My Caregiver Wish List

This year, my children’s Christmas lists were, like my children, very different from each other. My daughter’s list was detailed, with a key explaining which items needed to be ordered online and which could be purchased in town. She started the list with a lovely statement about her gratitude to us as parents and helpfully provided direct links to products to save me time (and make sure I ordered the right thing).

My son? I’m still waiting for any kind of list. There have been a few verbal requests, and he has put two items in my Amazon cart, but that’s it.

Caregiving Challenges

Me? If I were to get an opportunity to tell Santa what I really want, my request would probably focus on what I really need as a caregiver:

A Game Plan

When dad moved in with us at the end of May 2014, everything happened rapidly. He had been living by himself (with significant help from us in the form of multiple visits daily to ensure medication compliance, etc.), he sustained a subdural hematoma from a fall and Wayne felt it was critical for him to live with us. He threatened to sign himself out of the rehab hospital, and next thing we knew it he was living with us.

Santa, it’s a little late for us, but if you run across any families who may be on the verge of taking on the task of caregiving, tell them to pour some hot cocoa and get on the same page. They won’t regret it. Caregiving works best when it is a joint family decision, not a situation you back into by necessity.

A Housekeeper

As I have written about here, and as anyone who steps foot in my house knows, housekeeping is not my forte. I am not proud of this, and am always trying to improve, but it doesn’t get any easier when you add the component of an elderly relative with self care challenges. In addition, we are almost always home; the wear and tear on the house is brutal.

If you really want to delight me, Santa, tuck a housekeeper or two in that sleigh and deploy them weekly (or even monthly), at least to the one bathroom in the house none of us can bear to go into anymore.

An Elf Who Specializes in Home Mobility Adaptations

There are so many of our home components that need to be adapted for Dad to be safer (and us to have more peace of mind): the toilet seat needs to be raised, the throw rugs need to be removed (because they are tripping hazards), there need to be grab bars multiple places in the bathroom. We need a shower chair. Some of these things are easy to do (and affordable enough). Some are “bigger” modifications. But they all take time and planning.

Santa, a grab bar may not be very festive but the prospect of peace of mind from less worry of falls is pretty darn merry.

A Train of Thought

While a trip on the Polar Express sounds charming, what I really need this year is for my own personal train of thought to make it from the home station to the destination depot without multiple unplanned detours along the way. Without a sprint to the bathroom when I hear the sounds I’ve come to know as impending instability. Without a request to turn the tv up (again).

Santa, all I want for Christmas is to to be able to remember where I put the ………

The Ability to Go to the Bathroom Worry-Free

You know how infants always seem to get fussy when you sit down to eat? There’s a similar principle with the elderly: close the bathroom door to do your business and the “get up too fast/get dizzy/find yourself at risk of falling” cycle activates. It’s UNCANNY. I’m not sure what the cumulative effects are of always being worried, but I know they aren’t health boosters.

Four minutes, Santa. Four. Worry. Free. Minutes so I don’t have to ho ho hold it.

Infinite Copies of the Meds List

I have written the Dad’s meds list by hand approximately 2,435 times in 2.5 years. Okay, maybe not that many but it feels like it! I do know that there are apps for this kind of thing, but I haven’t started using one yet. You would think, in this era of Electronic Health Information, that this would all be in the cloud. Right? I can attest that the last thing on your mind when you arrive at the ER after a fall is having a hard copy of the meds list.

In addition to these infinite meds list copies, Santa, they need to magically revise themselves when something changes. While we’re at it, this magical nothing-critical-is-ever-forgotten world will also make his insurance cards, social security card, and ID card magically appear when needed, rather than being at home where they are not helping anyone.

A Visit by the Mobile DMV

Spoiler: There isn’t a mobile DMV. But this is my list and Santa’s my benevolent all-giving fantasy guy right now so let me go with it. It didn’t seem like a big deal when Dad’s driver’s license expired, but then there was the document we needed to have notarized, with an ID for proof of identity, there was voting (he voted absentee but in general, it could have been requested at the polls), and there will be other life events.

Santa, if there isn’t a mobile DMV, can you and the elves come over and help with the arduous process of getting him dressed, to the car safely, out of the car at the DMV, tolerating the line, understanding the instructions he is being given in order to have a valid State of Florida ID. Please?

