Update on John

John is more unsteady on his feet.  He can still walk from the house to the car, but with two people to keep him upright.  What scared me most though was that he couldn't eat lettuce, had to pull it out of his mouth.  He said it wasn't a swallowing problem but not being able to move it around his mouth to chew it.  But if his tongue muscles are going, the swallowing muscles are too.

Elizabeth and I and John's wine friend David and Deborah King sat around after his birthday dinner (after he went back to the nursing home) and talked about what he soon wasn't going to be able to do.  I encouraged David to move towards having the wine dinners in the small dining room at the Downs; he said sometimes he has been scared John would fall when he was helping him in and out of the car. Elizabeth found a thermostatic control that will work for John's wine refrigerators, instead of his system of adjusting timers as the temperature of the basement changes.  We also talked about the swallowing problems, which David has seen, and that John's drinking fine wine would be over at the point where he has to have thickened liquids.

I brought the first two points up with John over the next several days.  He said that he didn't think a new control system for the refrigerators was needed this year, though he accepted my saying it would make me feel better.  He said David hadn't said anything to him about being uncomfortable about helping him in and out of the car. I didn't discuss thickening liquids--he would just say he isn't having swallowing problems.

Elizabeth and I talked about what might happen while she is away at school. We agreed that he is getting close to the point of losing quality of life and would not go to the hospital and probably not get further antibiotics if the first ones used don't work (no therapeutic escalation). She wants to come home when something happens, and we will try to have the funeral within a week.

It hurt to feel her pain facing such difficult things.  I also feel so torn between my own instinct to come to terms with and plan for the end and John's denial that he is losing quality of life. I find it hard to feel my feelings when I know he would tell me that they aren't accurate.

tough decision

I'm getting close to deciding John has to go into a nursing home, whether he agrees or not.  He would say can't he stay home with more help, but that doesn't seem realistic to me.

A couple of weeks ago he suddenly got much worse, unable to transfer at all (we basically had to lift him between chair or toilet and wheelchair).  We thought that might be a urinary tract infection and with antibiotics he got somewhat better.  But he didn't get back to where he was; he can occasionally use the walker but mostly he is in a wheelchair.  He has a lot of tremor in his hands; food ends up on the floor when he eats.  He spends many hours a day on the toilet: trying to urinate, dealing with constipation or diarrhea  (trying to avoid bowel incontinence), cleaning himself.  Occasionally he has to cath himself.

Unless it is a particularly good day, he can no longer heat up his own leftovers (or frozen prepared food) or make his own smoothie.  He is falling perhaps on average once a day, and fairly often it takes our son and I together to get him up.

If it was likely he only had a few months to live I would keep him home.  But it isn't clear what symptom he will die of.  The most likely one would be swallowing problems leading to pneumonia, but his swallowing isn't noticeably getting worse.

He desperately wants to be home.  We had a conversation with the hospice nurse, who felt he wasn't safe at home because of falls.  He proposed more help in the evening and also agreed to a monitoring camera so I can check on him.  He said "anything is better than what Pam is thinking." But what I am thinking is that I can no longer give him the care he needs.  He is not getting all the help he needs to sleep comfortably because I need to go to bed.  There aren't always going to be 2 of us here to pick him up.  He isn't taking his medicine much of the time unless I put it out for him.

Yesterday I had a bad sore throat and wanted to rest and stay away from him.  When he woke up I did push him into the bathroom and change his briefs and pants for him and get him icewater.  I think he was in the bathroom all afternoon. When I went downstairs to tell him I would bring him down his dinner he said he would fix himself something else to avoid my germs.  But then he sent Paul up for the stew I had made; he realized he couldn't manage getting himself something and he needed food.  He told me he did want me to get him ready for bed, but then he changed his mind when I said it needed to be at 8 pm because I needed to go to bed early. I was woken twice, though I didn't have to get up.  Once was by a phone call that John didn't get to, probably because he was in the bathroom again.  And once was by him calling for Paul, I'm guessing to help him get his pillows so he doesn't fall sideways over the arm of his recliner.

