This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Tuesday, December 22, 2009

I miss having someone to share the work

Yesterday I went with John to the urologist, who again recommended more surgery for his benign prostate enlargement (or the scar tissue from the first surgery). They did say they could do it without general anaesthesia. John wants to try a dilation procedure first, but if that doesn't last very long he wants to find a high-ranked doctor farther away. Sigh.

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


This week our focus is on moving John's aunt's things out of her assisted living apartment, as she has moved permanently to the nursing home at her retirement community. We have one helper who is very good at sorting through things and making decisions. John is not so good at that but he did arrange several people to pick up things.

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

interesting study

This isn't information I need yet, but it is so clear I thought it worth linking:

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 2, 2009

end of my rope

Moving was hell. We had two particularly intense two day periods, when the professional movers came and when some people with pickup trucks helped us finish clearing out the old house. Then I pushed to get as much unpacked as possible before Thanksgiving. I thought things were settling down now, or at least I could focus on my job, but now John's aunt who lives in our town has to move from assisted living to the associated nursing home. Clearing out her crammed apartment is going to be a nightmare.

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 2, 2009

Not sure of anything

My packing went well Sunday but it was hard today to have to deal with last minute renovation questions and my job as well as getting ready to move. I can't tell whether John is going to be ready to move or not. I suggested he might want to stay in a hotel the night before moving day but he didn't think that would be necessary. I may suggest it more forcefully.

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

more delays

Moving is now delayed until Nov. 10. The third coat of polyurethane goes on the floors today. But I think that date will hold, and maybe even the extra painting of shelves will be done by then. John tells me every now and then that he knows I have put a lot of work into the new house and I have done a wonderful job. My first reaction is that he sounds insincere (our therapist actually agrees) but I am trying to be grateful he is that positive instead of totally dragging his heels. My hope is that 4 or 5 months down the road, when we are settled, he will tell me that I was right, our lives are better in the new house.

Friday, October 23, 2009

house progress

We accepted an offer for our old house today, so that is a huge relief of tension. No major contingencies and closing Nov. 16.

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.

John's shower:

The controls are outside the shower because the shower head had to be mounted on a cement block wall.

Tuesday, October 20, 2009

getting close

I had hoped to move this week but the house isn't going to be ready. I'm not sure whether it is going to be ready in time to move next week or not. It is getting close, but the hardwood floors still need to be sanded and refinished, paint touched up, and the grab bars installed in John's bathroom.

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 7, 2009


I had a very sore back Monday and Tuesday from preparing a garden and planting a tree Sunday, but I am much relieved it is much better today.

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 5, 2009


I had hoped to move this week but the renovations are not done, so we are currently scheduled to move Oct. 22. So it could be worse, but I need to vent.

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

hand problem

We went to the neurologist last week and talked mostly about John's partial loss of use of his good hand, which was supposed to get better (it supposedly resulted from falling asleep in a desk chair and compressing the nerve). It has gotten only a tiny bit better, though I notice the last few days John is doing some things he had said he couldn't do, such as taking out the trash. The neurologist said recovery definitely is slower than it should be, and he was concerned by how the muscles in John's arm have wasted. He wanted John to get electrical stimulation at the physical therapists office first, and if that doesn't work in a couple of weeks he will try a cortisone shot in the elbow.

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 8, 2009

getting help

We actually are making progress getting packed to move in a month. Today I found a consignment store that looks like a good place to sell some furniture we don't want. We have two helpers, one a strong student and one a woman who can work more independently, who each come one afternoon a week to help with packing. I'm hoping the woman will help John unpack and then slide into helping him manage his things.

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 5, 2009

I'm here

We had at least one of our kids home all summer but now they are both back at school. My daughter helped me a lot with decisions and shopping for the house renovation (a big help because John shows no interest). I taught both kids to drive (talk about stressful). The house renovations have been intense and are still not done--hopefully by the end of the month. Our current house hasn't sold, though there has been some interest. I've been posting renovation pictures on Facebook and instead of blogging Twitter has been about my speed (what I post there shows up on Facebook too).

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 5, 2009

feeling burdened

I've made plans to give away our cat tomorrow--John doesn't like her around because she demands attention. I'm not strongly attached to her but it is still a sad thing to do. I think I have found a good home, at least, someone who really cares about cats.

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

John is home

John went to Spain with our son, who is studying abroad there for a month. They traveled together for a few days and then John went to Madrid alone for several days. Going to the Prado was on his life list. He had an international cell phone, and called me for help with several problems. The biggest one was that he missed his plane back from Madrid to Malaga and could only reschedule for four days later. By then he was ready to come home but Delta said the flights were very full so I persuaded him to go see our son in Ronda instead of spending his days trying to stand by for an earlier flight. He's glad he went but was very glad to be home.

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


Yesterday I took John to try out a lift recliner, and he liked it. Now I need to find a medical equipment place that is a preferred provider for our health insurance and see if buying one there (with the insurance paying $300 for the mechanism) actually comes out cheaper than buying one from a furniture store. John isn't on Medicare yet, but I did get a message from someone at our insurance that with a letter from the doctor they will cover it.

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


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.

Saturday, June 13, 2009

doctor's visit

John had a neurologist's visit Thursday. John reported that his balance is worse and we both reported that he is moving slower. He asked about increasing the Sinemet but the doctor said no because the doctor found his muscles not stiff. The doctor seems most worried about falls.

