Moving forward:

First, to all those loyal friends who followed Glen's journey through this blog, thank you! Your support meant so much through some very dark times!

Now, it's time for me to move forward with my own life.. to define new meanings, to start sorting through all the changes and emotions.. and one step in that will be to start my own blog. If anyone cares to check it out, the url is www.katiemoveson.blogspot.com

Again, thank you for all of your love and support.

Katie

The End of a Journey

Sadly, on Friday July 30,2010, Glen's ALS journey came to an end.

He developed pneumonia and passed very quickly after that.

Kevin and I are very greatful to those of you who have, through this blog, been part of our journey. Your support and caring have helped us immensely.

Funeral services will be as follows:

Thursday, August 5

Chapel of the Angels 40842 Fremont Boulevard Fremont, CA
Visitation from 2 - 7 pm
Vigil service 7:00 pm

Friday, August 6

St Francis of Assisi Catholic Church 5111 San Felipe Road San Jose, CA
Funeral Mass 10:00 am
Burial at Gate of Heaven Cemetary, Los Altos

Reception at our home after the cemetary 3278 Archshire Court San Jose, CA

We would love to see you.

Again, thank you to all those who have offered help, love and prayers

Katie and Kevin

Will try to keep this brief..mostly because I'm super tired. Glen has taken a definite turn for the worse. He was hiccuping every time he ate on Wednesday, leading to a serious vomiting episode after he went to bed Wednesday night. When I checked in on him before going to bed he was shaking violently, so I contacted hospice, who sent a nurse. He had a fever and was complaining of chest pains. Started morphine, which he is now getting every 2 hours.

Spoke at length with Dr North last night. He said the next few days would tell, but he believes Glen's got pneumonia (or some other infection obviously) and that Glen not being able to lie down without great distress is most likely a sign that he is beginning to build up CO2.

That's about it for now. Will update when I can.

Well we've had kind of a rough couple of weeks. I believe Glen is feeling more ill, and as a result is showing greater awareness that he has a terminal illness. The first indication was before our friends Peter and Patti came to visit. The night before he said to me "I wonder if I'm even going to be here tomorrow." I did my best to reassure him that of course he would.

One day he was looking sad and when asked, said he was thinking about his older brother and how they hadn't really gotten along well during Glen's "formative years." (His phraseology is still fascinating sometimes) He also confided that he felt his chances of seeing his brother again were about 50/50. Bob is in Alaska until September. The next evening I was sitting with him while he was falling asleep, and for the first time since his diagnosis a year ago, he actually cried. I asked him what he thought was going to happen and he said "I'm just going to fade away." He made me cry too. We spent some time talking about whether he believed he was going to see his mom and dad (yes) and my mom and dad (yes) and my brother... which elicited a little grin. I said waiiiiit a minute... you two aren't going to be giving me a hard time are you? Another grin. "Hey.. I don't want any shenanigans from you two!" I actually got a little giggle.

These conversations always happen right before he goes to sleep in the evening. During the day he was becoming much more agitated and much more "inappropriate." We have made a fairly large increase in his meds, and for now it seems to be helping, AND he seems to be sleeping through the night.

On a happier note, progress on the yard has moved along fairly quickly and we were able to take Glen out in back today and show him the new raised beds for the veggie garden, the framing for the arbor and the finished patio. Of course he wanted to walk over and gaze into the pool.. he's really looking forward to going into the water. [note to all: no water goes in the pool until it is fenced] Finally got the refi on the house approved too, so everything moves forward with less stress!

For those of you who are my Facebook friends there are a few photos of the yard posted on my page. If anyone else wants to see them, just ask and I can e-mail them to you.

Nothing hugely dramatic this week. Glen is experiencing a (for now) slow but steady decline. His speech is markedly worse.. frequently if he says something, we have to mute the tv and ask him to repeat himself. What I genereally try to do is repeat back what I think I heard, or as much of what he said as I think I understood. I try to remember to use yes or no questions as much as possible.. I'm still guilty on occasion of giving him choice a or choice b.. to which he will nod his head yes or no leaving us all very confused. We try to inject as much humor as possible and try to keep the mood light.

At one point this week after Glen had missed an afternoon dose of his anti-psychotic medication, he seemed so much more alert that I decided to see if we could back off that dose. Unfortunately the trade off was an increase in odd behaviors. Last night he wanted to go upstairs (pretty much off limits to him)... when I asked him why he told me "because there's a beautiful creature up there." He was also insistent on going upstairs, outside, for a walk, etc. So it came down to a choice: more alert but making worse choices, less alert but safer. After talking it through Kev & I have chosen safety... which also means things are much more peaceful and calm.

He's also sleeping more.. goes to bed earlier, sometimes takes two naps instead of one, semi-dozes while watching TV. If I had to guess, I'd say his CO2 levels may well be starting to build up. On the other hand, he said this afternoon that he misses USF basketball and we talked about the fall season.. I even got him to agree that if we did get tickets, he'd agree to use the wheelchair to get to and from the gym. Big concession on his part, but he couldn't go for a walk today because of quad cramps, so I think it might have just been timing.

4th addendum

well.. despite a good start to the morning, Glen faded fast and after a late breakfast and spending some time watching Rushi open birthday presents, he asked me to help him in to take a nap. His color was back to yesterday's grey and he was again slurring his speech heavily. I fear I got my hopes up this morning when he seemed so perky, forgetting what the adrenaline from the fall could do. Sigh.

Happy 4th all!

Today is actually starting off better than I'd hoped. Woke up at almost 9 and realized Glen wasn't watching TV.. usually not a good sign. Went into his room and sure enough, he was sitting on the floor.. but with a big grin on his face, go figure. He'd only gone down a few minutes before, it wasn't the middle of the night, and Kevin was home so all in all it was very convenient. Got him up and he's now having some breakfast. He was really awake and not druggy this time and so could actually tell me that his legs just gave out. I realized that he needs to make a left turn to get to the door (his left side is his weak side), and that he goes down in that same spot every time. May be time for some furniture rearrangement. Unfortunately it's also another indication that his legs are starting to be more involved. Damn.

