Saturday, October 6, 2018

CAREGIVING 101

Haven't been here in awhile.  It's been a crazy couple of months.  I'm spending a lot of time with my Dad lately.  He's rebounded somewhat, but needs help getting out of bed, dressed, and undressed and back into bed at night.  I'm there daily (sometimes 2 or 3 times a day).  Thankfully, he's only five minutes away.

I needed a little motivation to get back on here.  My Dad was part of that motivation, and the other was my friend JaVonna (Layfield-UD Basketball?)  I got a message from her the other day - she was just checking in.   She's playing in Portugal now.  (That just amazes me.  I'm on a cell phone and we are talking like we are sitting next to each other.  I will NEVER understand this.)  Anyway, we talked a little about Melissa, a little about basketball.  I reminded her that if she gets bored (which she must have been because she messaged ME) she could always read the blog.  She said "I read the blog all the time!! But please!!! I need some more."  So here I am JaVonna.  This post is for you.  Kind of.  Actually it won't be very helpful for you right now, maybe in the future.  But YOU motivated me to get on here again, and I thank you for that!

OH.  And before I get on to CAREGIVING 101, I want to share this.  JaVonna got a tattoo right before she left for Portugal to play basketball.  She messaged me a couple of weeks before she had it done and told me what she was going to do.  I'm pretty sure I knew why she chose B POSITIVE to be part of the tattoo - I asked her what the significance of the sunflower was.  "The sunflower is a sign of positivity and perseverance.  No matter the weather-or what it endures, it always shines brightly and it's always standing."  She's a smart girl.  I'm sure it's not easy moving to a different country by yourself.  She needs to stay positive.  B POSITIVE.  Wish I could go see her play.  Will miss her on the court at UD this year!  Thanks JaVonna!!!!



I have been thinking about posting about this for a while now.  I have been Dad's primary caregiver for the last five years.  And WOW have I learned a lot.  One thing I learned when I was Melissa's caregiver was I had a LOT to learn.  And I learned from other people who were caregivers.  So I thought I'd share some of that insight.  

What I have found is that all I have to do is mention that I'm taking care of my elderly father and inevitably, if I'm talking to someone remotely close to my age, they are taking care of a parent too.

This post might not be for you right now.  But it might not hurt to scroll through - might help you in the future if your parents are still young and healthy.  

PRIMARY CAREGIVERS
I am not a professional caregiver-I don't get paid for what I do.  But I am an EXPERT.  I have been doing this for 40 years.  Starting with the birth of my first child, Melissa Marie.  I was 20 years old and had no idea what I was doing.  I learned the hard way (like ALL moms do) by trial and error.  By the time Nick was born, I knew enough that I didn't have to make as many calls to my mom or my mother in law.  They were the professionals back then.  I didn't know that THEN, but I know now that experience counts.  

My biggest test was when Melissa was diagnosed with Breast Cancer.  She was living with John at the time, and he was her primary support person, but she called me a lot, and eventually I became her primary caregiving (outside the doctors).  I made the mistake of going to the internet for information. A good friend at the time (Deb R) advised me NOT to go to the internet....TOO LATE.  I was already full of information that I didn't understand and scared me to death.  Another friend (Pam B) introduced me to a friend of hers who was the Breast Care Coordinator for South Dayton.    
(Sharon - I think she's retired now).  She gave me her home phone, cell phone, pager, email address, and assured me that she would answer any questions I had, and if she couldn't answer them, she would get the answer!  She was such a valuable resource for both of us.

After Melissa, my next big caregiving job was my Dad.  That is what this post is primarily about - caregiving for an elderly parent.  That's where I am now.  And today, right now, I am totally overwhelmed.  If you know me at all, you know that I keep journals - and I write a lot.  It's cathartic for me.  So instead of dwelling on my anxiety right now, I decided to share some of the things I learned on this journey.  Helping others helps ME.  So here we go......