Resentment

John has slipped significantly, and I realize I have been repressing my reactions.  For me, a lot of frustration and resentment comes up before I ever get to grief.  And I worry that if I complain now I will look back when things get worse and wish I had appreciated how things are now.

For the last six months or so he has been having occasional bowel incontinence, maybe once a week at totally unpredictable times.  He wears disposable underwear when he is particularly worried about it, but he doesn't like to wear them when he is fully dressed with jeans and belt because then he has to undo his belt to urinate instead of just opening his fly.  He did agree to wear boxer briefs (once I cut one layer of the fly for easier access) so the mess would be more contained.  Occasionally the problem is very minor and he doesn't need my help, but often he needs help with his clothes and with cleaning himself.

He finally got the help he needed for his swelled legs, and before he got any really problematic infections.  And the therapist understood that he wouldn't be able to put on compression socks and recommended velcro-closed wraps.  But that means he depends on me to be home to rewrap his legs after he showers.  For the first time I am grateful he only showers twice a week.  Today he said he would be ready for me to wrap his legs at 1 pm.  Instead it was 3:15.

He can still talk to someone and appear just fine.  But I asked him if he wanted to cancel an appointment Monday afternoon--he has an appointment in Charleston Tuesday morning so I will drive us down sometime Monday afternoon/evening.  He said yes and commented that he can't look ahead that way and see the relationship of things.  He is barely hanging in there with a Google calendar to be able to keep track of his schedule at all.  He went to the doctor alone for a urinary tract infection and wanted to get a new prescription for another medication he takes occasionally.  I reminded him to take the bottle so that he could get the same thing but he forgot.  When I picked up the prescription at the pharmacy it wasn't what he wanted (too few days).  He said he would call and straighten it out but when I asked him about it several days later he said he hadn't had time.

He doesn't like to ask me for help, so I get indirect questions when he is hoping I will do something, which just makes me feel that he is expecting me to do whatever extra it is.  Yesterday he asked about recipes to use a lot of frozen blueberries that were accidentally left out.

He drools and his nose drips a good bit.  He tries to carry a napkin, but then he leaves those around the kitchen.  Sigh.

Frustrations over John's health--Lymphedema

John has had swelling of his legs for at least a year. I think it is related to the stiffness that comes from the Parkinson's, but I can't find any literature on that.  His family practitioner said his heart was fine and prescribed diuretics to be taken when needed, but after 6 months or so those stopped working.  If his legs stay swelled he gets sores on his legs because the skin is so tight it cannot heal.  Finally he ended up at a physical therapist who seemed to know what to do, though she said it wasn't any of the usual forms of lymphedema.  She wrapped his legs in pressure bandages and told him to order velcro-closed leggings which he hopefully can put on himself (at considerable expense--medicare pays for the therapist and her wrappings but not for the leggings).
She saw him twice, then told him he should take off the wrappings when he showered over the weekend and then put them back on.  Or rather that I should.  No instructions.  I guess I should have gone with him.  It actually didn't take as long to do as I expected, but I can't figure out how to do the feet smoothly.  For the first time I am thankful he refuses to shower more than twice a week.  His legs are much better.

That was Saturday afternoon, since it takes him about two hours to shower and soak his feet between unwrapping and wrapping.  This morning he needed my help to catheterize himself, as he had gone out to dinner with a friend and become unable to urinate.  He left a message for the urologist about that last week, and the urologist said it sounded like a bowel problem triggering it and he should get a gastroenterologist to help him with the bowel problem.  Only there isn't any fixing John's tendency to swing between constipation and diarrhea, so that isn't realistic. 
Then this morning he needed a lot of help getting dressed, as it is harder to put on his pants and shoes over the bandages. It takes care, and our son who usually helps him isn't good at that. We did get out to lunch with his 100 year old aunt.

Sigh.

Update on the Lymphedema.  The wrapping works!  The wraps are easier, but he can't do them himself.  The therapist knew he wouldn't be able to do pressure stockings himself.

Emergency room visit

Friday morning a few minutes before I headed into class I got a phone call from John.  He was crying so that I couldn't understand what he said, beyond that he had fallen.  I grabbed a film for my teaching assistants to show and headed home.  Luckily I had gone in very early so my car was right in front of the building.

