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.


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.