Dogs don't belong on the roof.

My friend Shelley and I have talked about, when our adventures are over, writing a book to maybe help others with the journey of an ALS/FTD combined diagnosis. Today I found the title to our book: "Finding the dog on the roof... Living with ALS/FTD"

Went to church and Starbucks like we do most Sunday mornings. Now, you must picture my house.. a split level.. the second story bedrooms look out over the garage roof. As I pull into the driveway I glance up to see my 95 pound, 2-year-old Golden Retriever ON THE ROOF! Talk about another WTF moment! I get the car into the garage, turn off the engine and get upstairs in a time that I did not know I was capable of! Both dogs had gotten themselves locked in the bedroom.. only Baron decided it would be a fun adventure to go out the window! Poor Buffy was VERY stressed when I let them out. You could just hear her saying "This was NOT my idea!"

What, you may be asking yourself, does this have to do with Glen. Well, one of the symptoms of FTD is a disappearing sense of what is appropriate. So to Glen.. it's ok to walk into Kevin's room in the morning without an invitation. This morning, he did just that. When he saw that Kevin wasn't home, he neglected to close the bedroom door. While we were at church the dogs (probably following the cat) went into the bedroom. Most likely somebody's tail knocked the door closed. When asked about going into Kevin's room Glen said yup, he had. Later he left a full package of dog treats on the table and the pantry door open. Time for more baby latches and door knob covers.

Needless to say the whole experience kind of tap danced on my last nerve... especially when I realized after listening to the message from my neighbor that he'd probably been going in and out the window for at least 45 minutes!

So Glen has an actual psychiatrist appointment this week. Aside from tweaking meds, I don't really expect that there is much she can do. His brain is atrophying and that cannot be undone, any more than the nerves can be brought back to life. Stupid disease.

Just a quick post.. brain is still not functioning, and I know you're here to catch up on Glen! Will say that Michael's funeral was breathtaking in its scope and intensity. 79 police dogs: 2 Belgian tervurns, 1 giant schnauzer and the rest german shepherds including Michael's dog. A spontaneous high-pitched whine from all of them as the flag was being folded (Mike had once described this to me from another funeral he had been at... sends shivers down the spine, believe me!) Over 200 officers, blocks and blocks of squad cars with their lights flashing.. bagpipes, 21 gun salute, taps. Damn. I've never been saluted before.

Anyway, if anyone is interested, 2 funds have been set up for Mike's kids. The Michael McLaughlin's Children's Fund can be donated to at any Wells Fargo Bank. The McLaughlin Family Trust has been set up by the Foster City Police Department through Merrill Lynch. Donations can be made by phoning 925-945-4882.

Not a whole lot new from Glen's doctor appointment.. Dr North was honestly more worried about me, since we were heading directly to Mike's wake. Upped his Celexa again.. still have some room to up it if needed. He's kind of grumpy and needy today.. as i've said before, usual pattern after any event, let alone the intensity of the past week. Hoping for a couple quiet days for both of us.

R.I.P. Michael

Sorry I haven't updated... won't be much of one here either. Glen does have a Dr North appointment tomorrow, but I won't get that update posted until at least the weekend.

Last Sunday, January 10, my youngest brother died suddenly in his home. It was totally unexpected. Services are tomorrow and Friday. After that, I'm probably going to just zone for a couple of days. After that, I'll start trying to catch up.

Thanks for your understanding.

[before i go any further.. the shift key on the computer isn't working so please forgive the lack of appropriate capitalization!]

so.. sometimes i don't post much because there really isn't anything to tell. And sometimes i don't post because there are things to share but it's really hard going over it all. This would be type 2.... but I'm here now, so here goes:

glen's speech has taken a real downturn the past few weeks. not sure how much of it is dementia and how much of it is the physical toll of the als. his lips quiver most of the time, so i'm thinking it's largely the als. his legs are weaker. he continues to do his run/walk daily, but has greater difficulty standing from a chair. today, he had sat on the bottom step in the family room so he could pick up the remains of a branch Baron had been chewing on. i glanced over and he was sitting there looking at me like a lost puppy... asked if he was stuck, and with a little pouty lip he said 'yeah.' i was able to get him up without much difficulty... luckily I learned a lot of handling/lifting tricks while our grandmothers lived with us when I was in high school. (and was reminded by my brother that I was going to hurt myself if i didn't do it right!) he actually acknowledged this evening that he wasn't feeling well. he couldn't really tell me what was up except that he's just feeling weaker. Could be a cold... could just be the als progressing.. who knows. If he isn't better in a day or two, i'll contact Dr North's nurse, Robyn, and see if we should see Glen's primary care doc, or just hang in until he sees Dr North next week.

I think the holidays just took a lot out of him.. lots of people here, lots of travel, lots of excitement. Think I'm going to limit the number of changes to his normal activity to just a small bit at a time.. just one outing, or a small number of visitors. It was one thing when we knew he'd get cranky.. it's another if it's going to make him feel worse.

And we again have an issue with anxiety.. I lock up the front well before going to bed because he's gone out in front looking for people he's "worried about".. usually kev or rushi or a particular kid from our church. The other day, he went out the back door and opened the garage because he couldn't undo the dead bolt on the front.. so this week Kev will be adding a flip lock to the back door.. near the top so it's out of reach.

On a brighter note, now that things are calmer after the holidays, Glen does seem less grumpy which is good for all of us. and for now, I seem to be doing a little better accepting that everything we do is just going to take 4 times as long as it used to, and that's our reality.