Yesterday was an especially rough one. He had an very bad night Friday with extreme vomiting and was very weak and tired all day. He actually felt like he might have a slight fever but seems much better today. The really interesting thing is that for whatever reason, Glen was here.. the real one.. and we got to talk about a few things. Much of it was sad but still good we could discuss it. He was power grinding, and I finally coaxed out of him what it was.. he was thinking about his older brother, and (um.. gonna paraphrase here) how they didn't get along well growing up. Ah hell.. his actual words were: "in my formative years he was an asshole." He said he figures there's about a 50/50 chance he's going to see his brother again. [For those who don't know, Bob's in Alaska until the end of September] Glen acknowledged feeling scared, and feeling like things were going to go downhill quickly from here. That being said, he had no regrets about decisions we've made concerning feeding tubes, trache tubes, etc. I said that the way he was feeling was probably just a little glitch and he'd be better soon. He shook his head no. He doesn't seem to think there's a lot of this left to go on. I think Kathy was right.. the issues with Bob are because when he's clear, he's kind of reviewing his life and was thinking about his childhood.
I asked him if he believed he was going to see his Mom and Dad and he said yes. I said hey wait a minute.. you and my brother aren't going to be coming back and messin' with me are you!? He gave me a big grin. I told him I wanted NO shenanigans!! He grinned again. I may be in trouble.

As mentioned earlier, he slept in today and despite his fall seems to be in a good mood. He's had some fruit and is waiting for Kev to come back with coffee and breakfast. His color is much better and his breathing is somewhat shallow but much easier than yesterday. Sadly.. "real Glen" is gone again, and we're left with the power-grinding, Martha-searching adolescent version. Oh well. It was a nice visit.

It's Tuesday. It's quiet (if you don't count the tile cutter in the backyard.. sort of adjusting to that) Glen's at 'club', Kevin's playing ball, Rush is in Fremont and dogs are asleep. I probably should be too but had some stuff to catch up on first.

Last week was tough... Monday we had tummy problems part 1... hard to be delicate, but Glen had some constipation issues. What happens then is he gets very agitated and thus begins the 3 minute shuffle... he'll go into the bathroom, stay in there 3 minutes max, go back to his chair, stay there 3 minutes max, go back to the bathroom... this goes on for HOURS. Next day he was far too tired to go to club. But of course angry at me for not letting him go.

Also Tuesday, he needed to pee.. but couldn't get his shorts off, they fit too snugly. (Not that they are snug, just not managable for Glen's hands.) So we ended up with a flood on the wood floors. And those shorts are in the "can't wear" pile.

Wednesday night he was in bed and vomited again all over himself, the carpet, the bed, etc. Purchasing a carpet steam cleaner was one of the best things I've done. Doc says those night time vomiting episodes are most likely aspirations. The most likely end scenario will be that the aspirations eventually cause pneumonia, which we will not agressively treat.

Thursday and Friday were more or less quiet. Saturday Kevin stayed with Glen so I could go to my family reunion at my cousin Laura's in Sebastopol. Nice to see all those folk when we WEREN'T at a funeral! Been far too many of those lately. Lots of good time spent with Don and the nephews on the way up and back. Not used to being up quite that late any more though!

Yesterday Glen was a little grumpy again. OK, he was a LOT grumpy. Had it in his head that he was going for a walk... never mind the fact that he in general can't be allowed to go walk on his own, it was freaking HOT!! Unfortunately I was then the bad guy for being mean and not letting him go. After dealing with that all day, loan guy calls and needs MORE paperwork... argh!! Yup guys, I'm just sitting around here doin' nuthin'.. let me get right on that for you! Fire off a fairly cranky letter to both the loan officer and our financial advisor. He's now very aware of my frustration level and is working to help things move along.

Speaking of financing though.. the pool is looking amazing! Boulders were installed yesterday. I know I need to take pictures and post.. will try to do that soon. Probably after I pay bills and find that missing paperwork for the loan guy and try to get the dishes out of the sink. Oh.. and abut that nap. Just another day in the life, eh?

Before I finish up.. a bazillion thanks to my cousin Patty who fixed me up with an alarm so that we will KNOW when Glen's gotten out of bed. Better to know that when it happens than to find that he's fallen an hour later!! Thanks Pat.. you're the BEST!

And to Carol Brown... who, upon reading my request for cheese to go with my whine at the end of the last blog post... sent me a big box of CHEESE!! Yummy yummy Cheese!! Which made me LAUGH!! And THAT, my friends, is a gift I cannot being to put a value on!

Love all you guys.. but the typoes are making it very clear I need sleep.

k.

Dontcha just hate it when I have stuff to post two days in a row? I know I do. Sometimes I wish I could quit one or another of my jobs... caregiver, chauffer, CFO, etc. Today... I don't want to be "Supreme goddess in charge of keeping the house going." Was in the downstairs bathroom and heard an all to familiar "drip drip drip...." Sigh... the upstairs toilet had overflowed... .again. Dripping water all over the floor.... again. At least this time it didn't drip for days before I found it! In a perfect world, things would be in better shape because when I thought they needed fixing Glen wouldn't have fought me about it. I know now that's because he was already getting sick, but that unfortunately doesn't fix my plumbing. In a perfect world, I would just call in a contractor, say y'know what.. fix both bathrooms, make them presentable and while you're at it.. let's make the downstairs bed/bath into a 2nd master-type suite. And someday I will be able to do that.. but this isn't that day. So... told the kids to turn off the water in the leaky bathroom and use the toilet in the master suite, which is pretty much unused these days anyway. I don't want to be creative in my solutions. I want my house to work. But my world just ain't perfect these days.

Sorry for the whine... maybe someone would be kind enough to send over some cheese.

Oh.. I did tell our case manager about my incident with the PT yesterday. She asked me who it was she rolled her eyes and started dialing her cell phone. She left a message for someone saying that we needed a different PT on our case, and that while she was sure this person is a well qualified PT, she doesn't seem to "get it" about hospice and just doesn't seem to be working out. Wow.

Katie's having one of those days. You know.. the kind where you get up ready to face the day and get things done and then.. well.. reality gets in the way?

Got off to a pretty good start.. except on the way down I remembered I'd left a bag with hospice meds on the kitchen table. Ack! Called home and nobody was awake so just kept my fingers crossed. Got home and all was well with the meds.. but there was a broken vase on the floor and the shredded remains of a milk carton in the family room.