Unlimited Legal Assistance

Growing old, even if your life is relatively uncomplicated, brings with it the need to get legal affairs in order. Power of attorney, a medical representative, DNR orders (if you choose to have a DNR order), a will, and a host of other legal matters that need to be put in place. That doesn’t happen for free, and it is not always straightforward.

Santa, I imagine in today’s litigious society your attorneys may be busy putting warning labels on toys and all, but aren’t they free about ten months out of the year? Could they help a caregiver out? (And while we’re at it, an accountant as a stocking stuffer would be a plus.)

More Health Professionals Who Care About The Family

As I mentioned in this post, Dr. Daniel Bower, an oral surgeon who saw dad when he had a dental emergency, is the only dentist, doctor, nurse, or other health professional in the past 2.5 years who has looked at Wayne and me and said, “and how are you doing?” It’s not that we would have flooded him with the whole story or a litany of our challenges, but honestly the fact that he acknowledged that caregiving is hard on the family was big. 

While I could cite statistic after statistic confirming that caregivers experience stress, I know you have toys to make and flight plans to file, Santa. Just remind medical professionals to take a moment for empathy with caregiving families, okay?

Agencies and People Who Tell it Like it Is

One of the biggest frustrations of caregiving is the fact that well-meaning people tell you things that end up not being true or relevant to your situation. Relatively early on, someone with a home health care agency recommended another agency that, according to them, “will help you fill out the Aid in Attendance paperwork and file it — it’s just something they do.”

While the agency did help us with the paper work (which was denied after a months-long wait), when we eventually ended up at the Leon County Veterans’ Affairs Office, they said “why didn’t you come to us first?” We didn’t know to do that. The original agency we were referred to does help families fill out the paperwork, but judging by all the emails we still get from them offering to “manage our wealth,” it’s clear they had an ulterior motive.

I could give other examples but they are all the same essential model: someone tells you something they think will be helpful and you end up chasing your tail.

It also takes a lot of digging to find some incredible (and often free or low-cost) resources. We finally got hooked up with the free in-home respite from the Alzheimers Project here in Tallahassee, which uses Americorps volunteers.

Okay Santa, this is a lot to ask but we could sure use more “nice” information givers (who give the right info) than “naughty” (who mean well but send us down the wrong path). Our family’s bottom line and peace of mind are riding on this.

Patience

Dad’s cognitive issues are minor in comparison to others I’ve heard about. I know I have high expectations of myself, but I am saddened, often, about the fact that I find patience in short supply. It’s not his fault I didn’t plan ahead to be prepared to leave for a doctor’s appointment, not his fault that whatever happened in his brain stole his empathy, that it doesn’t do any good to say, “If I could just send out these four tweets, I can answer your question.”

I want patience, Santa, and I want it now! 

Grace for the Big Moments

The last 2.5 years have had their hurdles: the dental emergency, the head and neck cancer diagnosis with the related 35 radiation visits, 53 hours without electricity (or tv, his one constant) during the Hurricane Hermine aftermath.

The medical parts of Dad’s situation have compromised his privacy and eroded his dignity. More than the physical procedures, I will come away from this period of caregiving with a few significant moments embedded in my brain. I’m grateful for medical professionals who undoubtedly studied for years and learned complicated math, science, and anatomy, but for whom the real test is looking someone in the eyes who may or may not completely understand and saying, “this may be cancer. This could be very threatening to your survival.” Dr. Philip Sharp and Dr. Joseph Soto have both passed that test with flying colors.

I know you can’t take away those life altering moments, Santa, and I know that it is a privilege and duty curated out of love to be present for them. While hoping for a season of magic for children worldwide, I also ask for an extra helping of grace to be the caregiver Dad deserves.

Caregiving Challenges

Seven “Humbugs” and a “Ho Ho HOLD” on the Snark

I really enjoyed preparing the four posts I submitted to 12Most, such as this one about twelve great vine videos. There was one draft that never came to fruition, though, because every time I started writing it, I began feeling like its negativity would outweigh its informational value and that I may hurt the feelings of people I care about.

Writing about the topic I addressed in that draft on my personal blog seems a little less offensive, though, since I can just say my opinion and not be representing an entire cadre of writers. I am just going to get it out of my system once and move on (with, of course, a segue to a somewhat more positive ending).