I found John sitting on the bench in the bathroom, with a mess on the floor and in his clothes.  Trying to take his clothes off he fell and hit the side of his face against magazine table.  He had a lump and a small scrape, but he wasn't in pain any more. I helped him get the rest of his clothes off and get in the shower and I cleaned up the floor.  I left the clothes to deal with later and went back and taught the second half of my class.

When I got home again I ate my own lunch and then cleaned up the floor and helped him get dressed.  I made him some lunch and then he discovered he couldn't eat it because it hurt so much to chew even something soft.  We decided that had better be looked at, particularly since it was Friday afternoon, so we went to the local urgent care center.  The wait there is usually very long--this wasn't too bad in comparison.  The nurse-practitioner said he needed an xray.

I explained that he couldn't lay flat on the table because his neck is bent forward too much.  It turned out they planned to do the xray sitting up and the problem was he couldn't turn his head to the side very far.  Eventually the technician had him sit on a stool and put his head forward on the table.  He wasn't very stable that way.  I suggested I could robe and hold his shoulders and to my surprise the technician went for that.  The technician said the xrays didn't show anything obvious.

We waited a while for the xrays to be read at the hospital.  The nurse-practitioner came in and said John would need to go to the hospital for a cat scan but it looked like his jawbone was shattered and he would need surgery.  We were surprised given what the technician had said and John's lack of pain, but we headed for the hospital, with a brief stop to get me some food and John a milkshake.

They took John back right away, though then we waited a while for the doctor.  The nurse said the radiologist hadn't seen much, and we began to realize that the nurse-practitioner might have misunderstood the report.  But they did want to do the cat scan.  After another wait they took us back and again they included me in the process of positioning John.  This time he was stable by himself and the technicians just asked me to go to the booth with them each time they took an exposure.

Eventually the doctor came and reported they didn't see any break at all, it must be just a bruise that made it hurt so much.  He gave John a  prescription for pain medicine and we got home about 8 pm.

I have had the principle "avoid the emergency room at all costs," but this was actually a good experience.  We weren't there much over two hours, and that on a Friday evening.  They were much more willing to let me accompany John for everything than I had expected.  I don't know if it was just because they saw he was on Aricept.

When we got home I made him some carrot soup, but told him he would have to ask Paul to help him get in his pyjamas.  Today he has not dared try eating anything that requries chewing.  I'm discouraged by the strain.  Can I really go away next weekend?

antidepressants

I went on Zoloft (actually the generic) a couple of months ago, feeling that I needed help to get through the stress of house renovations and moving. I'm very medication sensitive and I found that 1/2 a 25 mg. tablet daily was plenty, in fact when I went to my gynecologist, who prescribed it, for my annual checkup I complained that I can't cry any more.

She was concerned about my cholesterol numbers. My HDL is always very high--over 80--and my triglycerides were excellent (34), so it isn't clear that I have to worry. But my LDL was up a lot. I had been on vacation and eating less carefully, but my A1c was down slightly at 6.0, which suggests that my diet hasn't gotten worse. I couldn't figure out what had changed, particularly as my LDL had been trending downwards before that. The doctor asked if I was doing less exercise and I am doing less than two years ago, but not less than at the time of the last test. John's experience is that exercise improves triglycerides and HDL, not LDL. I'm pretty careful to avoid transfats.

I'm already taking fish oil, so what to do to bring my LDL down? As I started to look for information on approaches that would fit my way of eating, I discovered scientific papers that say Zoloft raises LDL. I'm going to taper off the Zoloft and see what happens. See if my LDL improves (the doctor wanted another test in 2-3 months) and see how I feel. One source suggests that Celexa might not have the same effect, if I find I need an antidepressant (and it comes in pills than look like they can be split to get the lower doses that work for me). But I'm hoping I can hold on to this stabler place now that I've found it.

