Tuesday, December 22, 2009
I'm wishing for help with Christmas. Our daughter and I went and got a tree today and I got it up, but no one has offered to help with decorating it so it isn't decorated. John hasn't been feeling well this afternoon/evening, so I shouldn't complain about today specifically. But more generally, Christmas is too much work to be trying to do mostly on my own. I'm ok with cooking a traditional meal even if I have to do most of the cleaning up too. But even if my daughter will help me some with decorating, having to do the cleaning up makes the decorating seem too hard. I need to think about what I would want in a simpler Christmas.
Tuesday, December 15, 2009
I've been trying to set up an alternative for our son, who is in his first semester of college and flunking out. I wanted to make sure he had another choice and doesn't have to stay home and deal with his father's illness unless he chooses to. And today I heard the good news that he is accepted to what was originally his second choice college for the spring. I'm hoping he has had enough time to learn his lesson, but I think a fresh start will be a relief for him.
John was complaining yesterday that I don't tell him things. Actually, I make a pretty good effort to keep him informed. Sometimes he forgets, sometimes I don't tell him because I don't want to spend the time and answer his questions and have him second-guess me, and sometimes I don't tell him because of my resentment that he doesn't share the burdens more. He said he thinks I am angry at him for getting sick. I said I am angry at what has happened to my life but he is just going to have to live with my strengths and weaknesses. I'm good at working things out practically, but I'm sometimes going to be impatient or irritated.
Friday, December 11, 2009
Clozapine is the only antipsychotic shown to be efficacious for the treatment of PD psychosis, although quetiapine is more frequently used because of convenience. Concerns about antipsychotic sensitivity in DLB patients may prevent antipsychotics from being tested further in this population. There is also preliminary evidence that cholinesterase inhibitors may have antipsychotic properties in both PD with dementia and DLB.source: "Presentation and Management of Psychosis in Parkinson’s Disease and Dementia With Lewy Bodies," Daniel Weintraub, M.D., and Howard I. Hurtig, M.D. Am J Psychiatry 164:1491-1498, October 2007 http://ajp.psychiatryonline.org/cgi/reprint/164/10/1491
Wednesday, December 02, 2009
Right now I need to go check on her. They didn't have a room ready for her in the nursing home until today so I had to arrange round the clock care for her. John was coping with helping her until the bad news came, but then last night he said he couldn't bear to go back.
Monday, November 02, 2009
Today he asked me if he needs to cancel physical therapy and massage appointments on moving day. I told him yes. I think moving day is going to be overwhelming for me trying to make sure everything ends up in the right place. I also told John that in the two or three days after we move, the woman who is helping us pack and unpack would put away his clothes and set up his partial kitchen without him if he made other plans in the afternoons.
I got some packing done today I had been avoiding, but now I'm feeling discouraged. The big chunks are getting done but that makes the small scattered things more visible. And the most unreliable person I hire, who was a big help Friday, didn't show up today.
I have people who offer to help, but I don't know what to ask for. I'm thinking I want to organize a picture moving and hanging party for Friday (after the movers move the boxes and furniture next Tuesday). What can I get a 12 year old boy who really wants work to do? Do I want friends to help on moving day or do I need to be able to focus on telling the movers what to do?
Saturday, October 31, 2009
Friday, October 23, 2009
The plan is to move Nov. 2, which is a tight deadline but looks possible.
Here are some pictures:
John's sitting room has a laminate floor and is walk-out to a carport with no step at all.
John's bathroom--the folding grab bar to the right of the toilet is not mounted yet. The toilet seat is a Toto. The wall is blue below the chair rail to make the toilet easier to see.
Tuesday, October 20, 2009
John is a little more focused on packing than he was at first but there is still a lot to do. And I spent the afternoon today working in the yard of the new house, not packing. I realized today that we have 5 different people we hire to help us with yard work and packing, all of whom are pretty unreliable. I got upset Sunday when someone who had repeatedly said he was coming didn't show up, but I found someone else to help me get the bushes planted before it got too cold. I'm trying to be more laid back and figure if one person can't help someone else will be able to.
I will post some pictures once the grab bars are up. John's space is going to be really nice.
Wednesday, October 07, 2009
The roofer came today and did a minor fix that he thinks will stop the leak in our current house.
The plumber pushed down the tree that wouldn't fall and the two dead trees next to it with his backhoe and didn't charge me anything. Another subcontractor said the plumber just wanted to play with his toy.
The refrigerator that seemed not to be working did eventually get cold (it took more than 24 hours). I was too efficient and ended up paying for a service call for a repair person to tell me I should wait longer, but it is still good news.
The renovations on the house we will move to are beginning to get to the last stages. The painting isn't all the way finished yet but most of the plumbing fixtures were put in today and the appliances come tomorrow. The big thing still to be done is laminate floors on the lower level and sanding and polyurethaning hardwood floors on the main level and in the attic (where more oak flooring needs to be added in the new dormer area). The light fixtures should start to go in Friday or Monday.
The realtor says he is hoping to have an offer for us on our current house tomorrow. He doesn't know if it will be a good one, but if that did work out it would be a huge relief of stress. We had an offer earlier in the summer and agreed on a price but it was contingent on those people selling another house that has not sold.
