Holidays, Decorating and Caregiving

Readers know how much I love to decorate at Christmas time! This passion for lights, snowmen and holiday cheer could be called over the top or slightly very excessive (Exhibits A, B and C) but I like to call it “normal,” “spreading Christmas joy” and “oh so much fun!”

Santa visited our neighborhood early

Since caregiving started I have found decorating just as much fun but adding just a smidge of extra stress to an already busy time.  Last year I was very stressed out with the ever-increasing personal care needs of Robert, work was extremely busy and we were in the middle of trying to sell our house and find a new, more disabled-friendly house.  The mere thought of downsizing the decorations was depressing and a near impossible task for me.

It is not uncommon to have to downsize when caregiving or when someone is ill.  While getting our trees this year (yes, trees – more on that later), I overheard a woman tell her husband and adult daughter they used to get the biggest tree in the lot. She was saying this as her husband tossed a mid-sized tree in the back of their pick-up but she seemed to accept this was the year they were downsizing.

Richard’s mom has boxes and boxes of Christmas decorations at her house but hasn’t had the energy or desire to unpack them the last few years. Last year, Richard snuck over on Christmas morning and set up a tabletop tree and strung a few lights so she would wake to a magical Christmas morning.

I still get a little teary-eyed just thinking about that generous gesture.

Carol's finished product

This year, Carol was again not interested in decorating. It could be her depression. It could be hauling boxes out and decorating seems too overwhelming. Whatever the reason, we wanted to bring her some Christmas cheer so surprised her with a decorating party.  Richard, Robert, Rachel and I set out with another tabletop tree, decorations and our Christmas spirit. We surprised Carol who was grateful and ready to decorate with us. She jumped in and went through her own boxes of holiday decorations and pulled out what she wanted to set around and found ornament hooks since we forgot to bring them. 

She let us know when she was satisfied there were enough decorations – we wanted to follow her lead and not overwhelm her. After all, this was her house and we didn’t want to overstep our boundaries but wanted to bring some Christmas cheer.  When we were finished, she left for church and called once she returned home.  She expressed her gratitude and joy at coming home to a tree and a living room full of Christmas lights.

Choosing the best tree

It was a fun afternoon for all of us and Carol was pleased with the decorations. Success!

For our own house, Richard and I have been decorating a little at a time. Instead of taking a full day (or two or three) to decorate, we have slowly put out a few items each day. We even did our own version of downsizing: instead of a very tall tree which is difficult for the two of us to haul in and decorate, we opted for two smaller trees. We have done this for a couple of years now and it works out much better for us. Richard is not in as much pain while stringing the lights or trying to get a 10 foot tree straight in the stand.

The bonus of having two trees is we can use most of the ornaments we have collected through the years! Last night, Robert ate his Rocky Road ice cream and watched us string the lights on one tree and tonight we will tackle the other one. Robert enjoyed helping pick out the trees and will help put on a few ornaments as well. 

We don’t have him help with the lights as that is a very delicate operation that Richard and I have tried perfecting over the years. By perfecting, I mean we try to hang the lights and continue to speak to one another for the rest of the night.  (There’s something about stringing those lights . . . as a friend said, “hanging lights can make or break a family!)

Stringing lights on Tree #1

Again, success! J

Caregiving brings challenges and change and sometimes even downsizing but it can also remind us how precious time with family is and that change can be embraced.

Here’s hoping you enjoy your holidays and decorating too!  Just watch out for those Christmas tree lights . . . 

Note to Self: Get it Together!

For the past few days I have been trying to write this post in such a way as to not come across as an ungrateful, spoiled brat. 

Hard to do when I have been exactly that.

As everyone knows, I love to decorate for Christmas. (If you don’t know that then either we haven’t met or you’re not paying attention.)  I don’t just love to decorate; I aspire to be the talk of the neighborhood.  I compete with neighbors to have the most lights, the most blow up decorations, the brightest house in the court. 

