Been a busy week or so. Saw Dr. North November 20. Physical progression not terribly fast but noticeable, most especially the swallowing issues. Doctor gently presented the reality of there being cognitive issues to Glen, that it happens in about 10% of cases, etc. [For those of you keeping score.. that means in the entire country there are about 3,000 cases of ALS with FTD] I'm not sure Glen really understood it all, but at least it was coming from the doctor. We increased his Celexa, his liver numbers are good enough to stay on the Rilutek for now, and his other meds remain the same. Doctor North is also trying to find a Kaiser psychiatrist with an interest or background in neurology to add to the team. We will see Dr North again in about 10 weeks.

Same afternoon, we saw Shannon, the respiratory therapist. Trial 3 with the BiPAP. This one seems to be going well but that's what I thought the first time. We'll bring the machine back in the morning. Even if they DID get good data readings this time, we have to order the machine so who knows how long until he actually gets it.

Monday we saw Belen, the speech pathologist. No real changes there, just reminders to eat and drink slowly. She also brought up the feeding tube... an idea Glen is absolutely against. He was strongly opposed even when he was more present mentally, so we'll wait and see but at this point I'm guessing it won't happen.

Spent Thanksgiving at Glen's mom's house. He was wearing a bulky sweater so the weight loss wasn't terribly obvious, and he pretty much sat on the couch quietly. When there's lots of activity swirling around him he tends to become more quiet (unless it involves South Park or Loony Toons... or Disneyland of course.) And I made a point of cutting his food extra small with lots of gravy so swallowing wasn't an issue. I think there are some people out there that think I'm exaggerating about the progression of Glen's symptoms. Wish I was.

Last night we had "2nd Thanksgiving" with Sharon & Kev & Rushi & Rush's brother Akshay. Turkey, dressing, cranberry sauce.. the whole 9 yards. Very yummy, and official holiday leftovers for dinner tonight. Thought it was going to be a little crazy with all 4 dogs in the house (my two and Sharon's two schnauzers) but they were GREAT. They played all day, and even the two puppies (Baron at 20 months and BeBe at 6 months) were surprisingly careful around Glen.

Hope you all had a wonderful Thanksgiving, and now.. onward to Christmas!!

Wow.. is it Thursday already? Week has gone by fast. Some demonstrations of Glen's tendency towards poor judgement made it a long week. Because he can't sequence he very much wants what he wants when he wants it.. which is usually NOW. It's hard for him to grasp that I can't stop in the middle of stir-frying to get him down pills that he doesn't need until bedtime, for example. And then there's the tendency to want to talk to every dog and/or small child he meets... all his good "doggie manners" about asking before approaching are gone. Going to get him either bit, or in trouble with some baby's parent, if Kev and I don't remain extremely vigilant. And the eternal vigilance is what is so energy draining... vigilant that he doesn't choke, vigilant that he doesn't frighten a child, vigilant that he doesn't approach the wrong dog.

Kev and I realized tonight that we don't get any quality time to just talk things through, because life is spent trading off. So I think some time in the future we will call on a nearby friend (yes, John S., that means you!) to come down and hang out with him for a bit so Kevin and I can reconnect.

Appointment with Doctor North tomorrow. Last one was 3 months ago... Glen was driving, running, riding his bike, going to work. Wow. Sometimes at night when I know nobody's there, I'll call Glen's work number because for some reason, they've left his voicemail message on there. It's startling how much his voice has changed.. but I call just to hear his voice.

Kind of an up and down day. Started off being awakened by my dogs, who were telling me "Dad's locked himself out!" Good dogs... Glen was in the garage, and the door to the house was locked. Then followed a conversation about him driving himself to church. It's a little frustrating.. he had the realization himself that he was unable to drive... but now he's forgotten that. Reinforces the need to keep the keys out of sight, and basically, need to keep somebody with him.

Then I had a little difference of opinion with our choir director. I've always felt he kind of brushed me off when I explained that Glen was sick. Today, in the middle of Mass, he was trying to rush Glen through some rather complicated harmony he somehow thought Glen was going to be able to do. Sent him an e-mail with some appropriate reading material. Grrrr. He responded with an apology, and the comment that he had no idea how far Glen's illness had progressed. Well gee, fella, you only see him EVERY WEEK. [alright. taking deep breath now]

So, ok, fast forward to this afternoon. Kev & Rushi were here, we were doing chores (including Glen). Then Kevin remembered there was a Loony Toons marathon on Cartoon Network!! So... lonnnnng break from cleaning. Time spent as a family watching cartoons and LAUGHING!! It was obvious Rushi hadn't seen a lot of them, which made it even more fun, and it was apparent that slapstick humor still has huge appeal for Glen! We even skipped some of the football in order to watch cartoons. Great fun.

And so ends our week off of doctor appointments. Physical therapy tomorrow, Dr North on Friday, as well as attempt number 3 with the BiPAP breathing apparatus. They say third time's the charm, so keep your fingers crossed!

Happy Wednesday. Busy past couple of days, trying to catch up with the things that decided to break while I was sitting with Mom or planning and attending her funeral. Garage guy is amazing.. second time we've had him out. He was here for about twenty minutes.... mayyyybe half an hour... fixed the opener, adjusted the springs (which he'd installed about 6 months ago), programmed the opener built into my Pilot, showed me how to program remote openers myself, and where to buy replacements the cheapest. (Home Depot)

Today, handyman came... fixed the door frame around Kevin's door (which Kev & Glen managed to break when the doorknob got stuck), replaced said doorknob, and installed a new deadbolt on my front door. Work was good, he went out and got the hardware so I didn't have to, prices were good. Yay. Kev & Rushi got the rest of the stuff from Mom's place out of my car, so tomorrow it can go in for its oil change while we go out to breakfast. Now all I need to do is get the heater fixed.