Our kids are coming home for the long weekend and I have Monday off.
John told the therapist that he thinks the antidepressant (Wellbutrin) is helping him. I don't see much difference in his ability to get things done, but he seems to be a little more engaged--now and then he does notice that I have feelings. He started going to a specialized hand therapist and his hand is finally getting better. It will be interesting to see whether he wants me to continue to put on his socks and shampoo his hair as his hand recovers. He doesn't seem to mind being dependent, while I wish he tried harder to do things for himself.
Monday, October 05, 2009
I had some landscaping taking care of last week, regrading on both sides of the house so the water flows away from the house and not straight at the driveway. I got beds along the foundation prepared for me at the same time. Saturday the university botanical garden had a plant sale, so I bought a good sized arborvitae (emerald variety), to go near the house between two windows where it looks a bit blank. Then I took John to a funeral of someone he cared about and then went to Atlanta to pick up a chair my daughter and I had ordered.
Yesterday (Sunday) started out with two men coming to move several appliances. I didn't see any need to buy a new washer and dryer and refrigerator, but since there were decent working ones at the new house (from when it was rented to students) I decided to swap now so the refrigerator could be installed along with the new appliances later this week (it needs an icemaker line). The person who was coming to help me clean couldn't come because of an injured foot so I unloaded and cleaned the refrigerator and cleaned behind it and behind the washer and dryer when they moved them. John tried to help a little with the cleaning but he is so slow that his help didn't amount to much. He didn't try to help reload the refrigerator. This morning I had to call the appliance service people--the refrigerator that we moved to our current house isn't cooling properly.
I was left with the job of capping off the icemaker line at the old house, as the refrigerator we moved there doesn't have an icemaker. My first trip to Lowes I came home with a cap that was too big, but John went back and bought a smaller one and that worked.
Meanwhile, I had someone coming to cut down some dead trees. They are cedar trees and the one he started with proved to be hard to cut--he borrowed a splitting maul from me to add to one he was already using to wedge the tree in the right direction. He eventually got it cut but it didn't fall--it is held by vines to two other dead cedars. He was going to come back today with a winch but it is raining.
While he was working on the tree I worked on digging a hole to plant the tree I had bought (ironically also a kind of cedar, but one that grows 12 feet tall and 3 feet wide). The clay soil was the right wetness to dig relatively easily so I dug a really big hole and mixed in composted wood chips and lime and fertilizer. I should have asked for help moving the tree and the 40 pound bag of wood chips, but I had enjoyed doing the digging and doing the whole job right. Not surprisingly my back is sore this morning.
These days I usually move to another bed when John comes to bed and wakes me up with his snoring or crying out or just shifting trying to get himself positioned in bed. So I moved around 4 am last night to my son's room (since he is away at college) and realized the bed was wet because the roof was leaking. I went up and put a bucket in the attic but I didn't get back to sleep. We have been struggling with this roof problem for a couple of years--it was supposedly fixed. I called the realtor who is selling the house and asked him for a recommendation of a really skilled roofer. He said they are either cheap or good and I said I want good.
The good news is that the roof leak in the dormer of the new house does seem to be fixed, though there is still a problem with a downspout backing up. I took my laptop back to the repair place this morning--they supposedly fixed it last week but it isn't fixed.
It is all more than I can bear.
Monday, September 14, 2009
John's massage therapist is concerned it might have been a mini-stroke. I'm not following that up because I don't think the therapy would be any different and I am not up for a new round of doctors right now.
I'm tired of cutting John's food up for him, and this is only the beginning of the journey of helping him with activities of daily living. Caregiving does not come easily or naturally to me.
Tuesday, September 08, 2009
I said something to John yesterday that seemed to get through. I asked him to try to find ways for paid help to do the things he can't do any more, instead of expecting me to do them all. Today he asked the student to clean the inside of the microwave and take out the trash.
Saturday, September 05, 2009
John fell asleep at his computer and compressed the nerve in his elbow. The result was that he lost a good part of the use of his better hand. It is supposed to get better, but more than a month later it has improved only a tiny bit. He needs me to change his socks for him and cut up his meat. I wasn't expecting to be here already.
My tentative plan is to move the second week of October. Somehow. I am teaching a full load this fall.
I am grateful that John has been able to continue to take responsibility for helping his 98 year old aunt. She took a bad fall a couple of weeks ago and I met the ambulance at the emergency room, as I knew it would take him too long to get there. But he managed after that. Amazingly, nothing was broken and after a little more than a week at the nursing home she is back in her assisted living apartment.
Wednesday, August 05, 2009
We are supposedly on vacation in North Carolina and John still seems to enjoy being here, though his hiking is really slowing down. I went back home yesterday and will go again tomorrow to deal with work and house matters. I'm worried I should be there today to look for anything in the rewiring that isn't the way I want it. I forgot to check yesterday whether they moved a switch I wanted moved--I know they didn't move another one. The good news is that they are hoping to be done today with the rewiring.
Our son missed his plane home from Spain Saturday and I had a hairraising time getting him scheduled for a flight the next day. But he is now home and with us on vacation. Next step is to get the details worked out to take him to start college at the end of the month.