I don’t know what it is like getting through December without having to flip the breaker switch when I want to use my hair dryer.  I have been known to put one too many strings together outside – enough to blow the whole display. 

Does that deter me???  Ha! Of course not.

Here it is December 15 and I only have a few decorations outside! I could blame the weather (and believe me, I will) but it isn’t just that.  I have been busy at work and busy taking care of Robert and his increasing needs. I have had help from the kids in the past but they are out of the house and living their lives! How dare they!

Plus, it has been raining like crazy!  Good for the California drought; bad for my Christmas lights.

The inside decorations even got a late start.  I have been telling myself that it’s okay.  My deadline is December 24, after all. 

We have a large outdoor shed with our Christmas decorations. The shed is the size of a bedroom – a bedroom! Full of Christmas decorations! Which is awesome although quite daunting when my to-do list is ridiculously overloaded and those aforementioned kids are no longer around to haul boxes inside in assembly line fashion.

I had the brilliant idea of letting myself off the hook.  I’ll take it slow, I said.  I will just do what I can as time allows. 

Then the calendar turned to December 2^nd and I was back to “OH MY GOD! I HAVE TO DECORATE THE HOUSE!”

I hauled the boxes in, separating inside and outside décor.  Having the rain helped me prioritize: inside first.  Richard and I took Robert to the local hardware store to buy not one but two Christmas trees. I love having two trees – I had two growing up and think it just stuck in my brain that was just the right amount to have. (Of course, this isn’t the seventies so our tree is not the classy artificial white one with red ornaments.)

Richard and I usually get a very large tree for the front room and a smaller one for the family room where Robert spends most of his time. I mean, we have to leave room for Robert.  I get it - I'm not crazy, you know.

This year, I had every intention of getting one huge tree and one smaller tree but realized we needed to get two smaller trees. Richard’s back was already killing him when we were picking out the trees and I could barely stand them up to find the best one. Robert found the one for his room in two seconds flat – his were easy to stand up and turn around.

“That’s a good one," he said after the second spin.  Sold!

Richard and struggled with the ten foot trees and I finally looked at him and said we should get a smaller tree.  Let’s get a six foot tree.  That way, we can get both of them in the house without causing enough pain to warrant a three day recovery period. It would be easy to set up and decorate. Sold!

Both trees actually fit on top of Richard’s SUV and neither fell off! (Not that that’s ever happened to us.)

We got them in the house and set up and took our time decorating them. Just because we could. (And, you know, because the kids weren’t around. Kids – growing up and living their life; the nerve!)

But during this week, I found myself calling the living room tree my “Charlie Brown” tree.  Yes, I was calling my six foot full tree a Charlie Brown tree.

Even I knew how ridiculous I sounded so didn’t dare say this out loud. Goodness! How ungrateful could I be? I have two six foot trees in my house!

Spoiled. Rotten.

As we put on the decorations, both trees came to life.  Robert sat in his wheelchair and put ornaments on the tree.  I found a holiday music station on the television and we listened to classic holiday music. 

Robert, much to my surprise, even sang along to a song or two!

We drank hot chocolate and busily unwrapped the decorations and slowly but steadily emptied the boxes. 

The trees are done, the indoor décor boxes have been put in the shed and my house is starting to look like Christmas.  The outside still needs work but that will come along.  I still have time! If we don’t win the unofficial (aka, existing only in my head) neighborhood decorating contest, that will be okay. 

I think.  Unless my Spoiled Rotten self returns. 

Oh, I better get back out there – rain or no rain.

There are some traditions I just can’t give up! 

A Caregiving Calendar

What better way to end a Caregiving Progressing Holiday Blog Party than with a gift? 

2015 Caregiving Calendar

Pegi Foulkrod and I have created a 2015 Caregiving Calendar pairing Pegi’s artwork with words of comfort from Denise M. Brown, of CareGiving.com. 

