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.


Thursday, October 30, 2008


An English blogging doctor has a fascinating post in which he says that some patients who are unhappy at the stage where they see their dementia progressing become happier when the medication that was helping them is stopped and they progress further into a level of dementia where they are no longer aware of their losses. A painful thought.

John is not a very reflective person and is determined to make the best of his situation, so he doesn't seem too depressed by his losses. I wonder if he will be at a later point.

Wednesday, October 29, 2008

thinking about other things

Despite my frustration about how much John can take responsibility for himself, I do have days when I don't have to spend time or energy on his stuff. Of course, part of the reason is that I am distracted by a difficult situation at work. The program I built and run may be crippled by new university rules as the result of a budget crunch. We have the money (even after the cut) but the rules may prevent us from paying the faculty who can provide the courses students need. Plus I gave a test in my class and spent two hours doing an oral history interview.

But I also ran 3 miles and cooked a nice Thai green curry for dinner and I've spent this evening catching up on email, much of it not work related.

Tuesday, October 28, 2008


John got some things done today, but only because I went over with him what needed to be done and because he felt pressured by me. I've been feeling discouraged that my idea that he can take responsibility for some things himself (with a little reminding by me) just isn't going to work.

I finally came to more understanding of the situation while talking to my spiritual director this afternoon. This is a stage where John can still do things but needs lots of coaxing and help from me. It is a particularly hard stage for me, because it would be easier just to do many of these things myself. Also, for me helping someone else takes a lot of emotional energy. For example, I have to say aware of whether he does a task I have reminded him of and decide when would be a good time to remind him again or how to try to get him started. This isn't a stage that fits my strengths but it is where we are at--we are not yet to the stage where it is appropriate for me to just take over (which will actually fit my strengths better).

Monday, October 27, 2008


John and I met with the therapist and John said he feels I don't communicate with him. I said it hurts to ask him for input and not get it, so I tend to give up asking. We added a category to the list I started--things that are his responsibility (all but one are things that are about him only), things that are my responsibility (what I've put on the list is family responsibilities), and the new category is things that we do in partnership or share responsibility for. Cooking is on that list, not that we do it together but we take turns (week by week).

I asked John if he would share responsibility for Christmas and he said something that sounded to me like "if you tell me what to do." I said I would be glad to discuss issues, but I didn't count it as sharing responsibility if he waits for me to bring the subject up, decide what needed to be done, and tell him what to do. He said he would try.

I'm not sure any of this is going to work. But I think it is worth a try. In Families, Illness, and Disabillity, John S. Rolland writes that

Both partners need to realize that sustaining intimacy depends largely on establishing viable caregiving boundardies. Even the strongest relationships are strained by the ambiguities and discrepancies in shifts between two forms of relating: patient-caregiver and equal partners.
And that: "one of the key tasks of the chronic phase" is "maximizing autonomy for all family members given the constrains of the disorder." (pp. 245, 247)

Sunday, October 26, 2008

letting go of control

Today instead of a sermon, a member of my church gave a message on stewardship. Only he is a real estate developer who in the current economic situation may be facing bankrupcy, so it wasn't about giving money to the church. Instead, it was about his trying to learn from his experiences this year to stop trying to be God, stop trying to be in control of what happens. He said he hasn't had a transforming moment, a moment of surrender and then everything is different. Instead, it is more like Jacob wrestling with the angel all night. But he knows that being in community helps. And while he didn't talk about this I know he has re-invented himself several times before.

Today I got done two tasks that I had put off for months--revising a professional article and buying air tickets for a Christmas trip. In both cases I was afraid that there would be problems because I had put the task off so long, but they went smoothly. So I got away with being gentle with myself, not forcing myself to deal with those things earlier. I felt "I do what I can do."

I really don't know how much is reasonable to expect myself to be able to do. John can still take care of himself, though I have had to take over a lot of family organizing. My time isn't terribly full (particularly if I count the work time I could use for writing projects). But knowing the situation we are in is such a drain on my emotional energy. I think I have let go somewhat of trying to plan too much for the future, but I tend still to be braced for something bad to happen. How can I let go more of wanting to be able to predict my days and be more flexible to take advantage of what opportunities I have?

Saturday, October 25, 2008

confused day

Yesterday John was having a bad day. He was still asleep when I left early for work, so all I know is that he missed an 11 am appointment. His 96 year old aunt already had a document giving him power of attorney in both legal and medical matters but I wanted that modified to list me as a successor if he can't do it. They had an appointment with the lawyer to sign the new document.

