Caregiving Chronicles: Difficult decisions and bad hospital TV

I’m sitting in a dimly lit hospital room next to a sleeping mom (Ho-Ho). She’s just been transferred from the neuro unit of one hospital to the acute rehab unit of another.

It’s like Groundhog Day ’round these parts; two lesions in four months. ER to rehab to home…and back.

Multiple Sclerosis is an asshole.

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$650 for a flat screen rental or two weeks of copaxone shots. Take your pick.

For all of my ranting and raving about the price of car keys, gas, milk and cup holders, I know it’s just money. Some of these items are a luxury (i.e., a beeper key thing) and I could choose to not get them if I really was that offended. Or be a better planner and not lose/break them in the first place.

But get this. I just received a quote from a certain DC venue for our upcoming press conference. A hard line Internet connection is $250, wireless hand mic is $170 and a 50′ flat screen rental is…$650! Can you believe this? I know I sound like an old woman posting two consecutive entries about the cost of things but something is seriously wrong here. I just checked online and found a 50″ Samsung LCD for $532. To keep in my tiny basement forever. Or I can rent one for an hour for $650. I was told that is a “reasonable rate” for the area, but I think that is just crazy talk. Seriously crazy talk.

Want some more crazy talk? No, it’s not about the plastic bags once again hanging from the trees outside (though you know I already called my boy Proco Joe Moreno AKA Ward 1 Alderman about them). How about all the work we put into getting Ho-Ho on Copaxone and she is unable to give herself the injections. Clearly I don’t fault her, but I am still frustrated. The nurse sent out by the pharmaceutical company (for the second time) told me that Ho-Ho tried to inject the top of her hand today. “What if she hit an artery?” she asked. “Can you imagine? “I can and it’s a horrible visual. She also asked Ho-Ho where she tried to inject herself yesterday (she ended up injecting the rug) and mom first pointed to her hand and then her arm. She couldn’t remember. And she forgot about the dry-erase picture put on her fridge labeling injection sites for each day of the week which means we risk her injecting herself in the same spot twice in one week – a big no-no in the subcutaneous injections world.

I had the privilege of calling Ho-Ho to give her the news that the nurse “doesn’t think this will work out” and as you can imagine, it didn’t go over well. It actually went over the opposite of well. She yelled at me and told her she can do it with no problems and that I have no faith in her. That she “just won’t take any drugs then.” That will really show me. I told her that the Copaxone-paid nurse has a vested interest in keeping her on the drug and is telling me that Ho-Ho can’t manage it because of her short-term memory problems (I was obviously a bit more diplomatic in my delivery.) But because she has little insight into her disease, we ended up going in circles.  I could hear my voice rising and realized I had to end the conversation (my new project is to stop yelling over my mom. Noble isn’t it? Ugh.) I called the nurse back and gave her a heads-up about the shitstorm headed her way and will sit and wait to hear back from the neurologist. I feel so powerless. Like I have to do everything, but can’t do anything. That doesn’t necessarily make sense; I just wish I could talk to her sometimes and that she listened…not just heard me. I also wish she would listen to herself. But as good ole Eleanor Roosevelt said, “It takes as much energy to wish as it does to plan,” so here we go again.

Another MS treatment option is Avonex, but Ho-Ho is vehemently opposed to it for no apparent reason. Funny that she is now such a proponent of Copaxone after being against it for so long and not doing any additional research on the drug. So after our “child development” class tonight I plan on jumping back on the research wagon. As of now, all I know about Avonex is that it is intramuscular injection that is administered once a week and can be given by the in-house nurse at OPA. I will be administering a steady stream of white wine to myself as I look around the Interwebs for side-effect horror stories. Cheers.

It’s a March Madness Miracle!

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.

Bow and arrow always trumps loperamide

This weekend was an eventful one. Met up with some old friends, painted a bit more, shopped and oh, went to the ER after Ho-Ho decided to take 22 Imodiums in 24 hours. That made Sunday something special. I of course sympathize with her plight; no one wants stomach problems for an entire day. However, a massive dose of Imodium doesn’t seem like the answer. Perhaps a call to an MD would be a better option, but unfortunately Ho-Ho likes to live on the wild side. And that meant a call to poison control and an adventure at Rush Oak Park ER.

The last time I was at an ER was this past January when we went during a particularly painful bout of bursitis. Swedish Covenant has a fireplace in the lobby, private rooms with closing glass doors and ….cable! Apparently this is not the norm as Rush offered none of these amenities. But they did boast a wild spitter with a panache for vulgarity…brought in courtesy of the Oak Park police. For five hours, while Ho-Ho’s heart was being monitored (apparently loperamide — Imodium — can cause a sudden and very dangerous drop in blood pressure and heart functioning), we were privy to the spitters complaints and rants while the nurses shuffled in an out of our curtained space doing everything possible to avoid eye contact and answer any questions regarding Ardie’s status. We had an incredible time getting anyone to talk to us and though plastic bucket chairs may be economical, they are not friendly to backs…especially pregnant ones. I did snag a comfy chair for about 15 minutes, but then an MD took it for the rest of the day. Seems about right.

Throughout our entire stay, Ho-Ho maintained that the dosage was a necessary one and that she was fine. After an EKG, about a zillion bathroom breaks and lots of other beeping machines were hooked up to her for five hours (did I already mention that? FIVE HOURS!), I found out that she was apparently fine and dandy. The sensitive, pony-tailed MD barely spoke to us, and when he did, told me that we should call her PCP tomorrow. I asked if she should avoid an diuretics life caffeine – he asked me what I meant. Very reassuring.

Upon departing, she was one IV bag of fluid richer and I was on the edge of going bonkers. When I got home, I talked to my favorite castanet playing (do you play them?) neighbor Jeff who informed me that his cousin has shot himself in the neck with a bow and arrow earlier in the day. I didn’t think things could get any worse on Sunday, but for our hunter friend, they did. I guess it was some necessary perspective. But, I did lock up the Imodium.

**5/26/10 update – Another round of waiting room tours and MD visits has taught us to never take Maalox and Imodium simultaneously as they counteract each other in the worst possible way. You can take up to six Immodiums per day (she looked at me as if that somehow made her ingesting 22 reasonable) and that doctors love to make you wait over an hour to tell you something simple. So there you go. No harm, no foul…except for the spitter.


Today Ardie Ho-Ho and I took a trip to the Rush Oak Park MRI center. It has taken a year for me to convince her to go. She is certain she is allergic to gadolinium (contrast), which is unfortunate because:
1)  it is the one true marker that helps MDs track her disease; and,
2) she is not actually allergic.
A new bit of the story came out today when she told me that the last time she had an MRI with gadolinium, she couldn’t speak spontaneously, however, she could write out a sentence and then read it out loud. Obviously.

So after much pressure, and some Benadryl as pretreatment, she took the plunge. Don’t worry, she can speak, but, the tech did ask me if she was wearing a wig. Why, you ask? Because the outline of her skull was glowing. Like the corona of the sun, glowing. I said no to the wig, but she certainly uses hair products by the bucketful. “Ahh”, said the tech said as she she scrolled through the images showing various layers of Ardie’s brain. I told Ho-Ho outside about the weird scalp glow visible on the MRI and she waived it off with a “Can we stop at Walgreen’s? I need more conditioner.”

*** 4/7/10 Update: MD reported no real changes in her condition between 2009 and 2010 – which is great news. Maybe the conditioner is the key.