2005 - 2006
Sunday January 2, 2005
Dear Friends,
Grant is definitely changing. Since the last message, he has said and done so many new things I'm afraid I won't be able to remember them all.
First, he continues to speak and say surprising things. For example, when we put on the Passy-Muir (speaking) valve and asked him to just warm up his voice and make any old sound, he came out with "Testing 1, 2, 3". We laughed and laughed. How cute is that? He has said "I'm sorry I'm not myself" and "You are my lifeline" and "My legs feel virtual, not real" and "I sometimes feel my life is not worth living" and "It's good to see you, even if it's only your outline."
For the years he was apparently "out of it", I continued to talk to him and tell him what was going on, but I was never sure he was getting any of it. For example, one of my projects last fall had been to purchase a mobile home in Florida for my Mom. I'd been telling him all about it as the plans moved forward. On December 6, the day before he first started talking, I had just returned from a trip to Florida to close the deal. One of the first things he said to me on Dec 7 was "Did you buy a trailer?" I was astounded he was so completely oriented and up-to-date.
My uncle Bernie told me the following joke when I was in Florida. A frugal pastor is painting the church. He buys what he thinks is enough paint, but runs out sooner than he expected, so he puts paint thinner in the remaining paint, and continues the job. The paint supply is still getting lower and lower, though, so he thins it some more. But the job is looking worse and worse, so the pastor decides to ask the Lord what to do. The Lord says "Repaint and thin no more." I told this joke to Grant, who said he thought it was very funny. A couple of days later I asked him if he remembered the joke I had told him about the pastor painting the church. He nodded. I asked, "What did God say?" He answered immediately (using his voice, mind you), "Thin no more." So we have started telling this joke to people as a team. I tell the first part and Grant plays God and says the punch line. He has always enjoyed making people laugh, as you know!
This reminds me, I am going back to Florida Jan 7 - 17 to get the place ready for my Mom. If you are thinking of visiting Grant, that would be a good time to go. Grant has been pretty consistently awake for the last couple of weeks. The nurses are happy to put in the speaking valve, since the more he uses it, the better.
It takes Grant an extraordinary amount of effort to speak, so he can't do it for long - an hour tops, and then he starts to get more and more unintelligible. He says speaking feels to him like shouting at the top of his voice - that's the amount of exercise it feels like to push air through the valve. But the more he does it, the more he develops his lung capacity and hopefully, the easier it will get. The doctor is also talking about possibly using a thinner trach tube, which would concentrate the air more and make talking less effort. As I have seen now at CM often, the move to progressively smaller trach tubes is also the preparation for removing the trach altogether and allowing the hole to heal. This opens to door not only to normal speech, but normal eating. Grant has not eaten regular food in almost four years. I dare not think too far ahead here.
It is very frustrating for Grant when he starts to get unintelligible. He says he is still thinking just as fast, but he is less and less able to say anything because of fatigue.
It's not all good news. His talking has revealed some disturbing things. He says he cannot see. This explains why he has stopped watching TV or wanting to read. He can't see photos in front of his face, and moving them to different distances does not help. He says colors are washed out, and light bothers him. He cannot tell you how many fingers you are holding up and when you ask him to make eye contact, he generally looks only in your general direction, but you don't get the sense he really knows where your eyes are. He is going to have a complete ophthalmic exam this week. He has been on many heavy-duty systemic antibiotics that have bad side effects on eyes, so I am worried. As Dr. Miner put it, "He doesn't need another disability."
He says he is depressed. He has a sad face much of the time. He can smile, but the smile is just face movements. It's rarely a real smile. I asked him if he ever feels cheerful and happy and he said no. He described his view of his future as "Bleak." His anti- depressants were recently discontinued, but they have now been restarted. He says he doesn't feel any difference yet, though. He does not want to talk to any kind of counselor, and his views about religion have not changed in the least, either. He is like Teflon when it comes to religious arguments. He just doesn't "get" anything appealing there. (His Teflon is much thicker than mine.)
A third new and worrisome piece of info we've gotten from his talking is that he cannot feel his lower body. He used to be able to. Now he cannot tell whether or not you are touching him anywhere below his hips.
