Tag Archives: Family caregivers

A Girl’s gotta’ take care of herself…..

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

In the vein of  every caregiver has to take time for herself, I was remembering that I started my caregiving journey over 20 years ago, first with my Nana and then with my great aunt Mary. Aunt Mary was a crotchety character, probably why she crocheted 10 hours a day. She thought she was  being crotchety but she was mixing up her letters.

I went to her house a few times a week, after my Uncle Buddy died because she only had a few nieces and nephews. Her son had sadly passed away before his parents, and her grandchildren lived far away.

Again, I was designated caregiver because as a stay-at-home mom, I had nothing else to do. Said the stay-at-home mom to no one.

Aunt Mary lived 30 minutes away and required grocery shopping, prescription pick up, supervising her cleaning lady, checking her mail and paying her bills. I took  my 3 year-old with me and it was just a few hours out of our day. But after having my Nana for two winters, and discovering I was pregnant. I was starting to feel tired, old, ugly and sad.

My husband saw the downslide and suggested we go to a fancy dinner dance at the club. Yay! A new dress, nails done, hair done, pretty, pretty, pretty me.

I hired a babysitter. I began the day with a fresh outlook. I was excited for the pampering and an evening of dining and dancing. My husband and I love to dance, and it had been a while since we danced the night away.

In the spirit of thinking everyone deserved some fun, I wore that rarely seen sexy thong underwear in the back of my dresser drawer. I kind of hate thongs. They are so darn uncomfortable. But under certain circumstances I must agree.  First, the dress looked ever so much better with no panty line. Second, my husband deserved a little fantasy. Which was probably the closest he would get to fantasy because if the evening went the way I thought it would, he would be a bit tipsy, we would both be exhausted from dancing, and we would fall into bed and be snoring a duet within minutes upon our return home.

So off to the ball we went. Cinderella (that’s me…code name caregiver) danced with her Prince Charming to every single song they played. Fast, slow, samba, mamba, polka, it didn’t matter. If music was playing, we were dancing.

Oh my, so much fun. I made sure to hydrate constantly. I was the designated driver, but I didn’t want to wake up to mommyville with a dehydration headache. At some point in time, I decided a trip to the loo was in order. I went in to the ladies room feeling, hot (as in sexy) confident, happy and just darn groovy.

I go into the stall hike up my dress, go to pull down my panties. Hmmm. I remember just then I’m wearing that darn thong, and gee, I didn’t feel the need to grab my own ass the entire night.  It is then that I see I have come across a new invention. I am wearing my ‘thong’ sideways.

Do it all the time now. Too comfortable to go back to tradition.

“You  just have to Laugh…..”

Cathy Sikorski

When wine and wheelchairs DO mix…..part deux

Caregivers, Humor, Multiple Sclerosis, Uncategorized, , ,

If you have been living in the Snowmaggedon part of the US this 2014, you know how desperately we all want sunshine and warmth. My last post was from a teeny jaunt to Florida and I was somehow lulled into thinking that going away meant being away.

Day Three: My friend and I are getting ready to go out to the extra special dinner we have planned for the trip. We are going to a five star restaurant to be wined and dined. We have been lolling in the sunshine, chatting for hours and resting in the warm, balmy air of Florida.

“Hello?” I already recognize the phone number, Chestnut Knoll at Home, and know it’s not good.

“Cathy? This is your brother-in-law’s caregivers. His wheelchair is broken in the lying back position, and we can’t get it to move. And it’s time for his dinner.”

All I can picture is the poor guy laying back like in a dentist’s chair trying to get some peas into his upside down mouth.

“Okay,” I say,” let me call the wheelchair repair guy, because this is their rental that they just brought him yesterday.”

Of course, it is 5:00. I’m in a bathrobe, wet hair, no make-up, our taxi is coming in a half-hour AND, I’m pretty sure wheelchair repair guy closes at 5:00.

I call the repair office, closed. I call the salesman in my phone that I have listed as ‘wheelchair Sean’ and leave a message. I do what every caregiver does. I call my mom.

