Category Archives: Multiple Sclerosis

I knew there was a reason I didn’t go to nursing school

Caregivers, Humor, Multiple Sclerosis, Uncategorized, , ,

   Sometimes, I just feel compelled to tell a tale because you just want to share with the world the things you discuss on the phone, that you NEVER thought would be a part of your lexicon.

I have had a few difficult weeks, but during that time, brother-in-law, L, with multiple sclerosis has been magnificent. Last year was very difficult for him, he had a myriad of health issues and he was in a rehab center/nursing home for a few months. It was pretty awful. But we were able to get him back home. Get him on his feet (figuratively not literally) and through a lot of medical care, ultimately put him in a pretty good place. He has these AMAZING caregivers who come every day to get him up and dressed, in his wheelchair, and then at night get him ready for and into bed. His MS prevents him from walking or standing any more, but he gets around like a champ in his electric wheel chair, and goes to meals, plays poker and smokes a pack a day out in the beautiful sunshine every day.

He has been SO good for the last year…..that on some level, I’m just waiting for “the other shoe to drop”. But his attitude is positive (for a curmudgeon, which is what he’s ALWAYS been) and he is truly adored by his caregivers. He’s even gotten a fish tank from his son, and watches the fishees like they’re his new best friends.

I am so very, very grateful that he has been well and happy for the last year. And I pray every day  for just another ordinary day. So today my phone rings and it’s not a number I recognize. I always answer those numbers in case it’s about anyone I’m caring for. Most of the time, it’s a robocall. But this one went like this:

“Hello?”

“Hello, Cathy?”

“Yes, this is me.”

“This is Mrs. W, a nurse from the facility where your brother-in-law lives.”

NOOOOOOOOOOOOOOOOOOOOOOOO, I’m thinking.

“Uh-oh,” I say, “anything up?”

“Oh no, everything is fine, it’s really ok, no worries.”

YEAAAAAAAAAAAAAAAAAAAAA,I’m thinking, but I’m suspicious. Nurses don’t call for no reason.

“I just wanted you to know that we were called by the caregivers because L had an open sore and they wanted us to look at it and treat it if necessary.”

“Oh, yes,” I say relieved, “I know about that, they asked me to get some derma-patches for the area. Are they not working?”

“Well, the patches he had were not staying on, but I got some ‘industrial strength’ ones and they seem to be staying on, so we will probably be able to get this sore to heal. We don’t want it to get too bad, or then he would need to go to the doctor or hospital.”

“Oh yes, of course, ” I say. And now I am almost giddy with relief that it is not anything serious and these great people are on top of it.

“So, just so you know, the area is a bit pink with a little clear injury showing. It is located between his anus and his scrotum, so it’s hard to keep the patch there, and we may have to work on keeping that there without peeling off, just to make sure we have significant healing time.

I’m now thinking…..well, I don’t have a scrotum, but ‘industrial strength’ patches  there probably really hurts.

I say:

“Ummmm, okay. Well is there anything else I need to know or do?” (Please God, say ‘no’)

“Oh, no just keep an eye on it and I think he’ll be fine,” says this fantastic nurse.”

“Ummm, okay,” I say. But I’m thinking…yeah I’m not keeping an eye on that….ever.

You just have to laugh………

Cathy Sikorski

Cleanliness is next to Godliness…..

Caregivers, Humor, Multiple Sclerosis, , , ,

 As of yesterday, I have officially showered with the following elders:

1. My Grandmother

2. My Mother-in-law

3. My Mother

4. My Aussie Aunt

And for several years, when I would go to take care of my brother-in-law, we would refer to him as “Naked L”. Because that was how it would be.

 

 

You just have to laugh…….

Cathy Sikorski

Trick or Treat…Mother Nature’s Halloween joke.

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

One beautiful crimson and golden day in October, and I mean beautiful, I was required to go on a ‘shopping spree’ for a rehab center for my brother-in-law, “L.”  He was recently hospitalized and needed a few weeks or months to get his strength back, so he could return home. The first place they sent him was too challenging, and they basically kicked him out for not trying hard enough to get better. Who am I to judge? The guy has MS, and he knows what it means to exercise or not exercise, the choice is his. But they said, “nope, you’re not trying hard enough and it ruins our success rate.” Well, ok they didn’t say the last part, but we all know that’s what’s going on.