CAREGIVING 101
I started this journey with my Dad about five years ago.  He was living in Florida part-time, a snowbird.  Until my sister Sue passed away.  Then he decided he didn't want to come back to Dayton any more.  Everything was good.  He had a lot of friends in Melbourne-at the VFW, the local bowling alley bar.  He loved to sing Karaoke, and have a few beers.  He was very social.
Then he started falling.  Six times in three months.  The last time he fell, I got a call from his handyman, Brett, who Dad would call if something happened.  This particular time Brett couldn't get there.  So he called me.  In Kettering, OH.  "Your Dad fell and I can't get there".  I was thankful for the call but had NO idea how to handle the situation.  But I had to.  So I call 9-1-1.  Told them what was going on and they connected me with the Fire Department in Melbourne, Fl.  I asked them to make sure Dad took his phone when (if) they took him to the hospital.  Which they did.  I was able to keep in touch with him since there was no phone available in ER.  Then I made reservations to fly to Florida.  It was my sixth trip in 3 months.  (Drove a couple of times, flew a couple of times). 
This time would be different.  

While he was in the hospital, I talked to the Social Worker.  The doctor was planning on sending Dad home at the end of the week.  I reminded the SW that Dad had fallen SIX times in 3 months and something was going on that they hadn't figured out!  He needed to go to Rehab to get stronger before he went home and I went home.  It was then that the SW informed me that in order for Medicare to pay for rehab (at a facility), he would need to be admitted for 3 nights.  I didn't know this at the time, but when you are in the hospital, you are "Under Observation" until they decide to admit you.  You can be under observation for more than a night.  She agreed that he needed to be admitted as an inpatient and that he would be there for 3 nights until he could go to rehab.  She gave me the names of some Rehab facilities to visit (unannounced - the best way to visit.  They don't know you're coming.  You get to see how the patients interact, if it's clean etc.)  I finally chose the facility closest to the hospital-since I was in from out of town, I knew how to get there and it passed my inspection!)

While he was in the hospital, the Social Worker also talked to me about his living arrangements.  She told me he could no longer live alone.  It was then that she referred me to an organization called Care Patrol.  They help you find assisted living facilities.  Rob Graham was my contact person.  He was amazing.  

Mind you, this all happened in two weeks time.  I called Rob, he needed a LOT of information about Dad.  Financial and otherwise.  He wanted to meet Dad.  Assisted Living facilities are all different.  He wanted to find a perfect fit for Dad.    Problem was, I hadn't told Dad yet that he couldn't live alone any more.

CHOICES
This is where CHOICES comes in.  Dad wasn't ready to move out of his place in Florida.  But he couldn't be alone any more.    He wasn't ready to give up his independence either.    I had to make him understand that it just wasn't safe for him to be alone any more.  So he had a choice to make.  Come back to Ohio, or stay in Florida.    He had to be part of the decision.  I couldn't make the choice FOR him,  but I could give him his choices!

SAFETY/HAPPINESS
Your top priority when you are the primary caregiver is SAFETY first, then their happiness.  There are a lot of ways to keep them safe.  Being alone 24/7 unfortunately is not one of them.  There are a lot of good Home Health Care services available.  I found a good one (again, referred by SW).  While he was still at home after one of his first hospital visits- they were coming 3 hours/day.  Then 6 hours a day - 3 hours in the morning/3 hours in the evening.  They were good, and he didn't mind them coming in, but eventually he needed more care, and home health care can be VERY expensive.  

Another safety issue is driving.  Fortunately for me, when Dad was released from the hospital to Rehab, the doctor would not release him to drive.  He was in rehab for a month - but I knew that I was going to have to take his keys.  He was an aggressive driver and his social life was going to the VFW and Bowling alley, having a couple of beers.  He hadn't been in an accident, but I wasn't going to wait until he WAS in an accident.  I couldn't take the chance that he would hurt someone.  I talked to him about that, and of course his response was "I would never hurt anyone"....
It was a difficult decision, but besides the safety issues, he couldn't afford a car payment, car insurance AND Assisted Living.  So I took his keys AND his car - back to Ohio.  It took him awhile, but he finally accepted the fact that he wouldn't drive again.

You have a lot of difficult decisions to make as a caregiver.  There aren't too many easy ones.  

As far as keeping your loved one happy, there's not a lot you can do.    They have to be part of that too.  You can only do so much.  


ADVOCATE
You are your loved ones advocate.  You need to make phone calls, ask questions, make decisions.  Be informed.  Don't be afraid to ask questions.  The squeaky wheel gets the grease.  