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 4, 2009


Here in a different setting, where we come once a year, I can better evaluate how John's illness has progressed. The most noticeable difference is that he is even slower. It really is beginning to take him until noon most days to get dressed and be ready to do anything. That is in part because he spends time reading his email and the New York Times on the computer, but he isn't willing to do it differently in order to participate in a family activity.

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 1, 2009

vacation on Cape Cod

John and our son on Coast Guard Beach in Eastham MA. I do notice John doing less than a year ago when we were here.

Sunday, May 24, 2009

John is home

John left Monday to go to New York city for a wine tasting, returned Friday. He was very happy with the wine tasting (and went to another) and he had one unsuccessful day of museums and one successful day. He came back saying he had had a wonderful trip.

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.

Wednesday, May 20, 2009

different directions

John is in New York city for a wine tasting and to go to museums. I've settled down so much about how he is doing, and I don't think he has lost much in the last year.
I'm very busy with the house we are renovating:

The first task is a new dormer for the attic.

Sunday, May 17, 2009


Our son's graduation from high school is today. John came up Friday to attend the celebration of seniors. I told him one of us needed to attend and he reluctantly agreed, but it sounds like he enjoyed it. I stayed home because my mother and daughter were flying in Friday evening and to do my favorite local triathlon Saturday morning. We all met for the award ceremony Sat night, where our son got the drama award. It is rainy this morning so graduation in the gym.

-- Post From My iPod

Monday, May 11, 2009


Trying to get John's aunt moved this week. She holds onto stuff worse than John. And I spent much of today dealing with the house we are renovating. I'm glad I was there when the rental manager went through--I don't think the students will be getting their security deposit back. Tired.

Thursday, May 7, 2009


The meeting to sign the contract for renovations on the other house just got postponed until tomorrow, when we are also meeting with the realtor to sign the papers and list this house. And John's aunt Florence got a place in assisted living, so she will be moving out of her apartment in the next few weeks. The assisted living place smaller, but it is still a one bedroom apartment, so I don't know how much stuff she will be giving us. The timing is actually fairly good in terms of needed to focu on her--at least we've pretty much finished getting this house ready to show. But more things to deal with...

Saturday, May 2, 2009


Thursday John avoided actually working with the woman who was supposedly helping him declutter for three hours, before he finally started with her in his office (she worked on other things, but his things are most pressing). The good news is that he acknowledges that he wouldn't be getting it done without her. And she is beginning to get him to accept the idea that someone else might do the things he does his way, such as his laundry.

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

old pictures

John said that as he sorts through things it makes him sad to see old pictures of us. I asked why and he said we were so much closer then. I thought for a while and said but I feel like I was only half alive then (because I have since done a lot of work to heal from childhood trauma). He acknowledged that. I wish he had more ability to join me in that new life.

Sunday, April 26, 2009


I went away for one night to do a triathlon Saturday morning (4 hours 6 minutes to swim 1500 meters, bike 24 miles and run 10K). I was happy with my results (I'm slow but I enjoy racing) and John seems to have picked up my energy a little and worked with me more today. I got my home office straightened out and we improved the layout of the downstairs family room.

Thursday, April 23, 2009

still decluttering

I was hoping to have the house ready today to put on the market, but John's decluttering helper cancelled on him yesterday and is away for a week. John told the realtor he needs another two weeks. He is definitely making some progress. I just want it to be done, though I've still got work to do in my office.

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

advanced directives

I went to a program this evening on end of life issues put on by our community interfaith organization. The two panelists were a hosptial chaplain and a professor of nursing who specializes in policy. I asked what happens when a person prepares a clear advance directive about medical treatment at the end of life before they develop dementia, but then as the dementia develops they might change their mind. Both speakers answered that if doctors certified that the person was not able to make decisions for themselves then their earlier directive should be followed.

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

John is away

Our daughter has a long weekend but I don't, so John flew up to spend the weekend with her and my mother. I miss the chance to be with our daughter, but it sounds like they are having a good time. One good thing that has come out of John's illness is that he now gets along with my mother. He says now that he is diagnosed with an illness she is no longer so judgemental about him. I think she is less judgemental towards me too, so I attribute it to her moving towards Alzheimer's--she doesn't remember things that in the past she would have criticized. Anyway, my mother and John now seem to have made an semi-conscious alliance from their mild cognitive impairment.

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

windows washed

We got our windows washed today (the joy of living in a rural area was that it cost $12 per window). John was upset when he got home that they didn't look better, but I remember that even years ago there was stuff between the two layers of glass. He called me to tell me we needed to do something about the window washing people not doing a good job. I said I would deal with it and by the time I got home he didn't bring up the issue again. I'm noticing having to calm him down about things occasionally.

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


I have such a feeling of satisfaction when I get rid of bags of stuff and when I see spaces neat and organized (even if I am less good at keeping them that way). I don't think John has that feeling of satisfaction at all. Some of that may be new, but I don't think he ever much had it. What is particularly hard for him now, he says, is making decisions. I'm trying to take the approach of only keeping things I love. That works well for furniture and china and kitchen equipment, but I haven't figured out how to apply it to files.