how to prioritize

I ordered a chair for John's aunt, which she needs when she moves back to her apartment Monday. It was ready today but I didn't get the message, and I don't know what I would have done if I had. I don't have to be at every session of the conference this weekend, but it seemed fairly important to be there this afternoon. John didn't have time to go get the chair even if I had gotten the message. The store isn't open over the weekend (it is an oldfashioned office furniture store). Do I go pick it up Monday morning? It would disrupt my day, but I could certainly be back in time for my class. Tomorrow I should probably go to Florence's apartment when the physical therapist is there. I just hope that isn't at the same time as the session I most want to see at the conference. Should I cancel the commitment I have Monday afternoon so I can help with her moving back to her apartment? Or the commitment I have Wednesday so I can help John take her to the orthopedist?

getting things done

After letting out frustrations this morning, I went on to have a productive day. Most significantly, I filled out the college financial aid form with estimates, because our taxes aren't going to be done in time (one school has a Feb. 15 deadline). I can't believe it is done. The next thing I need to do is pull together a paper for a professional society meeting at the end of the month. This is going to be a hard week--I've got grading to do, we are going to see our son in a play Thursday night, and then I need to attend a local professional conference with sessions Friday evening and Saturday all day and evening.

I started the process of letting out my frustrations by doing an art work:
It is my character to get stuck on "it's not fair;" I may need to keep letting out those feeling now and then rather than thinking I can get over them. At least I get a kick out of creativity even when I am letting out negative feelings--the figure above is sculpted from paper pulp (like making homemade paper only not flat).

exercise

Exercise is what is keeping me from hopelessness. It seems so unfair to have the program I've built up the last five years at work destroyed. I never wanted to do administration until something came along that I so deeply believed in, and now it is coming to nothing. I shouldn't complain too much, my job isn't at risk (though a 10% pay cut is likely). But I still feel like the things I care about are being stripped away from me. At least I still have my triathlon training. I got in a 19 mile bike ride with a friend today and felt so much better.

too many directions

I went to the nursing home this morning (at John's request) to meet with the dietician because John's aunt is unhappy with the food she is getting. And I went back in the afternoon after my teaching was done to meet with her doctor, who just got back from out of town. He actually said she might get back to her apartment in a month, it depends on how determined she is. Totally determined.

I'm teaching a three hour class alone tomorrow afternoon--the professor I coteach that course with is out of town.

An email came out this afternoon proposing a new curriculum that would abolish the program I run and replace it with something else, which looks like it could be a larger version of the same thing. At the very least, it could offer the same kind of opportunities for me and for the other professor who works with me. But oh, that is going to be a lot of work.

Caregiver feelings

On a discussion board I read, someone wrote:

It has been more than 6 years that I’ve been d.e.v.a.s.t.a.t.e.d. by the
changes in his life -- and in mine.

• dazed
• emotional
• vulnerable
• anxious
• shattered
• torn
• angry
• terrified
• exasperated
• drained

my health

When my family doctor saw me in July she was concerned--my A1c (a measure of diabetes control over several months) was up significantly and my LDL cholesterol was up as well. She was also concerned about my emotional struggles with caregiving and told me that menopause is a very vulnerable time for depression. She suggested either an anti-depressant or estrogen. I said give me two months and see if I can find a solution for myself.

Today she was very pleased with my numbers. My A1c is back to its usual excellent level (5.6), my LDL was lower (still somewhat higher than recommended but with an HDL of 78 I refuse to worry about it much). I also reported that while it is still hard I don't have days when I feel hopeless.

I actually give a lot of the credit to the supplement I am taking, which lowered my fasting blood glucose 20 points (from a high level due to stress back to my usual level) and seems to take the edge off the depression. My exercise is also back up some from what I had time for in the spring and I am being careful to stick to my low carb way of eating.

The doctor asked me if I was worried about my weight. I said I've tried to take the attitude that if an extra 20 pounds is what my body wants to get me through menopause with nothing more than mild hot flashes, that is fine with me. But I've gained some more from stress and I am disappointed that it hasn't come off when I brought my A1c back down. I don't believe in dieting (see this for why) but I wish I could go back to the weight my body settled at when I started controlling my blood sugar (which was at the top end of the normal range for BMI).