Then I get a call from the physical therapist at Kaiser that I didn't even know we'd been referred to. Physical therapy at this point merely gets Glen tired and grumpy.. he's not going to regain use of his limbs. But anyway... she starts asking me questions: "So do you have a power chair?" No Glen doesn't use a wheel chair at this time. "Do you have a regular wheel chair?" Yes we do, but he doesn't use a wheel chair at this time. "Even when he's out somewhere?!" He is unwilling to use the wheelchair even if it might help him. "Well, does he use a walker?" He has minimal use of his upper body and would be unable to use a walker. "Is he ambulatory?" Yes. "Well how ambulatory IS he... can he walk more than a hundred feet?" He can still walk almost a mile.
"Oh. Well then if you don't mind my asking, WHY is he in hospice!?" Um.. let's see.. he chokes on his food much of the time and his lungs are filling with fluid. "Oh. Is that because of the mild dementia?" Glen has bulbar onset ALS with frontal lobe dementia. That means his upper body is involved, far more than his legs. It also means his dementia is significant even if he can tell you his name and address and the name of the vice president. [brief pause] "So has he had any falls?" Yes "How many in the past 2 months?" 4 "Oh, so he is a fall risk." [resisted urge to say gosh.. I bet your dad is glad he paid for your tuition!] Yes.. he has no arm strength so if he starts to fall he can't catch himself. "Well then somebody has to be holding on to him at all times when he's walking."

About this time, I just pretty much shut down.. mm-hmmmed her until she got off the phone. Glen is NOT going to allow someone to hold on to him at all times, which is why we watch him like a hawk. I am NOT going to use restraints on him. The whole point of hospice is to allow him to go through this process with as much dignity and independence as possible. I think the PT skipped compassion class.

Then Baron threw up on the rug. Yup. That kind of day. Now I need to go to the gas station, then go pick up Glen.

Hospice begins

Thought I'd spiff things up with a new look!

Anyway... it's been a busy week. Hospice intake nurse came on Sunday and was here for about 2 hours... we went over Glen's entire medical history, medications, behaviors, etc etc. She talked to Glen, asked him questions, took his vitals, etc. She decided that it would be better to have the nurse come in 2 times a week instead of just one. We have someone come in to do shower, beard trim, teeth cleaning, etc 2 times a week also. We have a social worker that will come twice a month to check on ME and see how I'm doing. At some point the hospice chaplain will come by for a chat. All medications are now covered by hospice, with no co-pay. Apparently there will also be a physical therapist that will come in once a week. All of this is covered by Kaiser. I am impressed so far.

Our case manager/nurse is Gail. She's awesome, she's not afraid of my dogs, she's very down to earth and easy to talk to. She came Monday for the first time, said Glen's lungs sounded pretty good, that the mucus was mostly in the upper part of his chest, and ordered some Mucinex (the kids melt strips, so he doesn't have to actually swallow medication.) David the Shower Guy came for the first time too... so we spent a lot of time finding the right stuff.. a temporary chair for the shower, things like that.

Tuesday was Club day. Almost as soon as I got home from dropping Glen off the medical equipment place showed up with: another over-bed table and a shower chair. Wednesday I woke up to strange gasping sounds coming from Glen's room... went in and he was sitting on his bed with an apple in his hand gasping and shaking like a chihuahua puppy. Took the apple away, got him calmed down and back to sleep. When Gail came later in the day, she said his lungs were definitly noisier and yeah, he'd probably aspirated apple. I also learned from David the Shower Guy that the shower chair had been put together backwards and I should call Apria and have them fix it. I'm thinking I'll probably just fix it myself. Glen was pretty agitated all day... Kev & Rushi were in Santa Cruz, Gail and David both came by, they picked up the bobcat from the backyard.. any one of those things could set him off.. all of them together made him difficult to live with. He went to bed around 7. About 9, I went to lock the front door and check in on Glen.. and found him on the floor. He'd gotten up at some point and fallen, but not made enough noise for me to hear it nor called for help. I called Kevin, who happened to be on his way to Fremont from Santa Cruz. He and Rushi and their friend Brian detoured to come help. In the meantime, I just covered Glen up with a blanket, gave him a pillow and curled up on the floor with him until Kevin got here. I CAN get Glen up from the floor if I need to.. but I do pay for it a few days after. It was nice the kids could come help. They then took Brian home, and came back here to sleep. Have I mentioned enough times how awesome they are?

Today I found there's a leak in the bathroom upstairs... Glen had to have been standing in the puddle on the carpet this morning but mentioned nothing to me. I'm glad I went up there for something. I've told him he really needs to not go upstairs any more for any number of reasons.. but I need to get a baby gate for the bottom of the stairs to make that happen.

He was coughing a LOT during the night. He is choking at almost every meal, sometimes even on pureed food. These aspriations are what will most likely cause pneumonia at some point. The signed treatment.. or really lack of treatment.. orders are on the refrigerator.

Of course.. each step makes me feel the urgency to get this landscape project done. And of course every time I think we're there.. something else. The loan company needs proof of his disability income. So in my free time, I need to go through records and find that.. keeping in mind that our disability income comes from 4 different sources! Wish there could have been a simpler way to do this. Trying not to go there.