But there is more good news, too. He is on only 40% of the full dose of the Baclofen, and we are starting to see some significant improvements in his voluntary movement. It's hard to tell exactly what he can do, because he is weak as a kitten from being in bed all this time. But he is moving both arms, elbows, wrists, and fingers on both hands. His fingers are all gnarled up from joint damage, but he might eventually move all his fingers normally if the joint damage can be undone. Stretching and moving are very hard for him, but physical therapists are unstoppable. They are making him bend his arms and raise his hands to his mouth - the movements he needs for eating. This kind of work was unthinkable a month ago.
Furthermore, although he cannot feel his legs, he seems sometimes to be able to move his right knee up and down on command. The nerves for sensation and movement are different, and you can have damage to one group without damage to the other. For most of his illness, he has been able to feel his legs but not move them; now things seem reversed, and he can move (sometimes) but not feel. He is moving his right leg just enough to make me far too hopeful!
If he can keep up this arm and leg movement, and get stronger, he might become able to reposition himself in the bed, and then we won't have to worry about bedsores - and eventually, (oh, joy!) we might be able to sleep in the same bed.
He has also started to wink!
Love, Sandy
February 4, 2005
Dear Friends,
There have been a couple of scares since the last message but things seem OK right now.
We went to the opthalmologist January 6, the day before I went to Florida. I am going to call this doctor Opthalmologist #1, since another one became involved with Grant's case a few weeks later. #1 was extremely pessimistic. He said Grant was practically blind, permanently, no hope of recovery, "the kind of case that breaks an opthalmologist's heart". According to him, Grant's corneas dried out some time ago. Nothing could have been done about that, he said: the illness affected his tear production and gave him a permanent dry-eye condition. The cornea relies on lubrication in order to get oxygen, and if it doesn't get oxygen, it dies. When a body part is in danger of dying due to lack of oxygen, the body tries to supply the oxygen in a different way: it begins to grow new blood vessels, to send oxygen to the deprived area. This process is called vascularization, and the strategy works well pretty much everywhere in the body -- except the eye. The new blood vessels cloud the cornea, creating a layer of tiny spidery vessels that just gets thicker and thicker, eventually creating a layer you can't see through. In addition, the new blood vessels excrete waste products and cholesterol, and because there is no lubrication, those deposits just stick to the cornea and add to the cloudiness. Both eyes were shot, he said; essentially, he said, Grant's "corneas are dead." The name of the condition is vascularization of the cornea.
For a patient with normal eye lubrication (i.e., without dry eyes), the remedy for a hopelessly damaged cornea is corneal transplant surgery. But, Opthalmologist #1 said, Grant is not a candidate for a corneal transplant. According to #1, surgery would never work for Grant, because the vascularization would just happen all over again with a new cornea, and complications of the surgery might result in loss of the eyes altogether.
#1 did only a cursory examination of Grant's eyes, partly because the examination required shining a bright light into Grant's eyes, and this hurts Grant. So Grant just closed his eyes immediately every time the doctor shined the light. The doctor got a little impatient, talking to Grant like a child, telling him he had to cooperate, etc. Talking down to Grant in this way practically guarantees that he will NOT cooperate -- as some of you may know!
We left this appointment very depressed and low. I spent a lot of time in Florida trying to come to terms with this terrible news.
When I got back, we talked with Dr. Miner, who suggested another opthalmologist, an eye surgeon. So we went to see him on Jan 27. Dr. Miner had put Grant on some eye antibiotics in the meantime, because his eyes were all gunked up with pus-like stuff. By the 27th, they were looking a lot clearer.
When we went to Opthalmologist #1, Grant was in a hospital gown, and looking pretty forlorn. But for the appointment with Opthalmologist #2, the Care Meridian people decided to dress Grant in regular clothes. This was the first time he'd worn clothes since his illness began almost four years ago. He looked fabulous! He is still extremely handsome, IMHO. Maybe that -- and the clear eyes from the antibiotic treatment -- made a difference. We were treated much better, in any case. Grant was less anxious, and this doctor was obviously accustomed to treating disabled patients; he knew how to navigate Grant's wheelchair through the doorways in his office, for example. He talked to BOTH of us; he did not treat Grant like an idiot. Grant did not expect much from this appointment, so I think it surprised him that he could see somewhat better already without the gunk in his eyes. Opthalmologist #2 actually succeeded in testing Grant's vision, with interesting results.
