Recorded in the beautiful home office of Chateau’ Relaxo Florida. Tonight it’s time for my thoughts on elder care.
This topic is a launch off from Episode 172, Remembering My Father.
I make jokes all the time about how Florida is God’s waiting room, but in reality, the whole country is God’s waiting room as modern medicine is keeping us alive longer than ever before.
My dad had been struggling with declining health over the last 15 years. It started with prostate cancer, then came insulin-controlled disabilities, and then Parkinson's diagnosis.
His decline really began in September 2020 with uncontrolled bleeding. After a two-week hospital stay, I rolled into the Braselton, GA hospital parking lot where the nurse met me in the parking lot to help me load my dad into my car….. No conversations with doctors or staff, just my dad and a manilla folder full of papers. Thank you, COVID.
My dad was now diagnosed with bladder cancer.
Over the next 20 months, my dad had several lengthy hospital stays. Then throw into the mix our mother who is on oxygen and suffered a life-changing fall in 2019.
Also in 2019, the CEO lost her father after a several-year health struggle. Between the two of us over the past five years, we’ve learned a lot about elder care.
With my dad, there were a handful of things that I had no idea about and I had never asked about.
First I’m not a lawyer, so spend some time and some dollars with one just to get answers to some common questions.
What documents do you and your family need?
* Is there a Power of attorney in place? If so where is it?
* Do you have or need Authorization to Release Medical Information to Family members? If so where is it?
* Are you a signer on their bank account? You’re going to need to be.
* Do they have a DNR? I have often joked about having DNR tattooed across my chest. Here’s something I learned. I always thought DNR meant no heart-lung machine, no being in a coma and having to be fed through a tube…. Etc. No, no, no…. On the surface, it can mean no CPR. So make sure you’re clear on their wishes and what those wishes actually mean.
* Where are their wills? Is it an original signed in blue ink? Do you have copies of it?
There are questions and conversations that no one thinks to have during those holiday get-togethers. As my therapist told me, these are the conversations no one wants to have at 2:00 AM in the hallway of a hospital or across the country via Facetime. I wish he had told me this 3 years ago.
In early 2021 my dad was in an extended hospital stay so we relieved him of the responsibility of having to pay bills. At the time this sounded like a great idea until I realized that he had all the passwords to all websites in his head, and my mom had at most two passwords, one of which was thankfully their email.
I spent a solid two days visiting websites selecting “forgot password” and then hoping that his email account would get an email with a reset password link.
Once I had a pretty good grip on websites I did two things, I created a Google folder that was shared with the family, and then I created a Google sheet with all the login information. Sixteen months later I am on version 20 of that Google sheet.
The next thing we had to do was figure out his medicine. Yeah, he knew what he took and when he took it but no one else did. This made it extremely rough on his first hospital visit when my mom handed the hospital staff his pill box with no accompanying instructions.
Once we got what pills get taken when straightened out we took pictures of each pill and created a Google doc with the picture of the pills and a description including the milligrams.
We created a page for breakfast pills, afternoon pills, dinner pills, and bedtime pills. We printed them out and the CEO had them laminated and anytime he went to the doctor or hospital those pages went along with him. The medical staff was very appreciative.
One thing that I did learn is that prescription pills are marked with codes which means if someone keeps their pills in a pill organizer you can look at the pill and find the markings then head over to drugs.com where you can look up the markings. Also if a pill has a score or indent across it that means the medicine is distributed evenly in the pill and it’s safe to cut in half.
Here’s another medical tip… if you want to verify everything with the doctors, you might need a power of attorney or a completed medical authorization form.
Thankfully his doctors were well acquainted with us by this point.
We had a virtual meeting with my dad's neurologist. She oversaw his Parkinson's treatment and his medicine regime. She asked me on the appointment how his tremors were, and I replied that there hadn’t been any decrease, and she was surprised as the medicine should be suppressing them. It turned out that he was taking his Parkinson's medicine with food and not 30 minutes before a meal as it was prescribed.
The takeaway is to make sure you know not only when medicine should be administered and under what conditions. Similar to the “Do Not Operate Heavy Machinery” warning label on the side of your anxiety pill bottle.
Also if a parent or loved one uses some sort of a medical device or monitor make sure you know how to use it.
Case and point - One night my dad broke out in a cold sweat and his eyes rolled back in his head. It was at that moment that I realized that I had no idea how to use his diabetes blood sugar testing kit. I’d seen him use it, but I had no idea. After a few stressful minutes on YouTube I figured it out and yes his sugar had crashed. The next day I took pictures of the whole blood testing process, created another Google document, printed it out, laminated it kept it with his blood testing kit.
