Though it goes without saying, even only casually being involved in ongoing caregiving for a loved one can be extremely challenging in part due to issues like disagreements with the person receiving care, decisions that have to be made, and the routines that must be established in order to try and have things run somewhat smoothly on a daily basis.
What I've talked about some in this series but not a lot are the external forces that you sometimes feel are working against you as you work to make sure the caregivee is getting what they need in terms of appointments, treatments, prescriptions, timely and important information, etc.
For instance, in an entry I wrote in January 2024, I detailed my struggles in trying to get a follow-up colonoscopy appointment set up for my mom, something that oncologists recommend be done as part of the normal post-chemo monitoring process.
READ MORE -->> Caregiver's Diary Part 9: 'Resting in the Moment' Is Being Put to the Test
To recap for those who are new to this series, the referral was made in November 2023, which was the one-year anniversary of when she had her colon tumor removed and which was nine months after her chemo treatments concluded.
Because of mom's age, we were told she needed to be assessed to make sure she was okay to go through another one. The earliest assessment appointment we could get was early January 2024, nearly two months out from the referral.
She was approved for the procedure but because ideally, they want patients to see the same doctor who gave them their original colonoscopy - and because mom's would have to be performed in a hospital - we couldn't even make an appointment because the doctor was booked out several months for hospital procedures, so far out that their appointment book had not even yet been opened up for that timeframe.
When I asked if she could see another doctor to get the colonoscopy done sooner, I was told "no" but that mom would be put on a waiting list.
To say that was completely unacceptable to me was like saying water is wet. Time is of the essence with cancer and possible recurrences, and I knew having this done sooner rather than later was extremely important.
It took me umpteen phone calls, voice mails, and emails before I was finally able to speak to someone who could give me the good news that Mom could be seen by her gastroenterologist at the end of the month for her colonoscopy, that they were able to fit her in on the calendar.
Fortunately, Mom got a good report. But on Monday, I was reminded of that situation from a year ago and a few similar ones we've dealt with since her colon cancer diagnosis all over again.
It revolved around a new prescription for her that we were told cost close to $500 for a 90-day supply. When I went to the pharmacy over the weekend to talk to them about whether GoodRx would offer a substantial discount (it looked like it did according to the website) I was told no, not even with a 30-day supply.
So I talked to the pharmacist directly about a somewhat comparable over-the-counter version that was a lot less expensive, and left the store, feeling very discouraged - and empty-handed. This was the first time since her diagnosis that we'd run up against this particular type of roadblock related to her care.
While it wasn't something she had to have, I thought of how many people out there had been through this and had bumped up against affordability issues with medicines they could not be without.
On Monday, I messaged the doctor's office and told them what happened, and in turn, they informed me that GoodRx was offering a good price on another version of this medication, so they called it in.
The problem was the price of the alternative version was also high, as I soon discovered. When I went to GoodRx, though, and did some digging on both meds, I noticed a discrepancy in what they noted the prices should be versus what the pharmacy said they were.
I spent about 15 minutes talking to the pharmacy and I asked them to explain it to me. I was told I must have been keying in the specifics wrong (like quantities, etc.). But I wasn't. In the end, I got a 30-day supply of the original Rx that was called in at an affordable price.
After all the back and forth between Sunday and Monday over the medication, my mom looked at me and apologized for "being so much trouble." I told her caring for her is a privilege and that she's not the problem. It's the periodic instances of having to check behind other people, all the follow-up emails and phone calls, etc. that are the problem.
In general, we've had good experiences related to mom's care, but when there are problems there are problems, if you know what I mean, and it practically takes an act of Congress to get them resolved. I realize problems are part of life and that we all get busy and make mistakes, but some days the problems just hit harder than others, you know?
SEE ALSO: To read my previous Caregiver's Diary entries, please click here.