After I talked defensively for a while the doctor said: "I'm not worried about your weight, I only asked if you were worried. If I were you it is the last thing I would be concerned about; I wouldn't even weigh myself." It was such a good feeling to hear that from a doctor, particularly one who was also telling me that she was very pleased with how I was doing in other respects.

journal workshop #2

My second writing for the journal workshop, with prompts in red:

Which parts of caring for a loved one give you joy?

At present I don’t feel a whole lot either of joy or of love. At the time when John was diagnosed I was feeling dissatisfied with the relationship even though we have usually worked together well. I had grown and changed and he wasn’t willing to grow with me. I don’t know how much of that was already the disease. My other issue with love is that I always expected love between husband and wife to be some balance of meeting each other’s needs. I haven’t learned how to feel love for him when there isn’t reciprocal care, when he doesn’t respond to my needs. I did that kind of caregiving for my kids when they were small, of course, but I had John to take care of me. It wasn’t easy for me; I felt I was giving what I didn’t have. I depended on John to give me what I was giving my kids so I wouldn’t feel resentful that I was giving what no one had given me. He remembers a day when I was frustrated with our son as a fussy infant and got angry at John. He said “Don’t take it out on me,” and I said “Who else do I have to take it out on?” I don’t have a partner of that sort in this caregiving.

The parts of caregiving that are easiest for me are the planning parts. I’ve gotten our financial situation into shape, from his retirement to my investments to buying long-term care insurance on myself (too late to buy it on him). This week I started work on changing the beneficiary on my retirement accounts, just in case I die before him. I’m also working on probably moving in a little less than a year, planning renovation of another house we own to be handicapped accessible. (It is currently rented to students, so it needs a lot of renovation.) I’m also good at understanding medical information and dealing with doctors; I know John is doing better than he would be on his own because of my attention to getting him the right medical care.

Which parts do you resent?

I try to avoid getting into a place of doing something resentfully—that isn’t good for anyone involved. The place where I am struggling most with resentment these days is when I set something up for John and he doesn’t follow through. He went to an exercise class I found for him and said it was just what he needed, and more than a month later he hasn’t been back. He said he would mail a package so I put what needed to go in it and the address all together, and then over a week later he hadn’t gotten it done.

I’m learning to be better at figuring out what is easier to do myself and what I have the patience to let him do. But there are things I can’t do for him, particularly at this stage when he can still manage activities of daily living on his own. Maybe I should exercise with him, but what works for him isn’t what I want or need.

What do you miss about your old life and what do you love about your new life?

I miss the freedom to train (run, bike, and swim) 12 hours a week as I was doing a year ago. This year I’m averaging 6 or 7 hours a week. I miss time when I can make my own professional writing first priority. I miss having someone to divide tasks with. I miss being taken care of sometimes. I miss being middle-aged, not yet thinking about retirement. I miss all those expectations that life would go on the way it was going. I also miss my kids now that they have gone back to school.

My first reaction was that there wasn’t anything I love about my new life. But I love the support of my daughter and my therapist. I actually think I also love the sense that everything is important. My planning and my decisions matter. We can’t take life for granted so much any more.

one back to school

We took our son to his senior year of boarding school yesterday. I started to cry when we met with the college counsellor. I feel like worry about John's and my future has distracted me from helping our son with deciding about colleges. He was supposed to write a draft of an essay this summer, but he didn't even start it. I did remind him a few times, which leads to the other time I cried, talking to his advisor, worrying whether he will learn to step up and take responsibility for himself.

I'm hoping that pushing our son to take more resonsibility for himself because of his father's illness is coming at a time when the challenge is right for him. But I worry that it must be awfully hard for an 18 year old boy to have his father beginning not to be a father figure any more. His sister is younger but more resilient and more able to talk about what she is feeling. The idea that this is going to be hard but we are all in it together as a family works for her.

about me

I'm doing a journaling workshop for caregivers and this week's assignment is to write about ourselves. This is what I wrote (with prompts in red):

Write about who you've become.
I’ve become several things I never thought I would be. I’ve become an administrator on a small scale, running a program at work that I deeply believe in and that has a significant impact (every student in the university has to take a course in our area). I’ve become an athlete. And now I’m becoming a caregiver.

