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.