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

Taking a Stand for Our Future

Social Security Advocacy

My level of worry about retirement financing is high.

I left a job of 20 years voluntarily in 2014, ready to “find my bliss.” Within three weeks my father-in-law moved in with us due to his health issues and bliss-finding was put aside. As we adjusted to a new normal of being a one-income family, I chipped away at my 403B until there was very little left.

I am responsible in many ways for the conditions that led to my elevated worry level, but it “is what it is” and I now have to plan for the future. If this chart is reliable, I can expect to live to be 80.8 years old. That’s approximately 30 more years in which I have to find resources to live on.

How Will Social Security Factor In?

I have been working since I was 16 (shout out to Spires IGA, my first official job), and I have been dutifully paying into Social Security ever since. Currently, 9.3 million of my fellow Floridians are paying into Social Security too.

Here in Florida:

The average benefit check is approximately $1,240 per month.

Of those receiving benefits, 27.2% rely on Social Security for 90% or more of their household income and 51.6% rely on it for 50% or more of their income.

While my spouse has State of Florida retirement, I will probably outlive him (he is six years older than me) and need the reassurance that in addition to any residual benefit I get from his retirement, Social Security will still be there for me. Any reduction, especially the 25% reduction that could become a reality unless our Senators and Representatives act, is a problem. Details below:

Social Security Advocacy

It’s Not Just About Me

Florida is home to more than 4,114,745 Social Security beneficiaries.

$56 billion comes in to Florida each year for Social Security payments.

Every $1 received generates $2.10 of economic output.

A strong Social Security program benefits the Florida economy as a whole. 

Social Security Is Not Prepared for the 21st Century

If our Presidential candidates, Senators, and Representatives do not act, Social Security faces a nearly 25% benefit cut in 2034, as I mentioned above (a bit more detail below also).

Social security needs to be updated for the 21st Century.

AARP’s Take A Stand

AARP has launched Take A Stand, a national campaign to press the presidential candidates to lead on Social Security and give voters real answers about how they’ll keep it strong for future generations. If our leaders don’t act, future retirees could face an automatic benefit cut of nearly 25 percent every year, after 2034 (source: The 2016 Social Security Trustees Report).

If a 25 percent cut went into effect today, it would reduce seniors’ income, push more Floridians into poverty, and reduce money available for basic needs like food, healthcare and utilities.

The Best Places To Do Your Research

Take a Stand, which is nonprofit and nonpartisan, is working hard to help us get educated about each candidate’s position on Social Security.

At the Take a Stand Site you can:

  • Research each presidential candidate’s Social Security-related platform
  • Explore the Congressional Action Chart
  • Watch video clips of candidates addressing Social Security Issues

You can follow Take a Stand on Facebook here and on Twitter here.

We don’t want to be left hanging; it’s up to us to elect the candidates who will advocate to keep Social Security strong, for us and for future generations.

Social Security Advocacy

Sinking Our Teeth Into Eldercare Dental Issues

When we returned from our family trip to Orlando on April 4, one of the first things Dad said was “I need to see a dentist.” (My father-in-law lives with us due to medical and cognitive issues that make it impossible for him to live alone.) He was complaining of a toothache. It was the beginning of a crash course in eldercare dental issues.

For the past decade (probably longer), his approach to dental issues has been to get the offending tooth pulled. Apparently he has never been big on dentists (family history says this is an understatement).

He has had these extractions done at a place called Affordable Dentures, which basically does two things: 1) extracts teeth and 2) prepares/installs dentures. No other dentistry (cleanings, fillings, etc.).

We have already done this drill once in the time Dad has been with us, so I called the extraction dentist first thing on Tuesday. They did not have availability until the following Monday. I made the appointment but asked them to notify us if there was a cancellation. It was clear his pain level was already uncomfortable (which is saying a lot for someone on constant percocet and fentanyl). We tried other options:

  • Seeing if a family member in a nearby town had a personal relationship with a dentist. That wasn’t an option because he is apparently difficult to get into. She suggested oils such as tea tree to relieve his discomfort.
  • Calling his PCP, who suggested a local dental clinic. Their first opening was in late May. Not an option.
  • Asking my friend who has a connection with the VA about options with the VA. He gave me a name (even having a name is a start!). That individual said Dad would have to be in the system, which involved paperwork (of course!) and the potential of a longer wait while he qualified.

That left……..waiting. Anbesol. Liquid motrin on top of his usual pain relief. Trying to find things to eat that wouldn’t be irritating or exacerbate the pain.