A New Step

We have had a bit of a rough week. Wednesday Glen was very low energy all day. His color seemed off to me, but sometimes I don't really trust myself. But he just seemed genuinely ill. Then after he went to bed, he threw up all over the bed, himself, etc. I will pause here to say I have NEVER been good with the yuck factor. Don't think I ever will be. OK, moving on.... While I was getting him settled, he asked if he HAD to go to Club in the morning (how the clients refer to the day care center). I said of course not if he wasn't feeling well and he said good.
Got him and the bed changed and cleaned up then sent a message to the doctor that I'd be calling in the morning. Kevin stopped by after work, and for a whle just lay on the bed with his Dad. They talked about playoff beards and the Stanley Cup and Kev promised Glen the Sharks would go all the way next year. (Came out later and said.. um.. I think I need to write to Doug Wilson!) It was the best, most lucid conversation they'd had in probably months. Of course.. when Glen threw up, he lost all the meds I'd just given him. That awful truth about some psych meds.. they calm the illusions and hallucinations, but the person can get lost in the process.
At some time during the night, Glen got himself turned sideways in his bed.. now.. that completely defeats the purpose of having a bed that can raise his head .. he kinda looked like the filling in a taco! But he slept well the rest of the night so that was good. And Kevin and Rushi came back and spent the night here, which helped me get some sleep.
Dr North called first thing the next morning (I mean like before 8 am!) He said his best guess was that Glen had had an "aspiration event" that set off a chain reaction. Then we got talking about the proverbial elephant in the living room... hospice care. Hospice will provide us with a nurse visit once a week to check vitals, oxygen level, etc. They will keep track of meds and help me tweak dosages etc.. whereas he sees his doctors once every 2 months. They can provide someone to help Glen shower, help provide equipment, etc. (For example... we own a table like those you see next to hospital beds that we use in the family room with Glen's recliner chair. I realized that as Glen spends more time being more comfortable in his bed.. we're going to need the same kind of table in there. They don't come cheap and if hospice can loan us one.. awesome.) Anyway, Dr North and I agreed that it really is time to bring them in. Our focus is one of keeping Glen comfortable and allowing him to have as much quality of life as possible for as long as he has left. And the good doc assured me that they will continue to check in with us. There will be no feeding tubes, no trache tubes or respirators. Glen was adament about this when he was first diagnosed and we will honor those wishes. So... the hospice nurse is supposed to come by today. I know they told me a time... I should have written it down. Sleep deprivation is messing with my memory.
He had a pretty good day yesterday, went back to Club where they said he did fine. Then last night he was agitated again. Got up several times during the night. Today he's very low energy, color off, etc. He doesn't tolerate heat well these days (those of you who used to run with him know what a HUGE change that is!!) so we will be pushing fluids with this hot/humid weather. Popsicles seem to help a lot.. can't get him to eat jello. He's low energy again, lots of coughing, groaning, etc. And very agitated. He keeps peeking out the drapes to see who's in the yard. For the record.. outside of possibly the cat, nobody's in the yard. I have the ok to increase his seroquel again. Might have to today.. we'll see.
On a good note, there is concrete in the giant hole in our backyard (try keeping two nosy dogs off THAT!) Looks like the refi on the house will go through so we can finish the project, then pay off the loan when other financing comes through. And so the roller coaster that is our lives continues.

I have been remiss, and for that I apologize. It is getting harder to write when there is nothing positive to report. Glen's breathing is definitly beginning to decline, as predicted by his doctor. My own guess is that this decrease in oxygen is contributing to the worsening of the dementia symptoms. He is becoming more difficult to live with. Yesterday he kept getting up from his nap (and believe me.. getting his rest is VITAL). He finally said it was because he wanted to watch Wendy Williams. I said no, you're going to rest. If you want to turn on the TV in your room for a little bit, I guess that's ok. So later that evening, he was doing the power grind thing with his teeth and when pressed for a reason informed me that it was because I wouldn't let him watch his girl friend.

I actually was able to get out and get my hair done today!! Then Rushi and I grabbed some lunch. We were looking for a parking lot to just park and eat our Jack in the Box chicken and what do we drive past but Zorba's!! For those who haven't known us for 30 years.. Zorba's was the site of our wedding reception. So I pulled in.. and it's closed.. boarded and chained. Kinda figured somehow. When we spotted the giant bee hive on the corner, we rolled up the windows and decided it was time to leave.

Landscaping is moving forward as finances permit. I really hope to get it finished in time for Glen to be able to enjoy it.. he's not going to get the retirement he so dearly wanted ... I fear it's going to be a close race. Our contractor and his wife are simply saints. If anyone needs a landscaper in San Jose, I can give you a thus far unqualified recommendation.

And so it goes. It's been fun to see that folks have been inspired to go through old pictures and post what they find. When the time comes, I may be lifting a few.

Read an interesting comment today on the University of Pennsyvania FTD website. It talked about FTD being missed sometimes because it is frequently something that causes sufferers to land in the legal system rather than the health care system. I can understand that. Making inappropriate sexual comments to a worker at the dementia care center is bad. Making the same comments to a member of one's family is worse. Much worse.

I hate what this disease is doing to Glen, but understand there is nothing I can do and at least on some level I have accepted and understand that. I also hate what it doing to my family, and I'm not dealing with that quite as well. Kevin is so very angry... and rightfully so. He's angry that his father's been taken away from him. He's angry that his mother's an emotional basket case. He's angry that his girlfriend has been traumatized. And I keep thinking there's something more I need to be doing to make it easier, to keep him from wanting to spend as little time here as possible, to somehow not make his last memories of his dad .. well.. awful. I know I am losing Glen. Sometimes I fear I will lose Kevin too. It makes me very sad.

Someone said to my sister that we have been dealing with an "absurd level of awful." Sometimes it's awfuller than others. The past couple of days have been those kinds of days. Thankfully there are people like Karen, who came and cooked me lunch and watched the hockey game with me providing a little island of actual FUN. People like John, who came and took Glen for a long walk after the game, which helps keep him calmer.

Next time you feel yourself getting angry with or about to get into an argument with someone you love.. stop for a minute, take a breath and ask yourself just how bad it really is. And then.. give them a hug instead.

addendum...

Anyone who has known Glen for any length of time knows his love of Lord of the Rings. It was on TV this afternoon and we were going to watch it. Something warned me, and I told him if it seemed to scary to let me know and I'd change the channel. About 5 minutes in.. he urgently said "It IS!" So we changed to Food Network's BBQ challenge. This was in broad daylight.

And another chapter closes. Sigh. Maybe I'll put on UP later. He likes that.

Twice in a week! Can y'all stand it!?

Good day at the activity center again yesterday... think he's settling in. They are hesistant to give him afternoon snack (choking) but we get around that because there's a McDonald's on the corner, so I get him a milkshake on the way home.

Work continues on the yard demo.. when they tore out the deck we realized the local rodent community had established the House of Escargot Restaurant under there! Literally hundreds upon hundreds of empty snail shells. (If you dare, there's a picture on my Facebook page. Eep!) So.. I'm really glad we got it all pulled out. There's a huge pile of vegetation in the middle of the yard, and they took the bobcat and scraped up the top layer of soil with all it's burs and foxtails! It's already a safer place for the dogs, and once it's cleared out and we get a ramp from the house to the yard (no step there currently) it'll be a safe place already for Glen to go do his walks.

Sent an e-mail to the finance guy today to see if there's a way we can get the rest of the project creatively financed.. I really really want this for Glen.. he earned the money, he should be able to enjoy what little "retirement" time he has!