Pegi’s artwork absolutely takes my breath away.  It is poignant, wistful and delicate and touches me deeply.  Denise has been giving her readers words of comfort for years and they can also be found in three books which I highly recommend.  You can purchase one or all three here (I suppose you could buy just two but go for them all!).  Denise’s comforts always seem to fit just what people need, when they need it.  She’s talented that way! 

I wanted to combine these two talents and since I love calendars and they make a terrific holiday gift (hint, hint), we have created a gorgeous calendar with lovely pictures and comforts for all year! 

And, because it is the season of giving and generosity, Pegi and I are donating half of the price of the calendar to CareGiving.com. (Cost to produce the calendar is more than that but we wanted to keep the price down and to give CareGiving.com as much as we could!)

This beautiful calendar sells for $15 per calendar.

Quantities are limited so get your order in fast! (I always wanted to say that.)  J

Purchase the calendar through my PayPal (click on the button below) and either direct message or email me your address.  I will ship the calendars as soon as I have them which should be within a week.  I’m hoping the postal service cooperates and I can get calendars shipped out in time to give for Christmas gifts!

Wishing everyone a happy and delightful holiday season!

Down to the Wire

Today is Sunday, December 23.  Two days before Christmas and Robert is still working on his Christmas cards.  Ack!  The pressure!  (Oh, who am I kidding? Robert feels no pressure whatsoever since he does not have any concept of deadlines).

  

I picked up Robert this morning and he is staying with us until Wednesday morning (although, remember, that’s just between us). 

 

Robert working on the Christmas Cards

Robert had a pile of unopened Christmas cards at New Home which he enthusiastically read once we got back to my house.  I explained who everyone was if he couldn’t place them and he said, “That’s nice” after reading each card.  Being the borderline hoarder that he is, he will no doubt save them forever (I just realized I do the same thing!). 

 

Robert is feeling better (except still having intense seizures) and I am also feeling better.  No one else in the household has caught the nasty bug going around (knock on wood) so we are getting back into the swing of things.

 

Which, for this time of year, means working on that never ending pile of Christmas cards. 

 

Yep.  Robert is still working on them.  Unfortunately, he will not be able to finish them all but it isn’t because he hasn’t tried.

 

Our conversation this afternoon went like this:

 

Do you want to work on your Christmas cards, Rob?

 

"Sure!"

 

How about just signing ‘Love, Robert’ on the cards?

 

Robert looked straight at me, “Okay, I will.”

 

Then proceeded to write several, painstakingly slow sentences. 

 

He wants to send the cards but he also wants to write what he wants to write.  What can I do – I have to pick my battles and, call me crazy, but rushing him on Christmas cards can't be a battle (you know, because of that whole peace on earth and good will toward men thing).

 

I am resigned to the realization this is probably Robert’s last year sending Christmas cards.  Unless we get started in July.  Hmm, maybe . . .

 

I apologize if you don’t get a Christmas card from Robert but please don’t think it was because we weren’t thinking of you!  The cards weren’t in any particular order and he just did them as he could. 

 

So if you didn’t make the cut, don’t take it personally (and know that if we do cards next year, you'll be the first in the pile!).  Robert basically writes the same thing on all his cards, only changing the salutation and signature so please consider this a Christmas card to all of you! 

 

“Dear Uncle/Cousin/Friend.  I, Robert Wright, want to wish you a very merry Christmas and a very Happy New Year.  God Bless You.  Love, Your Nephew/Cousin/Friend, Robert Wright”

 

Merry Christmas and Happy Holidays!!

 

 

 

Working and Caregiving: Communication, Flexibility, Creativity

On today’s to-do list:

·         Decorate the outside of the house;
·         Start and finish Christmas cards;
·         Pick up Robert and bring him to our house;
·         Help Robert maneuver through the myriad of Christmas decorations I have (hopefully) just installed;
·         Have Robert start his Christmas cards; Expecting him to finish in one day is unrealistic – actually expecting him to finish before Christmas is a stretch; (Yikes! I should have started a month ago!)