Opthalmologist #2 essentially agreed with the diagnosis of #1. But he said Grant's left eye was much worse than the right, and he held out some hope for improving vision in the right eye with glasses. He also said a corneal transplant was not out of the question for the left eye. (He is a surgeon, though, and I would expect a surgeon to be more optimistic about surgical approaches.)
As we waited for the outreach van outside his office after the appointment, I said to Grant that one eye was better than none, and he nodded with enthusiasm. I think we both felt a lot better.
So that's the news on the eye front. Dr. Miner examined his legs and said she was not worried about the loss of sensation, but she ordered some tests.
The second scary thing came up just today. Grant has spent the last twenty-four hours vomiting. He feels awful. He had a fever of 101, and which they got down to 99 today. They drew blood, urine, did a chest X-ray, etc. (all the usual stuff) and started him on IV antibiotics. He is, of course, dehydrated and very weak. He says it feels like the flu. He did want to continue listening to his book on tape, though, and I think that's a good sign.
The nurse at Care Meridian had to get the IV started and got help from Grant's roommate's wife, who is a critical care nurse. Grant is a tough stick and the CM nurse was a little intimidated. The pressure was on, because if they hadn't been able to start the IV, Grant would have had to go to the hospital, and nobody wanted that. But together they got it done!
Everyone at Care Meridian is concerned about Grant being sick. They really love him there. The nurse on duty today (an RN) told me she would come in every day to check on the IV, because she lives close by, even though she will not officially be working. (There are rules about IVs -- only RNs are allowed to touch them, but most of the other CM nurses are LVNs.)
Grant continues to be more alert on the whole. Even today, he consistently answered yes and no questions. That's more than he's been able to do on his sick days in the past. So maybe we're moving forward slightly.
Love, Sandy
March 26, 2005
Dear Friends,
Grant came home for his first visit last Saturday March 19, 2005, almost four years after his illness began. I had a small open house, mostly with my wonderful neighbors, who set things up, and decorated, and handled all the refreshments, and generally welcomed Grant back to the neighborhood with far more style and grace than I could have mustered by myself. Thanks, Victoria, Donna, and Fan!
Grant was supposed to be picked up at 11:30 at Care Meridian, and the event was going to start around noon, but Outreach sent a small minivan at 11:30, and of course that vehicle was way too small to accommodate Grant's chair. We ended up waiting an extra hour before a bigger Outreach vehicle arrived, so everything ran a little late. The upside was that everyone was waiting when we arrived. Four kids were at the corner on the lookout, and they waved and ran over to the house, where another ten or so folks were waiting. Grant had really big eyes as his chair was lowered. He said he had a good time and wants to come back again!
He was happy to be home and see everyone (he can see better than he could a month ago). He was pretty alert, and answered yes/no questions very well. He talked a little, though mostly unintelligibly. His speech has not improved in the last few months; in fact, most days it is worse than that first day in early December. It's funny how on a really great day, EVERYTHING works: you can actually understand (more or less) when he talks, and he can move his wrists and arms and fingers on command, etc. Most days are not really great days. The average day is better than it used to be, though. We can now more or less count on him answering yes/no questions (by nodding or shaking his head), so the care-givers can get an idea of what he wants (change tape, TV, rest, etc.) -- assuming they ask him. He doesn't seem able to volunteer anything, or ask for things on his own. He still does not use the call button or the computer to signal. And if he is wearing the speaking valve, he seldom says anything spontaneously.
His eyes seem somewhat better. His vision at the party was good enough to enable him to recognize some people. He also consistently identifies some (though not all) colors.
He had an MRI a couple of weeks ago, which unfortunately gave no information about why he still can't feel his legs.
I got him an LCD TV, which we have mounted on an over-the-bed table so we can put it as close to his face as he wants. He has not been interested in watching it, however, since he has been listening to a LOT of books on tape lately. He is currently going through them at the rate of two or three a week. He said he would watch TV if it was "C-O-M-A-D-Y" (Grant was always a creative speller), so we've set the default channel to Comedy Central.
I have my spring break this week, and am going to Florida to see my Mom April 3. This week would be a good time to visit if you're so inclined.
