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.

Escape fantasies

Today with my therapist I ended up trying to come up with escape fantasies. The idea is that I am feeling so trapped; it would be better if I felt I am John's caregiver because I have chosen that role.

The problem was, I couldn't even come up with a fantasy of running away that seemed at all realistic, even leaving aside how it would affect our children.

If I stayed home but stopped taking care of John, there would be consequences that would make my life worse (or at least I would lose the possibility of making things better). His getting the various disability payments would be at least slowed down (Today I found an unopened envelope in his mail from last week that had a form that was supposed to be sent in quickly). He wouldn't push to try Alzheimer's medication or be tested for B12 deficiency, either of which could lead to actual improvement.

If I ran away, left town, until I wanted to come back, there would be even more of a mess when I got back, particularly financial. My eye was caught by a 30-day retreat next summer, but I don't think that will be realistic then.

The fantasy I wanted to pursue was of disappearing, taking on another identity and getting a tiny apartment and a job in a bookstore in some completely different part of the country. My first reaction what that I would hate to betray my professional colleagues that way. The bigger issue, though, is what a mess that would leave, if no one could access my money because I had disappeared. John would run out of money in a few months and what would he do, sell things? He does have one friend I think would come and help him but no family he is close to except his 95 year old aunt. My mother and sisters would probably end up helping him.

His aunt is a whole other story. She lives in an apartment in a retirement community near us and John is the only family member helping her. She is still sharp but due to knee problems can barely walk with a walker. She doesn't depend on John for too much; she pays someone to drive her. But John doesn't want her to know he has Parkinson's because she already fusses about his health in a way that offends him. I would think it would be obvious but she hasn't asked. He told her he had retired early because of new bureaucratic rules affecting his job. I am very uncomfortable with lying, and this was in front of me (we try to have lunch or supper with her once a week). Not a good situation, with lots of potential to get worse.

Asking for help

I had a nice bike ride yesterday but was teary in church. Two people saw and gave me a hug after church and that helped a lot. The rest of the day was fine--I'm very lucky that I don't tend to get stuck in depression.

I am on the pastoral care committee for my church and we had a meeting yesterday evening. Someone brought up the topic of people not feeling it is ok to talk about their problems in church. I piped up with a general statement that grew out of my present situation, which almost everyone in the group knows (a couple of people who weren't at the last meeting may not know). I said I want to take a class in how to accept help. One person liked the idea very much--she wanted to take that class too--and others liked it in theory but either weren't sure people would come or thought it should be something other than a class (like a sermon).

The rector (which is what we Episcopalians call our senior pastor) said that he thought people didn't ask for help because they don't want to show weakness. I didn't respond immediately because the meeting had gone on too long already, but afterwards I sent him the following email:

I don’t think the primary reason people don’t ask for help is fear of appearing weak. I see several other reasons as important:

• Other people have more serious problems--I shouldn’t ask for help because other people need it more
• I don’t know what to ask for—I imagine there is a menu but I don’t know what is on it and I’m afraid I will disturb people if I ask for something that isn’t on the menu
• I am afraid that other people will think I am asking for too much, taking more than my share
• I don’t know at what point it is appropriate to ask for help and I don’t want to violate the unspoken rules
• I’m afraid the unspoken rule is: If I can possibly do it myself then I shouldn’t ask for help. If it is only appropriate to ask for help when there is no other choice then I’m not sure I have reached that point
  
  

I think my wish for a class or workshop is on one level a wish for someone to tell me the unspoken rules. Clearly I’m stuck in wanting to be good, to do it right. (Beneath all that is fear that I don’t deserve help.) Instead of rules, what would actually help me is stories/testimonies of different kinds of help given and how the giver didn’t resent it, so I can imagine such scenarios.

I will give you an example. Is it appropriate to ask if someone (perhaps a current or former youth leader) would do practice driving with my son, who is 18 and hasn’t gotten his driver’s license? My son did drivers ed at school but wasn’t pushing to get his license and we dropped the ball on getting him out to practice. Or should I just pay a driving teacher to work with him?

I'm working on learning to ask for help, but I really don't know how.

discouraged

I feel so that I have lost my freedom. I don't want to be here. I don't want to be doing this. Because I'm good at organizing and at figuring out medical things I will do well at caregiving. It even takes a kind of creativity to find solutions. But it takes away the time and energy to have much creativity in other areas of my life, to explore and go in new directions.

It is getting light now and I need to move from using my laptop in bed because John has woken up from his chair in front of the TV and is getting ready to go to bed. So I will go for a bike ride before it gets too hot.

Flies

John came through last night—he not only made dinner but cleaned up afterwards. I slept pretty well but was still groggy in the morning. And my eye still hurt when I blinked--the medicine didn't seem to be helping at all. I called around until I found an ophthalmologist who could see me, but he didn’t see anything wrong. He didn’t deny what I was reporting entirely—he said it was probably the beginning of a stye. But it still felt like another experience of my pain not being seen and believed. I haven’t had a stye in 20 years or more, but it makes sense as something that might be a result of stress (particularly as I don’t ever wear makeup, which is the other thing that can cause styes).

John got focused today on flies. The house has a screened porch that connects the two parts of the house, and there were a number of flies inside trying to get out. First John wanted to leave the kitchen door shut on a lovely sunny morning so no flies would get into the house. Then he broke a large bottle of homemade olive oil and balsamic vinegar salad dressing trying to kill a fly. Then he drove into town solely for the purpose of buying a flyswatter. Punding here we come. But I don't think it is the result of too much levidopa, as such behavior was growing worse before John started medication.

I wish he would think about what we might do to enjoy the day instead. I suggested to our daughter that she would have to motivate us if she wanted to go to the beach. She and her brother took a walk on the beach alone (I was just back from the doctor and helping my mother with a car). I would have been happy to go out on the boat if someone else had gotten us moving. But with the kids taking a vacation from their ADD medication I can’t really expect them to do it.
We have friends coming tomorrow for one night. It happens to be my birthday, though I am trying to ignore it. My mother said I am too young to want to ignore my birthday. I’ve never been unhappy about getting older, but right now I don’t want to think about my birthday because I feel like my future has been taken away from me.

Thank you

Thanks for all the support in response to yesterday's post, both in the comments and by email (pam55sc at gmail). It helped a lot. I'm going to start making a list of John's long-term behaviors that I think are making this harder (such as listening to books on tape all the time). I gave up on getting him to change those things long ago, and I doubt he will change now when he is becoming even more set in his routines. But at least if I show such a list to doctors they will understand more.

Yesterday was frantic getting ready to leave on a trip, but no disasters so far (except in trying to move things to a new laptop I may have lost 2 years of logs of my running, swimming, and biking). I had arranged for John to get all his prescriptions refilled at once, so hopefully he can't mess up what he brings if everything is already in one bag. I will be traveling the next few days so I may not post every day. I should have more time once we are on Cape Cod, at least until we leave on our big trip.