Monday, April 13, 2009


Mine as well as his. I called John from work this morning and found that he was completely mixed up on who was going to come help him with house stuff when. But then he did get the taxes picked up and signed and I think he has done an application to a summer program for our son. I can't predict what he will get done and what will disappear into confusion. I'm trying to get him to get the boxes of National Geographics out of the house before he goes away Friday.

Friday, April 10, 2009


The declutterer was here for 4 1/2 hours today and while she did a lot of laundry, she and John did start to tackle his things in the bedroom. Lots of long-lost things turned up. She's coming again tomorrow, then not again until Tuesday. He goes away Thursday and I'm hoping to have the house somewhat ready to show by then. John says I may be overloading him. But there may soon be water visible in the lake behind our house--the water level is coming up after a long drought. We need to get the house fully on the market. The undergraduate and I finished the garage.

Thursday, April 9, 2009


Yesterday I had some free time and the help of the undergraduate who works for us and got the garage almost completely cleaned out. John and the decluttering person did I think get more done today than last week when I was away. The main visible result is a lot of bags of trash piled in my office. I made the mistake of complaining about lack of visible progress and John got defensive about how hard he had worked. It is hard for him, and hard for me to recognize how hard it is for him to do things that go quickly for me. I can take on some joint areas like the garage but in other parts of the house the chaos is his and I need him to go through his stuff.

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 6, 2009

no way to know

I went with John and his aunt to her appointment with an orthopedist. Two weeks ago John took her without me and afterwards told me the orthopedist said she didn't have a new fracture, just arthritis from trying to do too much while healing from the old fracture. Today I asked about the arthritis and the doctor looked at me like I wasn't making sense and said she is healing from a fracture of her tailbone as well as the earlier fracture of her pelvis. So did John misunderstand two weeks ago or was the doctor covering up something he missed then? No way to know.

book: Hearts of Wisdom

I finally finished Hearts of Wisdom: American Women Caring for Kin, 1850-1940, by Emily K. Abel. I found it helped me step back from my own experience, see it in a much larger context. She ends the book with some lessons for the future, including this:

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 1, 2009

renovation planning

I spent four and a half hours with the designer and two contractors at the house we will be renovating. The good news is that having the designer supervise the whole process seems to make sense to everyone (and his charge for that service is extremely reasonable). It was a productive meeting--everyone listened to everyone and they came up with some new ideas, particularly for how to improve a problematic stairway. But I'm tired; it is hard to deal with on top of my job and worrying about getting our current house ready to show. And it is going to cost more than I had hoped.

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

decluttering help

The woman who is helping us declutter worked for four hours on Monday and seemed to work well with John. I had a more difficult time--I felt judged by her. Some of that is me being defensive. But the important thing is whether she can get John to work through his stuff. She will come twice while I am out of town.

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


Yesterday we met with a woman about decluttering our house. The idea is that she is an expert on how to make it look good so it can be showed and sold (I have some hope--the lake is predicted to come up another three feet in the next week). She was very clear on John's stuff that needs to be cleaned up, and he seems to accept that he needs her help. Some of it was things that I have struggled to get him to clear up for years, such as at least 50 prescription bottles in the kitchen. But she also focused on some things I long ago stopped thinking about, such as the piles of his clean clothes because he washes them but doesn't get them put away. I feel great relief that someone else will be pushing him, not me. I have to admit it is worth the $15 an hour she is charging us. We can get an undergraduate for $8 an hour, but the undergraduates are in no position to tell John what he needs to do. Now I need to get more of my decluttering done so she doesn't have to work with me. I did pack up another 10 boxes of books to give away and I think I have homes for them.

Friday, March 27, 2009

an evening out

John suggested going to a dance performance last night and initially I was uncertain because I knew I had to be up late the night before and get up early that morning. But when a colleague offered me tickets he couldn't use we decided to go. It was different than anything I had seen before--ballet technique (toe shoes) to jazz and bluegrass music.

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.

Thursday, March 26, 2009

neurologist appointment

John had a neurologist appointment yesterday and I went with him. John reported that he felt things were stable, except that his feet and legs are more swollen (which is associated with Parkinson's). The doctor suggested Lymphedema Therapy for that and will check whether the physical therapist John already sees can do that. I was very pleased to have a doctor suggest something that could help without taking more medication. I think John's walking is on average worse, he shuffles more, but the doctor thought the swelling was contributing to that. I bought John at least 8 pairs of socks with no elastic at the top but he isn't currently wearing them--he says he lost them. That probably means they are in one of the baskets of his clean laundry either in the family room or in the laundry room.

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


John said he wanted to go to the therapist by himself yesterday and he says he spent most of the time in tears. That his aunt had to go back to the nursing home makes it so much more uncertain that she will be able to continue to live the way she has been living. And that reminds him of the death of his father when he was in high school and of his mother (from injuries sustained in an auto accident) when he was in college.

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

spring break is over

My focus has been on our kids but one is now back and school and the other leaves tomorrow. I did look at my books with them and to my surprise I am able to imagine getting rid of half or more of my books. I need to call the person who was recommended to me to help us declutter our current house before putting it on the market. I'm a bit daunted because while I particularly need her to help John, I have a lot to do myself. Another person who knows how to trim the bushes to make the house look best is coming tomorrow, so I've got that task underway. I don't see how I can do everything that needs to be done, even hiring people to help.