And here’s another reason to verify medicine administration. My dad was injecting himself twice each day with insulin, yet he only tested his blood sugar in the morning. Often times he was causing his own sugar crash. A quick phone call to the doctor outlined his insulin regime, which was printed out and also laminated.
When you have someone that’s older and medically fragile someone will eventually mention Hospice. Possibly a friend, another family member, or even a doctor. That’s what happened to us, In August of 2021 my dad's doctor suggested that we get in touch with hospice. At the time my only experience with hospice was with the CEO’s father. He was admitted into hospice and three days later he passed away.
As you could imagine I was a bit hesitant since my mother and dad had both walked into the doctor's office under their own power. But there’s much more to hospice than just those final days, there is something I shall call long-term hospice. This is where you turn your medical support and guidance over to hospice.
One thing I haven’t spoken of is that my mom is also medically fragile, with congestive heart failure, and is on oxygen 24/7. She was in no condition to care for my dad’s day-to-day needs.
Last August 2021, we admitted my dad into hospice and for the next 11 months, there was a daily visit from the hospice attendant that bathed him, changed his clothes, and even changed out his linens. There were weekly visits from the hospice CNA that took care of medicine refills and monitoring his vitals Throw in a social worker that took care of making sure my dad had things like a hospital bed, shower chairs, and a wheelchair.
Some days the visits were less than 30-minutes due to what I call my dad having a good day, and other days visits lasted longer. It gave me a piece of mind knowing that there would be someone eyeballing them each and every day.
Now with hospice, you have to cease life-extending or life-prolonging procedures or medicine. With cancer that usually means stopping any sort of chemotherapy. With my dad, he was taking what amounted to oral chemotherapy, and oh yeah it was experimental.
Just like I’m not a lawyer, I’m also not a doctor but I know with medicine there is something called a half-life which equates to how long it takes for the medicine to get out of your system. In the case of my dad's oral chemotherapy, the half-life was about 20 days. By mid-September, my dad's health improved immensely. He no longer needed a walker, he was getting out of bed on his own and was occasionally fixing his own breakfast.
In my non-medical opinion, it appeared that his experimental oral chemotherapy was killing him. Months later a hospice nurse told me off the record that when they first saw him she felt that he wouldn’t make it till October. So yes the pills were killing him. However, hospice provided an extra 10 months with him.
Here’s a tip, when you call the oncologist’s receptionist to tell them that your father will no longer be a patient, no one bothers to call you back in order to question the decision. That should be a sign.
The hospice nurse also told me that there would be peaks and valleys with his health, or as they call it rallies. And we saw right up till his passing. At one point the pastor, whose wife is also a hospice nurse, told my mom that it would probably be best if I came for a visit. With “came for a visit” being code that this might be the last time you can see him. I arrived the next morning with my dad wide awake and hungry, this was 6-weeks before he passed.
So don’t be afraid of hospice.
A few more things to consider.
Money
* What comes in?
* Is it just social security?
* Do they routinely draft from an investment account? If yes, how often?
* What goes out?
* Are there monthly subscriptions?
* Is there a second mortgage?
* If there’s an HOA when is the payment due?
* Having access to their bank accounts and credit cards can really help out with this.
* What’s being drafted
* Again, this is where having access to the bank and credit card accounts comes in real handy.
* I set everything up to be drafted that I could possibly set up. The only two payments I had to worry about were their HOA payment and the monthly credit card bill.
Paper
* When was the last time they filled a tax return?
* I found Turbo Tax CDs dating back close to 20 years that my dad saved.
* If possible get rid of as much paper as you can while they are still alert and still alive.
* I came across credit card statements from 1986. Mortgage papers from the early 1970s’. Side note our home in Palos Verdes, CA that I mentioned in episode 172 recently sold for 2.4 million.
* There can be some paper surprises as well.
* My dad's resume, various news articles about him, and birthday cards from family members that he had saved.
* I found my very first resume from 1990 that he had kept.
* My dad fancied himself a poet, even taking a poetry class decades ago. There were poems he wrote for all his grandchildren over the years
Going through his things was like opening a time capsule, bittersweet, but also at times enjoyable.
Things I didn’t know my parents really, really liked and used…. Maybe your parents are the same.
* Tissue
* There were boxes of tissues on almost every table and counter.
* If you’re doing their laundry, check pockets and be prepared for piles of tissue lint.
