Category: Life

My mom owes me a favor big time!

I went over there today, like I do nearly every day. Today she asked me to…

Break the spines on two of her books!

She owes me!

My mom, step-father, myself, my brother, and a woman from mom’s church met with a representative from hospice last Wednesday.

She was there for 2 hours. We learned very very little that we didn’t already know. The woman was not very organized. Actually, she was organized for a completely different kind of patient. Most people who they meet with have very little idea what hospice does. So she was expecting to explain that. She spent the majority of the time asking each of us what we did for my mom.

She only answered in a general way my mom’s questions, which she didn’t get to ask until nearly the end.

Mom has heard complaint of losing autonomy from other people in her support group. Nothing specific though. The rep answered this concern with of course you get to participate in all decisions. Which is not the answer my mom wanted to hear. She wants to know that she decides. Not that she participates. She came away with the impression that her choice if she disagrees with hospice’s ideas is to go with it or to drop out. Mom doesn’t want a repeat of the debacle that was the ALS clinic at Virginia Mason, where they argued with her over her refusal to take a medication.

A little interlude here. My mom isn’t getting that great of care for her ALS. Her MD is great but he doesn’t have the depth of knowledge in ALS. The situation is not really the fault of the doctors. My mom is choosing this path. She doesn’t want to see the specialists in Seattle. She is fighting hospice. She doesn’t want to go back to her RT. She fought the speech therapist. She doesn’t want an OT to come to the house. In short, she’s being difficult. (She’s not fighting everything though.) Now you know where I get it from. Although I think she’s making some bad choices, they are her choices. I support her right to make bad choices. I will not get in her face about any of them. Gentle persuasion or coaxing is the most I will employ.

She doesn’t want hospice because she doesn’t want to fight them, and she thinks she will have to. The rep didn’t create that impression, her friends in support group did. But the rep didn’t dispel it either. She was unprepared and unorganized, and her coming with a plan to talk about the things most people want to know with no backup just reinforced to my mom that they have a one size fits all way of doing things.

Her only specific concern to me about hospice is that she doesn’t want to take any medication that will sedate her or otherwise dull her awareness. I don’t think hospice will force her to do that, though there’s the possibility they will urge her more than she wants to be urged.

She’s going to ask the complainers at support group for more specifics, so we can clarify with hospice if these are really issues or not. But it’s three and a half weeks until the next meeting.

She says she’ll hire someone to help with grooming/feeding/etc. But she’s balking essentially at the nursing aspect.

Mom told me she felt like she needed to use the BiPAP machine last night. Not after going to bed. That’s been normal for 7 months. When she was still up. She didn’t because the thing isn’t very mobile. If she’s feeling like she needs it when she’s up, that’s a very new thing.

Tomorrow the family will be meeting together with some of the folks from a local hospice. Meet and greet mostly. Not sure if we’ll be making any definite plans at the meeting. The idea is for the family to get comfortable with the hospice and learn what they do. I read up a ton a year ago, so I don’t think I’ll be surprised by any of their services.

After having accompanied my mom on a number of visits to health care professionals, I’m really un-enamored of the field generally. Most have had a pretty poor bedside manner, despite good intentions. I’m including all operating issues except for the actual medical care in that category. Poor one-on-one communication. Poor follow through. Etc. And it seems like both my mom and I are more knowledgeable on the issues than a number of the ones we’ve seen.

The ones with the worst manner were the folks at the ALS clinic at Virginia Mason, who are also the most knowledgeable. The visits there were stressful for many reasons. There really aren’t any ALS specialists in any field up here.

I do want to publicly note a couple of really helpful folks up here. Dr. Dana Petersen at Lynden Family Medicine, although a general practitioner not knowledgeable about ALS, has done a bang up job getting at least to the level of information my mom knows, and he always takes the extra time to walk us through the pros and cons of the alternatives.

And Tim (can’t remember his last name) at Cascade Prosthetics in Ferndale has been wonderful, patient, and knowledgeable. He’s doing the brace that my mom wears to keep her head up. She can’t make her neck muscles do that anymore. He doesn’t know ALS specifically, but has about a billion ideas to try. I had done some research online into possible braces. I wasn’t too hopeful on any of them, and neither was he. But I didn’t want to leave any stone unturned. He brought out samples of those just to ease my mind. The brace my mom is using is made of plastic, but it is too pliable to hold mom’s head up very far. So he had a technician at their shop add aluminum bracing to it, and it seems to be working so far.

Anyway, that’s a bit of a digression. The point being that all the others have left me a little disappointed at least. So I really really want to meet the hospice folks, because they will be the most important professionals in the final six months. I’m hoping not to be disappointed but scared I will.