Friday, March 20, 2009

who knows

John's aunt Florence is back at the nursing home. John took her to the orthopedist, who said that the problem is arthritis in her back. But it was giving her so much pain she could no longer manage in her apartment with a walker. The idea is that with some rest she can get back to her apartment. But is this going to be the time she goes into a downward spiral?

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

complications again

John took his aunt to the local urgent care last night because she had so much pain. Urgent Care had taken an xray Sunday and said there was no fracture, but in the meantime they got her previous xray and a radiologist read them and found two partial fractures of her pelvis in a different area from the one in January. She seems to be managing ok at her apartment. John asked me to go this evening help him talk to her about getting more help. It turned out that John didn't know that she is already using some help from aides. But then again she had washed out her own underwear today. I stressed that I think the best option for her is to stay in her apartment with help from aides. She hated the nursing home unit of the retirement community so much.

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

moving forward

We met with a realtor today about listing our current house, which feels like a big step. I had told John that I might be late but he could help the realtor get started. I was early, which was a good thing because John didn't get home until half an hour after the appointment time. It looks like it won't be too hard, as we will be listing the house as is to start.

Saturday, March 14, 2009

spring break

This upcoming week is my spring break and I don't have any travel plans except to take our son on a day trip to revisit a college before he makes his decision. I'm trying to use the vacation to do things that have seemed too stressful to face. I've found most of the missing documents for our taxes, except the ones from Social Security (sigh). But when I went to look for one missing tax form I discovered I hadn't paid it. No doubt they sent the bill to the mortgage company for the mortgage we paid off, but I should have thought of that.

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

quiet evening

I have a sore throat--to be sick three times in one winter is unusual for me. I'm going to start taking vitamin D on days when I am not out in the sun. I'm going to encourage John to take it too--I think he was tested but I don't know if it was the right test. The information at the Vitamin D Council may be oversold but I think it is likely to be useful on such topics as which form of the vitamin and which test.

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 9, 2009


John says that most of the time he is in a fog, but when he focuses on something he can concentrate. On that one thing and nothing else--he forgot our appointment with the therapist because he was trying to find a study abroad program for our son for this summer.

Sunday, March 8, 2009

retreat weekend

We went to our church's retreat weekend, at a retreat center we have been going to twice a year for more than 10 years. I got a call beforehand asking if I could help with registration, but I had an afternoon meeting and couldn't. I was really pleased when John volunteered that he could. But his involvement didn't continue. He went to the program the first evening and then refused to go again, saying it didn't work for him. I'm very sad about that because he says he wants to connect more with me and this was just the kind of thing I would like to share. If he got to meals first he sat down alone. He did go to a tea organized by a friend of his, but instead of sitting with the group he sat alone. I sat with him, though I had wanted to joint the group. Interestingly he said that after I left he sat with his friend and some other people joined them. Sometimes he isolates himself because he has trouble following conversations if there is any background noise. But he says he would rather be alone. I'm an introvert myself, but this isolation strikes me as a a dangerous direction.

Thursday, March 5, 2009


I went with John for his annual appointment with his family doctor this morning. There really weren't any issues to discuss that John wasn't seeing other doctors for, so the family doctor said come back in a year. John's cholesterol numbers were improved.

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 4, 2009

taking initiative

Aunt Florence hasn't needed as much help recently and I am discouraged to see John settling back to not doing much. I don't think he went out of the house today except to take a walk--he probably read newspapers on his laptop all day. There are several issues I think he should be following up on for Florence. I know I get frustrated with him when I'm uptight about the things I'm not getting done. But there is so much to do.

Monday, March 2, 2009

snow day

We had a snow day here, which allowed me to catch up on some tasks I had been avoiding. As the roads were still slushy I drove John to get some lab work done (he grew up in Texas and has never felt comfortable driving on snow). For the second time in his life they had trouble drawing blood. This time he insisted they use the back of his hand after trying his arm once and that worked.

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 1, 2009


Serious snow, which is rare here. Lots of people retire to this area because we live on the line where it snows once a year. John was smart to go home after visiting Aunt Florence instead of to 5 pm church; it was distinctly slippery by the time I drove home after church. It is slushy this evening but the temperature is predicted to go down to 26. Luckily we don't have anything important on the calendar tomorrow.

Saturday, February 28, 2009


This trip has been somewhat restful, as I'm less involved with this professional society than with the other two (and also because I drove rather than flying). John took my suggestion and took Aunt Florence out to dinner and said that went smoothly. I don't yet worry about John managing while I am away, but I do worry a little about his spending money. He only spends money on audiobooks and wine, but he has very high standards in wine. I've tried a little to get some control, but he hasn't gone along. I suppose I should push the issue more and say what can we set up now so that it isn't a problem later.

Tuesday, February 24, 2009

feeling a little better

But it is all so complicated. The non-rolling desk chair I got Florence didn't come with the kind of arms I had ordered, so they sent a different, bigger one. Turns out she likes the first one better. Her scooter finally came and seems to be satisfactory (except it is hard for her to plug in) but I had to leave my class to help her because John had an appointment he had to go to. I'm not sure how that became the plan, since his appointment wasn't that important, but I thought having one of us there when the scooter came was more important than he did. I need to remember that even if it is true that if I'm not there it won't get done right, sometimes it is ok if it doesn't get done right. I'm still feeling very pressed; I have several high priority tasks to get done tomorrow before I go out of town very early Thursday morning.