I got home at 2:30 to go up to our son's school for a 4:30 appointment. John wasn't quite ready but the main reason we were late was unexpected traffic, due to accidents in the heavy rain. Driving up John asked confused questions about several topics. Finally I asked him if he knew of a reason why he was having a bad day. He said he didn't know the reason but he certainly was. We did enjoy the play our son was in: "The Complete Works of William Shakespeare, Abridged."

While we were driving, John and I did have a conversation about death, which feels valuable to me as a way of being on this journey together. I had sent him a link about Voluntary Stopping of Eating and Drinking but he hadn't read it. I am interested in the philosophical question--if one believes in leaving death in God's hands then what interventions can one refuse? A feeding tube? Antibiotics? IV fluids? Food and fluids? It seems to me very hard to draw a line. John commented in several cases that he thought that would be a painful way to die. I said research suggests it is not painful for the frail elderly, but I don't think he was convinced. I have the text of a couple of articles on that--email me (pam55sc at gmail) if you want them.

Thursday, October 23, 2008


I've been low this week. I think the conference made the future of caregiving realer to me, plus I feel that expecting John to do some things himself without me urging him isn't going very well. Yesterday a friend told me how when she was 17 and caregiver for her mother with multiple sclerosis, she said "I can't do it any more" and her mother took an overdose of sleeping pills. I was able to talk about that with my peer group of spiritual directors today and I said: "When the synchronicity is that strong what can you do besides remember to breathe?" If I can synthesize the answer I heard, it was that we can trust God to guard some thread of meaning in our lives.

Tuesday, October 21, 2008

kids growing up

Both our kids go to schools that have a tradition that through the year each senior gives a chapel talk. Our son gave his today and we went up to North Carolina to hear him. His talk was about what he has learned from travel with us.

John commented when we got to the school how fast these three plus years have gone. What strikes me is how our son has grown up. He has learning differences that he inherited from John but he seems to be finding his way.

Monday, October 20, 2008

unstable middle ground

I need to find a middle ground between taking everything over and focusing on my own life (letting John take responsibility for himself). The trouble is, the middle ground doesn't feel stable. As soon as a problem comes up I feel I have to drop everything and take over. Or it feels like the only way to let him take responsibility for something is to not care whether the job gets done or not.

I have an image that the middle ground is a ridge with a slippery slope on either side. So I need a way to chisel out steps, flat places where I can have a more stable middle ground. My first thought of how to do that is to make a list of what is my responsibilities and what is John's. We talked about it some over dinner and he agreed with the principle that whether he does exercise and activities that will help preserve his quality of life is his responsibility. So I started a list as a shared Google document.

Sunday, October 19, 2008

The New Normal

One of the concepts that struck me at the Well Spouse Association meeting is the idea of a new normal. I didn’t even go to the workshop with that title, but the phrase has stayed with me. I think I’m imagining some stability, and in the long run I’m not going to get that. But I still see some peace in thinking “this is now what’s normal for us.” This isn’t (or isn’t only) a strange and scary place, it is where we live. That’s very similar to the famous meditation for people with children with disabilities called Welcome to Holland. How to be here, in this unexpected place? There were people at the conference who had been well spouses for 20 or 30 years (mostly with spouses with Multiple Sclerosis). Caregiving is a place people live, not just one they visit in a crisis.

How to settle down to living here? I wonder if it is possible to sit down and discuss with John what he can do and what I will do. I will take care of finances and family plans and remind him of those things. I will go to doctor’s appointments with him. When he asks me to, I will take over his bills and organizing his medications. He is responsible for his things and for the day to day matters of his health, such as exercise, and for finding the things to do that make his life worthwhile.

Saturday, October 18, 2008

Well Spouse Association

First some resources:

A really good article on dementia and violence.

A story about grief on video.

I'm in Chicago for my first convention of the Well Spouse Association. I got in a little late for dinner last night, but people were very friendly. The first workshop I went to this morning was on Tear Soup. They had trouble getting the video set up so we first went around the large group and told our stories and what we were grieving. So much in common. Then we did get to see the Tear Soup video, which is very good. Then I went to a workshop on self-identity in caregivers, where we had to keep being brought back to talk about ourselves. After lunch I went to one on How do we cope? for those with kids. We were a small group but we had kids around the same age and it was really helpful. People headed off for tours of various attractions in the afternoon but I decided that what I needed to do to take care of myself was to have a quiet afternoon. Feeling a little teary about being with people who get it.