DOCUMENT DOCUMENT DOCUMENT
Can't say this enough.  One of the first things I did with Melissa was buy a spiral notebook (I bought the small ones that I could keep in my purse) Take notes at every Doctors appointment.  I use the notebooks to write phone numbers, appointments, comments.  Questions I want to ask so I didn't (don't) forget.  I have a Composition notebook I use for everything for my Dad.  The reason I recommend this is I KNOW where I can find what I wrote down.  It's not in any particular order (chronological ) but I had to stop writing on pieces of paper that I had in my purse.  I lose things too easily when there is a lot going on.  (Now if you are a tech person- you might want to do a spreadsheet - Donny is getting all his mom's stuff together now and put it on a spreadsheet.  Whoopty doo.  It works for him.  Mine is all scribbled in a notebook and I can find what I need.  WHATEVER works for you.  Just keep it all in one place.  
Keep track of the all the time you are spending too.  You might need that later.


LEGAL/FINANCIAL 
Since we don't know when we are going to die, it's kind of hard to know when is a good time to start getting things in order.  If your parents are retired, it's time.  
I have decided that I'm going to make it easy on Nick.  I already have a binder with all the information he will need when the time time comes.  He won't be searching through drawers/closets/under beds/file cabinets for information.  Although you find a lot of interesting things while your doing that.  Like pictures.  UGH.  So many pictures.  So little time.  (we do have our pictures organized - thank you Donny - not in boxes.  Nick will more than likely throw most of them away.  That's ok.  I won't be here.)

Back to Legal/Financial - if your parents (or you) are retired, it's time to start getting organized.
Donny is doing this with his mom now - it's a full time job!  But getting it done early takes the pressure off if something happens.

Some of the things you should think about (I did all this in two weeks while my Dad was in rehab) - Financial/Medical Power of Attorney
A Will
DNR
Finances
If your parent served in the Military during wartime, they might qualify for VA Aide and Assistance. If you are interested in a number you can call to find out - message me.  There are financial parameters, but it's worth looking into!  Spouses may qualify as well.  Every little bit helps.


PROFESSIONAL HELP/ADVICE
Don't hesitate to ask for advice or help if you need it.  I would not (could not) have gotten everything in order with my Dad without the help of some professionals.  Doctors, social workers, friends who have been there.  You can't do this alone.  It is overwhelming, but it can be done.


SUPPORT GROUPS
Ah.  Support groups.  Never in my life would I have thought I would need a support group.  I am in multiple groups now.  It's how I've survived.

You don't have to go to an "organized" support group.  Start your own.  When Dad first went into assisted living I was talking to a friend who was taking care of her Dad.  I was a little ahead of her - my dad was already in AL - her dad was headed there.  Then I was talking to another friend (my girlfriends from grade school-who I have reconnected with) who is taking care of her 98 year old mom.  We started going to breakfast on Saturday mornings - a place that had a Bloody Mary bar.  Not that a recommend drinking, but it helped us.  We talked about how we were handling different situations, how we were feeling - and we talked about a lot of other things.  But it was good to sit down with someone who understood!  Unfortunately, we haven't gotten together in awhile. Our parents are all at the stage where they are requiring a lot more time, so we haven't been able to get together.  I miss that.  I NEED that.  

Just yesterday I had coffee with a good friend whose mom is getting ready to move into assisted living.  There are a LOT of us out there.  We find each other!!!   


THANK YOU'S
I would be remiss if I didn't mention the Professional Caregivers.  (I am a volunteer caregiver).
The professionals are the ones who come into your parents/loved ones homes.  They are the ones that take care of them at the facilities.  The nurses (I wish I could name all the nurses that have taken care of Dad - YOU ARE ALL WONDERFUL!!!!! and Nurses Aides (YOU DO THE THINGS THAT I CAN'T DO!!!!! The people who greet you at the door.  The people who work in the dining room.  The Activities directors.  The handymen.  I can't thank them enough.  At Victoria Landing in Melbourne - I wasn't there to visit Dad like I can here.  You all made sure he was loved when I couldn't be there. 
And now, at Traditions, I'm with some of you when you are with Dad.  You love him like I do.
I know he is taken care of and I can't tell you enough how much I appreciate all of you!!!!
(He might not show it, but he appreciates you too.  I wish he would use his button more!)