So Glen has definitly shown signs of his breathing declining over the past couple of weeks. His cough is weaker and I'm having to frequently ask him repeat things.. a combo of low volume due to lack of breath, and slurred speech caused by weakening speech muscles. And he needs help most of the time getting dressed. It's all kind of overwhelming and frustrating sometimes. Then Kevin and I put our "denial shell" back on and move forward as best we can.

We started the "Activity Center" adventure this week finally. First day was Thursday... Glen did great, everybody loves him.. played "golf", sang songs, did exercise group. He was grinding his teeth a LOT when we were on our way down, a sure sign he was wound up about going. After I picked him up, no grinding. We came home, he took a little nap, got up to have dinner, and then went to bed early.. which was probably good since he missed that Sharks disaster!!

Friday he was up and showered and dressed by the time my alarm went off! I was impressed. Picked up breakfast at McDonald's and still managed to avoid much of the traffic. I went home and actually did what I'd been promising everyone I'd do.. took a NAP! For almost 2 hours!

Went to pick him up at a little after 3, and got the dreaded "I need to talk to you for a minute..." from the director. Except she had another client-spouse she was already talking to so I had to wait until almost 4. Talk about feeling like you're sitting outside the principal's office! So he'd had a choking problem.. or what they thought was a choking problem.. he'd been drinking apple juice, and of course it made him cough. So Tuesday I will bring in some thickit, and he will only get thickened liquids while there. He also had had a "behavioral issue" which actually I was far more upset about than they were.. I apologized, they said "oh no, just needed to let you know." Let's just say he made inappropriate comments to young female staffer. So.. only male or older female staffers for Glen from now on! I know it's a symptom of FTD dementia but oy.

Today we're talking again with the landscapers. Getting 1/3 acre fully relandscaped is a HUGE job, but they are really nice people (family owned company) that are willing to work slowly with us and do the work as we are funded. (Katie spent too much time clearing out debt load.. not making THAT mistake again!)

Tomorrow is Mother's Day.. and I figure it's going to be bittersweet. First time without my mom or Glen's. I missed brunch with my mom last year and figured OK, I'll make SURE I make it next year. sigh. I think that's part of the reason I want to get started on this yard project.. I really would like to get it done while Glen can still enjoy it too!

Last week, got the needed TB test and stopped by the pharmacy to pick up a couple of refills. While we were waiting I pulled up the photo gallery on the Iphone and started showing him pictures. Seemed to keep him distracted and amused during the long wait.. anything to avoid agitation! He did a pretty good job of indentifying who was in the pictures, too!

So the TB test came back negative, he got his pneumonia vaccine, and we were able to drop the paperwork off at the Activity Center.

He had one very bad day this week.. started with a little tummy ache that escalated into a huge anxiety/agitation issue, and lost sleep for all of us. His meds didn't help much, and eventually it took Kevin and I both to get him safely to bed. Yesterday was much better, but I do have a message in to the doctor.

There do seem to be some breathing issues when he gets more active.. he'll get pale, and just not process information well as his brain tries to work around the lack of oxygen issue. Not much we can do except try to keep him well rested.

Tomorrow the great "Activity Center" experiment begins. He seems to be really looking forward to it. Keep your fingers crossed!

Long busy week. Psychiatry appointment on Thursday. Dr Khan got a good example of the non-stop, hear from 2 rooms away tooth grinding.. a couple of times it actually distracted her mid-sentence. We discussed the "snipe hunt" issue, etc. She increased his anti-psychotic meds just a little. Glen got to have a bacon cheeseburger on the way home and was able to eat it without incident. Sadly, the same cannot be said for his dinner. Kids stopped at Outback on the way home and picked up takeout. They got Glen a chopped steak which we pureed by adding a little potato soup, the au jus sauce, and some gravy. We were having dinner while watching the Sharks game. I brought him his dinner then went back to the kitchen to get my own.. and in that time he managed to attempt to eat so much that he had a serious choking incident. So of course we adjust the rules.. again. Glen gets his food last so that someone is ready to remind him to put down his spoon and swallow before taking another bite, even of pureed food.

Next morning was Dr North. Glen got to have his favorite breakfast of a Starbucks Mocha and a sausage breakfast sandwich on the way. He can still handle sandwiches in the morning because his throat, jaw and tongue muscles are rested. His weight is good. Left shoulder is pretty locked up now, and is painful if someone tries to manipulate it. Since he has no voluntary muscle use in that arm anyway, no sense manipulating the shoulder. Doctor had him walk up and down the hall then asked me if there had been any falls. I said only two, and both had been med-related. "Hmm." he said. One should always pay attention to doctor-issued 'hmm's. We spent a fair amount of time discussing the dementia, eating issues, etc. Dr North usually engages Glen in conversation about sports or something similar to assess his mental processing.
While there, I had him fill out the physician's report for the day care/activity center. Both Dr North and Dr Khan are really happy I've found the place.. in Dr North's words "we don't want TWO victims!" He also said that we can expect to see Glen's breathing start to deteriorate over the next few months. We'll see him again in about 8 weeks, barring any kind of sudden change.
So I spent much of the afternoon filling out the other 15 pages of paperwork for the center. Need to get a tb test done.. hoping to do that tomorrow when I go pick up a prescription refill. After that, I can drop off the packet at the center, and hopefully get Glen started the first Tuesday in May.

Yesterday.. I slept in late. Which was weird.. no dogs in my room, and nothing had caused me to wake up at 5 in the morning. So I went looking, and found Glen had indeed had a fall when he got up to feed the dogs .. so he'd been there from 5 am until almost 7:30. Bless her heart.. Buffy had stayed with him the whole time. Of course, Kev wasn't home at the time. I managed to help him sit up, then get him up off the floor, but naturally,it was at some cost to my back. Oh well.

Today, he's been the tooth grinder from another universe! He's mad at me for a couple of things (mostly I wouldn't take him to the grocery store) so.. he knows what will annoy me! Next project after getting the activity center taken care of will be to get in touch with the dentist to see if she has any ideas. The sad thing is all the grinding takes its toll on his speech muscles and makes him very difficult to understand at times.

And so it goes. Haven't heard back from the landscape designer yet. Will give him a couple more days then give him a call. Something happy to think about.

Attack of the Fairy God-cousins!!