The Humbug Part

I believe we have made some life events that are simply that, life events, hyperpublic and over produced. In doing, there is a danger that the personal, unique, cherished nature of these events may be diluted in favor of the public, commonplace, “how-could-I-top-that” qualities. These events include:

Promposals

A promposal is an invitation to the prom that is elaborate enough to be classified as a proposal. There are some examples here. The high school student seen here had her intended date pulled over, had the cop fake an arrest, and waited in the back of the car with a sign that said “prom.”

My humbug about promposals: First of all, what if the intended date says no? Secondly, as much as I love a theme and a fun creative project, I am still just as charmed by a young man who approaches a young woman in person and simply says, “Will you come to prom with me?”

Prom Photo Sessions 

Prom photos have become more and more sophisticated (so click here to see what I mean).

My humbug about elaborate high school dance photo sessions:  If the girl felt beautiful, the guy felt handsome, and the family could afford the dollars, what does it matter? These sessions have an “engagement photo-like” feel that seems out of place for couples who may not be embarking on a long-term romance.

Marriage Proposals 

Maybe it is the ubiquitous nature of YouTube and our ability to create and share video documentation of our lives. Something is happening that has resulted in a proliferation of marriage proposals that goes far beyond one individual getting down on bended knee and asking the other individual to spend a life together.

For example, a sand art proposal whose story can be found here.

marrymekelly

For more “beyond bended knee” proposals, click here.

My humbug: My humbug about this one is a little challenging to define. So many of the ones I have seen are full of love and beautifully done. These people are old enough to be somewhat confident the relationship will “stick,” which differentiates them from the high school students referred to earlier. I think I would distill my opinion down to: make sure you spend as much time clarifying that you feel the same way about money, kids, and sex as you do editing your proposal video.

Pregnancy Announcements 

When I got pregnant in 1995 and 1998, the  news traveled the “old fashioned” way–by word of mouth, phone call, email, and snail mail. This is no longer the case. Pregnancy announcements now fly over cyberspace as quickly as you can press “like” on a Facebook status or retweet someone on Twitter. The graphics behind these shares are pretty darned creative (like these).

My humbug: This is another one where I am blown away by the creativity but simultaneously a little taken aback. Maybe it’s the fact that such rapid shares separate the prospective parent from the recipient of the news. Half the fun of announcing your pregnancy is seeing the expression on the other individual’s face. I’m not sure 50 “likes” can do exactly the same thing.

Gender Reveals 

Putting aside those disciplined people who wait  until their baby is born to find out its gender (I was not one of them), the “gender reveal” process has gotten complicated! Here are three themes on one Pinterest Gender Reveal Board:

Ties or Tutus

Cupcake or Stud Muffin

Boots or Bows

For more including a gender “lottery,” click here.

My humbug: I am pretty sure the first gender reveal party I saw was on television. I can’t remember which celebrity it was, but the event was elaborate. There was a Hollywood party planner, caterer, favors, tents, the entire festivity checklist. Now I see them routinely on social media. Again, nothing is really damaged but having a gender reveal party but it seems easy to lose the exceptionally personal nature of the moment.

Maternity Photo Sessions 

I have seen some gorgeous maternity photos (such as these). What a beautiful way to commemorate that moment in a family’s life.

My humbug: My humbug is with the unduly revealing ones such as these. I am not a prude about the female body, especially the beauty of the pregnant female body but there is something about these photos that makes me feel like an invader (and I know, I can just “not look”).

Using A Baby’s Name Before They’re Born

Perhaps it is because we can now personalize pretty much anything that a baby is often given items with his or her name on them while they are in utero.

My humbug: I don’t know if this is a southern superstition or what, but I have always been leery of applying a child’s name to a product until they have been born. I am sure my feelings are influenced by having lost two pregnancies and by my mom’s having lost a baby, but loss happens. I just feel like it’s tempting fate.

In many of these cases, maybe my issue is green (and not the fun green of Christmas), but the green of envy. Since I couldn’t afford to throw a gender reveal party, for example, does that feed my humbugosity? If so, I own that but don’t think that’s the root of my opinion.

