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

Bringing “Trailahassee” Alive: Summer Trail Series 2014

This summer, I participated in the Gulf Winds Track Club’s Summer Trail Race Series 2014. The series was first held in 2013, and I did not participate. I spent much of that summer seeing other runners’ posts about the trail races, a combination of victorious and “wow can’t believe I survived in that heat” sentiments and wishing I had been part of it. Since the series sells out early (like, in April) I made sure and secure my spot when the opportunity presented itself this year.

One of my regrets about the trail races is that it was utterly impossible to take pictures of the trails since I was so focused on survival. That’s why you’re getting pictures of me instead of nature’s beauty. But I do have this one on the Cadillac Trail that I took one day while on a training run:

Summer Trail Series

Cadillac Trail

Before I recap my memories of the trail series, a quick look at each race:

redbug

The first race, on June 21, was a 4.5 miler on Tallahassee’s RedBug Trail. It began at 6 p.m. I ran my Charity Miles that day for the Alzheimers Association in conjunction with the date of the annual Summer Solstice “the longest day.” (The connection with Alzheimer’s is also why I wore purple.) Finished 113/114 in 1:26:45.

swamp forest two

The second race, on July 12, was at the Swamp Forest Trail. It was a morning race, which meant cooler (relatively) weather. I was excited that this race included me crossing the 750 mile mark in my running for Gareth through I Run for Michael (my green shirt represents awareness of mitochondrial disorders (what Gareth has)). I ran for Feeding America via Charity Miles. Finished 108/109 in 1:04:42.

magnolia

The third race, on July 26, was at the Magnolia Trail. One of the challenges of this race was the time (6 p.m. and HOT), the fact that I had been in New York City for the week prior, and my trip earlier that morning to my family reunion (and all that good southern family reunion chow!) I ran for Team RWB via Charity Miles in honor of Anna Runs America (Anna was running cross country in support of Team RWB as well as the Wounded Warrior Project). The “train” is my favorite memory of this race (the “train” is the small group of us who remained together for a significant portion of the race … toward the end I stepped aside and the others went ahead … but I loved the comments from everyone behind me about us being a train and “in this together.”). Finished 107/108 in 59:03.cadillac

The final race, on August 9, was on the Cadillac Trail (5.5 miles). I was so happy to be debuting my Idiots Running Club singlet. I was running for Team RWB (and Anna) again, also in memory of Murphy, one of our I Run for Michael children who had passed away (and for Gareth, as always…). Finished 86/88 in 1:40:31.

Takeaways:

Choo Choo. As I mentioned in my recap of the Magnolia race, the little “train” of runners we created during the Magnolia race (and replicated to some extent during the Cadillac race) was so meaningful to me. The positive vibes from the runners behind me who liked the pace and were counting on me to keep it consistent made me feel so great. I have so often been last or next to last (which is fine!) but once in a while to feel like I am helping another runner hang in there is the best feeling.

HR Issues. During the two evening races, I came to a point in the race where I was struggling mightily with a very elevated heart rate. Far above my Zone 5 (and I rarely run at Zone 5 on purpose). After the RedBug race, I deactivated the beep that tells me I am above my max HR because it was disturbing to hear and I figured the other people on the trail with me didn’t want to hear the constant beeping either. I know (from conversations with other runners) that I am not the only one who struggled with HR issues during these races, but I found it frustrating (and worrisome).

Trail Beauty. I lost count of the times I thought “I wish I could take a picture of this to share” (mostly this was about beauty but other times I wanted people to see how darn technical and difficult some of these trails are because [wait for it…..] I AM NOT ACTUALLY A MOUNTAIN BIKE! (The races were on Mountain Bike trails.)) Pretty beats hard but these trails had plenty of both.

Trail Etiquette. One aspect of this race series that I loved (and that perplexed me at times) was the emphasis on trail etiquette.  I can’t find the original email, but the parts I remember were: no earbuds, respect the trail, don’t leave anything you don’t take out, and pass on the left. There were other etiquette tips, but those are the ones I recall. I appreciate how much care was taken to respect the natural balance of the trails (including capping the series at 150 participants so as not to overestress it). I must admit I was frustrated to see a runner with earbuds (maybe (s)he had missed the instruction). It was a different set of rules than I was used to and I appreciated the way it made me think about running in this environment.

Popsicles and MoonPies Rock. You won’t see me complaining about the post-race spread (and there were healthy options too). I didn’t miss an opportunity to wolf down a post race Moon Pie. Yum.

Working Harder Than Ever. With the exception of a few ill-advised mid-summer runs I took without adequate (i.e., ANY) hydration before I got a hydration belt, this series was the single hardest running endeavor I have ever undertaken. Of course, the fact that it was the hardest makes it the most valued!

Sponsors. We were so fortunate to have the support of some generous sponsors (and props to the Race Director Bobby York for securing all of these donations). Salomon Running came out to all of the races, and at several of them let runners use their shoes for the race. Other sponsors included: Gulf Winds Track Club, Trail & Ski, Trail Runner Magazine, Earth Fare, Power Bar, Smart Wool, Buff Headwear, CamelBak, Eagles Nest Outfitters, Road ID, MoonPie, Damn Good Bikes, and Reflekt.

Volunteers. We had the best volunteers for this series! It takes some dedicated people to work through the sweat and keep us a) from getting lost b) hydrated c) encouraged and d) happy. These volunteers did all of that and more. They were incredible! The diligence taken to make sure the course was well marked is much appreciated. Don’t think I will ever forget “flags on the right”! Those who planted the flags are much valued!

FRIENDS. Many of our Moms Run This Town Tallahassee members participated in this series. There’s nothing like sharing this experience with friends. Thanks, ladies!

mrtt cadillac

Moms Run This Town Tallahassee Cadillac Trail, August 9, 2014

FINALLY. To close things out, I have a few thoughts on the trail series that elude any type of categorization. I am so glad I did this (I think that shows in my words and pictures). The experience made me explore how I really feel about my perennial back of the pack status. The trail environment put me even farther back than a road race would. As much as I jokingly say to people (frequently!), “oh I can’t tell you the number of races I have finished last in, with the law enforcement saying into their walkie talkies ‘hey do you think she’s the last one?'” I don’t take finishing last lightly. I work hard at my running and there is a competitive fire beneath this relatively calm exterior. Am I glad I never finished last? YES. Would I still be happy if I had? YES. Do I find it amusing that the race director said as I headed out for the final race, “My mountain biker isn’t here so when you pass the aid station, let them know you’re it?” YES (And in fairness I had sent him a message the night before imploring him to proceed with the end-of-race awards even though I would probably still be slogging my way through the 5.5 miles (as long as someone noted my time because Lord knows I wanted it noted!)). There were so many times I asked the people behind me “do you want to pass?” Why did I ask them instead of waiting for them to tell me they needed to pass? It was like a microcosm of my southern-bred polite girl life. I think the trail isn’t the place for that! I am also pleased as punch that I never fell down! These trails were tremendously technical (remember, we were runners not mountain bikes!) and I came close to falling many many times. I am grateful I didn’t (but of course I would have gotten back up and persevered!).

Our Gulf Winds Track Club singlets have the word “Trailahassee” on them in small print.

That small print got magnified in the prism of my own sweat this summer.

I am glad we spent the summer together, TRAILAHASSEE.

trailahassee