So I had to find a new place and quickly, because he would be booted in a day or two at the most. My Mom and I spent a very long day looking at five different facilities, trying hard to stay with in a 10 to 20 mile radius, so that I could be there on a regular basis to check on him and make sure he was not being neglected.

O my God, what horrific nightmares are out there. The first place was in this absolutely gorgeous, wooded, bucolic setting. And every resident was passed out, drooling, and not engaged in anyway. AND THAT WAS IN THE LOBBY!  The staff was setting up for a Halloween party, and the decorations were as shabby and pathetic as the lobby. The next place, it smelled….and not good.  The next two places were over-crowded, had teeny, tiny therapy rooms and were dirty. O mon Dieu! Je ne sais quoi! Yes, I was thinking in French because I couldn’t even process this in my native tongue.  Finally, we get to the fifth place, and it is okay. And I really mean just okay. I would like it to be cleaner. I would like to hear less commotion in the hallways, with residents who are clearly distressed. I would like there to be more visible staff. But the therapy facility is enormous, the therapists seem very knowledgeable and have specific tools for dealing with MS patients. And there are some younger men here. L gets a private room because there are so few men in rehab. So all in all, we’ll take it. I’m running out of time, I’m exhausted, and I have seen the worst so “okay” will suffice for now. If I need to keep looking, I will, but it’s just temporary and even though it’s the furthest from home, I will come every day in the beginning, to make sure he is properly cared for.

We take hours to complete all the paperwork to get him in there tomorrow. Ugh….me and my Mom are pooped. This is how I thank  her:

“Don’t you dare go to the hospital tonight. I don’t care that you are perfectly healthy.  If anything happens to you, don’t call me. Call your brother, call all of your other five children or any of their offspring, But I cannot deal with one more hospital, medical team, or medical issue for at least three days.”

Mom just laughs at me. She’s perfectly fine and there’s no reason to think otherwise.

The next day, Saturday, I go out to run a few errands, and it begins to snow. ON OCTOBER 29th, WE HAVE A FULL BLOWN BLIZZARD. Now normally, that wouldn’t be so crazy to have snow in October. But we have so much snow and the trees have not yet lost all their leaves. Trees begin to bough and cover everything, and break power lines and hearts with their cruel, beautiful snow-covered, orange and gold autumnal CRAP. I live in the woods. I can’t get down my driveway, until I call my husband who says: “Shake the trees, Cath, the snow will fall off.” (he’s like a genius)

AND THEN, AND THEN, AND THEN, the phone rings.

“Hi, this is Grandma’s assisted living place.” (of course they don’t say that, but you get the idea)

No big deal, I think, they always call me for Depends, or toothpaste, or nicely scented body wash. HA! Nice try.

“Um, your mother fell and is being ambulanced to the hospital 20 miles away (in a blizzard) because she may have hit her head and that’s the only head trauma unit.”

“Ok,” I say weakly, because I forgot to tell my 93 year-old mother-in-law not to dare go to the hospital today.

My husband comes home, and off we go, in the blizzard to the hospital. She did indeed break her hip and will have surgery(and then I will have to find a rehab for her).  Five hours later, we slowly drive home on snow-covered roads, reach our driveway, which now has broken snow-covered trees all over the place. We park in the street, walk gingerly through the snowy trees, and least you think this is some Robert Frost romantic moment,we find out we have no electricity and no heat.

You just have to laugh…..

Cathy Sikorski

I am ready for my close up, Mr. DeMille

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

You probably have noticed that whenever you go to the doctor now you must have a photo ID. And said photo ID must be valid and up to date, especially if you are a Medicare patient. So don’t even THINK that  you are going to pass muster if you have that dirty old expired driver’s license, a left over ID on an old ratty lanyard from two jobs ago, where there was actual security or that expired passport that you haven’t used in 20 years because you’re now 85 years old.