Switching Gears to the Positive

Since it’s Christmas, let’s address the most ubiquitous over-the-top phenomenon this time of the year, the Elf on the Shelf, who is hovering around many homes this season:

Thanksgiving Day Parade

Over the past few years, I have found myself increasingly thankful that the EotS wasn’t a “thing” when my teenagers were little. If it had worked to modify my kids’ behavior, though, maybe I would have bit.

My world, in-person and on social media, is filled with über creative types. These adults have possibly missed their calling in production design for major motion picture houses. For example, toilet fishing:

tumblr_lw1fazz8h51r755nso1_500

Source: www.diycandy.com

Toilet fishing is almost rudimentary compared to the attention to detail of my friend Diary of a Mom (I mean would you look at those little tiny oxygen tubes coming out of “Hazel’s” nasal passages?).

THEN there are the “alternate” EotS folks, who do tableaus like this (this was one of the tamer ones! Visit the Good Time Elf Facebook Page to see the others.):

for-a-good-time-elf

The voices of the Elf on the Shelf detractors are louder than ever this year (at least it seems that way to me). This article, for example, outlines one parent’s view.

I have had the elf skeptic conversation with friends on Facebook about EotS. We all gleefully pile on (yes, me included), smirking our disdain for the effort, the misguidedness, the adult energy, time and effort required for a “children’s” phenomenon.

Here’s my Ho Ho HOLD the snark point: I am through snarking about EotS.  He isn’t for me, but if he had been a “thing” when my kids were little, I may very well have given in and loved every minute of it.

I have had teachers say EotS is a “friend” in the classroom, someone the kids love and enjoy. I see families I care about and respect enjoying the heck out of creating their EotS scenarios. I see kids who *may* be doubting Santa’s existence still looking forward to their elf’s whereabouts in the morning.

It’s not for me, but there’s enough snark this holiday season (and, let us admit, all year long). If EotS is your thing, enjoy! I’ll even send you a Big Green Pen for your elf’s use if you’re running out of ideas!

snark santa

We Can’t All Be Santa

Disclosure: This post is sponsored by the Florida Prepaid College Board, through my role as a Believer Blogger. All thoughts are my own.  

Cropped Santa Mail

I don’t remember exactly what Wayne put on his Santa list in 2005, when he was in first grade. I am sure the general theme was “transportation” as in toy trains, remote-controlled cars, and anything else that had wheels, made noise, or (ideally) moved while making noise. All items on the list were meant to be enjoyed “RIGHT NOW.”

First Graders Aren’t Worried About College

First graders aren’t worried about the distant realities of college tuition, how they will pay for their residence hall when they are 18, or the advantage of “current plan pricing.”

First graders don’t know:

  • Individuals with bachelor’s degrees earn an average of $23,700 a year more than those without, according to the Florida Department of Economic Opportunity
  • A recent Georgetown University study estimates that a student with a bachelor’s degree can earn $1.6 million more in their lifetime than a student with only a high school diploma
  • It’s projected by a study from Georgetown University that by 2018, 59 percent of jobs in Florida will require post-secondary education
  • In 2013, the unemployment rate for bachelor’s degree holders was 4 percent. For those with only a high school diploma, it was 7.5 percent, according to the Bureau of Labor and Statistics

I don’t know Santa’s academic credentials, and good for him that he’s got his gig pretty locked down (and oh the cookie benefits!). But he’s certainly the exception to this general truth:

Graph

The Gift of a College Education

Purchasing a Florida Prepaid College Plan for your child now is a gift that will long outlast the stuff that kids beg to see from Santa. As I wrote in my last post about Florida Prepaid, my parents bought Florida Prepaid College Plans for my children with lump sum payments of around $7,000 when they were infants. That investment will result in approximately $32,000 worth of college education for each of them.

I know it’s a hectic time of year for all of us. I know that part of the fun of sharing the holidays with our children is indulging in some of their favorite “gotta have it now” treats. I’ll tell you what ….. there’s a way to secure your children’s educational future and free up some cash for a treat.

Enrollment Fee Waived!

Sign up for your Florida prepaid plan before December 31 and the $50 enrollment fee will be waived*. It’s almost like found money! (Your prepaid payments won’t begin until April 2015.)

For more information, visit the Florida Prepaid College Plan by clicking here. If you prefer to speak with someone by phone, please call 800-552-GRAD (4723).

education gift

*The Open Enrollment period closes on February 28, 2015, but the enrollment fee waiver ends December 31, 2014.