On Saturday, Glen's aunt, uncle, cousins and spouses arrived to (I thought) help me move the furniture from what is now Glen's room to what is now the family room. And they did. I figured cool, we'll have a visit, and Kev and I will work on the tidying, etc, later. Seriously people.. I have two golden retrievers including a 2 year old pup, and a 20-something male child. It doesn't take a huge leap to guess there was.. well.. stuff under and behind the furniture.

So first we sent Uncle Nando and Auntie Nancy off for a walk with Glen, which was a great way to avoid stressing him out too much. I forgot to specify a route for him, so he took them on the longest route he has. Oops. Bless their hearts, they kept up with him and got him (and themselves ) home safely.

So it took a fairly short time to move the chairs and tables, and place them in the family room. We'd already moved the dog crates, and tv stand. Next thing I heard was "where's the vacuum?" I got as far as "oh you don't ha..." and got a slightly sterner "where's the vacuum". OK, yes ma'am.. I got the vacuum. And the broom. And the trash bags. And the... well you get the idea.

Have any of you read "If You Give a Mouse a Cookie"? Because that's what it was like... while Michelle was cleaning Glen's room, Steve and Grant started on the front yard.. Michelle eventually joined them. In the meantime, Mel was power cleaning my kitchen... she found cleaning products under my sink that I didn't even know I had!! (Sorry, hon.. I'd used up the last of the cleanser Saturday morning after breakfast!) Kevin said to me later: "I was surrounded by this blur of activity and all I could do was sit there and watch! And find things." That was exactly how I felt. We both felt so... taken care of! It was wonderful.

They brought a GORGEOUS lilac plant. Oh, and Michelle planted it in one of the sad looking empty pots on my porch, and watered it, and now my porch looks much happier! Might have to get rid of the "go away" door mat! While people were working, I got a chance to just sit on the steps and visit with Auntie Nancy and Uncle Nando. It was lovely... I used to sit on the steps and watch the kids and dogs play..it was something good. So last evening I was sitting here with the front door open to let in a breeze and the smell of that lilac was soooo pretty.

And they brought FOOD... the tortilla soup is long gone.. it's one of Kevin's favorites, and it was Sunday lunch before he went to work! And pasta, and pasta sauce, and iodine-free cinnamon bread that was really moist and tasty!

And mostly.. they brought love. For a whole morning/afternoon, Kev & I did not feel alone and isolated! He and I talk often about how having people vaguely say "let me know if I can help" sometimes feels like extra work. I did have something I needed help on, but they came and did so very much more.. and the kid and I didn't have to think, we just had to soak it up!

If anyone's wondering.. yeah, we can always use help! The lawns keep growing, the floors get dusty (oh I can't WAIT to have a landscaped yard! Big paws bring in big mud!) and sometimes we just sit and stare at it all. Because the order of priority around here is: Glen's health and safety, Kevin's job, Kevin's school... everything else.

But for one wonderful morning... we were taken care of... we love you guys BUNCHES!!!

Before I forget....

Thank you thank you to:

NJ, Cindy and Zach for a lovely visit
Denise for Tuesday night dinners (the chili was AMAZING!)
John for taking Glen for a hair cut and beard trim... he looks great
Michael for letting me know the city was NOT something I had to add to my worry list
Mel & Michelle for just BEING there when I need a shoulder to cry on, and for volunteering your families to help rearrange my house!
Shelley for being there to really get it in the middle of the night!
Barb.. again what do I say.. you're an amazing friend

KEVIN... for.. well.. everything.

And anyone I've left off, I appreciate you all, my brain just gives out sometimes.

In case anyone wondered why I feel like I have to be on guard every second.... Hired a young man who is going to clean up doog poop AND walk Baron for me! Hooray! So... he comes today for the first time. I introduce him to the dogs and we head for the yard. I forget to latch the deadbolt. (some day I WILL learn!) So as I'm coming in the back door... Glen is coming in the front door. Um.. sweetie... where were you? "I went next door to see if Martha Daly was there."

Oy.

Well I appear to be turning into a once a week poster! In my defense, I came down with a NASTY virus this week. Kev & Rushi had it last week, and somewhere in the 3- 5 day incubation period I got it too. Given that Kevin works with the public and handles money all the time, it's amazing we don't bring in more viruses! So far we seem to have managed to keep Glen from getting it.

Definite "progression" in Glen's physical symptoms this week. I hate that term, because it actually means he's getting worse, but alas nobody asked me for my input on medical terminology. His left arm and hand are pretty much useless these days, and he definitly shuffles more than walks. He actually prefers his meals pureed now, where it used to be something of an argument. And sometimes even purees and puddings cause coughing. We're also having to ask him to repeat things more often.. his voice is very soft (probably a product of worsening breath control) and husky sounding, and he also has more trouble making his tongue and lips actually form the sounds correctly.

As far as the mental changes.. I will admit that at least the fixation/fantasies are becoming more intricate and imaginative! They have expanded from "having to look for Martha" to " looking for Martha who is out running with the girl next door. The girl next door is pregnant by the way. And I have to protect them from the perps behind us." OK.. for the record: Martha is fine, the girl next door is NOT pregnant and the people in the house behind us are very nice. Last night, said girl next door was out walking her dog and suddenly Glen was teeth grinding. He was angry because instead of walking her dog she should have been watching Martha.

What makes it really tough is that if we are not UBER vigilant, he will leave the house and go looking for the girls. I have had to hop in the car and go looking for him. So.. there's an alarm on the back door and a dead bolt he can't manipulate on the front and still we need to watch him all the time. Keep thinking back to Dr Khan saying he needed to be under "constant surveillance."

He got a nice outing today... John Stolan came by and took Glen to get his hair cut and beard trimmed. Not only does he look better, I think he feels better too! And we got a little break from each other. I will definitly admit to being crankier than usual since I've been sick!

So that should catch y'all up for now. Looking forward to next weekend when Glen's cousins are coming over... the help with moving furniture will be great. The chance to visit and catch up will be amazing!

Happy Easter

So.. Easter morning breaks dark and gloomy. Kinda figures, eh? Must admit I've been in something of a funky mood. Each new death in the family seems to undo my ability to bounce back just a little more.

Glen's doing ok. As I've mentioned before, the good and bad news of his condition is that things basically don't matter much. The distance from happy to sad to angry to whatever is minute. So while he knows his mom died, it's kind of an abstract, and the lack of a service keeps it kind of an abstract.

