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

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