So this can be a dilemma for the old, infirm or disabled. Here is the story of my brother-in-law, “L”, who continues to be and will forever be wheel-chair bound with Multiple Sclerosis.  This photo ID requirement is fairly new. I remember going to L’s house, struggling to get him down the stairs, into an electric wheel chair in the basement, into his manual wheel chair and out to the car for a doctor’s appointment. And I remember the first time they asked for a photo ID. Now, he didn’t drive to the appointment, and for some reason we forgot his wallet, so there we were, high and dry. But since it was the first time they asked for photo ID, and he had been a patient there for FIFTEEN YEARS, they were willing to wait for his next visit to keep a copy of his lovely face. It was probably because he also was not on Medicare at the time and so they wouldn’t get in any trouble for not recognizing a patient from a decade and a half and requiring that pesky photo.

Okay, so lesson learned. Now, for the past five years or so, I always take that photo ID. But about two years ago, I noticed that his ID, which is his driver’s license, was about to expire. L doesn’t drive anymore. He can’t. He would be a menace to society, and he took that driving privilege pretty darn far. But, and thank God, they still send him a driver’s license. I was perfectly willing to get him a ‘government issued ID’, until I discovered the requirements. In order to get this ID, he would relinquish his driver’s license and apply for the ID, but he must show an electric bill, or a rental agreement, or a deed, to show his valid address. Never mind the fact that his valid address is on the driver’s license which they gladly give him without any of those requirements. L is in a facility. He doesn’t pay an electric bill, he doesn’t really have a rental agreement and he only has an apartment number within the facility for his mailbox. So I asked myself: “Is it easier to go through this craziness for an ID, and perhaps be left without one, OR is it easier to just go get his picture taken and keep the damn driver’s license?”( Since no one is saying he can’t drive and/or even asking if he does drive).

Well, of course, I will just take him to the photo center, wheel him right up to the camera, and SNAP, we’re done. NOT SO FAST, CRAZY CAREGIVER. Now that he is wheelchair bound, and I truly can’t lift him or  help him in and out of a car, I have ordered wheelchair transport for him for all of his appointments. He has to pay for this because Medicare won’t pay for  you to go to the doctor. They will only pay for you to go in an ambulance (and even that is suspect…see my blog ‘DO YOU REALLY NEED AND AMBULANCE….I THINK NOT posted 06/28/2013). So you see you can’t keep yourself from getting sick, or take good medical care of  yourself. Insurance just wants you to get really, really, really sick and THEN you can go to the doctor.

So we pay for transport. Okay, fine. I call the transport company:

“Hello? I need a transport.”

“Okay, to where?”

” I need to transport L (they know L, he’s a regular like on Cheers!) to the driver’s license photo center, so he can get his photo ID.”

“Oh, sorry, no we can’t do that,”

” What? What do you mean you can’t do that?”

” We can only transport him to any medical facility or for any  medical necessity. Our insurance does not permit us to transport for any willy-nilly reason.”

“Hmmm,” I say as I restrain myself from ripping out a hunk of my hair,” but we pay privately. WE PAY EVERY PENNY FOR HIS TRANSPORT. OUR INSURANCE WON’T PAY YOU.”

“Yes, I know, I understand what you mean, but I’m talking about our liability insurance. We can only transport for medical reasons. We are an ambulance company.”

“Ok, fine. Do you know any transport company that is NOT an ambulance company that will transport L for reasons that do not appear medical?”

“Ummm, no sorry.”

“Really? You’re in the transport business and you don’t know anyone else who can help us?’

“Nope.”

“Well, thanks, that’s just swell.”

So I suppose the alternative one…the ‘government issued ID’ is the way I have to go, or he won’t be allowed to go to any doctors or hospitals.  I just have to figure out how to meet their requirements to show  his valid address. I want to scream… wait, I think I am screaming and no one hears it. AND THEN THE GOOD SAMARITAN ARRIVES.

L and I had an appointment the next day with the ambulance company for a LEGIT doctor’s appointment. I couldn’t help myself. I lamented to the driver that I couldn’t get L to the photo center, and it was kind of a medical necessity because he needed that ID to get treatment anywhere. So after the doctor’s appointment, we made a quick stop at the photo center, rolled right in there where no one was waiting. SNAP! took the adorable photo of L…and we’re good to go for another four years. Can’t wait to see how I tackle this one the next time around…..O SNAP! Thank you good Samaritan.