He managed a full blown escape this week. I'd gone out to the yard because I couldn't find Buffy. Workmen had left one of the side gates open. Luckily it was just the inside gate, so she couldn't get out, but was able to get to the garage. Not a safe place for dogs right now. Got her inside, and well gosh darn it.. I had to pee. And my bad.. I forgot to double check the deadbolt first. So I came out of the bathroom, and Glen was gone. Jumped in the car and drove the way I thought he'd go, but it still took me 5 to 10 minutes to find him. Seemed like hours! I will admit.. I was reeeeeealllly angry when I found him.

Yesterday, was doing dishes and heard the front door open. Yup.. I'd forgotten to deadbolt again. Dag nab it.. I like leaving the front door OPEN with just the baby gate across it. I hate feeling locked in here. But at least I heard him right away so he didn't go anywhere. Ad the good news is he does remember his phone number, and Kev & my cell numbers. But OY!

Kids made dinner for my birthday, and followed it with a Baskin Robbins thin mint and chocolate ice cream cake. Yum!! Friday, Sharon and I went out to brunch, then for mani/pedis. OK, we couldn't get into the place we'd planned (long story)... who knew WalMart has a nail salon! Talk about your one stop shopping.

So right now I'm catching up here while waiting for Kev & Rushi to come over for Easter lunch, before Kev has to go to work and I'll take Rush home.

Sad Day

Glen's mom Netty passed away last evening. She died quickly, did not suffer long and I believe was ready to go and to join Bob (Babe for the relatives reading this.) Poor Kev especially is rather shell shocked... in 18 months he's lost a grandfather, 2 grandmothers, and uncle and the dad he used to have. Add in the anticipation of knowing that Glen has a terminal illness and yeah.. it sucks.

Glen's reaction has been .. well.. interesting. But isn't everything with Glen. He had gone to bed knowing his mom wasn't doing well, so when he heard me on the phone with Mark he came downstairs (a little unnerving for me since he'd already had all his psych and sleeping meds!!) I told him what had happened and he sat on the couch with me for a while with his head on my shoulder, then went back to bed.

This morning he came downstairs as usual and when I asked how he was doing and if he was feeling too sad he just very matter of factly said, "No. It was inevitable." The FTD causes something called "emotional flattening" and it is my observation and belief that while he is sad on some level.. he does not have the cummulative effect of all the recent losses that the rest of us are dealing with. I described it to a couple of friends as fitting with that whole dealing with a tall 4 year old thing. "Oh. Mom died. That's sad. What's for dinner." Today he was back to his normal patterns, including going looking for his friend at just about 3:30... same snipe hunt every day. I was ready to up his meds if he needed extra, but really.. nothing's changed.

So it's a dark gloomy day and Kev & I are in dark gloomy moods. Luckily, no workmen today. They start installing the floor tomorrow.. hopefully they'll get it done quickly and then I think we'll take a break from upgrades for a little bit while we reassemble the family room and get Glen's room set up.

wow. A quiet moment. Going to keep this short so I can enjoy it!!

Glen's speech has taken a marked turn for the worse. Might be because of the incessant teeth grinding but it's frequently hard to tell what's the chicken and what's the egg. He's been less communicative.. asked him if it's because his mouth hurts or if he just doesn't feel like talking. His answer: "Let's say I don't feel like talking." Ooookay that's helpful.

Glen's mom is in the hospital. I've had to remind him a couple of times. He doesn't ask or talk about it, but his agitation has been higher the past couple of days. I asked him if he thought maybe that was because he was worried about his mom and he just stared straight ahead. So again... who knows.

There's also all the work being done on the house.. painting, repair, tons of garden clean up.. lots of strangers wandering in and out, lots of strange sounds and smells, disruptions to his normal routine. That for sure is adding to the agitation level.

I believe I've found an appropriate "activity center" for him. They are dementia specific, set up to handle wanderers, can provide pureed lunch, have a yard and lots of activities, and to top it off the cost is not outrageous. Have a phone call in to them to set up a tour of the facility next week. If we can get him set up maybe 2 days a week, it will hopefully give him some much needed mental stimulation, and me some time off to get my hair done, see friends, or even just do laundry!

Seems I've managed to find a way to make life more complicated for a while... necessary though it may be. We've begun the process of pretty much totally rearranging the house. Glen needs to move downstairs.. falling is one thing.. the potential of him falling on the stairs something else entirely! The plan is to turn what has been our dining room back into a family room, and turn the living room into a room for Glen.. he'll have plenty of room to move around, even if he eventually ends up in a wheel chair. Also to that end, we would only have to have one ramp installed to make the entire downstairs accessible.

Step one is having the dining room painted. Glen and Kevin painted the living room a couple of years ago and it still looks nice. But the kitchen/family room area were looking all of their 25 years. We've had a painting crew in here the past two days and it looks like there's at least one more day of work to do. We needed to vacate the house this morning since our "hidey hole" has been the living room and they needed to paint the ceiling in there. Actually it lead to a lovely outing.. Glen, Kevin, me and the two dogs... breakfast at Starbucks, a trip to the dog park so the dogs could run, a stop at the pet store for dog food. It's now 2 in the afternoon and Glen, Kevin, Buffy and Baron are all passed out! Yay! Next is new laminate flooring (looks great but should hold up to 8 big dog feet much better than hardwood!) and then furniture rearrangement. We also had a chimney sweep out, so the fireplace is all inspected and ready for use! Once the room is done, I'll try to post some pictures.

Getting the prep work done, keeping track of Glen, keeping track of the dogs.. it's been crazy busy! But I do believe the finished products will be well worth it. There is also a new plasma tv in our future, and home theater speakers. Much of this work is possible because of the money I inherited from my Mom.. while I'd rather have her back, I do appreciate that she made this possible for us!

Oh, and in the middle of this I had more disability paperwork, and had to start paperwork for the transition from short term disability and California state disability to Social Security and long term disability. I swear I've killed at least 2 forests since Glen got sick!

Health wise, Glen's cough is more constant, energy level is lower, speech harder to understand. We won't talk about the teeth grinding except to say I may buy stock in an ear-plug company! E-mailed Dr North, and we will see him sometime in the next week or so just to see what's up. Unless Glen starts running a fever, nothing is really an emergency but just signs of the inevitable progression of the disease.