Normally, hospice steps in during the last six months. That may not be right now. It may be soon though. At this point it’s too early to tell. Mom cannot eat, drink, or talk. She can’t hold her head up. Her right hand is nearly useless though her right arm still has some function. She’s got some deterioration in the left arm and hand, but that is at least a few months behind the right in progression. That’s actually a bit on the encouraging sign to me. If it doesn’t strike both limbs at the same time, it means consecutive, which means more time in my head. She hasn’t really lost any use of her legs. What is most worrisome to me is she is having more trouble breathing (particularly exhaling). That’s what kills most ALS patients. Whether her breathing problems are the start of the ALS progression in that area, or something else, we don’t know.

I have mixed feelings on all this. I really don’t want her to die. Duh. But given that it’s going to happen as a result of ALS, at some point I want it to go quick. There’s some serious suckage involved with ALS. ALS is not a quick thing, even in the fastest cases. This is not like when Matt died, which was instantaneous. ALS is relatively, though not completely, painless. That’s about the only good part of it. You go progressively more paralyzed. Just as soon as you get things figured out at one stage, you have to redo everything. I don’t remember if I posted this, but my sister is pregnant. I’m hoping that mom lives long enough to be able to hold the kiddo. Due date is in September. Not sure when it’s realistic for him/her to travel to visit. I know that would mean a ton to her to hold him. I just hope it doesn’t suck too much along the way. My mom can, already has, handled a lot.

As for me, you can tell by reading this that I have some really serious grief issues going on. I’m depressed. I’m losing myself in books and light banter with the folks at the Black Drop, an awesome Bellingham coffee shop. All my friends have been awesome. I can’t thank you all enough.

I really wish I had a girl to curl up with who would just tell me everything is going to be okay. There’s been the opportunity, but it was just too hard for me to open up and be vulnerable with women I don’t have with whom I don’t have that existing relationship. (No, I’m not gonna make the grammar in that sentence make more sense.)

I’ve also kind of foregone much contact with all but the closest of friends when I’m in Seattle. That’s been hard, but it’s harder to deal with constantly repeating what’s going on with my mom. I don’t mind telling people, though if I did it might make this all easier. But I hate the repetition. I hate when people argue with me or give me advice I’ve already rejected. Jason says I should just say doing fine and move on cause people really don’t want to know, don’t know how to talk, and really just want that answer anyway. It’s not really my nature though to make okay when I’m not. I may try it his way yet.

My close friends know me well enough to handle me pretty well, so I’ve been sticking to them. Though even then sometimes things aren’t all rosey. I want to yell at them Do I have to explain exactly what I need? Can’t you just know? Which would be bad. There’d be hard feelings. Plus, part of the reason I want people to know exactly what I need is that I really don’t know myself. Really though, these folks have been great. I’m just fucked up.

Things I need to do; can’t say I’ll actually do them though:

• Try out social activities here.
• Find a counselor here.
• Get some exercise.

So yeah, that’s the dump. Doing about as well as can be expected given the situation and the shit I’m not doing that I should.

I love you Joe and Sara.
I love you Deirdre.
I love you Erin.
I love you Kim.
I love you Jason.

I love you mom.

As Stan Lee wrote, ’nuff said. (Hah!)

My mom’s right hand has become not very useful. However, she can still use her arm. So I ordered a trackball for her to use instead of a mouse. Overall she liked it. But it stuck horizontally, so it has to be replaced. The company sent one out, without hassle. It should arrive next week.

The tentative plan is to use the trackball in combination with a foot switch to replace the mouse button.

I took mom to the speech therapist this morning. She was supposed to help us organize the buttons on my mom’s dynavox (her speech device) so she could find them.

But the upshot is that my mom just doesn’t want to use them. It’s too slow, hard, and limiting. She wants to type or write. She’s wordy. Really really wordy. But she can’t type very fast already.

In a few months, she won’t be able to type or write. And she doesn’t want to use any other method. She already can’t use her right hand more than a couple of half hours each day.

Any photoshop gurus want to make a few bucks?

My mom wants to use the following photo of her for the stand-up photo at her funeral. Except she doesn’t want my step-father in it, cause he likely won’t be dying at the same time.

If you think you can do a good job of removing him from the photo (the large version, not the small version Scrapbook creates), please let me know.

Comments arguing for leaving him in the photo will result in immediate unfriending. It’s what my mom wants. I don’t want to argue it.

I wrote a 2006 Year in Review so here is 2007’s.