Care Meridian is having an Easter Egg Hunt today! I find that very funny, in a dark way. Most of the current patients are comatose and/or quads ... There is a new Activities Director at Care Meridian who is really excellent, and thankfully, makes sure Grant is not too bored most of the time. (The home visit was her idea.)
Love, Sandy
Monday April 11, 2005
Dear Friends,
Grant has been in the ICU at St. Louise Hospital since March 29. He had a urinary tract infection (UTI), which made him vomit a lot, and then some of the vomit went into his lungs and he couldn't breathe very well (this is called "aspiration pneumonia"). He was sent off to St. Louise by 911 ambulance. According to the doctor in the St. Louise ER, he was in pretty bad shape. They had to handle both the UTI and the aspiration pneumonia, so he had to have a tube up his nose into his lungs, and was put on the breathing machine. His temp went up to 106 the first night (though no one told me about this temp until after the temp was back to normal).
Sandra Newell, Martin's wife, went immediately to St. Louise ER and stayed with Grant a long time. There was a young female doctor working the ER, and this young doc suspected Grant might have had a heart attack. He also appeared to have a bowel obstruction; had pneumonia plus the raging UTI, and was, in her words, "failing" and "very critical". This was in the middle of the Terry Schiavo vigil, and the young doc was intent on learning about "Grant's wishes".
I was in Florida when this happened. I wondered if I should come back to CA ASAP, but Dr. Miner said no. She said (correctly) that this episode wasn't any kind of new development; we've seen this many times before. Dr. Miner is a straight shooter, and I trust her. She said, "You know I would tell you if I thought you should come back." She said she expected him to be back in Care Meridian by the end of the week (that would have been by April 1). She said the ER doc was young and inexperienced in dealing with very complex cases like Grant's. So I stayed in FL, though I was pretty unsettled for several days.
By Friday April 1, Grant was looking stable and much better: no fever, breathing on his own. The bowel issue had spontaneously resolved. They had done more tests and were now pretty sure he hadn't had a heart attack. The pneumonia was much better; he was using the vent only for backup breathing. There was one new issue: a new pressure wound on his left foot -- hospital beds are made for little old ladies -- but that wound is small and he will still be able to get into his wheelchair as it heals.
As of April 1, he was still receiving heavy-duty IV antibiotics, though, and most of the Care Meridian staff can't dispense IV drugs. His blood pressure (BP) was on the low side also. So they decided to keep him in St. Louise over the weekend of April 2-3. I got back from Florida April 3, and expected he would be discharged from St. Louise on the 4th. But the BP continued low all last week, and his pulmonary discharge began to increase in volume and was increasingly thick and smelly. So they kept him at St. Louise another week. I thought he would certainly be discharged today (Monday April 11), but last night was bad. He began to experience much more trouble breathing, and was put back on the breathing machine full-time. The pulmonary discharge was pseudomonas, which he has had as a "colonization" in his trach for years; but now there appeared to be much more of it. Last night they needed to clean up a lot of discharge and they shaved off most of his beard!
Yet he had no fever; his white blood cell count was normal; his chest X-ray was also normal. He is as alert as usual (he says he is actually rather bored), and continued to be interested in listening to his books on tape. I.e., there weren't all the signs you'd expect of acute infection process.
They did a CT scan of his chest today to see if maybe he has a mucus plug that could account for his breathing problems.
I spoke with Dr. Miner this evening, and she had obviously been thinking hard trying to figure out what was going on. She now believes there are two root causes of what we're now seeing: (1) His pulmonary doc decided last week to try to treat the pseudomonas colonization, and this is why the pseudomonas discharge is now being suctioned up. (2) He is having trouble breathing and has had low BP because he hasn't received his THYROID meds for two weeks. In the transfer of info about his meds, the thyroid medicine was overlooked. Lacking this medicine can make him so tired he literally cannot breathe well enough on his own, and he could experience shortness of breath though there is no physical blockage.
So Dr. Miner put him back on the thyroid meds, and we'll see if that helps. If the CT shows a mucus plug, they'll do a bronchoscopy today and clear that up. Dr. Miner hopes the thyroid med will begin to energize him also; she thinks that the thyroid med alone might make all the difference.