Friday, October 17, 2008


I'm at the Well Spouses Association meeting in the suburbs of Chicago. I got in barely in time for dinner, so don't have much sense of the group yet, but the people I sat down with instantly welcomed me and asked me about myself and my spouse. They liked my description that I am coping well but it is damn hard. The program tonight was honoring the founders of the organization at its 20th anniversary, but even that made me feel a bit teary to hear people talking about lives like what I now imagine.

Thursday, October 16, 2008


I told my massage therapist that I had been thinking it was time to settle down and see John's situation as likely to be fairly stable for a while, get myself out of crisis mode. And then having to miss my class yesterday to take John to the doctor felt like crisis mode again. The massage therapist said I will need to be able to rapidly switch back and forth between chronic mode and crisis mode. I said I have a hard time with that kind of transition. He said I will get good at it. Sigh. I don't want to get good at it!

Wednesday, October 15, 2008

good news from the ophthalmologist

The bleeding in John's eye was just a bit of bad luck with the natural changes of age (the gel inside the eye shrinks). The doctor examined his eyes several ways, including with a lens pressed to his eyeball, and saw no problems with the retina. So that was good news--I was expecting John would need laser treatment. I did have to miss my class; the only time the doctor could fit us in was in the middle of the day and we waited for almost two hours.

John was very drained when it was over but he seems to be feeling better now.

Tuesday, October 14, 2008

new issues

John called from the airport where he changed planes on the way home to say that he has what is almost surely bleeding inside his eye. He talked to one ophthalmologist and I spoke to mine and both said come in in the morning. So far as I can tell the problem is related to nothing but age and bad luck.

Reading the book on Families, Illness, and Disability over the weekend I had focused on the idea tha we are out of the crisis/adjustment stage now and I need to change my approach to focus on the long haul. I started to think about what do I want to get done while I still can, and this morning I was seriously thinking about signing up for an Iron Distance triathlon next fall (signups don't open until early December so I don't have to decide yet). And now here we are back to crisis mode--not a big crisis but I've cancelled several appointments tomorrow so that I can take John to the doctor.

Monday, October 13, 2008

Support groups

I didn't learn anything I didn't already know at the Alzheimer's support group tonight. There was a presentation on medication, but it was information I knew already. Actually, I did feel less discouraged when I left, but I had other things I could have used that time for that would have been more useful.

This coming weekend is the Well Spouse Association meeting--I hope that will be more helpful.

Sunday, October 12, 2008

Families and illness

I'm reading Families, Illness, and Disability by John S. Rolland. It is written for professionals, not for families, but I am finding lots of useful ideas. The first part emphasizes previous experience and family patterns, which I was already realizing. John's thinking is very much shaped by the death of his parents, mine by my own experiences of the death of my fathers and my grandmother, as well as having a sister with a cognitive disability.

The interesting immediate example of family patterns is that this weekend my mother was more positive about John, now he is ill, than she has been in the past. She and John went and picked raspberries while Elizabeth and I worked on her laundry.

What I like best in the book is not the theory but the case studies and the questions that Rolland suggests asking families. For example, in the chapter on intergenerational patterns he suggets asking families about previous experience, about:

What would they want to do similary or differently? Are there aspects of the current situation that they feel confident, insecure, or terrified about?

I feel terrified that at some stage John will want my attention constantly. But the book is helping me see that now is the time to make a transition from the crisis (or at least acute adjustment) stage to an early chronic stage where I have a last change to pursue my own goals while I still have the opportunity and can encourage John to have as much autonomy as possible and take responsibility for his own choices.

Thursday, October 9, 2008


John and I flew together to Boston today for our daughter's parents' weekend. While he has apparently done fine traveling on his own, I find it hard not to get impatient traveling with him. I had to stop him from getting on the wrong rental car bus--arrangements he had made. A couple of other times he acknowledged he had gotten confused, as well as just the slowness.

We are staying with my mother, who is impressed by how cheerful he is. She says he seems more engaged. I said I think a lot of that is the benefits of Alzheimer's medication (I think she should try taking it fairly soon).

Wednesday, October 8, 2008

not being ourselves

“The main task for a person with Alzheimer’s is to maintain a sense of self or personhood,” Dr. Williams said. “If you know you’re losing your cognitive abilities and trying to maintain your personhood, and someone talks to you like a baby, it’s upsetting to you.”
Dr. Kristine Williams quoted in an article in the New York Times

I'm wondering what it means to maintain personhood. Does that have to mean maintaining the ego, continuing to be the same person? Or can I somehow still be a person, still enjoy looking at clouds, even if that "who I am" I built is slipping away? My grandmother died of Alzheimer's, the long slow way, and my mother is showing signs, so I see these isses as ones I will face myself as well as with John.