“Mom, I left messages for the wheelchair repair guy but I don’t know if they will get back to me. The caregivers suggested we get a hospital tray and put him back in bed, but I don’t think that makes sense.”

My mom is 85 years old. A REALLY GOOD 85 years old, but I can’t picture her hustling a huge hospital tray on wheels into her car and over to my brother-in-law’s for dinner.

“Okay,” she says, I’ll just go over there and help feed him.”

I call back the caregivers at my brother-in-law’s phone but they don’t answer. I call their office and we formulate a plan for Mom to feed him now, they will feed him breakfast and hopefully the repair guy will get there before lunch and they can get him back in the chair by then.

My phone rings, I’m still in my bathrobe.

“Hi.” It’s wheelchair Sean. He gives me some simple directions on how to probably fix the chair.

I call the caregivers at my brother-in-law’s phone again. Still no answer. I call the office, give them the instructions. They call me back in 2 minutes, saying crisis averted, chair fixed.

I throw the phone at my friend and tell her to call my mom probably driving in her car and tell her to go home.

“Hello?” I hear my  Mom answer, as I’m putting on a face in the bathroom, and trying to get on underwear before the taxi gets here.

My friend says to my Mom: “You can go home, the wheelchair is fixed.”

“I can go home?” my Mom says. “Yes, go home, he’s fine,” my friend tells her.

“Okay, thanks. I’ll go home,” my Mom says, “ummm, WHO is this?” Explanations ensue.

My friend and I go to an absolutely lovely dinner where we are treated like princesses. We have a bottle of wine, oysters Rockefeller…my phone rings.

“Hello?”

“Hey, it’s your brother-in-law.”

“Hi, is everything ok?”

“Well, yeah, YOU called me. What did you want?”

Really?

“Oh, nothing,” I say and dive into my Pinot Grigio.

You just have to Laugh…….

Cathy Sikorski

When wine and wheelchairs don’t mix……

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

What do several rocket scientists, a computer nerd, a lawyer, a doctor, an industrial inventor a, a plumber and a nurse have in common? Let’s see………..

The day of the engagement party finally arrived. It was an unusually cool and delightful August evening. The bride-to-be was resplendent in an adorable white frock, the groom-to-be handsome and convivial with all the guests from young to old.  Because Uncle L was confined to a wheelchair from his MS, many things were put in place to make sure he could attend the party. He was an important part of the family and we all wanted him there, and he was game to go out and be with friends and family.

It was just lovely, We were really having a wonderful time. Uncle L had a nice Jack Daniels, his favorite adult beverage, and enjoyed several of the fancy hors d’oeuvres. When it came time for the buffet dinner, there weren’t enough clucking hens of mothers, nieces, sisters-in-law to fill his plate and keep his mustache clean. Of course, he was at the “cool table” where all the middle-aged people think they’re the coolest with lots of joking, insults and free flowing wine. Even Uncle L was not spared a joke or two…just like old times.

With so much taken away by that dastardly MS and the wheelchair, we all made allowances for Uncle L’s one vice-smoking. So after dinner, Uncle L wanted to go outside for a smoke. A couple of smoking cohorts joined him to proceed to the parking lot. No go. No, seriously, the wheelchair no go.

First they called me, the caregiver/lawyer. What did I do? I pushed the button that says “go.” That didn’t work. I thought about saying, “objection!” but was pretty sure that was a waste of time. Then we called over the rocket scientists and the computer guy. Hmmm, look at this, push that, fiddle here and there. Nope, nuthin’. The plumber, the nurse and the doctor wisely said, “well, we will all just have to push the chair.” This chair weighs a ton, even without a big guy in it.

So all the big guys got together pushed the chair to the transport, we got into three separate cars to meet at Uncle L’s home to get him back into his room in time for the  caregivers to get him to bed. We were a little late and God Bless these amazing caregivers who have never let us down at Chestnut Knoll at Home (I promised them I would give them a plug whenever I could as the minimum of thanks) who called me to find out where Uncle L was.