Monday, February 23, 2009

I give up

I had the stomach flu in the early hours of Sunday morning. I was through the acute phase so I traveled home Sunday afternoon but it was hard and I've felt very weak today. And sore--I strained a muscle under my breastbone during the acute stage. Over the weekend I cooked healthy food for my daughter, who had a cough, and encouraged her to catch up on sleep, but she reports that today she was sicker and didn't go to her classes. I'm going away again Thursday for a professional conference in Tallahasse, and my two commitments there are Thursday and Saturday afternoons so I can't shorten the trip even though I am driving. I did try to make the first step towards setting up for our son to revisit a college, but they are on spring break the same two weeks he is. I haven't been able to deal with calling about missing forms for our taxes much less with taking the next step towards house renovations. And John is worried about our sex life.

Saturday, February 21, 2009

weekend away

I'm in Massachusetts for the weekend with our daughter, who was very glad to see me. We talked some about death--some of her classmates went to the wake for the girl from her school who died, and it was open casket. That death was such a tragedy it is not surprising that students said the body didn't seem real.

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.

Tuesday, February 17, 2009

I hope it works out

Aunt Florence is back in her apartment--John and a student moved her. I dealt with the chair and scooter issues, but I left John to work on arranging an aide and it didn't get done. I'm also worried that he didn't remind her of the things the physical therapist told her not to do. She isn't willing to accept that she can't keep living exactly the way she was living. And he isn't willing to push her to recognize that. I just worry she will try to do too much and fall again.

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


John picked up the desk chair without wheels I ordered for Florence, though he didn't notice it was made up with the wrong kind of arms. He has arranged people to help him move her tomorrow. He was going to arrange for an aide, but the social worker told him the home health service would cover it and he didn't remember/understand that the physical therapist had said Florence would need more than that.

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

making progress

I was worried about whether John and his aunt and her helper could get her apartment ready for her to move back this upcoming week, but the physical therapist was happy with their progress. There are enough things still to do that day for her move has been moved from Monday to Tuesday. The physical therapist says she can borrow a wheelchair but I've ordered a transport chair. John has a lot on his list to do tomorrow and I can't help much. I will rearrange my schedule so I can help him take her to the doctor Wednesday.

Saturday, February 14, 2009

life is uncertain

A member of my church was killed Friday night; her husband has been arrested and accused of murder. Her 7 year old son is with his much older brother. We live in a college town in a rural area--the last murder in this town was in 2004. I didn't know her well, but it makes me feel there is so much pain in the world.

Friday, February 13, 2009

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?

Tuesday, February 10, 2009

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).

Monday, February 9, 2009

too many different directions

We initially thought Florence would go back to her apartment this week, but the physical therapist said it would be better for her to go home on a Monday so it is tentatively scheduled for a week from today. But only if she can get her apartment cleared out enough to be safe. John arranged for someone who has worked for her before to help her, but today they didn't even get to the apartment (in the next building from the nursing home). And that person can only come for a few hours three days this week. I've tried to find someone to help John move some furniture for Florence, but he hasn't followed up on that. I don't know that he has the patience to work with her as she figures out how to rearrange her stuff. The whole project is the kind of thing where John is weak now--visualizing how a series of tasks fit together in order to get them done on schedule.

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 7, 2009

done right?

John has risen to the occasion of his aunt being in a nursing home recovering from a fractured pelvis. He is organizing himself instead of just drifting. He isn't as patient with her as he expects me to be with him, but he is there every day doing things for her. And it looks like she may be able to return to her apartment sometime next week.

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 5, 2009


John has been complaining about how slow his laptop was, and indeed it was five or six years old. So when it refused to boot I suggested we go ahead and buy him a new one. I wondered if a desktop with a good keyboard would work better for him, but he wanted a laptop. It came Tuesday and he started to use it last night. I've heard a lot of complaining and frustration since then as he learns to use it. I tend to feel blamed when he takes that frustrated tone. It feels like a phrase my mother was fond of: "No good deed ever goes unpunished."

Wednesday, February 4, 2009

finding meaning

When I'm low I feel discouraged that I'm not getting anywhere in getting to acceptance of my situation. I don't want to just endure, I want to find meaning in it. I find when I am stuck talking to someone different can sometimes help me think in new directions, so I went to talk to the minister of my church today. Something clicked me into trying to make a list of the different ways I could deal with how my life is changing. One of my philosophies of life is that there are always more than two alternatives.

  • 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 1, 2009


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.

Saturday, January 31, 2009

how not to do a simple expedition

I had nothing on my calendar today and so decided yesterday that I wanted to go to Atlanta, about 2 hours drive. My main goal was a large store specializing in ethnic foods which is confusingly named Dekalb Farmers Market. I like to go every couple of months during the winter to buy a box of 56 small grapefruit; I squeeze one for juice for my breakfast every morning. We also buy some vegetables and staples there we can't find around here.

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...

Thursday, January 29, 2009

"diabetes of the brain"

I went to a very discouraging meeting at work today--two hours of almost total negativity towards the plan that would replace my program. If that plan doesn't succeed I strongly suspect the alternatives will be worse.

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.

Monday, January 26, 2009

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.