Have to say it's been an interesting few days. Kevin and Ben (Kev's roommate from Loyola Village days) are safely back from their Las Vegas adventure. They had a grand time, and it was a much needed vacation for both.... though I think they may now need a vacation from their vacation!

Glen had a rough few days while Kev were gone.. not sure if it was connected or if it was just coincidence. He was definitly more agitated than usual. Saturday night he was having tummy problems, and we needed to change jammies and bed linens in the middle of the night. Sunday he got up at 1:30 in the morning to feed the dogs, and when I told him to put the dog food back in the bin he did... dish and all. Monday afternoon I heard the garage door open and by the time I got outside, he was nowhere to be seen. ACK!! I reflexively called like I would have had it been one of the dogs, and he came back around the corner. (I know.. should have clicked and treated!) Anyway, he'd gone looking for the young lady he has fixated his worries on. Sadly, that means he really can't be trusted to go on walks alone any more so will have to wait for someone to go with him. Other days, he'll just have to use the stationary bike. And the tooth grinding continues incessently. He says he's actually aware he's doing it. Sometimes it's best to purge "why?" from my vocabulary!

Most foods go in the blender now, especially dinner. You'd be amazed and probably a little grossed out at what I'm willing to throw in the blender these days! He seems to be able to manage solid foods for breakfast, but as the day goes on he tires.

Next few days, Kev & I will be taking things down off the walls in preparation for the painters. I know it's going to be stressful having people in and out of the house but will be well worth it. For one thing, I think having Glen move downstairs sooner rather than later is a really good idea.

Was reading a caregiver support website last night. It was talking about how much faster caregivers burn out when dementia is involved. They cited the need for vigilance, lack of sleep, etc as factors. At least it helped me feel a little less wimpy for having my melt down days. Yesterday I looked at the state of my backyard and it brought me to tears. Then I realized I really WAS crying watching grass grow!

Today I woke up to find a fresh hot latte from Starbucks on my nightstand (my kid is awesome) and actual sunshine coming through the window. I talked to my contractor and told her that the next project after the floors and painting was going to be yard cleanup, and maybe some relandscaping. After that I will be hiring someone to help with the general yard maintenance. Feeling a little more empowered and a little less whelmed over. I know it won't last, but for today, it's good.

Not our best day. Glen was edgy all day.. maybe because he couldn't get out for a walk with the weather being so lousy. Maybe because he knows Kev's got a vacation coming up. Maybe for no rational reason and I'm just trying to make there be one. He was looking for his friend from church again. Absolutely no rational reason she would be near here but he was looking for her anyway.... looked out the window, looked on the porch, was going to leave the house looking. When asked why he was so worried, he said "Because I don't trust the guy that lives behind us." Makes things a little tense. Have e-mails in to both doctors to see if there's anything they can suggest. Oh... and he's also grinding his teeth. All the time. Loudly. Gonna invest in some ear plugs.

He also decided to put on some laundry at about 8 o'clock. I should have been paying more attention, but laundry has never been an issue before. Well it turns out he had put ALL his pajamas in the wash, then started going out every 5 minutes to see if they were done. When I told him they wouldn't be done washing and drying until close to ten, he got mad at me and said he did NOT believe that. Sigh. Eventually I was able to convince him that sweats and a t-shirt would be fine for bed time. Gave him his meds and he's now sound asleep.

Think maybe I'll have some tea and dessert and then get some sleep myself.

Saw the doctor yesterday and adjusted medications again. Cut back on one, increased another and found out I can give him his sleeping med mixed with some pudding, because swallowing the capsule has become next to impossible. Then found out the hard way that he needs to go to bed immediately after taking his medication that way... for some reason last night, he decided to sit and watch TV for half an hour AFTER he took them. And then ended up falling in the bathroom, which he says he has no memory of. Of course.. he might just be hoping if I think he didn't fall I'll let him go on a walk alone. That ain't gonna happen.

In the meantime, moving ahead more quickly with project to convert current living room into a bedroom for Glen, current dining room into a new family room. Dining room table headed to storage.. won't be its first time there.

Greetings all. Haven't updated for a while in part because things have been rather levelled off, and partly because Katie's brain has been kind of.. well.. mushified.

Anyway.. first off let me thank those who have gone out of their way to help out. All the ladies from church who have brought dinners, giving me a couple of nights off from cooking. Steve and Susan who stopped by not only with food, but took the time to go for Glen's walk with him. And John.. who will just come and hang out with Glen giving me desperately needed time off. Love you all bunches!!

Glen took a fall last night.. he'd gotten up to feed the dogs. (He's never stopped feeding them at 4:30 am, which is when he fed them while he was working. We've told him they'll wait till a more reasonable time.. but.. well.. it's what he does.) I heard a thud.. not sure exactly what happened but I found him on the floor at the bottom of the stairs. Luckily Kev hadn't left for work, so he helped me get Glen up and we had him sleep downstairs in his recliner. Interestingly, he seems a fair piece clearer this morning. Somewhat easier to have conversations with. (on a conversation with Glen scale, not a usual scale) So I have a theory.. after the fall, he slept on the recliner, with his head elevated. He didn't cough as much and I think slept better. So.. we may be looking to get a recliner for the bedroom. Whatever works!

Not much new going on really. Met with the psychiatrist who added another medication while cutting back on one he was already taking. Doesn't really seem to be making a huge amount of difference. But then.. I guess we don't really know what he'd be like without it either. It gets a little tense around dinner time when every 3 minutes he wants to crate the dogs... long before dinner is ready. Brain doc said that kind of patterning is what she'd expect... he can't sequence, but gets into patterns with certain behaviors or phrases. On the other hand.. far dissimilar to something like Alzheimers .. his memory is great for the most part: recognizes people, can recite our phone number, Kev's and my cell phone numbers, plenty of sports trivia.

Had a lot of friends step up to the plate this week: church friends are bringing dinners twice a week, John came by and spent some time with Glen this morning.. I kept thinking of all the things I could do.. then distinctly heard my grief counsellor's voice in my head saying "you need time to just BE!" So I went to Starbucks, had breakfast, read the paper, caught up with my e-mail... it was lovely. I knew Glen was going to be a little difficult to deal with.. he gets that way after a change in routine.. but it was great for me, and I'm going to try to do that on a more regular basis. And we heard from our friends Susan and Steve who are going to try to stop by some time for a visit. If nothing else it gives me a chance at real conversations!

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.