So the last day or so has been pretty crazy. I hope Dr. Miner is right about the thyroid med. I am very tired. The Newells and Kathy Dougherty were on the scene while I was in FL, and I am very grateful for their help and support. I am sorry I did not inform the whole newsgroup sooner -- I am sure many of you would have wanted to help also -- but in Florida I did not have access to my email address book, and I don't know everyone's email address by memory. By the time I got back, I thought the crisis was over, and I knew I would now be there every day anyway. Also, St. Louise is somewhat more rigid than other hospitals about rules for visiting the ICU.
Anyway, we are hoping for the best. I'll keep you informed.
Love, Sandy
Tuesday May 17, 2005
Dear Friends,
Grant has been poorly the past few weeks. In my last report (April 11) he was still hospitalized with aspiration pneumonia, vomiting, etc. He was finally discharged and went back to Care Meridian around April 15 -- he has been in and out of the hospital so much lately I don't remember the exact dates -- but was re-admitted to St. Louise for another twelve days April 23 - May 5. After returning to Care Meridian last week, he started vomiting again and was sent out to the ER for emergency insertion of an IV on May 8. The IV was for hydration; they can't give him water via the G-tube if he's vomiting.
When he vomits, there is always danger of aspirating, so they are very careful about re-starting his tube feedings. He had nothing but clear fluids (no protein, not his usual formula) for at least three of the last five weeks. So he has lost a lot of weight and looks feeble and skeletal and much older.
He's been having trouble breathing, and so has been on the ventilator full-time for a couple of weeks now. While he's on the vent, we can't insert the speaking valve. But the nurses say he can still speak, since he can push air through his mouth as long as the trach hole is sealed, and the vent does make a seal. The nurses say he has spoken to them. But I have not observed any speech; he seems just very tired.
He wears a monitor fulltime now, and an alarm sounds whenever he is not getting enough oxygen. Whenever they take him off the vent, the alarm sounds eventually, and they have to "bag" him (give breaths with a hand-held bag) until they can hook him back to the vent. It's an emergency procedure that would be pretty interesting and exciting to observe on someone else. When the vent flow is restored, the nurses describe what they've done as having "brought him back".
It is not clear to me what's going on at this point. He is not very stable, but on the other hand, I think he's probably better off at Care Meridian than he would be in the hospital. He still vomits occasionally, but no one knows why. He does not appear to have a bowel obstruction any more. I don't understand why he is having trouble breathing. He does not seem to have any infection -- no fever, at least. Everything else seems OK, all normal labs. The doctors say "wait and see". It seems everyone has run out of energy and inspiration, and he is on his own.
He has been listening to lots of audiobooks as usual, and is awake enough most of the time to answer yes/no questions, but seems depressed. When I visit and then say good-bye, he makes a face like he is going to cry. If I then ask him if he wants me to stay, he nods. You who knew him know how independent he has always been. He's got to know things are different now; he hears the additional machines beeping. He must be terrified when he can't breathe and there's all this sudden commotion and alarms sounding and people yelling for help. And then they bring him back.
I have had some serious conversations with the acting DON who is concerned about our "being realistic about treatment plan". The CM people want to know now if he's changed his wishes regarding his code status. I talked with him about that last week, and he indicated that he still wants to be full code (do everything possible), so I guess he hasn't completely lost hope. But in St. Louise last month when there was talk of emergency surgery, he indicated clearly he DIDN'T want it. Luckily, what he says to me doesn't matter, anyway; the hospital is a Berkelean world where nothing is real until the doctor perceives it.
I don't know if this time is just a temporary setback. Maybe he's just weak from not having eaten much in the last few weeks. Things sound grim, and it's not the best of times -- though I guess it's not the worst either.
Love, Sandy
July 7, 2005
Dear Friends,
Grant has been somewhat more awake in the last week, but on the whole far less responsive than he was, say, six months ago. He had his fifth birthday in hospital June 16 when I was in China. A few days ago he watched the movie Groundhog Day, and yesterday seemed interested in my new cell phone. But everyone agrees he is changed.