I went to a Lewy Body support group yesterday, though I didn't stay the whole time because I wanted to get back to North Carolina for dinner. Still, I liked the other people and I talked about how confusing it has been for me.
Saturday, July 18, 2009
1 1/2 teasp instant coffee
1/3 cup boiling water
12 eggs, separated
1 cup sugar
2 teasp vanilla
1/8 teasp salt
1/2 or 1 cup heavy cream (optional)
Prehead oven to 350. Dissolve coffee in boiling water and place with chocolate in a double boiler over hot but not boiling water, stirring occasionally until the chocolate is melted. Beat egg yolks and sugar until thick and lemon colored. Gradually beat in chocolate and vanilla. Beat egg whites and salt until stiff. Stir 1/4 of egg whites into chocolate mixture then fold in the rest. Grease a deep dish pie pan, fill with half or less of the mousse mixture, and bake for 25 minutes or until puffed. Turn off heat and leave in oven for 5 minutes. Remove from oven and cool completely. Meanwhile chill the remaining mousse (first stir in 1/2 cup of cream whipped until firm if you prefer a slightly lighter mousse). When shell is cool cover it with the chilled mousse and chill 2 to 3 hours. The pie can be covered with 1 cup of cream, whipped, before serving.
He has terrible sleep patterns and has not been willing to try to change them. In recently months he usually falls asleep and sleeps most of the night in an office chair in front of his computer. Then he goes to bed for a few hours around 7 am. He has a chair that reclines and has a footstool and two different laptops but he likes to use the laptop in the privacy of his downstairs office. Last night he pinched a nerve in his arm and today has only partial use of his left dominant hand. I had to help him get dressed. So I expected that he would be at his worst when he got home from holding it together for a trip but he has ended up even worse.
When he is around me leaving anything hard or complicated for me to deal with, it is hard for me to imagine that he can travel alone. But he can still pull it together when he needs to. And he has lived all his life with making a lot of mistakes because of ADHD and is used to it. I discovered he hadn't put the registration paper in his car when it came in April (though he put the sticker on his license plate). He commented that he had made that mistake before.
Today's last straw was when he reported "we have a big problem," the sewer pipe had backed up into our downstairs bathroom. Guess who cleaned that up.
Saturday, June 20, 2009
I assembled a couple of shelf units for Aunt Florence. She is buying specialized things so as to get every possible bit of storage space in her smaller apartment. She wanted John to assemble them for her and he tried the first one and couldn't manage it and asked for my help. I just wanted to get it done today so that I will have as much flexibility as possible tomorrow.
Tomorrow is my birthday and I am trying to think of something special to do for myself. I cooked an early father's day dinner tonight so I can put myself first tomorrow. It is a big change of mindset for me to do something for myself on my birthday instead of expecting my family to do it for me. It feels like going in the right direction, if only I can figure out what I want to do.
Tuesday, June 16, 2009
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.
Saturday, June 13, 2009
I got to the swim meet around 10, not knowing the exact schedule. I had signed up for the 2k, which turned out to be scheduled for 11 and didn't actually start until 11:30. I had done this meet two years ago and I thought I had done the 2k then, but now that I look back at my blog I see I did the 3k that time. I was feeling fairly relaxed about it, as I swim more than 2k in practice.
It was a beautiful day with little wind and the 2k was a small group. There were people around me for a little while at the start and then I settled in to the long lonely haul. I tried to focus on keeping up my effort. The last part out to the turnaround there was more wind and a lot of wake from passing boats, so it felt easier once I had turned around.
Someone swam with me towards the end and asked me if I was ok. Do I look that incompetent? Actually I was feeling a bit discouraged, as the number of buoys ahead of me seemed to stay the same. I passed a buoy and realized people were yelling at me to turn. Only then did I realize that what looked like a row of buoys stretching ahead of me was actually buoys piled on a dock beyond the finish. So I had a very short last push to the finish. I came out feeling pretty tired, though not shakey.
I didn't ask my time; I thought I would see it on the clock which was a little ways up the beach. But just after I finished they started the 1k, so the clock had been reset by the time I got to it. The results aren't posted on the web site yet. But however I did, I am feeling less depressed.
Update: My time was 1:09:31
We asked about when the doctor thinks Namenda should be started. He said when the Aricept stops working. What I wonder is whether the Namenda would be any better than the Aricept, which John takes only a half dose of because it causes him balance problems.
John reported that he doesn't get enough air through his nose and needs to breathe through his mouth. The doctor asked about allergy symptoms, but John said it is true even when his nose is not running. The doctor suggested more exercise to strengthen his chest and diaphram muscles. John said he would go back to using our exercise bike. He does take a 1/2 hour walk several times a week, but I don't know how aerobic that is.
After we got back from Massachusetts it was several days before I got John to go visit the other house, and then he didn't say much. The renovations are in the stage where everything is torn out and some of the changes are framed in. I did get him to make a decision about whether he wanted a larger closet or more built in bookshelves. But it feels like he isn't interested, which is hard on me. It is mostly just one more thing than he can deal with--he has trouble getting the necessary things done in a day.
I'm having a tough time because the main part of the budget for the program I run at work just got eliminated. My job is safe but it is discouraging and hard to know what to do. We also got a lowball offer on our current house and they haven't responded to our counteroffer.