The list goes on but you get the idea. It’s the holidays and there’s a lot to do!

Before tackling my to-do list today, I joined Denise M. Brown of Caregiving.com on her internet radio program, “Table Talk.”  I join Denise the second Saturday of each month to talk about the issues facing working caregivers.  As Sally Abrahms, a blogger on AARP.org, shares from the AARP Public Policy Institute, “61 percent of family caregivers age 50-plus work either full-time (50 percent) or part-time (11 percent).”

That’s a lot of caregivers impacted by policies and benefits in the workplace that may or may not be sensitive to the needs of those caring for a family member or friend.

On the show today, Denise and I talked about how the holidays add extra stress to people already stretched thin with their responsibilities: work, family, caregiving, self and now the holidays.  How does the working caregiver juggle not only these responsibilities but the very real possibility of the unexpected (a hospital stay or illness) happening?

For starters, with communication, flexibility and creativity.

Employers don’t always know what an employee may need and it’s going to take a while for the law to catch up to the ever changing needs of both the employer and employee.  I know this first-hand after fighting for an expanded definition of family under CFRA.  Sibling care is not covered under either FMLA or the California version of it (CFRA).  If the law hasn't caught up yet, then employees need to ask for what they want from their employer.  Whether it’s a more flexible schedule or paid sick time to care for a relative not covered under FMLA or CFRA, communicating the employee’s needs to the employer is the first step to change.

Working caregivers can be the hardest working employees an employer has.  Add to this the benefit of having long-term employees and these are the employees employers do not want to lose.  Flexibility – from both sides – is essential to making this working caregiver situation work. 

Coming up with creative solutions so the working caregiver does not feel compelled to quit their job and the employer maintains a high quality employee is not easy but it is possible.  Flex-time, job sharing, a combination of working from home and the office are just a few creative solutions. 

Caregivers are very adept at creative decision making and problem-solving in their caregiving role and there’s no reason to think they wouldn’t be in workplace either. 

In our conversation this morning, Denise tells a funny story about how she “creatively” managed her full-time and part-time jobs. 

As a working caregiver, how do you manage both the caregiver and employee roles?  What creative solutions have you suggested or implemented as an employee or employer?  I’m interested to know how people have resolved this conflict without leaving the workforce. 

If you’d like to listen to the show today, please click here.  

I’m off to tackle my to-do list!  Wish me luck or the next picture I post could be me tangled in holiday lights and Christmas cards!

Merry Christmas from Robert's Sister!

Confession:  After Robert woke up from his nap this afternoon and ate some candy from his stocking, I asked him to finish his last Christmas card.

No more Christmas cards! Please!

Yes, I know today is Christmas.

Robert was so close to having them done last Sunday.  So close!  He was down to two more to go when we had to leave to make it on time to a Christmas program at church.  Robert would have agreed to pretty much anything since I was actually taking him to church instead of making him watch it on television. 

He agreed to finish them in the car (big mistake and my apologies to cousin Adam if Robert’s handwriting is a bit difficult to read – bumpy roads combined with my driving aren’t very conducive to easy writing in the car).    

We got to the church before he could finish the second one so it stayed in my purse until Robert came over again this weekend.   Even I didn’t think it would be okay for him to finish the last one during the church program (plus, the lights were out most of the time . . .).

So, yes, on Christmas, Robert finished his last card.  I actually may have him do a few more just to get a head start on next year!   (Okay, I kid). 

I am grateful the cards are finished but I’m also grateful for a Christmas season filled with love, happiness, family and friends.  There has been so much laughter with our daughter who helped with the Christmas lights and assisted with shopping.  I am grateful for our other daughter for being a wiz in the kitchen and supplying us with delicious treats (and giving me a reason to join a gym in 2012!).  Both are busy with work and school and their own friends but find the time to be with family.  Our son seems to have turned a new leaf since he realizes he’ll be leaving for boot camp in 5 weeks and is (gasp) actually fun to be around (and seems to  be more on board with making good decisions).  Hubby and I have been enjoying working as a team in our usual Christmas roles (I shop; he wraps – we do make a great team!) and Robert hasn’t been in the hospital for quite some time due to illness or falls (knock on wood).   