The Saturday morning prior to the Monday appointment, he woke up extremely disoriented. He refused to sit in his chair, choosing the couch instead, which sounds like a small thing but for an individual who has sat in the same exact place pretty much every day for two years, it was … odd. I had to leave for a commitment so told my husband, who was still in bed, that I didn’t think Dad should be left alone in the living room given his disorientation. When my husband came out, he noticed what I had completely overlooked: the fact that the side of his face was grossly swollen. There was going to be no waiting for Monday.

My husband took him to the ER. At the ER, they examined him, did a CAT scan to make sure his circulation in his brain was still okay (the incoherence was troublesome), rehydrated him, prescribed penicillin, and told him to keep Monday’s appointment for an extraction (and to reassure the dentist that he had been on antibiotics for 48 hours). The bullet dodged for the time being, Dad came back home and we waited for Monday, thinking a simple procedure on Monday would take care of everything.

Very Few Details About Eldercare Dental Issues are “Simple”

I was so relieved when Monday rolled around. The swelling in Dad’s face had gone down a bit. On Sunday, Wayne and I discussed how he had to take a shower to deal with how he smelled (he is not a consistent daily showerer … a topic for a different day). Wayne had him take a shower, but Monday morning you could barely tell; the smell persisted.

We got to Affordable Dentures. When we made it back to a treatment area, the assistant pulled his x-ray from his visit almost two years ago. When the dentist arrived and started reviewing that x-ray, I reminded him that it was not an x-ray that reflected his current status. They had him do a new panoramic x-ray. Once Dr. Amundson started looking at that, and I explained that he had had radiation for neck cancer early last year, he explained that this was not going to be the case of a simple extraction.

He explained that with an infection that appeared to have spread beyond the tooth/teeth involved, an oral surgeon needed to be consulted. The oral surgeon would not necessarily do surgery but would be better able to evaluate the connected anatomy (the neck musculature, the lymphatic system, the components of the mouth, throat, and neck that could be affected).

We left dental stop number one, headed home, and waited to hear from dental stop number two.

On To the Oral Surgeon

We got home, I gave Dad his pain medication that he was due for, ate a bit of lunch, and heard from the oral surgeon’s office that they could see us at 1:20. My husband was not able to leave work, so it was going to be Dad and me (as it had been that morning). The oral surgery office called to review the price for a consultation and x-ray. I am sure they do this partially so that patients are not surprised, but I appreciated the customer service and knowing what to expect.

We arrived at the oral surgeon, and what I had started the day thinking would be a simple extraction rapidly escalated into a much bigger and more complex issue.

Having heard that Dad had been treated with radiation to the neck area, he explained (after the general observation that all of his teeth were in horrible shape, something no one disagreed with) that ideally part of the pre-treatment briefing for the neck cancer would have been a discussion of dental health. This is because once you radiate the jaw area, the bone is much less prepared to recover from dental procedures. In addition, Dad is on a steroid for blood pressure/balance issues, and steroids exacerbate this bone/healing issue. He said many patients choose (or are advised) to have all of their teeth out before radiation treatment. Since Dad is one year post-treatment, we had missed the window to pursue that option. (I was not at his pre-treatment briefing, so I can’t confirm if it was discussed or not, but clearly he did not opt to have his teeth taken out and I am sure that possibility was not discussed).

He then began discussing measures you can take to try to preserve the jaw once it has been treated with radiation. These include HBO (hyberbaric oxygen) dives to force the blood flow to improve. At the point the conversation turned to “without this very expensive dive treatment there is a possibility he will lose his jaw due to necrotizing fasciitis,” I asked to get Wayne on speakerphone. (Pro-tip: the word “dive” does not transmit well via speaker, especially when the recipient of the call started the day thinking all that was needed was for a tooth to be pulled.)

Eldercare Dental Issues

Oral Surgeon’s Office

When the conversation was over, the dentist took a more extensive look at the x-ray we had brought from dentist number 1, said the bulk of the immediate problem appeared to be in the top four teeth on the right, and proposed taking those four teeth out, there in the office.

I am not sure if this write-up is conveying the dizzying speed with which this progression was occurring. Even though Dr. Bower was explaining everything well, part of my head was back at “you should have had the teeth all taken out before the radiation,” part of my head was at my own berating myself that “you should have made this man do better oral hygiene over the last two years,” part of my head was “what on earth can we do today to quell this infection and save his life?”. Oh, and as had been the case on Saturday with the ER visit, a part of me was praying we didn’t get reported to eldercare services for neglect. Honestly.

The dentist said no amount of “proper oral hygiene” could have prevented the situation we found ourselves in. That was a relief.

