what a week!

Where to begin??  Perhaps I should try to organize by topic…

1.  Blaine

Through the continued navigation of the personal care bureaucracy, we ended up with some very good news: rather than slightly over 1 hour of personal care per day, it turns out Blaine qualifies for a bit over 3 hours of care per day, five days a week.  I still feel like I am in a dream and I will wake up and find out it’s not really true.  If it is true, this is revolutionary!  It means Francesca could provide more than just daily bowel care and a load of laundry a day.  It means she can help him get organized, keep up with his paperwork, help navigate all the bureaucracies that remain, monitor his equipment/supplies/medications, help him make a weekly meal plan, skin and foot care, etc. etc. etc.  

Do you realize what this means?????  Well, of course, first it means I still don’t believe it.  After nearly 30 years of caregiving, to have this kind of assistance seems too good to be true.  Marie’s next goal:  start to believe it and don’t immediately switch into anxiety mode about when it will be taken away.  Let it mean life is good!

After continued reminders and re-reminders and cajoling and pleading, the medical equipment place finally actually placed the order for the new seat cushion to replace the one that caused Blaine’s latest pressure sore.  Have almost completely lost confidence in them.  Realize daily nagging might be necessary from now on to get them to take action, as in submit the durned order already.  What?  Don’t they want to sell stuff?  Isn’t that how they make their living?  I just don’t get it!

2.  Marie’s health

Okay, so this was a week that my health got almost as much attention as Blaine’s.  I got one of those dreaded “suspicious mass” letters following my mammogram the week before, and was directed to make an appointment for a repeat mammogram and an ultrasound.  At first I wasn’t really that worried because I know that there are lots of false positives in mammograms and everybody seems to err on the side of caution these days (thank goodness). But since I was told to make appointments for both a mammogram and an ultrasound, I figured that couldn’t be too good.  It must look more suspicious than usual.  And then, in my quiet moments, I had to admit that all breast cancer stories likely begin with that letter, so once in a while it occurred to me that this could be the first day of a new way of life for a while.

My mammogram had been particularly painful this time.  More than I could ever remember.  When I left, I felt I had been tortured and texted Ric that we needed to meet at our local favorite dining spot for dinner so I could have a drink… and I NEVER do that. Well, hardly ever…

So when I went in this Thursday, I was a little worried, but did my best to keep a positive attitude.  The tests began with a pelvic ultrasound (because I’ve had polyps in all my colonoscopies, the doctor told me this is a necessary test because some people with a family history of colon cancer also have higher rates of ovarian cancer).  So I left work and arrived at the clinic with an uncomfortably full bladder.  To distract myself while waiting, I read an old celebrity fluff magazine…something about whether Katie Holmes is her own person or a robot controlled by Tom Cruise.  Sorry, can’t remember the conclusion…

Anyway, the pelvic ultrasound was pretty rough, kept trying to imagine myself at Mt. Bachelor in the poster tacked to the ceiling above me.  So happy when it was over and I could pee.  Whew…

Then on to the mammogram… this time it didn’t hurt nearly as much.  Was it the different technique in the person operating the machine?  Not sure… Anyway, she took a photo of my right breast, took it to the radiologist, who ordered another view.  She took that one, took it to him.  He wanted yet another.  By this time, I figure my breast will be glowing in the dark for the next month…

The radiologist examined the third picture and said I was all clear.  They had been unable to produce the same “suspicious mass” no matter what they did…  so it must have been one of those things that happens on a mammogram sometime. Cool with me!

So I came home and collapsed on the couch, sleeping through the local and national news… Ric got home and I could tell he had been more worried than he had let on (as had I), so we spent the evening snuggled with our pups in front of the big tv, our favorite place lately.

3.  Work

Getting back in the groove more as I go into the office more days a week now, prepping for returning to full time the week of April 21.  I get a lot of work done at home, but definitely don’t feel as connected to the people I work with, which is not a good thing.

The best news is that I walked to work one day, and biked to work another day.  Nearly  froze my ass off in the morning stretch of the bike ride, but the return trip was under a gloriously sunny sky.  Replenishing my vitamin D stores.  But holy carp, did my butt and entire body hurt!!  

4. Life:

Highlight of the past week was going to the Bruce Springsteen concert last Friday night… So love seeing someone my age still rockin the night away!  He’s the boss and always will be.  And his new music is wonderful… at least as good as the older stuff I love so much.  That’s a photo from my iphone above.

The best part was that all three of us got to sit together.  Usually, one person gets to sit next to Blaine in the wheelchair section, while the third person has to sit elsewhere.  Somehow, someway Ric arranged to get three tickets together.  It was so much fun for all of us to be together… And I just couldn’t sit still during Born to Run and Dancing in the Dark…

Feeling increasingly calmer, much less stressed.  Loving my hubby and son and pups.  Need to allow myself to be here now, not worry so much about tomorrow.  

 

the stress that remains:

that would be the bureaucracy.  yes, it would.  beginning with the months and months it took to get this caregiving in place.  it was about 5 months ago that we found out blaine qualified for 25 hours of care a month.  about 6-1/2 hours a week.

it didn’t start until last week.  why?  because the system gave us incorrect information, led us down the wrong path, the process would grind to a halt whenever anyone inside the system went on vacation, extra layers in the process that really made no sense… and so forth and so forth.  

dealing with the system is probably the most difficult part of having a disability.  yes, more difficult than doing bowel care.  

here’s an example, written the day I decided I was ready to take on the system last week: 

So today I decided to tackle an issue that has been weighing on my mind for months.  As you know, Blaine uses a catheter to self-cath every four hours to empty his bladder.  He uses an extension tube so it will reach to the toilet.A few months ago, the medical supply place started substituting a new brand of catheters.  Because they were cheaper, I’m sure.  But they didn’t work with the extension tube.  It sometimes took Blaine half an hour to get the catheter to stick to the tube.  Even then, it often popped off while the urine was running down, which meant it got on his clothes.  Imagine how he felt… no wonder he puts off cathing way past his due time when he’s not at home, no wonder he creates so much dirty laundry!