I am grateful Hubby’s family, Robert and all the kids joined us today for a Christmas morning filled with laughter and way too many breakfast treats.  Other Brother and his family are visiting tomorrow so the Christmas fun and treats will continue for another day.  

(I definitely need to join a gym or invest in more sweat pants.)

I hope your Christmas was as delightful as ours.  Just one word of advice: take it from me, you may want to get started on your Christmas cards tomorrow . . .

Is it Christmas Yet?!

It better not be – Robert isn't done with his Christmas cards yet!  (Um, mine are “in the mail.”) 

One thing we do have finished: our decorations (which is no small feat).  Our tree, despite a rockystart, looks very festive and is just waiting for presents to be wrapped and put around it (still on our list).  Indoor decorations can be checked off the list (as soon as I unpack those kitchen boxes).  Every inch of the house is covered with garland or snowmen or candles or countdown calendars (holiday bonus – the decorations do a fantastic job of covering up the dust).

The finishing touches were put on the outside decorations yesterday (I love crossing things off my list!).  Aside from needing a permit to display thousands of lights (I kid – a little garage conversion humor), the lights went up fairly smoothly aside from many of them not working this year and having to make numerous runs to the local Holiday Decorations/Cat Food store (otherwise known as Target).

Yes, we made another trip to Target yesterday before we could finish. . .

But they are finished!!  (Unless I find something else at Target too cute to pass up).  Hmm, I may have a problem.  Is there Christmas Decorating Rehab?

Well, before I am “cured” of decorating too much, enjoy the video of our outside décor. (If I knew what I was doing in taking videos, I’d add a bit of holiday music and maybe Photoshop some snow into the picture but since I don’t you will have to imagine “Frosty the Snowman” playing in the background and a blanket of snow on our green, Northern California, grass.)

I’d love to hear what your holiday passion is – is it decorating?  Baking?  Wrapping?  Will I be seeing you in Christmas Decorating Rehab in January?  No matter your holiday passion, enjoy the last week (or two) of the holiday season! 

“The Butter is Having a Meltdown”

That’s the best quote I’ve heard in a long time.  It comes from June’s 9 year old autistic son who was watching the butter melt in a pot as his mom did some holiday baking. 

I had my own meltdown this weekend and I’m not proud of it.  I got pretty cranky with Robert which always tells me it’s time to step back and take a break (although, I wish I could figure this out before I start snipping at him!). 

There are all kinds of reasons (I’m not making excuses) for the meltdown:  work is super busy this time of year, there are the extra tasks associated with the holidays (don’t get me wrong – love the holidays but adding holiday cards, parties, decorating, shopping and eating mounds of chocolate to an already busy schedule can be a bit stressful).  Then there’s all those lemon bars my body is trying to decide what to do with (is this junk food or does it count as one of the five fruits/veggies a day?). 

It was a short visit with Robert but packed full of activities.  I picked him up mid-morning on Saturday and had him change into his pajamas for a Christmas PJ party (my giant cow slippers were the hit of the party!).  I could have asked New Home to already have his pajamas on but there’s always the possibility Robert would put on pajamas that aren’t, um, clean.  Alright, they might smell.  He has a tendency to not notice if he’s wearing clothes that suffered through a protective brief leak and then dried.  I can’t have Robert wearing smelly clothes.

People already are wary of Robert because of the walker and the helmet and the slow speech and the seizures.  The last thing I want to add to his resume is “I smell like pee.”

I arrived to pick him up, had him change into some good smelling pajamas and we went to the party.  We were late but not late enough to miss out on any of the activities.  Robert won a prize (a set of Spongebob mugs with packages of hot chocolate mix) and grinned from ear to ear.

