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!


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