As I said, he decided he could take the four teeth out that were causing the immediate infection. That’s when I discovered that (warning: this is gross) the smell we had detected was not a lack of showering, it was the putrid smell of facial infection. Gross.

The dentist administered a lot of novocain and let it take effect (prior to that his staff administered a lot of paperwork and the price tag escalated far beyond what we expected at the start of the day). When he came to extract the teeth, things got, um, dramatic. I can only imagine how uncomfortable this was for Dad, even with the anesthetic. Due to the infection, he could barely open his mouth. Being in a dental chair is especially hard on him due to his back issues, and everything about it (the suction, the people in close proximity, the physical pressure of it all), was overwhelming, He sounded like he was miserable. At the point that the oral surgeon considered stopping (I think dad’s mumbled words around the suction appliance were “you’re killing me”), and we discussed our options.

Being “just the daughter-in-law,” I really wasn’t sure what to advise. I was torn between wanting to make sure Dad fared okay and the certain knowledge that he would be so much better off having those four teeth out, that going under general anesthesia would carry risks for someone in his status, and that removing the source of the infection was critical. I essentially said, “I know he sounds bad but I think if you can get through it here, you should.” This is where, honestly, I invoked the last tool I could think of. I prayed without ceasing to the spirit of my late mother-in-law to calm him down and allow this procedure to be completed. It may sound weird but I was out of other ideas.

She must have done her job because the procedure ended (yay!) with four teeth gone. We remained at the office until it closed so they could keep him under observation. They prescribed a different (more powerful) antibiotic and scheduled a follow up visit two days later.

The Follow Up

The morning of the follow-up visit, Dad said “I have a dentist appointment today? Let’s cancel it.” Ha! Not likely.

At the follow up, which Dad passed with flying colors (this man amazes me in his physical resiliency despite his cognitive issues and general lack of interest in the positive points of life), the oral surgeon informed us that our next step should be to secure a regular dentist for dad. (Dentist number one from Affordable Dentures is not an option because, like I said, he only extracts/puts dentures in. The oral surgeon is essentially a very highly skilled pinch hitter, but is not the guy for routine care or to develop a long-term plan.)

He needs a dentist who can:

a) Evaluate his dental health

b) Evaluate the effects of the prior radiation and its impact on his dental health

c) Determine if HBO treatment is needed

d) Extract the remaining teeth when his mouth/health are ready for that

We need to pursue the administrative parts of this. Will his insurance cover any of it? Medicare? His supplemental coverage? Will the VA cover it? If he needs HBO treatment and they the VA has the facility for that (and he is physically capable of tolerating it), getting it “free” from the VA would be far preferable to a price tag that could approach $60,000.

One of the biggest challenges was the fact that dad’s neck/back pain make so many procedures uncomfortable. The dental chairs, being hard, made his lower back hurt. All of the manipulations (the panoramic x-ray, the handling of his head to get him in position, etc.) exacerbated the chronic pain which never goes away.

The Takeaways

Cancer treatment can have long-term effects long after the actual treatment takes place. Radiation affects more than the area being treated. Ask all the questions. Do your own research so you know what questions to ask.

One small symptom can lead to a domino effect. If you are a caregiver, keep that in mind. As Dad’s pain increasingly grew, and the wait for a dentist dragged on, it became increasingly more difficult for him to swallow, so we stopped giving what we considered the “minor” meds in his medication protocol. We mainly gave him his pain meds. In retrospect that explains why his blood pressure was high when the oral surgeon’s staff checked it and why, behaviorally, he was so taciturn. (I understand being taciturn after more than a week in oral pain and having 4 teeth extracted, but I mean a particular kind of uncooperativeness and combativity as I tried to get him to comply with post-procedure care.) His antidepressant had been one of the things we deleted due to the difficulty swallowing. The difficulty swallowing undoubtedly also led to the dehydration, which led to the incoherence. Everything is connected — meds, food and fluid intake, routines. Fortunately in our case none of the omissions created a life-threatening issue but it was an important reminder.

Medical professionals need to be prepared to deal with patients who have cognitive issues. Everyone we dealt with in this situation handled it pretty well, but you are likely to get partial answers and have a patient who is easily agitated. This is not going to be easy for the professional, the patient, or the patient’s family members. Aftercare, also, is going to be a bear. Dad had gauze he was supposed to bite down on to staunch the blood, and he kept chewing it (which he was not supposed to do … swallowing it could create an impactment in his gut) …. when we gave him the medicinal mouthwash and instructed him not to swallow it, but to spit it, he swallowed it three seconds later … his memory is not sufficient to comply with even simple instructions sometimes. 