It was a full day and we all took it pretty easy when we got home that afternoon. 

So where’s the meltdown? 

Later in the evening when Robert was getting ready for bed, he had some bathroom issues.  Let’s just say he had trouble cleaning up (I think I’ve mentioned before that Robert likes to use one square piece of toilet paper to clean up.  No amount of me telling him I can afford to buy as much toilet paper as necessary seems to convince him to use more.)  I’ve even bought him wet wipes to clean up and told him he can use as many as he needs but he is determined to save some trees. 

As any caregiver will tell you, it is sometimes necessary to step in and help.  It was at this time I realized I didn’t have any gloves so had to resort to supervising the clean-up.  It was not going well because Robert was not listening to my instructions which were pretty clear:  USE MORE WIPES!  During this chaos, Robert’s pens that he had removed from his shirt pocket and set on the bathroom counter fell into the wastebasket along with all the used wipes. 

I wasn’t about to go fishing for them.   

He continued to get cleaned up (and not listen) and I could feel the crankiness well up in me and I was snippy with him while he finished up. 

(That’s not the meltdown).

A Caregiving Holiday Blog Party!

For whatever reason this year, many of our Christmas decorations decided this was the year to stop working.  Several strands of lights went through the “testing” phase of putting up decorations, only to stay dark (and, yes, we checked them on a different outlet in case our outlet was the problem).  Our lighted candy canes that usually brightly line our walkway still line the walkway but you’ll need to use the light from the lights in the nearby tree and the snowflakes hanging from the gutters to illuminate your way to our door.  We also had to say goodbye to the usual lighted holly we hang above our garage. 

Goodness, it was as if they all looked at each other and said, “We’ve worked long enough.  Let the elves make a few more candy canes and string lights and holly, we’ve paid our dues.”

So, off they went to Occupy the Garbage Bin.  

Inside, the situation was similar.  Lights didn’t work and a couple of ornaments broke (both of them Nebraska Cornhusker ornaments, no doubt shattering themselves to oblivion due to a disappointing football season).  At least we had about a thousand other ornaments and a beautiful, albeit, slightly banged up tree.

Looking good after a rocky start!

We don’t usually intentionally get a banged up tree but this year was special.  This was the first year our tree flew off the roof of our car during the trip home.

Yep.  A 10’ foot tree, freshly cut from a nearby Christmas Tree Farm flew off of our SUV on a two lane road and landed in the next lane over but miraculously avoided hitting any other cars.    

Bonus: it didn’t even get run over.

My husband would have loved to keep that part of our Christmas tree experience just between us and our son who was riding in the backseat (and who looked about as shocked as an 18 year old boy trying to maintain some semblance of “cool” can look), but with technology today, I had already texted our daughters and was in the middle of posting the event on Facebook when his request for privacy came through. 

Gotta make that request that a little quicker, honey.  My typing fingers are pretty darn speedy.  (Plus, who really could keep that experience to themselves?)

Now that the decorations are finished and the tree is in our home instead of the highway, it’s party time.  Since this is a blog, this is a blog party. 

This week, I’m participating in the Caregiving.com HolidayProgressive Blog Party!   It’s a great opportunity to read the blogs of other caregivers as well as those blogs of a few people running businesses which are designed to help caregivers. 

I never tire of mentioning what a fantastic resource Caregiving.com is for caregivers.  It offers a community – no, a family – of support, resources, inspiration and caregiving tips.  If you are a caregiver with a blog or have a business geared toward caregiving, you can join the party too!  Visit caregiving.com for the details to join and how to win great prizes.

Speaking of prizes, at the end of this week I will give away one autographed copy of my book, Forever a Caregiver, to a random visitor/commenter.  This book is for anyone who is a caregiver or who has a family.  J

Now, imagine sitting around our tree (which doesn’t look too bad after having spent some time on the highway), grab some hot chocolate (with a candy cane in it, of course), a couple of cookies and enjoy the party.