I don't know if Dr. David, is thinking in those terms, but his blog about his experiences as a physician diagnosed with LBD is moving.

Tuesday, October 7, 2008

Still on the difficult topic

I realize that I feel so scared of John's intention to end his life before reaching the later stages of dementia because in some primitive place inside me it feels like I am a child who said "I wish you would die" and the person died. That may come from confused feelings from my own childhood; my father died in an automobile accident a month before my third birthday. Both my fathers died suddenly--my (step)father died of a massive stroke while traveling almost exactly three years ago. I wished I could have said goodbye.

Monday, October 6, 2008

further conversation about difficult issues

John and I had another conversation today with the therapist about John's intention to end his life before the dementia gets bad. Today we were also joined by our pastor, who was for several years director of a suicide hot line.

I wanted John to hear my feelings that there is no way he could end his life without it being physically and emotionally messy and terribly hurtful to me and our kids. The thing that did get through to him was that I would feel rejected by him.

He talked about the death of his parents when he was in high school and college. His father died unexpectedly of a heart attack, his mother died a lingering death after a car accident. Both were horrible experiences for him. I don't think he can believe that a peaceful death is possible. He also does not accept the idea that he could have quality of life when he is no longer himself. I spoke of how I have come to understand facing our own deaths as a period of learning to give up control and trust God, but that didn't mean anything to John.

The pastor believes that my views and John's are two positions on a continuum of possibilities and if we keep talking we can come to a shared position. I asked John if he was open to the possibility of changing his view and to my surprise he said yes. I said I was open to changing my view (I do believe in theory in his right to make his own decision). But it is hard to imagine a shared position because there is likely to be so large a gap (I'm guessing three years or more) between when he goes past the point of being able to end his own life and when death can come naturally by withholding treatment. He doesn't want to live in that condition.

Sunday, October 5, 2008

social isolation

John was happy to be asked to take a role in a special world communion Sunday service at the UCC church, serving communion. Afterwards there was a birthday party for the pastor and John got himself some food and sat without talking to anyone and wanted to leave quickly.

He has several friends he keeps up with, but he has no interested in being involved in groups and committees. The problem tonight may in part have been his difficulty with hearing when there is background noise, though it wasn't a large group. I asked him a month or so ago if he wanted to get trained as a poll watcher and he said he had been thinking he would like to do that, but he didn't follow up on it.

I supposed that responding to people in a group may have the kind of complexity that he doesn't want to admit is hard for him. But his lack of any interest in being in community concerns me. I'm an introvert, but I believe in the importance of having community.

Saturday, October 4, 2008

reducing chaos

We had a roof leak that ruined the ceiling in our son's bedroom. The insurance company is paying for repairs--the problem was a defect in the roof their contractor put on when a tree fell on our roof five years ago. Our son's room is getting a new ceiling. I decided at the same time we should have the ceilings painted in the hall, our bedroom, and our bathroom, where there is some mold growing.

We don't have to clear the rooms--I asked the contractor and he said anything that is in the way of the workers they will box and moved out of the way. But I'm trying to clear off the stuff piled on my dresser and bedside table. I'm about 1/3 done. The work starts Wednesday but they probably won't start on our bedroom until Thursday.

John agrees that we should have the other ceilings painted and he says he intends to clear his piles of stuff out of the way. But he has hardly started. I am very thankful that it isn't our responsibility to get stuff out of the way--I can just let his stuff be his responsibility.

Thursday, October 2, 2008

my health

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

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

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

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

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

Wednesday, October 1, 2008

marriage and chronic illness

A post I read on the Wellspouses forum has me thinking. It was from several months ago but if you are in the group you can find it by searching for the subject "How do you define a healthy WS/IS marriage". I don't want to quote it because I haven't asked permission, but the general argument is that when a spouse is temporarily ill we relate to them by making a fuss over them, but that doesn't work for a long-term illness or disability. The author argues that in the situation of a long-term illness or disability the ill person should as much as possible take responsibility for figuring out how to manage their own care, just as they would if they were single. The key suggestion is to avoid taking responsibility for the other person, but instead let them take the consequences of their own decisions as much as they are still capable of making reasonable decisions. That makes me realize I've fallen big time into trying to rescue John (and then resenting that role). And he isn't to the point where that is necessary yet.