But they told us it was the only catheter insurance would authorize.  So I knew I needed to go to the office (that used to be an independent medical supply business before they got bought out) and get it straightened out, but of course they are only open when I’m at work. Since we have been waiting for almost two weeks to get the prescription for the DuoDerm we use for pressure sores, I needed to go in and try to get that worked out while continuing to buy the stuff out of pocket.  (First, the doctor called in the Rx to Walgreens.  When we get there to pick it up, they tell us Walgreens doesn’t do DuoDerm, we have to go to a medical supply house.  I ask if Walgreens can transfer the Rx to the place on Burnside we use, they say they will, but it gets completely screwed up and is lost forever.  So we’ve have at least 3-4 faxes going to the doctor’s office about the DuoDerm Rx over the next few days, the doctor swearing he had sent at least two faxes in response, me emailing and calling, etc.)  After dealing with it for about 45 minutes today, I still don’t know if it’s fixed, and I am still buying them out of pocket.

Then we moved on to the catheters.  I got her to get an extension tube and a catheter like they’ve been supplying and asked her to show me how to make it work.  She tried and tried and couldn’t get it.  So then she got an extension tube that is sold to work with that new brand of catheter.  She brings it out, and I say, “This has latex in it, doesn’t it?”  She said yes, and I reminded her that Blaine has a severe latex allergy so he couldn’t use it.So she searched for extension tubes without latex and found there is only one, made by the company we had been using.  (Yes, I know, that’s why we use it!) So then I asked her to please change the order so we could go back to the catheters that work with it (made by the same company as the tube, of course).  The computer system would not let her do it.  She called customer service, and they said it couldn’t be done, we could only get the cheapest catheter.  You can imagine where my blood pressure is at this point…

Finally, she got the top muckety muck in the office to come over to her desk, this person had the secret code to get in and override the system.  So she changed the order… but then I asked it it would last for the next month’s order.  She said probably not, so then she went in and added a bunch of notes to try to make it stick.

All told, this took more than 1-1/2 hours.  I was so exhausted afterward I could hardly take a step.  I now can see more clearly the effect this all has on me.  First, I am taken down by the knowledge that Blaine doesn’t even have the proper equipment to cath with dignity.  No wonder he has so much dirty laundry.  I feel so guilty because I don’t have the time or strength or energy or whatever it takes to deal with this issue for months.  My son suffers greatly through my inaction and/or incompetence.  I finally work up the strength and courage to deal with the system.  I have no assurance whatever that it will stay fixed.  And the next time someone hands down a mandate that cheaper equipment must be substituted, we will go through it all over again… How will we survive?

Every single system we deal with is like this…  remember how Blaine has this pressure sore now, caused by the new commode chair?  The one with the seat I warned the sales guy would be a problem for Blaine.  And he said if it is, we’ll get a different one… That’s fine, buddy, but are you going to come over to our house and do wound care on this sore that has kept Blaine down and out for three weeks now and is still not healing…

This was the cause of my two hour nap today, and I am still tired…

This won’t ever end, will it?  No wonder I feel like I’m turning into an anarchist!

and so it begins…

I’m not exaggerating when I say that my life is undergoing a transformation.  You could say the first phase lasted 28-1/2 years.  I hope the next phase lasts at least that long. So I’ll cut to the chase.  

I’m hesitant to say it out loud for fear of jinxing it, but it looks like I’m going to have some help with Blaine’s personal care starting next week.  It’s been a long strange trip.  Please may it have a happy ending. 

I wonder if my friends have been noticing that over the past couple of years I have been slipping into something like a, well, perhaps an abyss.  Maybe when I’m not there, they say to one another: have you noticed how tired marie has been looking? or do you think marie is okay? she doesn’t seem like herself lately… or wow, it seems like marie has really been packing the pounds on, wtf is going on with her? 

These are things I might have said to myself had I had more courage.  Or strength. Or been less, uh, well, depleted is the best word I can come up with.  I mean it’s not like I didn’t notice none of my clothes fit anymore.  It’s just that without feeling it was something I could deal with, maybe it was just too much to actually confess it to anyone.  Maybe I have been afraid to admit this level of caregiving is taking a such toll on me that I am not strong enough to keep on keeping on.  But what is the alternative?  They have all looked either too scary or just plain unattainable. 

And there’s this:  the plain truth is that it takes so much stamina, so much energy, so many assault-survival skills to go about making changes that it’s usually more than someone in the midst of caregiving can imagine taking on as an additional chore (or rather, full time jobs). But once again, my dear friend Jane came to my rescue.  When I didn’t have enough leftover strength or courage to initiate accessing the bureaucracy that might provide us some assistance, Jane did.  She made the call.  The one that finally resulted in a case manager being assigned, her visiting our home and interviewing Blaine, and determining that Blaine is eligible for 25 hours of caregiving a month.  That determination was made last December.  Now it is March.  Finally we have hope this will actually begin to happen. 

But I’m getting ahead of myself.  First, you need more of the backstory…