You just have to laugh…….

Cathy Sikorski

Hi Ho Hi Ho, it’s off to the pharmacy we go…..

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

Normally my time would be spent talking about my elder care experiences and the craziness that is insurance, clothing, finances, people, food, and anything else in an ‘ordinary’ day.  But caregiving, as I continue to find out, runs the gamut across all ages and time…for the caregiver, that is.

Yesterday, my 21 year-old daughter woke up with a pain in her eye.

“Mom, what does a scratched cornea feel like?”

“Well,” I said, “let me put it this way. I would rather go into labor 10 times with 10 babies 10 days in a row, than EVER have to feel a scratched cornea again.”

“Well, my eye hurts every time I close it, so I think I might have that.”

Since she wasn’t writhing on the ground in pain, screaming for an emergency room or an epidural, even though not pregnant, I was pretty sure it wasn’t a scratched cornea. But since she was leaving for college in 4 days, and I didn’t want to drive 5 hours in 5 days when she called me writhing in pain, I decided we should see if the eye doctor could squeeze us in. Of course, as with every one of my emergencies…this was a FRIDAY, so if not taken care of today, we would be in the emergency room tomorrow. Good, or tired, or worn-down caregivers learn to hate Friday NOT Monday.

After a thorough eye exam, the doctor tells us she has GPC. Weirdly, that’s a new one on me. I was pretty sure I could sit for a Medical Boards Exam by now. It’s a form of conjunctivitis that is not contagious, but must be medicated 5 times a day, then 4 times a day, etc. for a month. And you really should wear your glasses not your contacts because the medicine has to be put in without contact lenses in your eyes for at least 15 minutes each time. Well, you might as well have told this 21 year-old college girl to get a Cyclops eye, a Freddy Kruger mask and a mermaid tail to wear back to college. She does NOT have time for ugliness or inconvenience. Tough s***t, says mummy.

Now, before we even leave for the two prescriptions she must get in her EYES (yup, it’s in both eyes, the other done just didn’t hurt yet), we beg the eye doctor to send in our claim to insurance. We don’t have vision coverage, but this is a medical problem. So we will see. I know if I had taken her to the emergency room or the regular doctor, this would be covered. Call me crazy, but my doctor does not have all those zippity-do-dah eye machines to look into my daughter’s eyes and see what’s going on there.  And I asked the doctor if we could see it ourselves, and she said, “not unless you have a microscope.” So I will keep you good readers informed about THAT insurance result. Can hardly wait.

After we leave, we need to go see “L” my brother-in-law who has MS and I care for, which, was the ONLY thing I had to do today. HAHAHA. But first I need to stop and get him a few things on his list. I need to call his caregivers to give me an extra hour tomorrow to dress him for a family party. I need to call my sister, who is picking him up. And, when I finally get to see him, I find that we need to change his password for his retirement fund and BTW his computer has crashed.

SO THEN, I finally get to the pharmacy, where, coincidentally they know me by sight, don’t even ask for my name and go right for the drugs that have been ordered for me or any family member.

“Sorry, Cathy” says Rich (yea me and the pharmy are on a first name basis), but I only have one of your scripts.”

He sees my face fall…because remember, the college girl is going back to far, far away college in 4 days.

“BUT,” he quickly adds, cause he has also seen me melt down on just such occasions as this before….because there have been MANY of them, ” you can go to the pharmacy down the road and I’ve already put your order in there, where it’s been filled.”

“Yay!, and thanks,” I say, so kindly and enthusiastic.

I drive the extra 20 minutes, go into the NEXT pharmacy, and enter a fiasco with another poor customer whose insurance company randomly cancels her son’s much  needed insurance every  90 days. I feel so bad I want to pay the $70 for her medicine and I think I would have, but the pharmacist assures her she will be reimbursed, if she just pays for it now and comes back after a few phone calls. (More like 927 phone calls in  my experience).

AND FINALLY WE GET THE MEDICINE AND IT’S ONLY THREE HOURS OUT OF MY DAY!

