6. The Diagnosis and Following Ten Days


Getting the Diagnosis

Today Kate and I met with the doctor to get the results of her PET scan. She had gone in for the scan two weeks earlier following a routine appointment with Dr. Reasoner. I went with her for that appointment to give my own impression of Kate’s lapses of memory and to hear what the doctor had to say.

(On Wednesday of this week, Jan. 19, she also had an initial visit with the psychologist. Kate is scheduled to have her evaluation on Wed., Feb 16, at 12:30. She has been told this will take as long as 5-6 hours.)

Kate and I have not talked much about the PET scan and the potential results. We both knew what was possible, and I think neither of us wanted to drag ourselves down worrying that we might get bad news. For the past few days I have had some trouble sleeping and have found myself thinking about how she and I would react if the test came back positive. I am sure that every cancer patient waiting for biopsy results would understand our feelings.

As we went to the appointment, I kept telling myself that we might get good news that the test was negative. That was not the case. Dr. Reasoner presented the results matter of factly but not coldly. She said the test did show signs of early-stage Alzheimer’s. She went on to explain what that meant (the tangles in a particular part of the brain) and how it can be addressed (initially with Aricept and after a few weeks another drug that has, in the past, been used at later stages of the disease).

Dr. Reasoner told her the average life expectancy for someone who is diagnosed early (the starting part was not and, I suspect cannot be known) is about 12 years but that she could live much longer. She also gave a few examples of people she had known whose quality of life was good even with the memory loss. She is especially interested in Kate’s behavioral evaluation. That will determine whether the disease has effected other things than just her memory.

Kate handled the news with a good bit of control and later in our meeting, she said that in some ways, she actually felt relieved to know what was causing her memory problems. Her greatest concern is having to depend on family or professional help to take care of her personal care, something that she feels could be required for a long time should she live as long as her parents.

I tried not to give in to the emotion I felt on receiving the news. At one point as we were discussing Kate’s care in the future, I reached for her hand in a gesture of comfort but choked up. Dr. Reasoner gave me Kleenex to wipe my eyes.

After leaving Dr. Reasoner’s office, we went to Casa Bella, a restaurant that holds a special place in our hearts. We were introduced to it in the early 70s by a friend. In the last 10-15 years, however, we have eaten there more frequently. We went there after putting both of our dogs down. She got her veal piccata and amaretto cheesecake that she loves so much.

We talked briefly about having to decide when to tell our children and friends. We both agreed that now is not the time. We know that once other people know they can’t help but treat you differently, and she doesn’t want that. We are just going to take it a day at a time right now and trust that we will know when we should let it be known. This is going to be very hard for both of us as there are people we might look to for support, but there will be a time for that down the road – hopefully a long time down the road.

2011-01-22 (8:45 a.m.)

First Steps in Living with Alzheimer’s

I don’t intend to write something everyday, but I did want to add a couple of things from yesterday and today. First, I didn’t indicate that I had planned to take the full day off as soon as I knew Kate had the appointment. That worked out well. After our lunch at Casa Bella, we came home. We had picked up Kate’s laptop from the shop; so she wanted to catch up on email etc. having been without the computer for the past few days. I took a little time to work on my Sunday school lesson and to start this particular document.

I prepared to make my daily visit to Dad at Mountain Valley around 4:00 p.m. Before leaving I asked Kate if she would like to go to see Harvey at the Bijou tonight. She said she would; so I called and got tickets on the second row. We had a good time. It was good to laugh.

This morning she was scheduled to attend a PEO event at a Methodist Church across town. I dropped her off and drove to a shopping center where I intended to walk for an hour or so. I got a call before getting out of the car. It turns out the meeting is next week. It was not Kate’s fault; the date was printed incorrectly in her PEO book.

We then spent an hour and a half at the shopping center. She shopped and I walked. Then we went out for lunch. We had a good time. She indicated she was feeling better today, and so was I.

2011-01-22 (8:27 p.m.)

Sorting things out

It’s been a good day. That doesn’t mean either of us hasn’t dwelt on the news we received from Dr.  Reasoner. One of the differences I notice is that we are more open with each other about the news. Prior to knowing, neither of us spoke about it except in moments when some instance of Kate’s loss of memory bothered her or me or both of us. It is as though instantly I am attributing all of her issues to the diagnosis.

She has brought up the fact that she is feeling all right, but also expressing that she is feeling a range of emotions starting with anger, sadness, etc. She did not go to church this morning, something that is not unusual since she retired from the church library in May. When I got home, we went to Chalupas for lunch. While there, she mentioned that she might want to check out support groups for Alzheimer’s patients. I suggested she look online and that that would offer her more anonymity.

After we got home I got online to look for options and found several. I did not identify one in particular that would be appropriate for her. I’ve been thinking about the future and wonder when we might notice changes that affect us. What will life be like in 5 years?

We have talked about the importance of her being active including participating in exercise. I am going to check on yoga classes near the house where she has had some interest. I am also thinking that we might start eating lunch together more frequently than in the past. We talked today about her avoiding situations that are especially frustrating. That would involve preparing meals for company. She recalls being especially frustrated last summer when an old friend from West Palm was in town to see Dad.