We get him and the super heavy chair out of the transport with lots of brawn and maneuvering, and they put him to bed.

The next morning I get a call from one of the lovely ladies of Chestnut Knoll at Home to tell me that I could call off the repairman I sent an emergency call to last night. She fixed the chair just by making sure the plug was connected in the back.

You just have to Laugh………

Cathy Sikorski

Um….yeah…..not paying that….

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

You think when your caregiving ends….well, your caregiving ends. But not so, intrepid caregivers. I’m now steeped in estate work and it, too has it’s unbelievable encounters. I have to call billing department after billing department to make certain that a bill is legitimate before I concede to pay. And each billing experience makes the last one look like child’s play.

Billing Experience Number One (really probably number 157)

“Hello? I have a billing question. Can you help me with that?”

“Sure.”

“What information do you need?”

” How about do you have a name and birthdate?”

“Why yes, yes I do.” And do I give her all the necessary information to retrieve the bill for my mother-in-law.

“My question is, this bill seems to have been processed by all her insurance carriers, and so there should be no balance due, and I know that she has also met her deductible.”

“Well, there is still a balance due after that.”

“No, I don’t think so. I’m pretty sure that according to the laws in Pennsylvania, if someone is on Medicare and they have a Medigap policy and both insurances have paid AND the patient has met their deductible that you must accept that as payment in full.”

“One moment, please.”

Oh boy, Muzak.

She returns pretty quickly, which in and of itself makes me happy.

“Well, ok, then. There is no balance due, but we didn’t have in our records that she was on Medicare.”

“Really? Because you just asked me to identify her by her birthdate, which is 1916, which makes her 97 years old AND you are showing on your bill that Medicare made a payment, just sayin’…”

“Well……”

And she hung up.

Billing Experience Number 2 (Actually not even 157, more like 210 by now)

“Hello. I have a billing question. Can you help me with that?”

” I will transfer you to billing.”

“Hello, I have a billing question. What information do you need?”

“Sorry ma’am this isn’t billing. Let me transfer you.”

“Hello, I have a billing question. What information do you  need?”

“Can you hold a moment?”

Of course, I don’t get to answer that question. I just get more Motley Crue Muzak.

“How can I help you?”

“I need to know if this bill for Aunt J is final?”

“Well, let me see…..hmmmm…..no, it looks like there is another bill with an additional balance.”

“Well, I’m sorry to tell you that there are no funds to pay this bill or any future bills. There will be no estate and the patient was visiting from Australia.”

“What? Australia? I don’t understand.”

Really? I’m thinking…..what’s not to understand. That seems pretty clear to me, but OK, I’ll just lather, rinse and repeat.

“Well, I’m sorry to tell you that there are no funds to pay this bill or any future bills. There will be no estate and the patient was visiting from Australia.”

“Um…ok…so could you send us a letter to that effect with a death certificate?”

“Sure. I would be delighted to do that.”

So far I’ve had to send that letter and death certificate 11 times. Do you think they would send me anything for free?

You just have to Laugh……

Cathy Sikorski

What those toddler tantrums were REALLY training you for……

Caregivers, Humor, Uncategorized, , , ,

A friend of mine recently took a job at the Assisted Living facility where my mother-in-law spent her last few years. My friend will be a great asset to the Villa, and overall, it was a wonderful experience for us, eventually.

The first day, however, was like sending your first born to kindergarten. We had taken Mom to the facility to “check it out”, knowing full well we were already going to make it her home. ( I was going to say, “send her there” but even still those words sound so harsh….even though we KNEW it had to happen). And that tour was the disaster in my blog,  Who Knew Grandma Has Great Legs…

But we persisted with the move forward since we were still afraid that she might burn down her apartment building, or not have any nutrition but coffee for days at a time. So we brought her to our house for a long weekend, telling her that at the end of the weekend her furniture, clothing and personal items would be moved in to her new apartment and then she would move as well.

The first day of school arrives…I see her at my breakfast table having her coffee and tell her I’m going to the gym and when I get back we will shower and get ready to go.