Thursday, June 04, 2009
He also turned down a family activity one day because he was focused on wanting to go to a favorite food store to get the nuts he likes to snack on.
His slowness and focus on his own interests also means that he doesn't do much of the cooking and cleaning up. Our daughter complained that he wasn't doing his share. When I ask him to do something he asks one of the kids to do it, until I finally complained that I wanted to ask them to do other things. He's done a bit more since I complained (and passed on the complaint that he wasn't doing his share).
Our daughter says she definitely sees a change. She says when she starts talking fast he can't understand her at all. She isn't easy to understand when she talks fast.
I'm feeling a bit resentful because I haven't done some of the things I like to do here, such as ride my bicycle. That is in large part because my daughter's boyfriend is with her, so I'm focused more than usual on family things. But John isn't, so I have less flexibility.
Monday, June 01, 2009
Sunday, May 24, 2009
I don't drink so I didn't wish I had gone. But it is hard that he does so well when he travels on his own, then comes home and is negative and confused. On Friday our son had had a driving lesson and done testing to evaluate his ADHD. John got mixed up three times in half an hour about which one our son had gone off to do that evening. And yesterday he was having particular trouble finding the word he wanted and sometimes used the wrong word without realizing it.
I think he is in a stage where he can hold it together when he is doing something he wants to do, but it is tiring so he doesn't do so well when he gets home. It makes sense that he would be awfully tired after a trip but I do get frustrated sometimes that he can't put together that kind of effort when it isn't all about him. On the other hand, I'm glad he is taking responsibility for his own happiness.
I've been deep in house renovations. After they cut a hole in the roof the carpenter and I batted ideas back and forth and ended up more than doubling the size of the dormer. He says I should take the attic room as my bedroom, it is going to be so nice. He also came up with a better idea for how to fix the staircases, which weren't to code. John initially didn't like the tile I had picked for his bathroom, but we went to Lowes to look at other alternatives and he decided he liked it after all when he saw it on a wall from a distance. So many decisions to make.
John and I walked around the badly overgrown lot with a friend who is a professor of horticulture and he told us what to save and what to cut down. I'm not good about asking for help, but I did and he was wonderfully helpful. John is eager to go after the poison ivy--something he has always gotten obsessed about. I think he also took in that our friend liked the house.
Friday, May 22, 2009
Bike 11 miles 46:01
Run 5k 43:37
Overall time: 02:00:36
I picked up my friend Pam and we biked from my house to the race, as I wanted to leave my car for my daughter and my mother to come (though in the end they didn't). We had one fairly heavy shower before the race, then on and off light showers. The race was a week later than usual and the water quite warm--I'm not sure it was worth wearing my wetsuit, though most people did. It did help for the in the water start, as I could float upright waiting for the start without expending any energy.
The water was warm but I didn't settle in very comforably to the swim. Not for any good reason; it was even easy to see the buoys with the sun not out. My swim time was 2 minutes slower than last year.
I had left my transition things in a plastic bag instead of laying them out and I was happy to put on dry shoes. Clemson attracts a lot of people doing their first triathlon, and on the bike I passed a number of people on mountain bikes. It hadn't rained that hard and so there weren't many puddles.
I did the walk-run thing for the run and was happy that my time was slightly faster than last year. The funniest moment in the race was on the run when someone going the other way (ahead of me on an out and back course) said in a tone of great surprise: "Professor Mack!" I was passed by a 67 year old in pink tri shorts on the run and I said I want to be her when I grow up.
I didn't stay long after the race because we needed to get to North Carolina for my son's awards ceremony that evening and then graduation Sunday morning. But I had fun.
Wednesday, May 20, 2009
The first task is a new dormer for the attic.
Sunday, May 17, 2009
-- Post From My iPod
Monday, May 11, 2009
Friday, May 08, 2009
Thursday, May 07, 2009
Sunday, May 03, 2009
When I got there Sunday I was a little nervous, but a teammate was much more nervous so I took charge of figuring out what we needed to know. I asked our coach what to do for a warmup (what he suggested was more than we could have done, but it gave us a starting point). People were really friendly.
The 500 free was swum with the fastest heats first so we were in the last heat, but I didn't fully focus on the starting procedure, I just knew I was going to start in the water. I forgot I was jumping into the deep end and and came up sputtering, and then it was the start. I started out awfully fast (1:05 first 50) because I was excited, so my main goal became not to fade too much. Mostly I tried to stay just below getting too out of breath. My time for a 1500 meter triathlon swim last week was 46 minutes so I had said I just wanted to beat 15 minues. When I looked at the scoreboard after finishing I saw a 15, because my last lap time was 1:15. Only after I got out did I realize that my time was actually 12:46, which I was very happy with, even if the 74 year old woman doing her third swim meet ever beat me. I got second in my age group (out of two).
There was a fairly long break and I ate a nut bar but didn't do any more warmup. The shorter events were organized slowest heats first, so I was up quickly for the IM once the next part of the meet started. That for me was the most exciting event because I did feel competent in the butterfly (which I don't always) and was in a tight race with the person swimming next to me all the way through the event. She was always a little ahead and I couldn't gain on her in the freestyle, but I tried. I was very happy with my time of 2:29 (first 50 in 1:13). I was sixth in my age group.