Take care of YOU!!!!!
And last but not least, take care of YOU.  That is the hardest thing for a caregiver.  In my honest opinion.  Some days I feel like I am not doing enough.  I want him to live forever.

But I also realize if I don't take care of myself, I won't be here to take care of him.

I wrote this blog post on my four mile walk this morning (in my head).  I don't know if I remembered every I wanted to say - but most of it is here.

Take a walk, get a hobby.  Have lunch with a friend.  Write in a journal.  Hell.  Even go on a vacation.
Sometimes it's hard to get away.  But you have to.  You could go insane trying to do everything.

If you are one of the fortunate ones to have siblings that help, TAKE THAT HELP.  If your siblings live out of town, find something they can do to help.  A Power of Attorney does not have to live in town (Financial) - I have a couple of friends who take care of their parents affairs and they don't live in town.

If your siblings live in town, ASK THEM to help.  A visit a couple of times a week is lifesaving. Literally.

You are not alone.  There are a lot of us out there.  

If you are a caregiver and have some advice, please post here.  I'm sure I missed something.  If I did and I remember, I'll be back.

In the meantime - Enjoy the good days!  

OH.  And B POSITIVE.


















Tuesday, July 31, 2018

Happiness Comes in Waves

If you get bored with pictures, you might want to skip this post.

We've had an incredibly busy month.  After the month of May, when I was really struggling, I needed to keep busy.  July took care of that!

We started the month with a vacation with Nick, Mere, Andrew and Max.  Our second consecutive family vacation.  Marco Island.  We stayed in a condo owned by one of Melissa's best friends...and we all got along - for an entire week!

First day walk on the beach.  Donny and I continued the walks, early in the morning every day. We're retired - they were on vacation!  We all did whatever made us happy!

My boys...Max, Andrew, Nick, Donny

Nick, Max, Mere, Andrew

Dinner out.  Mexican, my favorite.

And ice cream to follow.

Max wanted to be the Statue of Liberty.

I bought them each something to take home.  Max wanted a Pug.  This is the best kind to have!

Andrew.  Take the "L"

Sunset


Two of my favorite people!

Stacy and Casey took us to their favorite place - a (semi) private beach.


Max andMia

Andrew


Our own little beach!


The girls 


Happy Hour

Fourth of July on the beach.  Packed that day!





Casey, Nick, Mere, Stacy


Andrew teaching the girls how to dive (he just learned that morning!)

Max playing frisby with Joseph.

Max, Andrew, Mia, Emma

Max and Joseph.  Joseph is autistic.  He was with his family from Miami.  Max and Joseph made a connection.  Max was so compassionate.  I was so proud of him.

Another sunset.


Cathy, Tony, Emma and Mia, our new friends from Canada.

Family photo 

Of course Fort was there...

Last night on the beach.

We had a great time in Marco Island.  The week went fast.  It was relaxing (I think) for Nick and Mere, and Donny and I got our walks in every day.  Lots of beach time.  Found a great restaurant - Lee Bee - the menu was simple-whatever they caught that day!  The first time we went it was grouper and snapper.  Fried, grilled, blackened.  Platter, basket or tacos.  You watched the cook prepare your dinner.  It was awesome.  Nick's ALL TIME favorite restaurant.  Kids loved it too!  

We drove home - stopped in Alabama again to visit Karen and Charley (my high school friends) on their farm!  Another great visit!


Karen, Charley, me, Donny



Southern Caribbean Cruise
Got home on Monday, (fortunately we had a washer and dryer in the condo in Marco Island)-because we unpacked for only a couple of days!  Left Friday for an eight day cruise to the southern Caribbean.  

Met Mange and Mary, our cruise buddies for the last 5 cruises, in Columbus.  Flew into Ft. Lauderdale.
We always looks for signs from our girls - we got our first signs in the airport!