Write about who you used to be.
As a child I tried so hard to be good. I was sexually abused by my mother and grandmother but I hid the pain all too well. School was my safe place. My junior year of high school I got excited about learning and carried that through college and graduate school. In college I discovered feminism, which gave me a way of accepting myself as a woman, but I didn’t expect that I would marry. Feminism even led to my first interest in religion (having been raised in a culturally Christian but atheist family). I was baptized when I was 27 and joined first the United Church of Christ (I’m now an Episcopalian).

I was 31 when John and I married and he was 41—a first marriage for both of us. We understood marriage to be an equal partnership. Our first child was born three years later. After our daughter was born not quite three years later we had a tough couple of years; first our son had kidney infections because of a problem that was corrected eventually by bladder surgery, then he was diagnosed with Attention Deficit Disorder and language issues (we just barely escaped an autism diagnosis), then he had eye muscle surgery. He’s now doing well going into his senior year of high school but I do worry about finding the right college.

I did a lot of work from about 1995 to 2005 on my own inner healing with the help of a wonderful patient therapist. I learned very much to trust my own journey. John was very supportive, though a lot of responsibility always fell on me because I was a better organizer than he was even as I took myself apart and put myself back together.

Write about what is and/or is not working in your life today.
Today I am confused. John is in the very early stages and friends say they don’t see him as having changed, except that he moves more slowly. Yet I have had to take over most things that are complex, such as financial planning. He did take our son to visit colleges for two days this week, and they report that the trip went well. He made those arrangements himself three weeks ago, but it took him all week. He was too busy with that all week to fill out a form related to retirement or send a package he said he would send or go to exercise class or physical therapy.

Mostly I do almost all the family organizing, while he can still take care of himself. But even doing all the organizing feels overwhelming. It is hard to decide how much taking care of John needs. I go to all doctor’s appointments with him, and I remind him of things. I straightened out his medications in May and the prescriptions are messed up again; I may need to take that over soon. I feel like he isn’t my partner any more, and I feel guilty about my coldness.

I hate most how unpredictable everything is. I don’t know how to put the pieces together.

tired

Two nonstop days of random stuff. I'm tired and discouraged. After sounding last night like he was getting into the idea of moving, John told our daughter today that he is going along with the idea because once I get something in my head nothing will shake me. And our son finally paid attention (after not being interested in going to look at the house earlier in the week) and wasn't happy that he won't have a room that is all his own. I've got too many things to do and less than a week before classes start.

I read an article on caregiver resentment today (page 5 here). At this stage I have plenty of time away from caregiving. But I have mixed feelings about the advice to take control. That has certainly been my approach, to get things like finances in better order because that is something I have more control over. But there are several dangers to taking control. One is that I might slip into thinking I can control what is at heart an uncontrollable situation. Another is that it is scary and overwhelming to feel responsible for everything--what if I make a mistake? And finally it is simply too much to try to do.

I'm going to take care of myself and go to bed early.

sharing tasks

When we met with the therapist today, John said he felt I see him as incompetent. I said it isn't that I see him as incompetent, but I do find I have to do almost everything, and that comes to almost the same thing on a practical level. As we talked back and forth about his not getting done things he said he would do, he said: "I don't think you understand that it took me all evening to load the dishwasher." There you have it--I can't expect him to do very much because the disease makes him so slow. To me, that makes my dilemma clear. I could load the dishwasher in 20 minutes, probably less(we had one guest for dinner last night and a slightly more complex meal than usual) .

I suppose I need to learn to count effort, that he spent all evening doing a family task. But I'm still panicked about how can I possibly do everything myself, particularly when I go back to teaching next week. So it scares me that he can get done so little. I know I should encourage him to do as much as possible. But isn't there a better use of his time than spending all evening loading the dishwasher? I don't think there is; he is now both loading and unloading the dishwasher when I cook after a conversation about his doing more than his share of things he can still do.

