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.