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!