID feel pretty……

Caregivers, Humor, Medicare, Uncategorized, , , ,

The beauty of blogging about caregiving is you get to ‘visit’ with those you have loved and cared for and lost.

I was thinking about my Aussie Aunt Jean this morning (probably because I got yet another bill for her that I had already dealt with four or five times by now ) and wanted to just spend some time thinking about our time together.

You may recall “A girl should be two things: Classy and Fabulous” Coco Chanel http://wp.me/p3CPfo-3i. That was my Aunt Jean. So we were never at a loss to do some girly thing while she was visiting. Shopping was her hobby and she rarely came home empty handed. All her purses matched her shoes, and she was never afraid of sparkle and bling all the way up to 90 years old.

But like many elders, her ‘aches and pains’ became a focus for her as much as her pretty outfits.

“Can I wear that black and white zebra print blouse with these horrible Sketchers?”

“Jeannie, the adorable zebra print looks great on you. The rest of your outfit matches, and you have to wear the Sketchers because your fashion boots are not stable enough, especially with the walker.”

“How about if I change my shoes in the car before we go into the restaurant?”

We weren’t meeting anyone at the restaurant, we were just going out shopping and for lunch.

“No, I don’t want you to fall. You still have to use your walker.”

“Fine,” she said, but in a very disappointed accent.

Then the shingles arrived, and that plagued her every day. So to get her out of her  shingles funk, I decided we would go get our nails done. By the way, she always had her nails done, this was not a treat for her, like it was for me. It was a necessity.

“Let’s go get our nails done!”

“Okay,” she said and with pretty much enthusiasm.

Off we go to the nail salon. My manicurists are delightful women. They treat my Mom, my Aunt and my daughters with kindness and interest. There’s lots of conversation and commenting like: “Ooohhh, that ‘s a pretty color! “My, you look so nice today.” “Are you going somewhere special with this mani-pedi?” That last comment for me because they know I don’t take time for this for just any occasion.

So there we were being all girly-girly getting French manicures and pedis and just relaxing and having a good time.

Two days later, Aunt Jean is still really uncomfortable with those damn shingles and one of her fingers on her left hand starts to blow up like a balloon.

We go back to the emergency clinic that diagnosed her shingles a few weeks ago, thinking that somehow the shingles moved to her finger?

The female doctor lances it, and works on it pretty hard so that Aunt Jean is wincing and yelping every once in a while.

“Well, Jean, nice manicure.”

“Thank you,” she says with an air of sophistication.

“But I think you got an infected finger from that nice manicure.”

See, I try to do something that will distract from those shingles and end up right back at the doctor.

“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

 

 

 

 

A discussion with John Hancock……

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

One day a letter came from John Hancock (not the real one, I’m pretty sure he died a while ago) stating that my brother-in-law had a small long term care insurance policy in effect left over from his employment.

Every little bit helps.

So I called John Hancock to see how we could begin using the benefits, as he clearly qualifies based on the policy I had them send to me for review.

“Hello? I would like to file a claim for long term care benefits.”

“Ok, I need to ask a few questions,” said the nice polite young lady from John Hancock.

“Who are you?” she asked.

“I am his sister-in-law and his Power of Attorney.”

“Well, ok, you need to send us a copy of the POA.”

“Yes, I can do that, in the meantime can you send me the application for benefits.”

“Yes, I will send it to his address.”

At that point, I noticed that they had the wrong zip code for his address.

“I see you have the correct street address, but the wrong zip code. Can you correct that before you send it?”

“Oh, no, I’m sorry, I can’t change anything of his until you send me the POA.”

“But if you send it out, it will go to the wrong place.”

“Oh, yes, I see that. Well, would you like me to send the documents to your address?”

I pause for just a nano second, because experience has told me not to interrupt the ridiculous if it is in my favor.

“Yeah, sure, send it directly to me.”

I gave her my address.

“Now will you be filing that within one week?” she asked me.

“Well, he’s in the hospital for a few days, and may go to a nursing home for rehab or he may come directly  home and rehab there, ” I told her.

“Oh, well then you have to call back and request the forms after he gets home.”

“But it’s long term care insurance,” I said, “either way he will be under long term care.”

