It’s Thursday. Do you know what that means? Well if you don’t, it’s “take Ho-Ho to her doctor” day. What should be a one or two hour affair often turns into a five hour debacle. Ellis has to go along for the ride because he has very little say in his life. Luckily he seems to enjoy the trips as long as I stuff his mouth with puffs and bounce him up and down while making a fool of myself. Last Thursday we had to wait an hour just to see the PCP and both Ellis and Ho-Ho were happy-go-lucky while I scowled in the corner. Today’s doctor was mom’s new neurologist, Dr. Cohen. I love him because 1) he carried an old school doctor satchel with his initials embroidered and all, and 2) he told her, “If you think you are smarter than me, then don’t take this [disease modification Rx] medication.” Usually I would be offended if a doctor spoke to her in such a manner, but in this case Ho-Ho deserved it because she does think she is smarter than all doctors. Well, really everyone.
Remember last year when we had the MRI with gadallinium and Ho-Ho was sure she would lose the ability to speak? Because that is as common a side affect as walking out of an MRI machine with wings and a third eye? Well she applies the same logic ( = none whatsoever) when arguing why she should not be on any MS modification medication. It is incredibly frustrating to listen to her repeat, “I am aware of that, Annie”, when in fact she has no idea what she is talking about. She jumps from the drugs supposedly being black-boxed by the FDA (which they are aren’t), to their high costs…even though we know for a fact Medicare will pick it up. All the while I see her health slowly deteriorating and I feel powerless. It’s probably one of the worst feelings you can experience; watching a loved one refuse the treatment that could actually improve and extend his/her life. However, as much as I want her to be on these particular medications, I wrestle with my desire for her to maintain some sense of autonomy and independence in what amounts to a very controlled lifestyle.
We left the old neuro at Rush University’s MS Clinic because, according to her, he wanted her “to take that drug that will destroy her liver.” False. He didn’t want to prescribe her Prednisone because it exacerbates her psychological issues; is an outdated approach (they now give patients IV steroid therapy if they are hospitalized for a relapse); and, is a band-aid for people with MS and other neurological diseases. He, like the previous neuro in sunny Tucson, tried to persuade her to jump on the Copaxone drug train and questioned what he could really do for her when she refused treatment. I had no problem with any of his arguments, only with the fact that he is in such high demand he is almost impossible to reach. So with her made-up reasons why she should leave the Rush MS Center, Ho-Ho wanted to doctor-hop until she could find an MD who would give her what she wants: Prednisone with a wink and a nod. Fat chance.
Dr. Cohen nicely, but firmly shot her down and tried to coax her into articulating exactly why she didn’t want to try the drugs. She couldn’t. And once again I saw just how much this disease has destroyed her thought process. A woman with two Master’s Degrees in education struggled to assemble a coherent defense as to why she continues to refuse treatment for her disease. Where do I draw the line between bullying versus showing her the benefits of something? What if we choose a path on her behalf that ultimately ends up harming her? But she seems to trust this doctor and and we have to put our faith in his recommendations (especially when they echo past neurologists requests to try new medications.) So finally after a bit of haranguing and head-shaking by the doctor, and tongue-clucking and laughing by Ho-Ho, she relented. Well, I don’t know if she necessarily relented, but she did walk out of the office with the prescription in hand and a commitment to try it for a year.
It’s a bit of a process to start Copaxone as an RN has to visit and demo the injections, I have to coordinate with Medicare and we have to figure out a way for Ho-Ho to remember to give herself the injections in seven different places on her body each week. This is the most progress we have made in the six years I have been more involved with her care and I am optimistic it will keep her upright and talking crazy as long as possible.
When we returned to Oak Park Arms, she handed me a bag full of coupons, Nordstrom catalogs and a pair of used underroos. While I filled her pill box she ate dinner and came upstairs with a walker to say goodbye. Well, not her walker, mind you. She stole another red one and left her’s downstairs. It’s not like it has sparkly star wires wrapped around so you can easily identify it or anything. Our little thief, Ardie Ho-Ho.