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

How to ask for help

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

I haven’t really mastered the fine art of asking for help, which is probably why so many people keep ASKING ME FOR HELP.  After a luscious week of time with my daughters both home from far away, and lots of time with visiting family over the 4th of July holiday, I was pleasantly exhausted and ready for the messy structure of my life. My 90  year old Aunt came to stay with us while all the family was here, and my sainted 84 year-old mother kept Aunt J at her house until I had more room. During that time Aunt J developed an indeterminate pain to go along with the continuing pain from her shingles that I discovered on her last visit three months ago. Ultimately, my Mom determined that a walker was in order, and it seems to have done the trick to keep Aunt J upright, balanced, and less whiney(also wine seems to help). We did a mani-pedi day for all the ladies as a treat, and now I pay the price. This morning, as I try to get back to work, laundry, phone calls, grocery shopping, appointment-making, etc., Aunt J comes downstairs with a finger the size of a sausage. WHAT??? The only thing we can think of is that she got nicked at the salon and has an infection. She was treating it herself, apparently, with Band-Aids and Neosporin. So off to the clinic we go, the walker, the Aunt, and the sausage finger. The very sweet doctor(who happened to be the shingles doctor as well) lances her finger, squeezes out all “the badness” as Aunt J calls it, and puts on a Band-Aid and Neosporin and gives us a prescription for antibiotics. But wait my cell phone is ringing and the number is eerily familiar……

“Hello?”

“Cathy?”

“Yes?”

“This is your brother-in-law’s caregiver. We are pretty sure he has a urinary tract infection”,

Yup…. you just gotta laugh.

Please for crying out loud just do your job!

Caregivers, Humor, Multiple Sclerosis,

I am the caregiver for my surrogate brother-in-law, my friend who fell down a flight of stairs and has brain damage, and until she passed away in March, my blessed mother-in-law who was almost 97 years old. O yeah, and on occasion my husband’s adorable Aunt from Australia who goes back and forth between our house and other wonderful, caring relatives.

I have been caregiving for a very long time for various loved (and unloved) ones and ultimately turned my part-time law practice into Elder Care only so that I could help those with all that I have learned….mostly outside of the law, if you can believe it.

But I find the art and act of caregiving hard and hilarious. You just have to keep your sense of humor to keep going back day after day. I have a million stories as do all the other caregivers in this world, And hopefully, we can all help one another with information and an occasional laugh.

So today I have to take my brother-in-law( hereinafter referred to as “L” )to the doctor. Actually, I will just make sure he gets on the transport safely and then drive to the doctor and meet them there. He has MS and no use of his legs. This endeavor requires a lot of planning, phone calls, referrals and big huge posted notes on L’s TV stand because he often forgets what’s happening that day. It has to be between lunch and dinner or he misses his meal in the dining room. And, although we joke that he could STAND to miss a meal, he gets very cranky if he does. So three days before the appointment, with everything in place, I get a call from the Doctor’s office :

“Hello, this is the Doctor’s office, call us back immediately”

Oh crap, I think, they are going to cancel and that is a nightmare to unscheduled and RE-schedule everything. I’ll try and call back ASAP between my job, my own appointments and just general living.

“Hello?” I say, this is Cathy returning your call about L”.

“Why are you calling?” says the Doctor’s office.

“Because you told me to”.

“Oh, ok wait just a minute please.”

Holding, holding, holding, holding…I could have cleaned my entire kitchen by now.

“Oh yes, well was he here last week?”

“No”, I say, “he is coming in on Thursday”.

“Well, it’s been THREE OR FOUR MONTHS AND HE MUST SEE THE DOCTOR EVERY THREE OR FOUR MONTHS!” ,she says to me very briskly.

“Ummm, ok? Well, like I just told you, he will BE THERE ON THURSDAY!”

“O, Ok, thank you”. She says and hangs up.

Really? You didn’t see that on your computer? You had to take precious time out of my day to yell at me and then just say ok???? Really, before you called me you couldn’t check to see if he had an appointment in THREE DAYS?????/

Please for crying out loud SOMEBODY, just do your job.