Most days he listens to books on tape, but now refuses to participate in any activities or therapies. He communicates nothing much except for nodding when we ask if he wants us to "change the tape". Most of the time, even when listening to a tape, he simply moves his head from side to side. It looks like he is signalling "no" all the time; his continual head movements are causing abrasions to the back of his neck because he rubs against his trach collar. Dr. Miner would like him to get out of bed (i.e., be hoisted out in the lift) every day, and every day he refuses. He hasn't been outside in months now. He does not want to use the speaking valve, or the computer, or the letter board. He does not want to get up in the wheelchair, even if that means he will miss his outside doctor appointments.
Since his recent hospitalizations (which he hated), he has apparently done some serious thinking about his own future, and has made some decisions. He has now indicated not only to me, but to to Dr. Miner, that he does not wish to be hospitalized again for any reason, and does not want anyone to call 911 if he crashes. Grant will allow the people at Care Meridian to use their own resources and equipment (limited) to bag him and bring him back if they can. They will be allowed to use any drugs they can administer at Care Meridian, including IVs, though starting an IV on Grant is difficult in the best of circumstances.
But there are to be no more "unscheduled" transfers to hospital. Dr. Miner has written orders reflecting these wishes. She believes now that these are his genuine wishes -- i.e., not merely the product of depression -- since he has expressed these things consistently in spite of new/increased antidepressants.
My thinking over the years has made me wary of the notion that anyone's "genuine wishes" can be fully known, even to the person supposedly experiencing those wishes. I am particularly suspicious that we can know our (or anyone's) wishes about life-and-death matters, since I don't think anyone has data about those matters sufficient to form fully coherent wishes. If you have seen Grant in the last few years, you know the additional grave problems attributing any wishes to him at all, since the vast majority of his communications since his illness have been limited and ambiguous.
I also think it's silly to think we can rule out depression in his (or anyone's) decisions; I think given many people's circumstances, depression is completely rational. Of course I suppose it's possible Grant is not depressed -- that he has evolved to some advanced spiritual mastery, say.
I can think about these issues until my head explodes. The bottom line is that I cannot imagine the Grant I knew (depressed or not) choosing to prolong the life he currently has.
The upshot of these decisions is that Grant will most likely, as Dr. Miner puts it, "succomb", sooner than later. As you know if you've been reading these messages over the years, Grant has needed IV drugs and/or hospitalization to combat various infections once or twice a year with some regularity since his illness began.
I am very sad about all these developments, but I think I have to leave it all in the hands of the universe at this point.
I hope Grant is led by kindly light.
Love, Sandy
Wednesday, October 25, 2005
Dear Friends,
Grant continues stable. The last few days, he seems to be sliding back to sleepy-land, after several pretty good weeks. He was using the letter board better than ever until a few days ago.
He has two new bedsores, which means his wheelchair time has to be severely limited (not that he cares). I am upset because the Clinitron bed -- which is supposed to prevent that sort of thing -- seems not to be working properly -- or maybe it's the fact that the temp in his room has been 80 degrees plus. According to Clinitron techs, their beds are intended for use only in climate-controlled environments. Once the ambient temp goes up, the beds heat up too.
The lucky thing is that Grant claims not to notice either way; it's not bothering him. But I think the bedsores reveal a real problem.
He has been listening to lots and lots of audio books. A friend of mine turned me on to OverDrive Audio, which allows SJ Public Library patrons to download audio books free. I got the software working on Grant's portable. It is flakey, and I still can't get it to work on our backup Thinkpad. OverDrive has better-than-average customer support, but the software is still Version 1. Everything works fine until I try to acquire the digital license to download play the material, which is copyrighted. From my reading, DRM (Digital Rights Management) still looks a bit TOO complicated.
I'm having good success downloading radio programs for Grant via podcasting, though, so he has plenty to listen to.
The advantage of using OverDrive and podcasting is that the Care Meridian staff doesn't have to manually change tapes or CDs. They can just click on "Play" and if I make big playlists, he's good to go for hours. He likes that part. I wonder if it's not also kind of bad, though, because he ends up being a bit more isolated. He has the room to himself now -- he has MRSA again, only now nobody seems very worried -- and the CNAs know his audio stuff is set, so they don't spend as much total time with him.
He is as usual neither happy nor sad.
I discovered my new cell phone has a speaker option, so I am now making the regular weekly call to Grant's parents from Care Meridian with the speaker on. Grant likes to hear their voices. He generally does not want to use his speaking valve, but he makes many cute kissing sounds into the phone.