Sunday, January 25, 2009


I said to John a few weeks ago that I didn't feel like we were partners any more, I felt I was taking care of him, and that was an issue for me in being interested in a sexual relationship. It was a day when I was very depressed and he hadn't noticed--that was actually the bigger issue at that moment. Since then we have moved back towards more partnership, both because he has been making more effort and because we have had to work together to deal with his aunt's medical problems. But sexuality is complicated these days on all sorts of levels. His participation is changed by stiffness as well as by the effects of Parkinsonism that Cialis no longer fully helps. And I'm just in the last few months seeing more change in me as a result of menopause (I'm hopeful I'm finally past the on-again off-again stage). He asked if we should give up and I said we didn't have to give up completely but let's see it as a diminishing part of our life rather than fighting the changes.

Saturday, January 24, 2009

what happened to this week?

Yesterday evening and all day today John and I were at an Enneagram retreat. Neither of us had worked with that system before--I had experience with Myers Briggs, he has never done anything like this. I enjoyed it; I like opportunities to listen to what is inside me, particularly if they are experiential more than didactic. And knowing that I am a type 1 does help me understand my patterns. John says he enjoyed most of it, though he isn't sure what type he is (he thinks maybe 4, I was leaning more towards 7). He was engaged. It was a nice small group--12 participants, many of whom we knew from UCC church.

John got angry and defensive Thursday when I went to find something in his aunt's apartment he hadn't been able to find. But at least some of the time he is able to divide things so that I do the complicated parts and he does the more day-to-day stuff. He is rising to the challenge and getting more done than he was a few weeks ago, though I did spend an hour Friday driving to pick up another copy of an xray because he wouldn't have thought it worth doing.

We have an appointment to meet with her doctor Monday afternoon. My greatest wish is for some kind of timetable--if things go well it might take her this long to get back to her apartment. But I don't think I will get it; no one knows how a 97 year old in exceptional health will respond. There are so many complicated issues. A medical supply company called about an order from the nursing home for a manual wheelchair for her and I said wait a second, Medicare won't pay for the power chair she will need if she gets a manual chair now. Pure luck that I know that.

Wednesday, January 21, 2009

neurologist visit

John has an appointment with the neurologist today. The neurologist is gradually getting to know John better and ask smarter questions. He asked John about constipation and sleep and in detail about exercise and he asked me if I thought going back to 5 mg. Aricept had made a difference. I said no--I saw a benefit with the 5 mg. but not a significant difference between 5 and 10, though that may be because John is less depressed recently. John felt the 10 mg. badly affected his balance and it is better again now that he is back to taking 5 mg.

John is concerned that his walking is getting more awkward. I guess that is the one place where there is clear progression in the last three or four months. I asked the doctor if it was time to get a handicapped parking permit and the doctor said yes and signed the form. That feels big to me--we are in a new category--but John seemed to just see it as a convenience.

The next question in my mind is when to start Namenda, but thought I would wait and ask it of the movement disorders specialist this summer unless John starts to have hallucinations, which would be a reason to start sooner.

Tuesday, January 20, 2009

back to work

I had yesterday off but today I had a busy day, as I'm co-teaching a course that meets Tuesdays from 2 to 4:45. John went to physical therapy and had lunch with a friend before going to visit his aunt. It was after 5:30 pm when he got back--she had asked him to clean her CPAP machine, and her way of doing it involved taking apart every little part. I suppose we should be hiring someone to help her with such things (and mail and laundry and etc.) but it is hard to think clearly about when we have no idea how long she will be in the nursing home, if all goes well. I don't think the doctor has any idea how long healing might take, given her advanced age but exceptional health and determination. But with no idea whether she will be in the nursing home for more than a month or two it is hard to know how much to set up. She was originally thinking she would be there a few days; I'm not sure she has accepted that it will be more than a few weeks.

I was moved by the inauguration, which I listened to on the radio (I would rather imagine it in my head). But there was one point where the speech fell into something I preach against professionally. Obama said: "We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost." Technology isn't going to provide a magic solution to avoid hard decisions about health care. And a 97 year old woman getting a drug that costs something like $700 a month to encourage bone growth is just the kind of case that makes it so hard, even though it could save money if it gets her out of a nursing home back to her apartment.

Monday, January 19, 2009

Phillips Brooks asks us not to pray for easy lives but to pray that we might be stronger women and men:
Pray not for tasks equal to your powers.
Pray for powers equal to your tasks.
Then the doing of your work will be no miracle
But you will be a miracle.
And every day you will wonder at yourself,
At the richness of life which has come to you by the grace of God.
(Herald of Gospel Liberty, 1920)

When I heard this quote Sunday I had the impression it was from Martin Luther King, Jr. It turns out instead to be from the author of "Oh Little Town of Bethlehem," a 19th century Massachusetts clergyman named Phillips Brooks. I still find it inspiring to me both in my own struggle and for what we face as a nation and a world.

Saturday, January 17, 2009

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

Friday, January 16, 2009


John is next of kin to his 98 year old aunt Florence, who fifteen years ago moved to a retirement community near us. She's actually cognitively pretty sharp but tends to be obsessive and critical so he has refused to tell her even that he has been diagnosed with Parkinson's disease. I did get him to have her list me as backup on her health care power of attorney. Today she called John to say she needed a ride home from the hospital--they were releasing her after determining that she had fractured her pelvis.

I had an important work meeting and John said he didn't need me (and I realized I needed to let go quickly of "if I don't do it myself it won't get done right"). He took her back to her apartment but the retirement community administrator thankfully decided Florence needed to be in the "health care center" (nursing home) and they took her to a room there. John was pretty shaken by the whole thing--his parents both died when he was in high school and college so she has been his closest family member for a long time.