“I’m not going. I’m not going,” she says while LITERALLY STAMPING HER FOOT LIKE A TWO-YEAR OLD! Now, my mother-in-law had an amazing sense of humor. And she is really kidding me, but I know there is a sense of panic there.

“Okay,” I say, “we’ll talk about that when I get back.”

“Don’t hurry back!” she yells after me.

As I’m working out at the gym, I realize that my best arsenal might be in remembering how I dealt with my toddlers. But I am really cognizant of respecting my mother-in-law here. We tried to include her in the process, but at 94, she wasn’t really all that interested in change.

When I return home from the gym, I hustle Mom into the shower, dress her in a darling little outfit and the protests begin:

“Why can’t I stay here and help you?” In support of that, she folded my laundry while I was at the gym, which she hasn’t done in about 5 years. Tricky little devil, this one.

“Well, Mom, because I have too many stairs, I’m not home all the time”…blah, blah blah

She is undaunted.

“Well, I can stay with  your mother. She has a big house. No one is there but her and she could use the company.”

Ugh. Remember when your little ones said “why, why, why” to everything? What did you do?

“No, Mom. Just no.”

“But…..” and she goes for it a few more times.

“No.” That’s all I say.

We get to her apartment and she is pleasantly surprised to see all her own things there set up much like her apartment that we moved her from. We go to the dining room and we let her order whatever she wants.

And this is where you know you’ve done the right thing.

She looks at her food and says:

“Who ordered this, it looks delicious!”

You just have to Laugh……………….

Cathy Sikorski

When naughty is nice……

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

I have done something very naughty. I must even go so far as to admit I have done it on purpose. You will probably not agree with my decision, but in the end, was I right? If you’ve read any of my blogs….you know the answer to that.

Being a caregiver puts you in the ‘decider’ seat  more times than you care to admit. And sometimes you don’t want to be George W. Bush….you WANT someone else to be the decider. But alas, you’re it. You are the caregiver.

The hired caregivers, who do all the hard stuff, the bathing, the dressing, the cleaning up, keeping the list of needed items, they gladly call on the decider when well, when decisions must be made.

So, I get a call from Susan, head honcho caregiver:

“Cathy, your brother-in-law, is acting weird.”

“Weirder than usual,” I say, hoping that this is just happy conversation, knowing all the while that I am in for a project.

“No, not usual weird—- cranky, mean and kind of ‘out of it’ weird”, she says weirdly, knowing that I KNOW she wouldn’t call me unless there was a problem to be solved.

“Hmmmm, that sounds like, ‘you-know-what’, doesn’t it,” I say with regret.

“Yup,” she says, ” a UTI” (everyone’s worst caregiving enemy…the urinary tract infection). ” He’s weird, he’s ornery and his urine looks a little tinged with brown. So that ‘s not good.”

“Okey doke,” I say with false upbeat. “I’ll call the visiting nurse he has right now and get her to call the doctor.”

Now the reason I have to go this Chutes and Ladders way is because I have no medical authority to call the doctor and beg for an antibiotic, but since he just happens to be suffering from a bed sore right now, he has a visiting nurse once a week who I can ensnare to do my dirty work.

“Hello, Visiting Nurse? I want to ensnare you to do my dirty work,” Okay I really don’t say that.

“Hello, Visiting Nurse? I got a call from the caregivers and they think his behavior and his urine suggest a UTI. I would be ever so grateful if you would call his doctor for a prescription because it’s Friday, I can’t get him to the doctor for at least three days, and if it gets too far gone, he usually ends up in the hospital.”

“Ok,” says the Visiting Nurse, “I will call this morning and get back to you.”

By 4 o’clock, I haven’t heard from anyone. So I call the pharmacist to see if there is a prescription waiting. No, of course not. So I call the doctor’s office.

“Hi, I’m call because I know the Visiting Nurse called and the pharmacy  has no prescription.”

“Yes, we see that the Visiting Nurse called this morning, and it’s in the doctor’s inbox to process.”