We were headed to pick up our luggage.  Mary walked past this guy who said hello.  She stopped and they both turned around and realized they KNEW each other!  He was Courtney's first tennis coach (when she was in elementary school).  If you've read the blog before, you know that Mange and Mary's daughter Courtney died of ovarian cancer in 2011.  She was 27.  And a LOT like Melissa.  Athletic, lots of friends, and a fighter.  So running into Courtney's coach was a pretty big sign.  We stopped, talked, took pictures.  (another interesting side note - he was there with his son who is a tennis player as well.  He goes to New Albany, outside of Columbus.  The Athletic Director at his high school is a friend of Nick's from high school!  Small world!)  So anyway, after talking for several minutes - we turned around and were just flabbergasted that they ran into this guy.  As soon as we turned to go to baggage claim, on the floor in front of us was a butterfly - painted on the floor. Our sign from Melissa!  (we covered a lot of area in the Ft. Lauderdale airport, and didn't see a butterfly painted on the floor anywhere else!!!)  Both our girls were there.  Great way to start our trip!



So we head to Miami, where we will spend the night before we board the ship.  Hilton Downtown Miami.  Beautiful.  Dinner, drinks by the pool.  

We wanted to get to the port early, so talked to the concierge about transportation.  Of course he recommended Uber, which neither of us knew anything about.  He was very helpful...told me to get the app and he would walk me through it.  I finally belong in the 21st century.  I have UBER!!!!  We were impressed.  Called, our ride was there within minutes - five minutes to the port.  It was awesome.  So we get on the ship, head to the top deck for drinks...when Mary STOPS in her tracks and says "Oh My God.  I left all my money in the safe in the hotel!!!"  (all her cash for the ENTIRE week!!!)  Mary is the planner of all the trips we go on.    I am so much better under pressure.  Figure things out on the spot.  Since I had Uber (now), I would go with her back to the hotel.

This ship (the Carnival Vista) had just disembarked 5000 people.  5000 more were checking in. And Mary and I were running in the opposite direction.  To get OFF the ship.  First thing we had to do was go to our Staterooms (which weren't ready yet) and get our Sign and Sale cards (which you use for everything on the ship - drinks, shopping, casino, and its a key to get in your room!) then we had to go through Security AGAIN.  Finally got off the ship - called UBER.  Two minutes later we were in the car trying to explain the situation.  And our driver didn't speak English.  He knew "OK" and "I don't speak English".  So we talked LOUDER and slooooowwwwweerrrrr....and he still didn't understand.  But he knew where we needed to go, and when we got there, I just didn't get out of the car.  Security at the hotel was waiting for Mary - took her up to their room and THANK GOD the money was in the safe!  We were back on the ship in less than an hour.  And Donny and Mange were waiting at the door for us.  


FINALLY!  Back on the ship...CHEERS!!!


Out of the 5000 checking in, 1400 were kids.  It was a busy ship.  Met some wonderful people from all over the country.  And if you've never been on a cruise ship, the majority of the people who work on the ship are NOT American.  A lot of people from Asia.  Hardest working people you'll ever meet.  And they ALL know English.  Or enough to be friendly and helpful.  And if they are waiting on your table or cleaning your room, they introduce themselves and REMEMBER your name.  Every time they see you.  No matter where it is on the ship.  It's amazing.  



The food was great.  Too much.   I told Donny it's a floating Golden Coral.  Only with great food.  Seems like the portions at dinner are getting bigger.  I didn't like that - I guess they are Americanizing the portions.  Americans eat too much.  But on the ship, they want you happy.  And they want you to drink (because you're not driving, so it's OK).  We really didn't see anyone who overindulged, but we were never up very late because we were up so early every day.  We walked the track every day (Donny averaged 6 miles a day!)  I only remember taking the elevator one time.  We walked the steps all the time.  We were on the 9th floor.  Went anywhere from the 3rd floor to the 14th!  Lots of walking.  Our hall was 3 football fields long - Donny, a former football official, paced it off.  I walked the halls instead of the track because it was air conditioned!  Work smarter - not harder!  

Our cruise buddies!



Our ports of call...

GRAND TURK

Off the ship straight into a shop.    First thing I see is this T-Shirt

Wow.  We always talk about grief, how it comes in waves (sometimes tsunamis!).  This shirt reminded me that HAPPINESS comes in waves too.  I really wanted this shirt, but of course they only had smalls, so I took a picture instead.  We had a tsunami of fun on this trip!