This year began fairly normally. My biggest focus was on mentoring. The first year mentoring program is one-on-one. But when the students are sophomores through seniors, it’s all small group. I had an incredibly great group of students in my group, and the mentors were as well. The groups disband at the end of the school year though. I miss my previous group, but the new group that started this fall has been awesome as well. And I really enjoyed volunteering at the freshman launch course, because several of the students I’ve worked with were Steps Up (a.k.a. student volunteers) there. It was an opportunity to see that they’d made something of themselves: more confident, more together, and able to set goals and have powerful relationships.

My big goal for the school year (everyone sets goals in the mentoring program) was to write a business plan for my bookstore. I was really up and down in my motivation though. In January I became incredibly unmotivated. But my business coach was pretty good in that regard and I pushed through it. I ran into a brick wall though on how to do a sales forecast without spending a ton of money on surveys. I never quite figured that out before things changed.

Work-wise, I didn’t do a whole lot. In 2006, I went from a high-powered job at Expedia to a low-powered job at Barnes & Noble shelving books. In 2007, I went from low-powered to unemployed. Barnes & Noble was a lot of fun, but when things changed, I couldn’t keep a regular schedule anymore. So the job went in June. But it was sure fun while it lasted.

Romantically the year started out hopefully. A long-time friend who I long have been attracted to reconsidered her rejection. However, she got scared off. Luckily we’re still friends.

I finally visited my brother Dan in San Francisco and spent a week with him and my nephew Victor. Victor is an awesome kid. Some kids have an innately smiley face. Victor though always looks worried. Dan and Brenda brought him up in November for Thanksgiving. He’s a smart kid, and he likes olives. He’s still willing to share though.

Late February brought the first signs of what would be the defining experience of my year though. Actually, the first signs were earlier, but because I wasn’t using the phone much, I missed them. My mom started having problems with her mouth in December. I didn’t talk with her from shortly after Christmas until late February or so, so I missed it. I talked with her on the phone around then though, and I thought she sounded like a drunk. She was slurring her words very badly. I was worried, but she told me it wasn’t any big deal and she’d tell me when the doctors had it figured out.

In April I got the word. Preliminary diagnosis was A.L.S. which was confirmed at the end of the month. That really threw me into a tailspin. I put my plans for a book store on hold, canceled dates, and holed up.

Watching my mom’s condition deteriorate has been the most emotionally painful experience I’ve had ever. In February it was slurred speech. Today she cannot talk except through a computer, and she doesn’t eat except through a tube. Her thumbs have lost strength, and the rest of her hands are following. She can’t hold her head up because she can’t control her neck muscles. Every new change makes me cry.

On the other hand, unlike when Matt died, I have plenty of forewarning. I didn’t get to see much of him since he was a kid because I’d been living in a different state. He in Washington me in Idaho. Me in Washington, him in California. And then he was gone. But as painful as it is to watch, I can spend lots of time with my mom. I started driving up to Lynden every one or two weeks. She and I went to Edward Scissorhands at the 5th Ave, and we both hated it. I got to help her raise money for the A.L.S.A. in September. And many many heartfelt thanks to all my friends who donated.

One other thing I want to mention is changes in my relationship with my family. Briefly, though. I want this year in review to be unvarnished, but not a source of drama. On one hand, I’ve become closer to my brother Joe. But things have become strained with my other brother Dan. Though there are hopeful signs.

In November, I started making plans to move north so I could help my mom. I rented a place in Ferndale, about 20 minutes from my parents house. Two days a week I’m in Seattle. Five I’m in Ferndale. So far that’s worked out quite well, though I have to say my Seattle place already doesn’t feel like home. Home is where the internet is.

I went on a few dates with Tamara this year before she headed off to be a sailor again. I spend a fair amount of time with my ex April in the beginning of the year as well. But I had a day of sudden reclusiveness and bailed on Folk Life with her (as well as other folks too), and she stopped hanging out with me after that. I also had my biggest fight with Jason in years. I stuck my nose where it didn’t belong, and he didn’t talk with me for about six weeks. We’re good now though. With Jason, I know that in the long run things will always work out. We’ve been friends for long enough, that even when we get mad at each other, we can forgive each other. Eventually. This time it was my time to fuck up. I did stop going to Losers’ Lunch regularly around that time though. It had nothing to do with Jason. It had become a social scene and less of friends catching each other up.

Those have been some down things things this year. Strangely though, other than the occasional crying spells, I’m really upbeat. My close friends have rallied, and I’m incredibly grateful. Thank you specifically to Jason, Kim, Erin and Deirdre. But nearly everyone I know has done something to help. The new year looks full of possibility. I’m looking forward to New Year’s Eve and the year to come. I feel braver than I have in years.

Christmas at mom’s.

She gave away her tea cups.

I can barely keep it together. Scratch that. I can’t keep it together.