The most interesting event to watch was the 200 butterfly--the youngest person in the race was 49 and the oldest was 65 (the 82 year old didn't enter that one). The 65 year old won it.
My last event was the 100 free. I worked really hard and I had the start a bit better figured out, but I was disappointed by my time. I didn't stay until the results were posted, and now I don't remember if it was 2:20. Maybe I was tired, or I just pushed too hard and lost efficiency. My first 50 was 1:04, second was 1:16.
I stayed to cheer teammates in the mixed relay and still got home around noon, very hungry and with that good feeling of having pushed myself.
Saturday, May 02, 2009
We had someone take a load to the dump and it has become more visible that we have made a lot of progress. And we are taking over 10 boxes of books to a booksale tomorrow.
Tuesday, April 28, 2009
Sunday, April 26, 2009
Saturday, April 25, 2009
swim 1500 meters: 46:26
T1 (including a long run from the water to transition) 00:06:18
bike 24 miles: 01:39:22 (14.5 mph)
run 10K 01:32:12 (pace of 14:50)
I'm actually very happy with that result, because I really wasn't trained for the distance. I did about half and half power walking and running, so I was happy to end up with a run pace of under 15 minutes per mile. My last international distance, almost two years ago, was 3:59. And it was hot today: 79 degrees by 11 am.
I didn't pack for the race until right before I left, but the only thing I forgot was my Garmin. I had found a cheap hotel ($55 with tax) about 10 minutes away, so I got to sleep until after 6. I had my usual microwaved frozen quiche for breakfast and a banana about 15 minutes before the start. It was 63 degrees at 8 am--I didn't need my wetsuit to keep me warm. But I wore it--the water temperature was 70 degrees. I had swum in the lake up here on Wed. and the water was cold enough to make it hard to settle down and breathe, but the water felt a lot warmer in Langley Pond and I was comfortable from the start. I felt rather alone the second half of the swim, but I wasn't the last one out of the water. Having forgotten my Garmin, I didn't even wear a watch, so I had no idea of my times.
I had driven the bike course so I knew that there was a long hill in the first quarter and then some small rollers, but the big hill wasn't too steep. It was a two loop course and during my first loop I was passed by a lot of people doing their second loop. I took two salt (Succeed) capsules and ate a gel and a half a peanut butter sandwich. I was glad I had the gel--I started to flag fairly early on and the gel fixed that. I usually prefer one loop bike courses but this time I liked knowing what to expect the second time around.
My legs were pretty sore after the bike and it was beastly hot. But I ate a gel with caffeine and started out power walking and once the road turned downhill I was ready to run. I would run until I felt my legs were tiring and then walk fast until I felt like running again and that worked amazingly well. I was immensely grateful to a man who sprayed me with his hose in the part of the course with the least shade. I knew I was last but the water stations stayed out for me. At the prerace meeting they had told us the trains wouldn't run until noon, so I was happy when I heard a clock strike noon shortly after I crossed the railroad tracks. I was also happy when I saw the finish clock--I had expected to be slower.
I was the last finisher by about 25 minutes, and they had finished the awards ceremony when I finished. But I asked, and I was third in my age group. They didn't have an award printed up but they said they would send me one. The food wasn't quite gone--I got chili, chips, and salad. There was no line by the time I went to take a shower, so I got the pleasure of driving home clean (about 3 hours). I'm a bit sunburned and chafed and my legs are very sore. But I'm happy that doing this race despite not being well prepared worked out so well.
Pictures are here (link goes to 3 of 5--it should be possible to page through all 5).
Thursday, April 23, 2009
I'm signed up for a race early Saturday several hours away and haven't made a hotel reservation or anything. Unless something comes up that makes it seem wrong I think I will put everything together tomorrow and go do it. It would get me away from all the stress for a day.
Monday, April 20, 2009
But I don't think it is so simple. When we are adults at the height of independence we think that we would never want to live dependent and not in control of ourselves. But perhaps the spiritual lesson we might learn towards the end of life is that we don't have to be in control of everything to have a worthwhile life, to have value. I do think it better to die of something else first than to die of Alzheimer's, as my grandmother did. But I also don't think a statement in advance that "I would never want to live like that" is necessarily worth more than what the person is actually experiencing even if their awareness of the world around them has become limited.
Saturday, April 18, 2009
I had a lovely peaceful day today. Made pumpkin bread, cleared out my closet shelves (three trash bags of clothes to give away), went to a wedding shower, stopped by to get Aunt Florence her mail, and took a beautiful bike ride with a friend.
Thursday, April 16, 2009
I opened all the curtains and shades for the window washers and it was so nice to have the extra light in the house. There is a small window on John's side of the bed and he keeps the shade drawn all the time. I had forgotten how much I like the shade open.
Wednesday, April 15, 2009
Monday, April 13, 2009
Friday, April 10, 2009
Thursday, April 09, 2009
I went over Aunt Florence's list of medicines last night and saw several to be concerned about, including a hormone blocker to reduce the risk of breast cancer recurrence that can cause bone thinning. I don't think that is the right choice at 98 years old.
Three hours this afternoon with another contractor. We are hoping to have the bids by the end of next week.