Care Meridian has a new MD medical director. Dr. Miner will continue to be Grant's rehab doc, but the new doc is taking over the straight-ahead medical stuff. So far, the new guy has not mentioned the Lord at all.
Love, Sandy
December 21, 2005
Dear Friends,
Here is a link to a photo of Grant from the Care Meridian Halloween party. Is this cute or what?
http://instruct.westvalley.edu/lafave/Grant_pirate.jpg
or (bigger)
http://instruct.westvalley.edu/lafave/grant_pirate_big.jpg
Grant's been pretty awake the last couple of months. He has been listening to audiobooks like crazy, at the rate of about one per day. I have been downloading the books from the SJ Library. They have about 400 titles of the downloadable audiobooks. A lot of those are self-help, romance, financial advice, classics, etc. -- Grant's not interested in those. I started to download alphabetically the titles I thought Grant would like, and we're already up to the "L"'s! One subscriber can download only 10 books per 21-day period -- that's not nearly enough for Grant, so I'm using both our library card accounts. This format has been a big hit with Grant -- he says he much prefers it to CDs or cassettes, because he can listen for hours on end without having to rely on the CNAs to change tapes or CDs.
He has yet another bedsore on his foot now. It's the same site as the one he got in the hospital earlier this year.
Grant and I went to the movies -- to an actual movie theater in Gilroy -- with one other patient and a couple of aides. We saw the new Harry Potter movie. Grant had such a good time he didn't want to go back to bed when we got back to CM. We went to a mid-afternoon show so there was hardly anyone in the theater, and Grant said he could see the screen well enough.
Grant and I send you all our love and best wishes for the holidays!
Sandy
December 25, 2005
Dear Friends,
Grant died early Christmas morning. A sudden vicious infection took him very quickly. He did not suffer much, as far as we could tell. He appeared to be in pain at first, so the doctor ordered morphine. Then Grant breathed irregularly for twelve hours or so, and finally went peacefully.
He was surrounded by friends and loved ones all day and night. The staff moved his roommate to another room, so Grant could have privacy.
His favorite care team happened to be working. When their shift ended, they cried as they said good-bye to him. They all said they loved him very much, and told him they would miss him.
When the outcome became inevitable, the staff phoned other staff members who were not working that day, and the off-duty gals also called and visited to say good-bye to him (on Christmas eve day, when they probably had lots of other things to do!). His parents and family also spoke to him by phone.
I felt very glad and blessed to be there. I held him and talked to him. Occasionally I would put my cheek near his mouth and he would very weakly kiss me. He seemed pretty out of it, even though his eyes remained continuously open. He was too weak even to blink, so his dried-out eyes -- in a vain attempt to protect what was left of his vision -- spontaneously filled with liquid, and the "tears" spilled down the side of his head, so he appeared to be crying at times.
My friend David said, "On Christmas morning, he was released from his prison."
There won't be any kind of viewing or funeral. I plan to have a memorial ritual of some kind. I will let you know the details after the new year begins. A lot of people are traveling this week. Perhaps Adobe or some one of his other former workplaces will let us hold a service in one of their nice spaces. Churches never gave Grant much comfort. I think that he felt most at home in the world at his computers, in his workplace, and I know he was much loved there.
How can I thank you all for all you have given us these last years? There are no words. I'll say thank you anyway.
To the astonishment of the medical folks, Grant was given almost five more years of life after the inception of his illness! He read hundreds of audio books. He was tenderly cared for by good people. He played and joked with his caregivers, to the extent that he could, by making faces and sticking out his tongue, and moving his head eloquently. He never lost his sweetness.
I think he has earned super-powers. If there is anything to karma, he is already a god in his next life.
Love, Sandy
Dear Friends,
Grant's memorial at Adobe on February 2, 2006 (Groundhog Day) was wonderful. I can't imagine how it could have been nicer.
If you weren't able to attend — or you'd just like to see or copy the videos — they are available in Quicktime format at
http://instruct.westvalley.edu/lafave/final_candidates/ending.mov
http://instruct.westvalley.edu/lafave/final_candidates/young_then_ill_Grant.mov
The second file is especially large, sorry. Thanks to Bruce Bullis of Adobe for putting these together!
Love, Sandy