April 05, 2007


Sorry folks, but this will be another brief entry week too as there are several new developments that are taking my time. One is the feeding tube, which has to be monitored and refilled when it runs out, though that is easy enough for me because I stay up till midnight, when it is about empty (Joe is fed overnight -- the entire process takes about 14 hours). But the VNA nurse is coming 3X a week for the first two weeks, visits we need to be there for. This takes up time and means rescheduling other things.

Then there is the really big change: in this HUD-subsidized building the iron-clad rule is that once you are in an apartment you cannot change to another apartment. People have tried, complaining that they have a very good reason to need to change -- they are scared of high floors or have a terrible neighbor or a phobia about cats and a cat lives next door etc and all are refused. BUT Karen learned that the apartment across the hall from her and literally one flight down across the hall from me (I live next to the stair well just above Karen) was coming vacant. We both thought that Joe should be near to us, as we are his main caregivers and he is becoming more and more dependent on us. A handicapped apartment would do him no good, even were one available. In ALS the problem is not independence but how to cope with increasing dependence while maintaining a sense of self and individuality.

So we went to the building manager and pled our case -- Karen, Joe and I. Odis listened and tried to convince us that he would not make an exception, but as he spoke we could tell that he was actually changing his mind even as he was saying the opposite! In the end he wound up telling us that he thought we should write a letter to the Boston owners of the building and he would do what he could to accommodate us. No promises but he thought we had a good case. Which, if Odis said it, meant we were all but assured of being approved.

Moving day is on Monday. I packed Joe's important papers and small items all day today. We pick up the keys tomorrow and after I see Cy and Lynn I will move those boxes into the bathroom for storage until after the movers come and go on Monday. Luckily, Karen found a company that will pack him up and move and unpack everything for him, so except for what I did today -- about 7 boxes -- we will have to do nothing more but reorganize a bit once Joe is unpacked and in his newly refurbished apartment, a hop skip and a jump away.

The only problem is that Monday is also the day I have a doctor's appointment. Karen does too. Then Tuesday, the cable company comes, and we have to be there since Joe can't talk to them. Oh, it is simply one thing after another...And nothing can be changed. I am doing one thing for "enjoyment" though I must admit I kinda regret signing up for it: the National Writers' Workshop at the Hartford Hilton the following Friday and Saturday. I think I would prefer to rest then, not have to head out to hear more speakers and be with crowds of eager beaver writers trying to schmooze with editors and publishers and other writers etc. I dunno what schmoozing is, or how to do it actually, but it doesn't sound like my cuppa tea. I'd rather read a book or do some writing of my own than sit and fall asleep listening to someone speak on how to write! Why o why did I sign up for this??? I don't know. Because a friend of mine, a long-time editor at the newspaper was going and I thought if he is going it must be worthwhile since he has spent his life writing. But he doesn't have schizophrenia and narcolepsy and is probably meeting his cronies there and most likely knows some of the speakers and and and...

Oh, damn. Well, too late to get my money back now, and too much money to waste by not going. Shoulda known I'd regret signing up and dread it at the last moment. Typical of me...

Anyhow, I am already exhausted from packing all day. Haven't gotten anything else done as I sat with Joe for several hours while the feeding pump ran. It had some problems after a while, which necessitated an emergency call to the VNA and some on-the-phone counseling as to how to fix the machine, after which I did not want to leave until I knew it was working correctly. Now I have to go down to his apartment, not the nearby one, and check the bag and see how much Jevity (food solution) is left and whether it is time to add more. So I will stop here and apologize if I am not able write yet again in the next three days or so. I hope I will be able to, but given the pressures I am under, I cannot guarantee it.


and for those who don't know it or have missed my explanation BD is a smiley. It is me with hornrim glasses and a big grin. Turn your head to the left and take a look. BD 8D is me in intellectual round rims!

Posted by pamwagg at April 5, 2007 09:23 PM


Hi Pam, good news about Joe getting that apartment closer to you. Hopefully that will reduce some of the stress as time goes on for all of you. I agree with Christina, you are a beautiful person. I'm always impressed by you. Whatever you do, you put your heart into it and you do well. Joe is very fortunate to have you as a friend.

Posted by: Kate K. at April 7, 2007 05:21 PM

You are a beautiful person Pam to be taking care of Joe as you do!

I admire this greatly. I do read your posts nearly every day, so take heart people are reading you if not writing in.

Your absence from the posts is understandable.

Take care of yourself, Pam.

Tell us how it's going with the poetry book.

Warm regards,

Posted by: Christina Bruni at April 6, 2007 06:51 PM

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