Monday, April 06, 2009
Women who view caregiving as a way to achieve greater intimacy with care recipients, to demonstrate competence, and even to attain "hearts of wisdom" want to be relieved of intolerable burdens, not to upload all their responsibilities on the state.
I got home Saturday night from a conference in Rochester NY, though it was a near thing because of a seriously delayed flight. I did get one call from John while I was away about a door inside the house that he thought had somehow become locked--it turned out it was just stuck. I had caught up on sleep some while away but I still felt very tired yesterday, setting back in after my trip. John went with friends to an art exhibit in Atlanta and had a good time.
Wednesday, April 01, 2009
I'm going out of town tomorrow for three days. The person who is helping John declutter and organize his stuff will come twice while I am away. I hope it goes well and they get far.
Tuesday, March 31, 2009
I'm feeling overloaded with working on this house and a meeting with contractors coming up tomorrow about the other house. And issues at work and going out of town to a conference.
Sunday, March 29, 2009
The service ended with this song (from this album).
When I was small and adults abused me, I though I deserved it. I thought there must be some evil in me that they recognized, that made me deserve abuse. I think I just couldn't bear to believe that their hurtful behavior was totally out of my control. I wanted to believe that if only I did the right thing they would stop hurting me. If it was my fault then I could stop the pain by changing myself, which seemed much more possible than changing them.
It has been hard to accept that I was powerless, that it wasn't my fault. It is so easy to fall back into thinking if only I had tried harder, if only I had kept saying no, maybe I could have stopped them. The first step isn't to forgive them, it is to believe that I was small and scared and had no control over the behavior of adults. To believe that whatever I did or didn't do, the abuse was not my fault. If we could first believe that everyone deserves to be honored, to be treated with respect and kindness, even ourselves, then it seems to me that forgiveness takes on a different meaning. It may take a long time to get there, and that is ok.
Friday, March 27, 2009
John is usually pretty conservative in his tastes, but he seemed to enjoy it a lot. I actually had more trouble wrapping my mind around it because I grew up with such a conservative idea of ballet (my mother had a friend who danced for New York City Ballet in the 1960s). I'm glad we went.
I'm probably not going to stay up to watch (via live blogging) Tony finish his marathon swim (26 miles in a pool!), but I am moved by his dedication.
Thursday, March 26, 2009
The doctor was concerned about fall prevention. John said the last time he fell was over Christmas. It startled me to have the doctor see the possibility of John going rapidly downhill--I've been focused on not knowing whether that will happen with Aunt Florence.
Tuesday, March 24, 2009
I'm thinking of going onto an antidepressant myself. House renovations and then moving this summer, and putting this house on the market, seem like more than I can bear. And we may well have to deal with Aunt Florence's stuff as well. She is now wondering if she should move to the assisted living section of her retirement community, which would mean she would have room for much less.
Sunday, March 22, 2009
Friday, March 20, 2009
I took our daughter to her first gynecologist appointment and met with the realtor about this house. His suggested price is what I was hoping, so that is a bit of good news. Much to juggle.
Wednesday, March 18, 2009
I'm trying to remember that it may be true that if I don't do it myself it won't get done right, but that is ok.
Monday, March 16, 2009
Saturday, March 14, 2009
I discovered that I was missing property tax information because I hadn't paid the tax. Oops. I'm sure the bill got sent to the company for the mortage we paid off instead of to us, but I paid another property tax and never realized I hadn't paid the tax for our home. Taxes are embarrassingly low down here so the penalty is not a big deal. But it makes me feel incompetent and overloaded. I should at least be glad that I've found all the information the tax preparer needs.
I was in a hurry to get this year's taxes done because of college financial aid forms but it has become clear that we won't get any aid, except at one school that offers scholarships for in-state students. I wrote some letters explaining our situation but our son doesn't qualify because of a savings account my father established for him, before considering parents' income. I'm glad our son has the money for college but it makes me feel badly about not helping him much.
The big task for the break is house matters. I was reading about basement refinishing last night and discovered that there is a better approach than what I have been hearing so far--wall and floor products that will not grow mold. I have an appointment with the designer tomorrow but the two contractors I called yesterday haven't called me back yet. We have an appointment Monday with the realtor who will list our current house and I had a good conversation with him on the phone. He used to be our travel agent so John feels comfortable with him. I'm dreading what he is going to say about what we should do to make the house look better, but I've already told him that is going to be a problem for us.
Wednesday, March 11, 2009
John tends not to get around to things until late afternoon or evening, so after dinner he took our son to Walmart to buy new watches. John says he is now convinced of the possible benefits of a watch that has three alarms (Timex Expedition is what I usually buy).
Monday, March 09, 2009
Sunday, March 08, 2009
Thursday, March 05, 2009
We went from the doctor's office to the Alzheimer's early stages support group, so we were 10 minutes early. We talked for a few minutes in the car and then when other people started to arrive I said I was going to go in and be sociable. John said he was going to sit in the car and read until time for the meeting to start; 2 hours was enough sociability. I was startled by that, that he sees socializing as such a strain. The person he likes best in the group arrived late, perhaps it would have been different if that person had arrived earlier.