Got into a "disagreement" with Glen today about chips. They were making him choke.. he was continuing to eat them. Asked him if it was really worth it to eat the chips. He said yes. Sigh. He is adamant about not wanting a feeding tube, so really not much I can do except be ready with advice to put his chin down when he swallows, and a good heimlich at the ready. (OK, it's a lousy heimlich but it does the job.)

His "run" took him over an hour yesterday to do a route that normally takes 45 minutes. Turns out he was looking for someone in the park... not anyone he would really have expected to be in the park. Scared the daylights out of me but he's ok. Going to limit "runs" to mornings when his head is usually clearer, and see how it goes. Again that tightrope between his safety and his independence.

Physically, his arms are markedly weaker. He can no longer put on or take off his own jacket or bathrobe.. things that open in the front. Oversized, over-the-head shirts and sweatshirts he seems able to handle. Need to start looking online for elastic waist pants ... seen some that are still nice looking, but easier to get on and off. He's speaking less... hard to tell if it's because it's more difficult physically or if he's withdrawing more. Probably a little of both. Gait is more halting, and he's starting to trip a little more easily.

He doesn't like to talk about future issues, but when we were clearing out Mom's apartment, he suggested we keep the walker and the cane as well as the wheel chair. Not sure if he'll actually be able to use the walker, but use it or not, any equipment can then be donated to the ALS Association loaner closet so it's ok.

Guess that's about it for now. Take care all.

Not even sure where to start. Got through the rosary and funeral pretty well. It was stressful for all, more so for Glen of course. His "schedule" was turned upside down, and he couldn't keep track of me, Kevin and Sharon, to say nothing of being in strange places and eating at strange times. He was a trooper but it definitly took its toll.

For most of us, the rosary/wake went especially well.. Uncle Rich was in great story-telling form, which would set off a wave of associated stories.. good times. Don made a dvd of photos from Mom's life which was amazing. Sharon read her 3 am summation of Mom.. it was perfect. Afterwards, Glen went home with Kevin while I joined Sharon, Mike and others for dinner and a lot of laughter at Chili's.

Funeral (um) was (uh) nice. (Sorry.. kind of an in joke.. there were a few more um's and er's than there should have been). Instead of a limo, we had a party bus big enough for siblings, cousins, spouses, significant others. Twas a touch drizzly in Colma... which means by anyone else's standards, it was raining. Figures that the one time we request graveside instead of chapel at Holy Cross it's freakin' WET! Told Glen it was ok if he wanted to wait in the bus... did NOT have to bring it up twice, which was good. Don't need him catching a cold. Then it was off to Molloy's.. pizza, chocolate cake, beer, Irish whiskey, pool, singing... doesn't get much better.. mom would have been thrilled. When we got there, Don bought Mom a Manhatten and set it on the table. Last thing as we left, Shar and I split the maraschino cherry. Twas fitting!

Glen's obviously tired today. He was going to go to the Y for a bike ride... didn't take a lot to talk him out of it. He's pretty quiet and had one choking incident this morning.. happens more easily when his muscles are fatigued. Mostly spent the day watching football while Kev and I excavated for the kitchen, with some success I must say! Tomorrow, will work on finding more of the house.. luckily, lots of football on!

Is it really only Tuesday? We lost Mom early Sunday afternoon. The past couple of days are a kind of a blur. Funeral plans, cleaning out the apartment, trying to catch some sleep. Unfortunately missed a couple of Glen's appointments, but they're rescheduled for later dates.

Glen continues to take it hard. Even after mom died, while we were waiting for the mortuary to come pick her up, he came in a couple more times to kiss the top of her head. Tonight we were meeting with the priest who will be doing the Mass on Friday. Kev had to work, so Glen had to come with me. He was sitting behind me, and at one point I looked over and he was just sitting there crying quietly.

Tomorrow we have no appointments, no meetings, everything we needed to take out of the apartment is in my car (the garage door broke yesterday as Sharon and I were leaving for the meeting with the mortuary. cars currently have to live in the driveway. My Pilot's an amazingly tough car!). Barring any surprises maybe everyone can sleep in?

Wow.. long week with no end in sight. Not much new to report on how Glen's doing. His legs are a little weaker, and his lack of attention span has made it harder to work out the logistics with Mom but otherwise he's doing fine.

My mom is basically comatose, non-responsive. She's in her apartment, in a hospital bed, with round the clock hospice nursing and lots of pain meds and anxiety meds. One of us is here all the time. Niece Danielle has been able to take a lot of the night shifts, which is good because she is an RN. Long shifts make one truly appreciate ones own bed and shower!!

If Glen is here with me, he gets agitated after a fairly short amount of time.. will check the halls for Sharon or Kevin or whomever is not here that is on his mind. We have it set up so he can watch TV in the other room but he comes out about every 10 minutes, kisses gramma on the head, then goes back in the room.

It's hard on him when he demands to go home and I have to make him wait. It's hard on me when he demands to go home and I take him but I don't want to leave. Kevin's been amazing but he has school and work and I don't want him letting any of it slide. Going to contact his doc tomorrow and see if we can raise his anxiety medication at least while this is going on.

We've all said our goodbyes (more than once.) We've had it quiet, noisy, musical, tv on, tv off, buzzing with activity or quietly reflective. It's brought out the best and the not quite so best in many people.