I know my attitude is lousy. I'm thrashing; I'm just not good at this. But the only way I know to get to a better place is to be honest about my feelings.

depression and supplements

I am not prone to depression. I tend to pop out of it after a few days, and I have a lot of experience working through painful feelings. But facing the future with John's diagnosis has been tough. A week and a half ago I found myself so discouraged that I wasn't finding any resolution to the pain and grief that I thought maybe I was ready to try antidepressants. That is a strong statement for me--I have never taken antidepresssants in my life and I try to avoid medication, for one thing because I am very sensitive to mental side effects (when I had chicken pox as an adult the doctor tried to give me medicine to help the itching and one antihistamine caused me to cry for three hours).

That day I happened to read a blog in which someone wrote of a herbal remedy that had helped her in a similar circumstance. My first question was whether it was safe to take. A mainstream site on supplements doesn't have any serious safety concerns. And the web site for the company gave me the impression that they weren't likely to be buying contaminated ingredients from China. So I figured I would give something called Serenity formula a try--if it worked by the placebo effect that would be best of all because I wouldn't be messing with my body but I would be feeling better.

I've been taking it for four days now. My initial impression was that it took the panicky edge off the emotional pain I have been feeling. It didn't blunt my feelings too much, I was able to do good work in my therapy session this week, and so I can't separate whether that or the supplement is making me continue to feel better. What I am impressed by is that my morning fasting blood glucose has been going steadily down. I just tested it a few times before I started the supplement but both times it was over 120, which is terrible for me. Since I started taking the supplement it has been lower each morning--this morning it was down to about 105, which I consider the high end of ok. I believe the high fasting blood glucose is a stress reaction and the downward trend suggests that this supplement really is reducing my physical stress reaction. I also notice I have fewer carbohydrate cravings.

All that may just be that I have kept up my exercise and had a chance to recover from my travels. But it is good news in any case. After a few weeks I may try not taking the supplement and see if my numbers go back up; that would be more solid evidence.

I don't want to discourage anyone who is taking or thinking about taking anti-depressants; they make all the difference for some people. And I'm no expert in alternative medicine. But this is a new step for me in what I can do with the philosophy: "My body, my science experiment," and I am pleased with how it is working for me.

What next?

I'm very fond of the Christian folk music of David Bailey, so I signed up to get his email newsletter. Yesterday I got a newsletter in which he told the story of his cancer diagnosis and wrote:

A week after that came the long walk and the epiphany I've told so many about - the one where I yelled "why me" and God showed me a better question: "What now?" So today, 12 years later, I find I am still asking it. And while the answers are still sometimes elusive, I still enjoy asking.

That struck me, though I am trying to figure out the tone of voice of "What now?" I don't think it is "Oh no, what else is going to go wrong?" He may mean it as action: "Given that this is my situation what is the next step?" But it appeals to me in a tone of bemused curiousity that implies we are passengers on a wild ride. What unexpected thing is going to happen next?

Doctor's appointments

Yesterday I went to my gynecologist for my annual checkup and John had a neurologist appointment. The gynecologist saw how stressed I am and wanted to put me on estrogen or an anti-depressant--she said menopause is a very vulnerable time for depression. I said let me try to handle it my way for a while longer. My A1c (a diabetes test) was up from 5.7 to 6.5--perhaps some from eating less carefully while traveling but I think mostly from stress. We agreed to schedule another appointment in three months. I fear that an antidepressant would tamp down my feeling so I wouldn't be able to work through them. But right now I can't imagine how to work through them, how I will get to deep acceptance of my situation. I am going to try a herbal supplement for stress.

We came away from John's neurologist appointment with prescriptions for three things I had decided to push for:

• Aricept, an Alzheimer's medication that helps many people with LBD
• A blood test of John's B12 level
• An evaluation of his driving

John has an appointment with the Parkinson's specialist at the end of the month, but I didn't want to wait until then to start on an Alzheimer's medication. I've heard reports that at least for some people with LBD it doesn't just stabilize them but brings real improvement. It is going to take a while for me to have any sense of that, but the immediate good news is that it is not causing John stomach upset.