John came home for supper and then we both went back to see her. I wrote down the long list of Florence's food requirements and the precise times when she wants her medicines, as well as a long list of things to bring from her apartment tomorrow. She was worried that she only had one slipper because she saw it as very important that she not put her feet on the floor. Actually, it is going to be a while before she gets out of bed. John was very glad I was there; I think he was better able to manage the crisis stage this afternoon than the details that she was thinking about this evening. Unfortunately the doctor she knows best is on vacation for the next week. In this small town the doctor covering for him is John's doctor, so at least we know him, but he doesn't know Florence well to mediate between her precise ideas of what she needs for her health and what is realistic in a nursing home.

Thursday, January 15, 2009

good news

We heard today that John was approved for Social Security disability. He applied, was turned down, we filed an appeal ourselves, and now he is approved. That is within six months of when he applied. It is a little more than 6 months from his date of disability (last May) but that is because we waited several months before applying. Someone told us to wait until his disability was approved from his state goverment job, which turned out to be bad advice (particularly because he was 62 years old and thus eligible for early retirement).

The people we have dealt with at Social Security have been wonderful. Today, the person who called explained to us that because we currently have two children drawing benefits, we are getting more from retirement than we would get from disability. When our son is finished high school in May then the total family disability benefit will be higher than the retirement benefit. So they will send us papers for John to sign to stay on retirement until June and then change over to the disability that has already been approved. That then gives him about $300 a month extra for the rest of his life (he is currently getting just over $1,000 a month so that is a significant increase).

Wednesday, January 14, 2009

John's busy day

John is proud of how much he accomplished today. He got forms and wrote out the kids' quarterly taxes (something I didn't think worth doing), he made an appointment with a new Parkinson's specialist (a partner of the one who moved away), and he had a student come to do yard work for an hour. Now he is working on buying tickets to go visit our daughter in April and has called me to the other room several times to help.

He is making an effort to do more, and I'm glad of that. He's also focusing more on what I wish for, that he would take more responsibility for his own quality of life (as long as he can). I need to be clearer in my own mind that I don't so much want him to help me with what used to be tasks we shared as to do things for himself. I think he would be happier and keep a better quality of life longer if he exercised more, did more things with friends, and found more support (eg. by talking to a minister-friend).

What about my day today? I had a good run this morning--I've been careful about stretching and the knee pain I had Monday was almost gone. I checked some bills from the trip over Christmas and sent a fax to my mother. I talked with a stockbroker and made an investment decision. I prepared and taught my course. I had coffee with a friend who is struggling with post-cancer issues. I found out how to appeal for insurance to pay for out-of-network therapy for our daughter and sent an email when I didn't get the person I needed to talk to on the phone. I answered emails, mostly from students. I worked on travel plans for two trips for myself and one for our daughter, though I didn't get tickets bought. I wouldn't call that a particularly productive day, though that is partly because I started more things than I finished and I find it stressful to have so many balls in the air.

Tuesday, January 13, 2009

my mother

On the trip, I noticed that my mother has started to look to us to tell her what to do, as well as asking the same question every few minutes. Her mother died of Alzheimers so it is not a surprise. What I've been realizing the last few days is how upsetting it is to have her no longer be the strong one, even though I didn't have a good relationship with her. I haven't turned to her for support and help in dealing with my situation with John, both because she tended to be so critical and because she didn't have much relevant experience--both her husbands died suddenly (one in a car accident, the other of a massive stroke). But there is still some child reaction in me that finds it scary that she is no longer bigger than me. In more adult terms, maybe I felt that at least she was there as a last resort. Not any more.

Sunday, January 11, 2009

evening out

John looked up options and we ended up going out for dinner last night to a jazz club. We had a pleasant dinner, and I found things to talk about that actually concerned us. (His conversation topic of choice is to tell stories he heard on NPR.) At least until we were driving home, when I suggested that his concerns about our son might be a reflection of his own teen-aged experience. He didn't like that, but then he's never been willing to consider that there might be any unconscious influences operating in him.

Today I was in tears at church, feeling very depressed. I think one thing that has thrown me is that my mother's not-yet-diagnosed Alzheimer's has reached the point where she leans on me and my sisters. This has advantages--she can no longer remember things long enough to be critical. But it is a lonely feeling. I told someone who said I am the matriarch now (I'm the oldest). That's a scary thought.

John didn't notice I was low and wanted to spent time together. I had a bike ride planned with a friend and knew that would help my depression most. I did tell him that I feel like I have to take care of him, it isn't a partnership any more, and that he isn't supportive of me. He first tried to deny that I have to take care of him and to blame me for not telling him my feelings. I did come up with some examples he would accept. When he accepted that there is a problem with our relationship he said he wanted to work on it. I have trouble making much commitment to that idea because I don't have much hope.

I'm standing up to him more, trying to call him on how he isn't putting in the effort to make the best of his life as it is now. That may be unfair--he may not be capable of it. But he wants to be treated as a full participant and I'm not ready yet to fake that.

Friday, January 9, 2009

glad it is Friday

John's cough is gone today. I'm still not feeling well. I got home early this afternoon and tried to catch up on various things that need to be done. I got very frustrated trying to fill out college financial aid forms, and I'm afraid I took out some of that frustration on John when I asked him to call his retirement office (forgetting they close early on Friday) and then he kept telling me that the information I needed didn't make sense.