The oral surgeon (Dr. Daniel Bower of Oral and Facial Surgery Center of Tallahassee) is the only medical professional we have dealt with in the last two years (and there have been a lot of them) who looked at my husband and at me and said, “and how are you doing?” Now, we weren’t going to give him the long version of the fact that eldercare is stressful but at that moment I could have kissed him (or whatever the appropriate reaction would have been). It took maybe ten seconds for him to say something compassionate that reflected the fact that these situations affect the whole family, not just the patient. I was floored and grateful. And I just wonder why none of the others take the time to do that.

One of the persistent challenges of eldercare is the fact that you are so busy doing eldercare, it’s hard to find time to chase down the resources that can help you figure out how to be more effective at eldercare!  I can’t say I have personally taken advantage of them yet, but here are a few that come highly recommended:

Alzheimer’s Project, Inc. (local to Tallahassee)

Elder Care Services, Inc. (local to Tallahassee)

AARP’s Home and Family Caregiving Resources (national)

Creative K Kids

National Family Caregivers Month #BeKindToCaregivers

Back in the spring, when my father-in-law was at the Tallahassee Memorial Cancer Center every day for weeks as he got radiation treatment for throat cancer, one little tiny “treat” I looked forward to each day was taking a puffy peppermint candy from one of the ubiquitous candy containers placed strategically throughout the center. I always took it a little surreptitiously, grabbing it one-handed and somehow slipping it out of the wrapper and into my mouth while simultaneously pushing a wheelchair (because if there’s anything mothers of young children and caregivers of elderly people learn, it’s how to do multiple tasks despite highly occupied hands!). Such a small thing, but a tiny moment in each trip which felt like “mine.”

Who Is Doing All This Caregiving?

There are 40 million unpaid caregivers in the U.S. Many caregivers, like me, are boomer women, often sandwiched between the needs of their parents and their own kids. A popular misconception is that caregivers are paid medical professionals, providing full-time care to someone in need of daily help, when in reality, most caregivers are family members or friends who are also working and managing their own families at the same time.

For many, the caregiving role starts with simple things like scheduling a doctor’s visit or helping with daily errands, but gradually expands over time, until it becomes a major commitment in their lives. For our family, everything changed in June 2014 when my father-in-law was hospitalized for a subdural hematoma which occurred when he fell. Returning to living alone (even with the amount of support we had been providing with daily visits) was out of the question.

This video describes some of the challenges faced by unpaid family caregivers:

Almost three in ten people who are caring for someone say their life has changed with caregiving, oftentimes for the negative. More than one in five say their weight, their exercise, or their social life has/have suffered.  Emotionally, one in five say they are generally unhappier and one in three say they feel sad or depressed.  That’s why AARP created a community where caregivers can connect with experts and other caregivers and can find information and tools to take even better care of the person who once took care of them.

Candid disclosure: I participated in the National Family Caregivers campaign last year, promoted the benefits of the AARP Community, and wrote how I would be “digging in.” I have not dug in. One of the biggest challenges of this caregiver life, to me, is the fact that there are lots of great resources out there, but it takes time to track them down and research them. It feels like a catch-22.

How You Can Help

There is something that you can do during National Family Caregivers month to support a caregiver in your life. On behalf of the Ad Council and AARP I am asking for your support in helping to raise awareness of the Caregiver Assistance campaign through the Random Acts of Kindness for Caregivers initiative which aims to recognize and support unpaid caregivers in the U.S. The initiative, which is kicking off this month, encourages all Americans to perform an unexpected “Random Act of Kindness” for a caregiver. By starting a nationwide movement, we’ll raise awareness of caregiving and caregivers while at the same time reaching caregivers directly—helping to alleviate some of their daily stresses and reward them for their ongoing support.

I’m going to share what I did, because if it brightens the recipients’ days even a quarter of how it brightened mine to do it, then brightness will abound!!!

One Idea

As I tried to decide what to do, several ideas floated through my mind. I thought about my fellow caregivers I passed going to and from treatment at the Tallahassee Memorial Cancer Center, about how I could possibly sit in the parking lot, wait until they had taken their patient in, then sneak a note and small gift onto their car. But, being a caregiver myself, I have to be a little strategic about when I can leave the house and I wasn’t sure how much time all that stalking would take (I’m also really bad at being sneaky!).