We've been to Grand Turk before - it's where I had my first massage on a beach!  And whadda you know!  It's still there!


 This is Mary & Mange - they went first...

Waiting for my massage!
Made some new friends at Margaritaville from NJ!


The pool at Margaritaville.  We were off the ship at 8:30 a.m. (had to be back on at 1:30)
Margarita's at the pool bar at 9 a.m.  Crazy.


Ran into our Cruise Director Adam too! (he was awesome!)

Dominican Republic

Got off the ship just to walk around the shops - then right back on.  

These little fish eat the dead skin off your feet.  EWWWWW.  No this is not me.

Off the ship to get a picture!

and another...

and another...

CURACAO

Off the ship to shop and head to the beach for a couple of hours!  Lots of things to do in Curacao..

There was a ship regatta going by when we got into port!



Looking off the ship at Curacao.


Donny found a place to rest his weary head...



All we saw was FORT.



Mange & Mary


Donny...who KNEW he was a shopper!

Can you find Mange in the crowd?

Was leaning over a railing and saw these guys...



The shoppers...




Finally on the beach and Mary is already planning the NEXT day!


A billboard in Curacao.  Donny's mom is a RADO!


Donny almost stepped on this guy!



A heart of locks.

The beach we went to!

On the ride to the beach, we learned a lot from our cab driver.  All about Curacao and the fact that citizens of Curacao learn FOUR languages.  English being one of them.  Interesting, in our country we expect everyone to learn OUR language, in other countries they welcome many languages...even learn to speak them!  Very welcoming.

ARUBA

Our favorite port on this cruise.  Shopping again first, then on to Eagle Beach.  





Mary found a spot with WIFI!





FUN on the ship!

White Night! An oldies party.  We fit right in!

towel art

The only sunrise we actually got up for.  And we got a HEART from Fort to boot!

more towel art

Not "our" pool - this one was too crowded!

Donny rode these slides!

our pool!

I got serenaded!

The SkyRide.  Got in line because it was the shortest line of the trip, and found out I couldn't wear flip flops, so I wore Donny's shoes.

The sky ride - goes out over the edge of the ship.  You pedal your way around.
Fun fun fun!!!!

Im in this photo by the pool!

Donny and his fru fru drink.

One of the actors in the show hitting' on my husband!

More fun

Went to see a movie in the IMAX!

Great cruise.   Got off the ship and headed back to Ft. Lauderdale for the night.


Ft. Lauderdale

We got about 20 minutes on the beach.  Donny and I walked for about 10 minutes, then came back and fell asleep on our chairs...only to wake up getting rained on.  A DOWNPOUR followed!

Dinner (I mean DRINKS)

Out shopping again.


The Elbo Room

Decorated palm trees



You want to travel with Mary.  She can get you upgrades (we were upgraded to Suites because she told them we were celebrating our anniversaries!)  Then they brought 2 bottles of champagne and chocolate covered strawberries to our room!!!

Last morning by the pool.  That night we were back home in OHIO.

Not ready to go home.

In 1981, we stayed in this hotel.  I think it's a Marriott now.  It was a Stouffers then.  Donny had to go to Ft. Lauderdale to work, so he took the three of us along.  Melissa was 3 Nick was 1. I spent two weeks by the pool.  Met two couples who found a way to get us on an Aircraft Carrier (the Independence) that was in port.  

Ft. Lauderdale Beach.

HOME SWEET HOME

For two days.  Then on to St. Louis for the Compassionate Friends Conference.  I'll post
those pics on FB.

Left St. Louis on Sunday after the Walk to Remember.  Got a call that Dad was going to the Hospital. That's where I am now updating the blog.  He was doing okay this morning...not so good tonight.  I'm staying overnight with him.  Nurse just came in to take his BP, (it's been high) and it hurt and he was yelling at her to take it off.  I told him to hold my hand til she took it off...so he did...and then he kissed my hand.  He can be SO sweet sometimes.  Then he tried to get out of bed.  He's a little confused about where he is.  I told him I'd sing to him. So I started singing "Rock-a-bye-Baby" and he yawned...Now he's asleep.  My singing puts the boys right to sleep too.  Hope it lasts.

Good night.  Sleep tight.