I'm pretty financially savvy, but I had no idea that John's retirement benefits have a value, as an asset, equal to the total that he contributed minus what has been paid out to him so far. On the other hand, an annuity with no payout after the person dies does not count as an asset. Thank heaven for kind people, in this case a financial aid person at the college that is probably our son's first choice. The good news is that I got the Profile form submitted.

Thursday, January 8, 2009


We were supposed to go to the first meeting of an Alzheimer's Association early stages support group this morning. But John woke up during the night coughing and didn't get much sleep. He called the doctor and took the first appointment he was offered, at the same time as the support group. The doctor said it was just a cold and gave John more codeine cough medicine. I had told John not to take it (we had some on hand) because it was likely to cause hallucinations but he took it anyway this morning and said he didn't have any problem.

This kind of thing is hard for me because if I had been the one who was sick I would have taken much more seriously my commitment to the support group. John was positive about the group when we signed up in December, so hopefully we will get to the next meeting in two weeks and he will like it. I would really like to have a place to share the confusion of this stage when John is ok and not ok.

Wednesday, January 7, 2009

Trip report

When my mother wanted to arrange a time when we could all go to Venice to scatter my father's ashes, I said Christmas time would work better for us. I forget how short Christmas vacation is for my kids--it was tight.

We did get a weekend at home after they got home, and then flew nonstop from Atlanta to Rome Dec. 23rd. It was really nice not to change--we got to Rome in time to go to the Vatican Museum the afternoon of the 24th and it wasn't crowded. I felt insecure at first in Rome--it is a scarier city than Berlin. But we had a nice apartment and cooked our own dinners, which reduced the stress. What I loved about Rome is that it was full of pilgrims--I like seeing art in churches where it still has the meaning that was originally intended. John had been to Venice before but not to Rome so he particularly wanted to see Rome.

John not badly thrown off by jet lag. The one time he had real trouble was the day we were leaving Rome. We had gone in separate directions because he wanted to see the Pantheon and our daughter wasn't up for that much walking. He got back to the apartment an hour later than we had planned because of problems that required him to spend a long time in the nearest bathroom he could find.

We flew to Venice on a very cheap Ryan Air flight and there we stayed in a very small hotel with my sisters and their families and my mother. My mother was subdued, but a lot of wine was consumed, which makes me uncomfortable. All 14 of us stayed together only for a few excursions so there weren't any problems with John keeping up. We tended to gather in the hotel breakfast room in the late afternoon and go out to dinner together.

My mother talked some about getting evaluated for Alzheimers, but no one talked with me about John. My family's idea of privacy tends to extend to not talking about what is going on. I focused on our kids--our daughter and I spent a lot of time walking through the city doing a little shopping and stopping to look in every church we came to. John mostly did what he wanted to do, usually with at least one of us along. I was frustrated one time when I went off to do the laundry and when I got back John had gone off to find the internet cafe and hadn't left me a note so I didn't know when he would be back.

I particularly enjoyed a side trip to Padua, where we visited the Scrovegni chapel, with frescoes by Giotto that have recently been restored, and the pigrimage church of St. Anthony. At that and several other churches that have relics where people pray for miracles, I prayed for spiritual healing for John.

We returned to Rome by train to see the scenery and then flew home the next morning. I was pretty tired of organizing by that point. John had problems when he got home (previous post). I'm not sure whether he interprets those as travel becoming a problem for him. With renovating our other house and moving we don't have any big travel plans for next summer.

Blogger is refusing to upload my pictures; I will try again later.

Tuesday, January 6, 2009

Quick update

I want to write about the trip, but I've run out of time again today. But let me write about being home because that is what is on my mind right now.

John has trouble with constipation when traveling. Miralax helps a lot (though he has trouble finding the right balance) but as has happened before things weren't going well when we got home. He felt he was impacted and might have to go to the emergency room, and he couldn't urinate either (that problem came and went). After the last trip I was reading about the issue and found that some people who went to the emergency room were sent home with a bottle of magnesium citrate to drink, so I suggested John try that. It worked in June, and so he was hopeful that it would help him again.

In the morning he sent me out to buy a second bottle, which was probably more than he needed. He was going to take our son to the dentist and back to school, but instead he had to stay home to be close to a bathroom all day. He was still glad to have solved the problem at home.

It meant that my day yesterday was spent driving our daughter to the airport (an hour each way) then driving our son to the dentist and then back to his school (an hour and a half each way). I was tired and what I really wanted was time to unpack and do laundry and it was a strain. Now I miss our kids and today I had a busy day back at work.

I had a sinus infection and cough before the trip but I got a second round of antibiotics before we left and it got better while we were away. But it got worse on the way home--either I caught a new cold from my youngest niece or the dry air of the airplane did in my sinuses. I'm so tired of coughing.

Friday, January 2, 2009

in haste

I've got 4 minutes left in an internet cafe in Venice--we haven't found anyplace here with wireless. The trip is going well--a lot to organize and the weather has gotten colder and colder but we have seen a lot we have enjoyed, both in Rome and in Venice. John is enjoying himself and doing things with the kids and that is what is important but sometimes I feel like I am doing all the work. I've got pictures but won't upload them until I've got better internet access.