Many of us Boomers are caring for aging parents, but nobody seems to talk about it. Maybe we don’t like to contemplate the foreshadowing of our own mortality, or maybe society deems it to be selfish complaining. Yet if the subject happens to come up in a Boomer conversation, then everyone has their story. Some of them are happy, a few are sad, and all of them share our frustrations.
I wish it was easier for us to talk about it. If we could all feel more comfortable about sharing a little of what we’ve learned, then maybe it’ll be less frustrating for the next person who starts this journey.
In my case, I’ve learned that there’s a reason when my “just write it“ is harder than usual. Most weeks the posts leap off the keyboard and I’ll have three or four in the hopper. Some weeks I’m barely ahead of my self-imposed deadline. Usually when the words aren’t flowing, my brain is still working on a problem. The mechanics of writing– drafting, organizing, cutting, and formatting– help me clarify my thinking and figure out what problem I should try to solve.
Yet there are still times when I’m just tinkering on the margins: tweaking the peripheral issues because I can’t solve the main problem. But at least I can write about it. Here we go.
My Dad’s health has taken a turn for the worse. After several weeks of invasive tests, he’s been diagnosed with “low-grade lymphoma consistent with Waldenström’s macroglobulinemia”. That means his body’s making too many white blood cells and not enough red blood cells. It’s also creating too much immunoglobulin, which makes the blood very viscous and leads to other complications.
WM lymphoma is rare, but the oncologist seems pretty confident in the diagnosis. The biopsy shows exactly what types of cells are present and what condition they’re in. Only 1500 cases are found every year, but the techniques are getting better and there may be more cases out there. One of the first problems we’ve encountered is that there’s not much on the Internet, and patients tend to be highly dependent on what little experience the doctor has accumulated from these rare occurrences. If you or a family member have dealt with WM lymphoma then I’d appreciate learning more about how you handled it. And if you’re a website entrepreneur then let me know when your “WM lymphoma discussion board” is ready for my post.
Dad’s main symptoms are anemia and fatigue. There’s also enough pain for this tough guy (who never even takes ibuprofen) to need a Vicodin prescription. Alzheimer’s makes it much more difficult for him to handle the situation. There’s no cure, but it’s a slow disease that can be “controlled”. Treatment starts with least six sessions of chemotherapy at three-week intervals using cyclophosphamide and rituximab. Dad’s nearly 78 years old so he’s not a candidate for other procedures. After the chemotherapy they’ll keep monitoring his blood parameters, because the doctors can only tinker around the margins of the real problem without solving it.
The fatigue & pain must be pretty severe, because Dad has always avoided doctors and he hates being a “lab rat”. However, the short-term trauma of chemotherapy may slow the cancer’s long-term progress enough for him to “feel better”. After he and my brother had a long discussion with the oncologist, Dad agreed to try the chemotherapy. However, Alzheimer’s patients aren’t always capable of giving informed consent, and Dad may change his mind after the first infusion. My brother and I will help him cross that bridge if he comes to it. Dad’s medical directive is clear and it should be straightforward to carry it out.
I’m 4000 miles away from Dad while my brother is just down the street, which is why I’m handling the finances while my brother tackles the daily life issues. (Frankly, it takes a family. The whole challenge of caring for an elder is too much for one person– even if one of the caregivers is retired– and at times the emotional burdens are just too much for anybody.) I know better than to second-guess the front-line decisions from my rear echelon, and I help my brother carry out the plans after he and Dad have made their choices. Ironically, however, I tend to get the caregiver phone calls because most of the questions involve money.
Thankfully Medicare and health insurance have treated Dad very well. His emergency ulcer surgery (over $50,000) was completely covered by Medicare (and his supplemental insurance). Medicare and his insurance have also completely covered his physical rehab at a skilled nursing facility (~$9000). Prescriptions are Medicare D coverage but amazingly, Dad’s retiree benefits include Medco insurance. (His blood-pressure medication only costs him a $4/month copayment.) Our biggest “financial problem” (aside from the long-term care insurance claim) has been tracking down all the policy numbers and getting them to the right people. After my first month of flailing around it’s been taking care of itself.
But chemotherapy is a new situation. When Dad and my brother made the decision, the oncologist said he’d set up the first infusion. They’re still waiting to hear the date. However, the lab started getting ready, and their first step is a prescription for an anti-nausea medication. Dad will take three capsules– one on the day of the infusion and the next two over the next two days.
Each one of these capsules is rumored to cost $250.
Chemotherapy pharmacies have no financial sense of humor. Their customers are always in a hurry but their products are hugely expensive. The pharmacy won’t ship today and invoice next month. They may trust Medco but we have to pay up front, and a three-capsule Emend prescription has a $180 copayment.
The “problem” is that we’ve let Dad’s credit cards expire while we pursue conservatorship and guardianship. (I’m not sure that a credit-card company would keep Dad’s accounts open anyway.) He’s been paying all his bills through a Web service, but small businesses (like pharmacies) usually don’t handle electronic transfers. It takes a week for a Web billpay service to snail-mail a paper check to a pharmacy, and the pharmacy won’t ship until the check clears.
So once again, to keep things moving I ponied up my credit card. The probate court’s “Conservators Manual” frowns on conservators reimbursing themselves from their ward’s accounts, and they require written reports to show where the money’s been going. In this situation, however, I’d rather bicker with the probate court than the chemo pharmacy. At least once the chemotherapy schedule is set up I can keep $180 on deposit with the pharmacy.
Meanwhile, after eight months our lawyer has finally filed the guardianship & conservatorship petitions. (That process is a subject for another entire post.) The court’s independent evaluator has visited our Dad and heard the right answers to his questions. We hope to have the (uncontested) hearing before the end of the year. We still don’t know if I’ll have to be personally present for it, but the options of Skype or a pre-recorded phone call were mentioned. Hopefully I’ll be able to phone it in and receive the legal authority of an appointment letter before 2012.
Until then I don’t have any solutions to the copayment cashflow issue. I’m not posting this for help or pity. But if you’re expecting to care for an elderly parent then you’d better have the financial arrangements in place. If you don’t have joint accounts or powers of attorney, then you should have at least a $5000 “emergency” fund standing by while the legal process grinds away.
There may be other financial issues. One effect of lymphoma is amyloidosis — the excess buildup of proteins in the body. It’s possible that this may contribute to Alzheimer’s, which is a buildup of proteins in the brain. This correlation is speculative and years of research will be needed to confirm it, let alone figure out if it can be treated. But if Alzheimer’s is ever found to be caused by a medical syndrome like cancer, then it could become a pre-existing condition which would not be covered by long-term care insurance. My father’s care facility charges $214/day and will probably raise their prices by at least 5%/year. They’ve earned it, too– we’re hugely grateful for their experience and alertness at finding this problem in the first place. If Dad was still trying to live independently, even with in-home assistance, then the lymphoma may never have been discovered. But the care facility might be unaffordable without insurance.
Another speculation is that lymphoma may have an inherited genetic trait. If this ever becomes subject to identification through DNA testing then families can be ready for it, but they probably won’t be able to buy insurance for it. Of course genetics is just a loaded gun and the environment (or lifestyle) pulls the trigger, but I doubt that insurance companies are willing to take the bet.
Thanks for reading this, and a big thanks to everyone who’s already written me. I hope this helps someone who’s confronting their own elder-care situation, and I’ll keep sharing what we’ve learned. If you have any lessons to pass on about lymphoma with Waldenström’s macroglobulinemia then I’d love to hear from you.
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