“I’m sorry, but I can’t send the forms until he’s home.”

“So,” I say through tears…..of laughter, “you can’t send the forms for long term care until he’s home and not in long term care. And then you can send it to my address until I get you  a copy of the POA to correct his address.”

“Yes!” she says brightly, that’s exactly correct!”080

You just have to Laugh…..”

Cathy Sikorski

Three times is the charm…I don’t think so….

Caregivers, Humor, Medicare, Uncategorized, , , , , ,

I have spent the last three Friday nights in the hospital emergency room. My brother-in-law has been suffering from pressure wounds, what we lay people would call “bed sores”. Since I’m no nurse and refuse to look at the area between his “gluteal crack and scrotum”, I had no idea it was getting worse, even with care.

On the advice of his home nurse I called the ambulance. My big mistake was I didn’t immediately call 911. You can’t just call the ambulance and say, no one is going to die in the next 10 minutes, so could you come over here and transport?. No, you must call 911 and make it as urgent as possible. Okay, I was a theater major, I can make an emergency if you need me to.

The second Friday night in the ER was because, they sent him home from the hospital too soon even though I begged them to keep him. Within 2 days of his going home and having home nurses and caregivers, and inventors of creative ways to make his wheelchair a place to sit without more bed sores, he was in pain with a draining wound and starting a fever. Five days of IV antibiotics later, they sent him home again.

The very first day the visiting nurse appeared she asked me why he wasn’t sent to rehab. Hmm, good question.

That same night, the third Friday night, he started acting a little ‘off’ around dinner time and within 2 hours, I got a call that he was exhibiting bizarre behavior. This had happened once before when he had a massive infection. I gave the home caregiver the pleasure of calling 911 and using her theatrics to get an ambulance poste haste (that’s acting talk for hurry up, someone’s sick but isn’t going to die in 10 minutes).

And this is where it gets crazy.

The first half hour in the ER, he’s got two technicians on either side of him with his arms out trying like hell to get a drop of blood out of him. He looks like a crucifixion. The entire time he’s saying in a monotone: “Ow.”

Like a hundred times: “Ow.”

“Where does it hurt?” I ask him.

“Everywhere,” he says.

That exact conversation continues for the next three hours.

After two hours of “Ow”, they tell me he’s third on the list for a CT-Scan. He starts to get a little crazy now. He’s thrashing around and my Mom and I are holding down his arms because he has IV lines in his hands and we don’t want him to accidentally rip them out. He’s already been crucified once.

Then he gets louder and now he’s saying: ” I can’t” and “Oh please” and “Ow” and we try to reassure him. He is thrashing and fighting pretty wildly now.  I have asked for a pain pill and I’m just about to pull a “Terms of Endearment” Shirley MacLaine mother of all hissy fits, when the nurse comes in with the CT-Scan tech behind her. She tries to give L a pain pill, but he won’t swallow water. The CT Scan guy disappears figuring he ain’t goin’ anywhere till he calms down, and then the Nurse high tails it all around the ER looking for CT guy to get his ass back here and take L for a scan.

Somehow they successfully scan him. NOW because all tests of urgency have been done, and there is no concern that a pain killer IV will harm him, the Nurse hunts down the doctor….who we still have not seen or talked to…..and comes in with some miracle drug that knocks him right the hell out in 60 seconds flat.

It is now almost 2 A.M. We have been there for more than 3 hours. He is finally resting, calm and not in any obvious distress. We go out to the Nurses’ station to see if they have any sense to confirm that he will be admitted. I answer all their questions. One of the doctors says let’s go back to his room so I can see if I have any more questions. I’m thinking she wants some HIPPA privacy rather than discussing this in the open hallway.

My mom and I walk into his room. He is resting so comfortably that we both let out a huge sigh of relief.

What is the first thing this doctor does?

She gently goes over to his bedside, looks down at him, puts her hand on his shoulder, shakes the hell out of him, pulls his eyelids up and yells: ” L! CAN YOU HEAR ME? L! CAN YOU OPEN YOUR EYES?”

My mom and I just look at each other and go “Ow” and walk out of the room……good luck with that Dr. Nutjob.

 

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