2011-01-25 (6:07 a.m.)

Our Early Efforts to Cope

I woke up early this morning (around 4:00 a.m.). I don’t know that this relates to Kate’s diagnosis, but it is consistent with the problem I had the week before her appointment with the doctor.

We both got through the day all right. I was busy with things at the office although I did find my mind wandering back to Kate. I checked online to locate support groups for her. I found a number, but did not identify just the right one.

I also looked up life expectancy for someone diagnosed with Alzheimer’s. I didn’t like the results. Results showed somewhere between 4.5 and 8.5 years. That is a contrast with the figure of 12 years that we got from Dr.  Reasoner.

Kate specifically told me she got along all right yesterday. She took a positive step to investigate a yoga class that she has been considering. She is also going with me to the Y breakfast this morning.

2011-01-25 (12:10 p.m.)

How I’m Feeling and Making Plans

I neglected to say earlier this morning that I have found myself with a stronger feeling that I need to be with Kate more. I have been thinking of the limited time to enjoy ourselves “the way they are” rather than “the way they will be” in the future. She went to the Y breakfast this morning, but I have tried to reach her about having lunch together. She hasn’t been at home and hasn’t answered her phone or text messages. She could possibly be at church where the connection is not so good although I thought she was almost fully disconnected from her responsibilities there.

I also keep thinking of things that she would like to do while she is able to fully appreciate them: seeing the grandchildren, traveling, visiting with friends, etc.

I am developing a list of things we need to do: putting both our names on all bank accounts, checking our wills to see that they are in order, getting rid of lots of things in the house that we don’t need (Kate has expressed an interest in doing that; I haven’t.) and deciding whether Kate would be better off staying in the house as long as absolutely possible or moving to a place like a continuing care community that could handle our changing needs.

2011-01-31 (6:11 a.m.)

Spending time together

This will be a brief entry as I just finished breakfast and am getting ready to leave for the Y.  I did want to mention a couple of things.  We spent more time together last week and were more active rather than just being at home together.  We have had lunch together most days since 1/21.  We intend to keep that up as our schedules allow.  We also went to two theater productions, Harvey, and a new play at a small local theater (50-seats).

Last night we had an emotional conversation in which we shared with each other the feelings we have had since the diagnosis on 1/21.  We both had suspected this for quite some time.  We had been seeing signs for at least 2 years.  Kate, like my mother, has expressed frustration over not remembering things.  At first, I denied the possibility saying “We all forget things.” For the past 6-12 months, however, I have become increasingly concerned that it may be Alzheimer’s.  Despite my suspicions, I found myself getting irritated when she would forget things.  I kept saying to myself that she can’t help it, but I would still be irritated.  Since the diagnosis, I have not had the first sign of irritation.

The official news has affected Kate as well.  She opened last night’s conversation when we sat down in the family room to watch a movie on Netflix.  As we sat down, she said, “I am so scared.”  That began an extended conversation that was good for both of us.  (We never got to the movie.)  She is not only scared.  She is also angry.  She is angry that this is happening to her now.  She feels this would have been easier to accept if she were 80 and not 70.  She is beginning to feel she is already being treated as a non-person in social interactions and that this will just be exacerbated as she declines.

2011-01-31 (9:16 am)

More plans

I am now at the office and want to quickly finish my notes on last night.  We talked about a wide range of things and how much our thinking about the future is different now.

  1. Keeping things constant rather than making significant changes in the house than we might have done before. Neither of us feels major changes are in the offing since we might not remain in the house as long as we had thought.
  2. Planning for a move to a retirement home which is where we would go if we had to move now. We both agree we want to stay at home as long as we are able.  I also told her that I would not remain in the home without her.  It is a wonderful place to share with her, and it is filled with many great memories.  Without her I would rather be in a continuing care community.  I would not buy another house.
  3. Thinking about time with grandchildren and trying to make the most of the time.
  4. Kate is wondering how far into the disease she is now and plans to ask Dr. Reasoner to give some indication based on the PET scan results.
  5. We talked about how not being able to tell anyone about this drives us even closer together than we have been before. We both recognize just how interdependent we are.
  6. We spoke about a balance of practicalities (planning things like finances, arrangements for help, etc.) and emotional support that I can provide.
  7. She is going to check with the social worker at her doctor’s office about support groups when she is ready to be more public. She really wants to talk with other people in the same situation as she.  I noted that I had checked on line but not found just the right thing yet.
  8. We reminisced about the places we had enjoyed together – and even specific moments that were special (e.g., the native dancing at the Christmas market in Bratislava)
  9. We talked about places she might like to visit. Santa Fe is definitely on the list.  We had previously said we would look at Australia and New Zealand in 2012.
  10. I also told her I avoided saying much about things because I didn’ t want to up aggravate the situation. She said she wanted me to be as free to say things as she is.
  11. She asked me if I had thought about her cousin’s husband who died with Alzheimer’s since getting her diagnosis. I said that I had.  One of the things she doesn’t want, but knows will happen, is that people will pity both of us.  This is not a problem for me at all, but this is quite in keeping with her own personality.