Wednesday, March 04, 2009
Monday, March 02, 2009
It was quite late in the morning and he hadn't eaten, but he had been drinking water. I asked the technician if it could be a result of low blood pressure and she said yes. But it still seems strange that he has started having problems--his blood pressure isn't that low and he doesn't have small veins.
He called the credit card company and it turns out the credit card I was worried about is actually in both names rather than having him as primary. We lowered the credit limit--not as much as I would have liked but it is some protection.
Sunday, March 01, 2009
I had no idea that the process took so long. I've been aware of changes for at least five years, though the first change was that my periods became regular for the first time in my life. I've had mild hot flashes for years--the only problem is that I wake up at night and throw off the covers and then wake up again freezing. Then I went through at least a year of three months on, three months off.
It has only been four months but I see more changes, so I think I am finally done that stage. The hot flashes are a little more noticeable, but still not a problem. The dryness is what I notice most. I've long used Astroglide, but this is all the time. I was surprised how hard a time I had finding non-medical non-herbal remedies on the web. My symptoms aren't bothering me enough to make me want to alter the natural process, I just want something to soothe the dryness. What I've found that looks very promising to me is grapeseed oil.
link added later: here's more on my experience
Saturday, February 28, 2009
Wednesday, February 25, 2009
I like what Barbara Crafton writes about Lent today:
Another Lent begins in austere weariness, ready for a season of spareness,
a little more quiet. Forty plainer days are just what we need. It is seven on
the morning here; our first liturgy is at eight. Remember that you are dust, we
will say repeatedly today. Remember that you are tired, that you need to slow
down, that you need to think. Remember that what you say and do has eternal
significance, so you'd best consider it closely before you say or do it.
Remember what you long ago forgot. Remember that it is never too late to begin
again to make it right, and that we don't have to make it right all by
I got a very dark mark for Ash Wednesday at the 7 am service today, unlike last year when no one noticed. The first person to comment on it was a used textbook buyer who said "That's right, it's Ash Wednesday."
Tuesday, February 24, 2009
Monday, February 23, 2009
Saturday, February 21, 2009
I said that I believed that for older people a good death is possible. Our daughter thought Florence would be a good example, I think because she has had a full life. I said I wasn't sure Florence was going to feel ready. We talked about my father's death, which was sudden, the way he would have wanted it. We didn't mention John, but it still felt valuable to me to talk about death as something that can be natural and peaceful.
Thursday, February 19, 2009
Tuesday, February 17, 2009
I'm going with them to her orthopedist tomorrow because I don't think either of them will push the doctor for the information she needs.
Monday, February 16, 2009
I got letters about our situation mailed to the college financial aid offices and got my first round of grading done. Talked to our daughter, who is upset about the death of a student at her school. I'm tired. We are doing the best we can.
Sunday, February 15, 2009
The news from my daughter's school is that a student wandered away from an off-campus sleepaway party off last night and was found drowned in a pond this morning. The girl was a junior day student.
I ordered a wheelchair today (a lightweight folding transport chair). The immediate need is for my husband's aunt, but we went ahead and bought it because my husband will eventually need it.
Too much pain in the world.
Saturday, February 14, 2009
Friday, February 13, 2009
I'm talking with a coach and I need to come up with a race schedule.
- Apr. 25 Langley Pond International
- May 16 Clemson Sprint
- June 13 Clemson Open Water Swim meet--2k?
- June 27 Go Tri Sports Greenville?
- Aug. 16 Greenville Sprint
- Oct. 4 South Carolina Half
- Nov. 7 Beach to Battleship full
I just looked up bike events and the local ones I usually do in the spring conflict with triathlons.
Tuesday, February 10, 2009
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).
Monday, February 09, 2009
I don't have the time--even this weekend I'm committed to a local conference all day Saturday. I did call about her scooter, but the person I needed to talk to didn't even call me back.
Saturday, February 07, 2009
When she first was injured I wondered whether to skip a meeting that I had promised to be at, and I told myself that if I wasn't there everything wouldn't get done right, but that was ok. I'm having trouble holding on to that philosophy. John just left the clothes Florence had been injured in in a plastic bag from the hospital until I started gathering her laundry to do. When I put the laundry in our washing machine I discovered that her bra with breast forms was in the bag from the hospital. Realizing that now she is getting dressed she probably wants that very much, I told John that the plastic bag that was over one of the hangers was particularly important, to make sure to give it to Florence when he took her her clean clothes. I think I even told him why.
That was Tuesday. Friday he called me because Florence had asked where her underwear was from the hospital. I told him it was in the plastic bag over one of the hangers. I said I had told him it was important, to give it to her right away. He said "You know I forget things." I feel badly for Florence. But telling myself it was important so I should have done it myself isn't really realistic.
Thursday, February 05, 2009
Wednesday, February 04, 2009
- I could be miserable and just endure and take antidepressants (I really don't want to do it that way)
- I could feel a calling to this new life, to the challenges I face (that is what I want but so far it isn't happening)
- I could be patient and wait for the meaning to gradually develop after I have been doing it for a while (people seem to think that is the most likely, but I'm not patient with it, it feels like just being miserable)
- I could see this as a new stage in life where instead of measuring myself by concrete accomplishments I need to be aware of the more subtle ways in which I make some contribution, some difference in the world.