I contacted our local Elder Day Stay (candid disclosure #2: contacting Elder Day Stay to explore it as an option for my situation has been on my list too, one of those “when can I find time to do this?” things so I was killing two birds with one email stone.) Vicky from Elder Day Stay was such a delight to exchange ideas with. After thinking through the kinds of things my experience as a caregiver led me to believe they would like, I chose these items to include in goodie bags to be distributed to caregivers at pickup from Elder Day Stay:

Recognizing Family Caregivers

A Sharpie because a) I love Sharpies and b) a Sharpie was a great fit for the verse I had planned. (It turns out the caregivers at Elder Day Stay have to mark the participants’ belongings with Sharpie so this was a win-win for all!).

Recognizing Family Caregivers

A fragrant hand sanitizer because one of the universal truths of caregiving appears to be: bodily functions will always be involved. I want them to at least have a sweet smell to mitigate the less fragrant aromas. I love the “give thanks” sentiment! Once Cam and Shanelle at the Governor’s Square Bath and Body Works learned what I was doing, they gave me 30 bags and 30 pre-cut ribbons to use for these treats, as well as fantastic attitudes! I am grateful.

Recognizing Family Caregivers

A chocolate bar because a) these caregivers deserve a treat and b) I needed a bar of some kind to fit in with the verse I had planned. I thought about getting something healthy (protein bar, fiber, blah blah blah) however I wanted these people to have a small but decadent treat!

I wrapped it all up with this verse, with information about the AARP Caregiver Support site included:

Recognizing Family Caregivers

Here’s the final:

Recognizing Family Caregivers

Recognizing Family Caregivers

Whose Day Can YOU Make?

Is there someone in your life or community who is serving as a caregiver that you can do something nice for? It doesn’t have to be complicated or expensive, just a small gesture that makes a caregiver’s life a little easier.

After you choose (and do!) your random act of kindness for a caregiver, please share your story with AARP. If you submit a 150 word or less summary of how you made a caregiver feel special along with a photo, you’ll be entered to win a cash prize from a $10,000 pot. (Note: the contest lasts through March 15, 2016, but Thanksgiving would be the perfect time to get the random act of kindness ball rolling!).

You could make the tiny bit of “me time” difference those Cancer Center mints provided me!

Recognizing Family Caregivers

Recognizing Family Caregivers

This is a sponsored post on behalf of Element Associates and Midlife Boulevard.

Is It 4:30? A Caretaking Dilemma

clock

really hope I had pressed the “mute” button like I thought I had.

If not, my new boss and coworker heard a side of me that does not make me proud.

You see, I had scheduled a conference call at 3:30 p.m. last week, knowing that I needed to be completely wrapped up by 4:30 because I leave the house every day like clockwork to take my 85-year-old father-in-law to the bar.

I am happy to take him to the bar at 4:30 every day, knowing how much he values time spent with his buddies.

What I am not happy about is the fact that “his” 4:30 is wildly more erratic than mine due at least in part to the cognitive changes related to his strokes and other medical issues. This is my caretaking dilemma.

Back to the conference call day: Even though we had discussed the “4:30 plan” (as we do every day) before I went into my home office and closed the door to take the call, there he was at 4:00 pushing on the door (against which I had placed a heavy object to keep the cats out). I excused myself from my coworkers, (hopefully!) pressed the mute button, and asked what he needed.

HIM: “Are you ready to go to the bar?”

ME: “No, it’s not 4:30.”

HIM: “You said 4:00.”

ME: “No, I didn’t. I said 4:30.” (not uttered in my most patient tone of voice)

HIM: [insert angry harrumphing]

ME: [insert slamming of door]

I am not proud that I was so abrupt in how I said “I said 4:30.” I am not proud of slamming the door. I am not happy that my train of thought was disrupted from the conversation I was holding with my co-workers and as a new employee, I am a bit worried about what they think.

The “4:30 skirmish” plays out almost daily.

I know compared to many caretakers with whom I am acquainted, this is a small battle compared to many all-out wars they face. We don’t have to cover the mirrors yet so he isn’t alarmed by “that man in the mirror.” He can still take care of his basic self-care needs independently.

But I suspect the “4:30 skirmish” is a prelude to more daunting hurdles.

Our family is among 42 million Americans for whom the roles have changed. Children are parenting parents and bewilderment abounds. Like this family, convincing a depressed 85-year old to eat presents as big a challenge as does a finicky five-year-old:

During National Family Caregivers Month, I have hope because I have discovered resources for education and support at this site from AARP.

I wish I had read Prepare to Care (a Caregiving Planning Guide for Families) before we became primary caretakers five months ago:

Fortunately, I know there are many other helpful resources at the site, and I am going to be digging in.

But not at 4:30. I have a commitment ….

“I’m pleased to partner with Midlife Boulevard to bring you this important public service information about National Family Caregivers Month.”