Update on Jack June 24

Update on Jack 6/24

We had the hospice nurse in yesterday, still working on that magic combo of meds that will give him comfort. Not yet, and each time she leaves, he looks at me with those loving eyes, and says, "I just want to feel better." He sleeps/rest most of the day, getting in some fluids, a bite or two of jello, and that's about it. His abdomen is quite distended, adding to the discomfort. So much muscle has atrophied, so this big belly is quite noticeable. We're waiting word this morning (Seattle time) for some sort of scan/x-ray to see if there's anything there. He's mentally better, after being taken off one med that made him just loopy. The nurse had him up for about an hour and he was just spent afterwards.

As his "gate keeper" either one medical appointment or one visitor a day is about all he can handle. And even those visits have to be cut to about 3-10 minutes max. I really, really appreciate the understanding and acceptance of those of you who call and are told that he can't have visitors today.

Please keep on trying. I print emails from his "peeps" and read them to him, and that is always both a joy and a few tears for both of us. So, send messages that way, too.

The last couple of nights, just as I am heading down, he picks up some kind of energy and wants to talk. He re-hashes the thoughts that have run through his head all day. One night he was going through a small checklist of things he thought I would need. "Do you need any gear [for the big soccer tournament coming up]?" (I was crying on this one.) There are small pots of his money, and he wanted me to know, like I didn't already, but it made him feel better to talk about it. Another night it was wrestling assigning night and he was going through district by district how to do the billing. Last night there was none, as I think it was a long day for him. I had internally groaned when he starts these very late conversations, as I am just spent and just wanted to go to bed. But, I think to myself that we're not too far off when we won't be having a conversation beyond a minute and I should treasure these 15-minuters. Amazing what tidbits of energy you can drag up from your toes to keep going.

Our dog, Annie B, is also struggling with the changes in him. He has asked that she NOT sleep on the bed next to him at night. He can't seem to find a comfortable spot and tosses and turns a lot. Because she's "on duty" and his "nurse," she packs right into him. So, I enticed her with a dog treat off the bed out of the room, and shut the door. You can see it in her eyes, "But why?" A good question without a good answer.You respite helpers: I'll have to continue to work on my guilt leaving him to your care. I know he's in good hands; it just feels odd going off with him being so unwell. Jack does not need help with going to the bathroom, and he lives in his underwear. So, if you hear him up, he does not need any help using the bathroom and would be greatly embarrassed to be seen as he is. He tries to find that comfortable spot in bed, groans and moans a lot in the process. Fortunately, you can hear everything from the living/dining room. Don't be rushing up the stairs thinking something is wrong. I'm getting some sort of bell for him to ring if he does need help. Right now, he can speak clearly and you can hear him clearly. He is not wearing his hearing aids, which means you will have to speak a tad louder. Bring a book, your lap top, and I'll leave the daily paper on the dining room table--just don't do my puzzles. ;-

Needed items: (1) Does anyone have a twin inflatable mattress I could use? Like Annie B, I'm off the bed, too, and am sleeping in my study next to the master bedroom. (I don't know how far we are from getting him a hospital bed, which he is resisting 100%.) I had bought some 3" memory foam for him, but it didn't do the trick. So, that's all I have between me and the floor right now. (2) An old baby monitoring device, so I can step outside and sit, weed, etc ,and still be connected to him.

Future help: the hospice nurse left me with this thought to pass along. Someday, Jack will be totally bedridden, which puts the additional burden of bathing, changing his position, ETC on me. Not that he nor I feel comfortable asking people to put his Depends on him, but it would be nice to know how many of you have experience working with someone in the later stages of dying. (OK, I'm crying through this paragraph.)

Thanks to you all. To the here and now,
Tally

Ron's note: I'll post the requested items separately, so pls respond in that area if you have it covered.

EDITED 6/24 7PM: Suggest we also can send private emails to Tally's email so she can print/share with Jack easier, especially if you have pics to include. PLEASE, in the subject line, state CLEARLY what the note is about--as I'm sure Tally is getting a lot of mail. So if you have some uplifting thoughts for them, put something like "Uplifting thoughts to share with Jack" in the subject line. Or if you have experience in respite care, email her and use a subject like "I have experience in respite care". I think that will make it easier for her to keep up with ALL of us!

EDITED: I've changed some of the settings so Tally will receive an email copy of every comment and post directly. That way, she won't have to check email and the blog. We'll see how that works.............. So stuff you post to the blog, anyone can read where emails will only go to them. Hope this clarifies.

You people are GREAT!

Ron