“I understand that the doctor is busy,”I say patiently (really  I do) but it’s Friday afternoon, and these UTI’s can be very dangerous for this guy….so if you could just see if he can get it processed tonight……”

“I’ll put a reminder on it,” says the receptionist.

So, of course, at 8:30 that night the Visiting Nurse calls to tell me they called in a prescription, with the caveat that the nurse would take a urine sample and have it to the lab BEFORE we give him the medicine, just to make sure.

So she gets the sample (that’s it’s own blog, I’m sure). I get the meds into him the next morning, and two days later they call and tell me the sample is negative.

And here’s where I’m naughty.

Years ago, when my kids were toddlers, they would suffer from chronic ear infections. I would see it coming, take them to the pediatrician, no red ears would appear in the otoscope, and the pediatrician would send me home. A day or two later, I would be right back in that office with a kid with DOUBLE ear infections, because the symptoms were obvious to me, but not yet to the otoscope. And pretty much, every time, Dr. MOM was right.

Soooooo………I just kept on giving that antibiotic to my brother-in-law since his symptoms were so obvious to all of us caregivers, he gets really, really, REALLY sick if he gets an untreated UTI, and I just was willing to go for it. I am the decider.

I know. I know. Too many antibiotics, too must MERSA, too many super bugs. I know.

But here’s the kicker. THREE DAYS LATER, the doctors office calls me and says.

“Well, you know the test was negative for an infection, but all the other markers were questionable, and so we thought an infection was on the horizon, so just finish the antibiotic as given.

Yup, DR. MOM!!!!

You just have to Laugh……..

Cathy Sikorski

About that Invitation……

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

Okay, I know you think you are doing a kind and generous thing by inviting my wonderful disabled L to your event. But here’s the thing, you are more than willing to put out that invitation and I will even go so far as to say, that you are doing it with the most generous of hearts and spirit. You know that this person you love is severely disabled, but you want to include them to show your love and acceptance. But the truth of the matter is, you really give very little thought to what an invitation means to the caregiver.

It is not for one minute that the caregiver does not want their charge included. It is extremely unlikely that the caregiver does not love this person as much, if not more than you do.After all, they are the caregiver.  But, but, but…….really…….what will this invitation entail? Will the caregiver need to acquire appropriate clothing so as not to embarrass you or the loved one on this special occasion of yours? Will the loved one’s schedule of care, bathing, medicine, toileting, assistance for dressing, undressing, getting out of bed, getting into bed, eating, drinking or sleeping work with your event? Have you considered in any way, how will my loved one get there? Does it require special transport? Who will make that happen? Who will pay for that? Have I tried to put any of that into place, or am I just sending out this invitation?  Am I also inviting the caregiver? So do THEY have time to get ready, get their loved one ready, get to your event? Is the event the appropriate venue for my disabled loved one? Will they be able to stay for any length of time? Will the caregiver just barely get there and then have to leave because the venue doesn’t work, there aren’t appropriate toilet facilities. it’s too hot, it’s too cold, there’s no food for them?????? And that, my friends, is the short list.

You see what I mean? In your zeal to be inclusive and loving, you may, in fact, be setting up the caregiver for an over-the-top horror show. And often, the caregiver loves you too and doesn’t want to disappoint you OR the person they so desperately CARE for. And more often than not, the one who is being cared for, wants to go. Of course they do. They want to get out. They want to engage with old friends and family.They also do not really want to consider the ups and downs of turning down an invitation. Likely because, all those kind and well meaning people who have sent out the invitation, never or hardly ever make the effort to come see or spend time with the disabled loved one. Life is busy, life is hard…..I know…..I’ll invite them to our special party!!!! That way we can see them, spend time with them and (God forgive me, feel less guilty, perhaps?)

Are you really thinking this through? Could you possibly change that invite to a special birthday, wedding, anniversary or graduation, to a special visit where you go see your disabled loved one. Take them a special meal, take them out for dinner, take a load off the caregiver.

Perhaps it’s not an invitation that is so welcome, as much as it is a two-by-four upside the head that says, “Duh…..maybe I have a better idea…..”

Cathy Sikorski