I see potential in that last one because I've been struggling not to fall into feeling that somehow I'm being punished or taught a lesson by losing so many of my hopes for the future at once (John's illness and the almost-definite dismantling of the program I've spent the last five years building at work).
I'm pretty good at looking for opportunties when things don't go the way I expect; this would be a similar mindset of seeing the more subtle good that comes from what I'm doing. My program may end but the professors who taught in it will take those ideas into other courses. John and I can't do as much as I had hoped but what we do is still a role model to our children.
Sunday, February 01, 2009
Saturday, January 31, 2009
John said he wanted to go so I made plans to have coffee with a friend and then be home in time to leave around 10. It was maybe 10:15 when I got back; I knew he wasn't likely to be on time. It was about 11:15 before we left the house. I did other things while I was waiting for John so I didn't get terribly frustrated. But we both had been looking forward to lunch at a Chinese or Indian restaurant in Atlanta. I had had breakfast before 8 and knew I shouldn't go that long before eating lunch, but I really didn't want to stop at a chain restaurant along the way instead of the ethnic food I had been looking forward to.
It didn't help that I took the time to stop and put air in the tires of John's car (which I was driving because it gets even better gas mileage than mine). A warning light had been on for weeks. I noted it a couple of weeks ago and he said he hadn't had a chance to look in the owners manual for the proper air pressure--I told him it was on the door post but he still hadn't gotten it done. I wasn't going to drive to Atlanta that way.
We decided the closest good lunch was a good Chinese buffet on the near edge of Atlanta, but then I couldn't find it. So then we went further to an Indian restaurant that John knew he could find. But by then it was almost 2 and my blood sugar was so out of whack that food really didn't make me feel better. We did our shopping at Dekalb, but it was terribly crowded. I had been looking forward to the expedition but I really didn't enjoy any of it. We did buy things we will enjoy: grapefruit ($11 a box), red lentils, candy, chutney, chinese eggplant, fennel, cheese, vital wheat gluten for the reduced carbohydrate bread I make...
Friday, January 30, 2009
1. I did a half-ironman in 2007 (http://deeplanguage.blogspot.com/2007/10/full-race-report-south-carolina-half.html).
2. I'm signed up to do Beach to Battleship full in November (http://www.beach2battleship.com/)
3. I wasn't an athlete until I was diagnosed with diabetes at age 48.
4. I love intensity but I didn't really know that about myself until I began racing.
5. The only pill I take daily is a supplement to reduce stress and depression (http://us.naturalfactors.com/search.asp?mode=List&pid=762).
6. I am depressed about my husband's illness (Parkinsons and the early stages of Lewy Body Dementia).
7. When I was a teenager I wanted to be like Mr. Spock on Star Trek.
8. My other hero/role model was May Sarton.
9. I didn't expect to marry or have kids.
10. My children make me happy.
11. My parents were atheists--what started me on the path to being a churchgoer was reading Mary Daly, Beyond God the Father.
12. These days I go to two churches most Sundays: Episcopal and UCC.
13. I pray mostly when I am having trouble getting to sleep or back to sleep.
14. I want to simplify my life but I have too much stuff.
15. I'm very self-critical but I am trying to learn to be gentler with myself.
16. I wish other people saw that I'm hurting inside.
17. I'm not big on privacy because when I was a child privacy protected the abusers.
18. I haven't touched alcohol since I got pregnant for the first time.
19. I have never had my ears pierced.
20. I don't regret having missed all the things I would have learned in Girl 101 except not being able to teach them to my daughter.
21. I love my Scion XB but my Ford Escort was special to me because my first car was a Pinto stationwagon.
22. My favorite food has long been lobster, but rasberries and blackberries are a close second.
23. I like milk chocolate better than dark chocolate.
24. I wish I were better at making friends.
25. I didn't mind turning 50 but now I am not looking forward to the next 10 years of my life.
Thursday, January 29, 2009
So instead of wallowing in my discouragement, here is some information I pulled together to answer a question about Avandia for dementia:
There's a good discussion of some possible relationships between diabetes and dementia on http://diabetesupdate.blogspot.com/ The title of the post is "Things you can do to preserve brain function" and it is currently the top post.
Avandia is nasty stuff. 66% more heart attacks. Causes water retention. Causes weight gain. Causes heart failure. Causes osteoporosis. Causes macular edema. The safe way to reduce blood sugar is to eat fewer carbohydrates. The next best approach is the drug Meformin, which the life extension movement even recommends as an anti-aging drug.
If dementia is diabetes of the brain, with the brain no longer able to use glucose properly, then the promising approach is to feed the brain cells with ketones, which they can use instead of glucose. There is a medical food supposedly coming out this spring to do so: http://www.news-medical.net/?id=43094 But you can accomplish the same thing by adding coconut oil or MCT oil to the diet. See http://coconutketones.com/ A lay expert member of the Alzheimer's Spouses group has looked at the published scientific literature and says this is definitely more than quackery. The thread on coconut oil at http://www.thealzheimerspouse.com/vanillaforum/ has the best discussion I have seen.
Update: here is an particularly good link for the scientific explanation: http://www.savethesynapse.com/wp/?p=15