* Batteries
* Not sure if my dad was on some sort of an Amazon subscription service, but he had batteries for days.
* Sweat pants/pajama pants
* They love loose-fitting clothing.
* The weather, especially the temperature.
* My parent's house was air-conditioned and the roof didn’t leak. However, my dad made me install a rain gauge on the deck and replace his outside digital thermometer in the last 9 months.
* Knowing the time.
* My dad wore a watch all the time, and even when he became bedridden has was always fixated on the time of day.
* The other thing I ran into was this. If I told them I’d be heading home at 1:00 PM, it’s an 8-hour drive back to Chateau’ Relaxo, my dad would ask me to do something, or go to the store at 12:50 PM.
* Books
* I can’t remember the last time either of my parents read a book, but there were books everywhere, and they did not want to get rid of any of them.
Thinks to look out for
* Their sense of smell begins to diminish.
* Check the fridge for rotten food and expiration dates
* Medicine expiration dates. !998
* Driving
* As we age our reaction time decreases as well as our memory, hearing, and vision.
* Thankfully taking the keys away was easy, due to the struggles my dad had with his father as Grandpa continued to tool around Rock Hill, SC in a 1976 Buick creating havoc and minor fender benders.
* This loss of freedom did lead to frustration for both of them, but thankfully family and their neighbors became their poor man's version of Uber.
More things I never know about my parents up until the last few years.
* They have an amazing sense of pride, more so than I ever knew. My parents always relied on their church family for support, but over the course of the last two years, they were reluctant to ask church members for help.
* Don’t remember what day of the week it is, or remember to take their medicine, but they easily recalled where some out-of-the-place restaurant is.
* I am a realist, and I knew where things were headed. For lack of a better term, I wanted to minimalize their home in preparation for a move as caring for themselves became harder and harder. At first, they were defensive, they didn’t want to donate that Corningware dish that they haven’t used for 25 years. After a frustrating weekend of this resistance, I asked them, “Will you allow me to do this for you?” This worked and suddenly there was buy-in and after multiple multiple, multiple trips to Goodwill, the mission was accomplished.
I consider myself a fan of Lifehacks, but these are some Carehacks that I’ve come across in the past 2+ years.
* Puppy pads or what we call Chuck pads
* As we age we begin to make more messes, who knew? These pads help to absorb liquids etc. Throw one down on their favorite chair cushion and it will help to keep it looking good as well as smelling fresh. Also, Fabreez and those .99-cent air fresheners do wonders.
* Blanket on the bed.
* If you have someone that is for the most part bedridden they become very difficult to move. Even if you’re strong like a bull you could still find yourself having to move 160 lbs of weight around in the bed. Before they lay down, throw a blanket across the bed. Now you have fabric hanging out underneath them on both sides making it easy for two people to grab the blanket and easily reposition them. Avoid grabbing their arms or legs to do this as dislocated hips and shoulders aren’t fun for anyone.
* Handrails.
* We discovered this early on while my dad had some strength left. Amazon sells handrails for the bed that fits between the mattress and box spring.
* Showering
* A shower is a great place for a fall. We installed garb bars that made entry into the shower easier, but you can also remove the shower doors making entry and exit out of the shower even easier. Shower head holder.
* Getting rid of old medicine
* We talked about expired medicine a few minutes ago. While it’s tempting to flush expired medicine down the toilet, just ask the Florida Meth-Gators, don’t do it. Place the meds in a ZipLock bag and then fill the bag with dish soap and then throw the bag into the trash.
* Food
* In the case of my dad after a 6-week hospital stay, he had lost a considerable amount of weight and muscle atrophy had severely set in. We concentrated on protein. Lots of chicken and protein shakes, and we let him eat whenever he wanted because we now had his blood sugar under control once we understood how his insulin needed to be administered.
* The other thing that my dad suddenly developed as well as my mother was a desire for sweets. Growing up we always had a bag of cookies in the house, but they now had several bags of cookies, plus ice cream and some candy bars.
* Clothing
* When you are bedridden changing out a shirt is a big deal. When you’re bedridden with a tube in each kidney it’s a major deal. Here’s a tip, take an old t-shirt, and on the back of the shirt cut a slit right up to the neckband, this one little trick makes changing their shirt a breeze.
There you have it, for what it’s worth, my thoughts on elder care.
If you want detailed show notes, links and pictures head over to podpage.com/travel-stories/
Leave a message onAnchor, or shoot me an email atTravelFrick@gmail.com.
As I always say, travel safe, stay safe, and thanks for listening.
