Re-Grouping

Much has happened since Dad’s death and memorial service. Kate and I have both experienced a “letdown” that I consider one of the stages of grief. We haven’t felt sad. In fact, we are pleased with the way Dad left us. He had the birthday that he lived for all year, and when he died, he did so without pain. Despite the good things that we can say about his passing, we have both felt lethargic and just not up to doing things. This has led to our trying to entertain ourselves more than usual. We have been to several movies, several live performances at local theaters, and eaten out at places that are a little more special than we usually do. In addition, I booked a trip to New York. We leave this Tuesday morning and return Friday evening. I would never have considered doing this if Dad were still alive. Now that he is gone, there is no reason that we can’t, and I feel we need it.

I should say that I believe we are both at the end of our grieving. We went to Jesse’s for Thanksgiving. On the way back, Kate said she felt she was over her slump. The visit with Jesse’s family had given her a real boost. In many respects I feel the same way except that I find myself waking up at night and not going back to sleep the way I usually do. In most cases, I find my mind wandering to thoughts about Dad.

I have been especially anxious to comment on Kate and how she is doing with respect to her Alzheimer’s. I am clearly sensing that she is deteriorating further. It makes me wonder if we are nearing a time when I should let the children know. I will wait on a decision until after our visit with Kevin’s family for Christmas.

When the family was here for the Dad’s party and then two weeks later for his memorial service, she did little to help get things done. To some extent, I may have saved her by telling Larry that I didn’t want her to have to do much and welcomed his offers to help. He and other family members came through with food and preparation that helped us tremendously. Of course, Dad’s sister-in-law, as always, was a big help as well. She came a little early before the party and the memorial service just to help.

I am seeing so many signs of Kate’s condition that I can’t begin to summarize them here. Things are happening all day, each day. In general, it manifests itself in two ways. First, is a dysfunctional way of addressing all of the numerous tasks that most of us take for granted. One silly one is that she never sufficiently cleans out the yogurt container after eating her yogurt. I come behind her and rinse it further. Similarly, the spoon she uses is rinsed, but she never completely rinses it. She does things like leaving clothes on the floor or hanging them up very sloppily if she hangs them at all.

The second indicator is one that people would suspect. Her memory is deteriorating. She simply can’t remember routine things that I tell her. She repeatedly asks me what day we are going to New York or whatever else we are planning to do. I have to stay on top of all obligations, not just for me, but so that she can be prepared. Ironically, she recognizes that she has trouble getting ready to go places and has started working harder to be on time when we are going out. She even feels that she is doing well at this and feels that I don’t trust her enough.

Another symptom that is not brand new, but increasing, is a kindness toward people. She thinks many people are smart. She also comments on how good the preachers’ sermons are. This is true across the board for our senior pastor and the associates. On the way to lunch today, she said something about how good the sermon was and then said, “Of course, I can’t remember what he said.”

We don’t talk a lot about her condition. I try not to do anything to draw attention to it. I let her do the talking. She doesn’t say much, but she does tell me about things she has done or forgotten. I just give her a hug and tell her I love her. She depends more heavily on me than in the past, but she also shows a desire for more independence. She takes pleasure in letting me know when she remembers something she expected me to think she would forget.

I was quite concerned about her at Jesse’s for Thanksgiving. She spent a lot of time in the bedroom while I spent time with Jesse and Greg. My own interpretation is that she just can’t carry on a conversation for very long. She is still great at the initial small talk that is part of what we do when we haven’t seen people in a while. After a while, it is too much for her to handle. She has trouble following conversations, movies, plays, etc. The surprise is that when she told me that she thought she was coming out of her slump, I thought she was talking about being in a slump at Jesse’s. When I asked if she meant at Jesse’s, she acted offended and said, “Of course not. I was just fine at Jesse’s. That makes me think she has deteriorated to the point at which she does not recognize how her retiring behavior appears to others. It seems strange. She is simply withdrawing. This is the kind of thing that I would expect most people to notice first before recognizing the memory problem.

The End

Dad died Monday, morning at 8:12 am, officially anyway. I arrived at the hospital just after 8:00 and called Kate and Larry at the house at 8:06 that they needed to come right away. Even as I said those words, I knew he would be gone before they arrived.

When I walked into his room, I could see that his face was white and thought that he was already gone. I walked around to his right side. He was completely silent. I thought at first he had stopped breathing then noticed he was just breathing gently and slowly. When I held his right hand, it was cold. I felt the left, and it was still warm. I told him I was there and that I loved him. He took a few more breaths and then stopped. I called the nurse. Two of them came in to check his heart. Neither could pick up a beat. We looked at the clock and noticed that it was still set on Daylight Savings Time and 5 minutes ahead at that. I looked at my phone and saw that it was 8:14. One of the nurses said, “Should we say 8:14?” I said, “Being a data man, let’s say it was 8:12. I think that would be a more precise guestimate.”

Dad’s brother and his wife left just before 8:00. Larry is just arriving here. Kate and I are drained. I will comment later on the service and reception.

Entering the Final Chapter

Though no one can predict when Dad’s journey will end, today it is clear to everyone that he has turned a corner leading down the pathway to the end. Yesterday Dad was awake and continuing to drink his orange juice, tea, and Coke. He was weaker, and he had a hard time talking. He would say something with a reasonably strong voice, and then have to rest. During the resting time, he might try to mouth words but couldn’t get them out. As the day progressed, he seemed to drift further away. He did drink 2 bottles of Kellogg’s Special K Protein Shake, each with 180 calories but solid food was on the way out.

He was awake when I arrived this morning. He recognized me and wanted to speak but had a hard time getting out any words. I brought up the subject of his party and told him when I dropped by Starbucks this morning and that a friend had heard that the party was a great success. As I reminded him what a good time we had had, he said, “all the grandchildren were there.” A little later he was remembering his days on the milk route. I understood very little of what he said.

It took almost an hour for him to drink the orange juice that comes with his breakfast. Usually he drinks the whole glass quickly. Later he drank some Coke. Otherwise, he has shut down on eating and drinking. Oh, I forgot, he also ate a container of yogurt. That said, Larry and I feel he has made the shift from fighting to live to moving on to the end. The hospice nurse, came by. She quickly came to the same conclusion. I asked her once again how long he might have. She hesitated to predict but thought that it was a matter of days. I asked about the possible transfer to back to Mountain Valley at the end of the two-week period on in-patient hospice. She said that because of the leg problem she had decided that that is not likely. Mountain Valley probably would not be able to take care of it in the same way they can here. She didn’t say, but it was implicit in her comments, that Dad is not likely to live long enough to necessitate a move back to Life Care.

So how am I feeling now? On the whole, I am feeling much better than this time last week. I believe that is a result of two things. First, I have been grieving for a week. I think it is only natural that grief resides after a while. Second, during the week we have had some very special moments. One of those was Monday when he was both alert and talkative. Then on Tuesday he was talkative and happy even though he was partially delusional. Even Wednesday when he was wiped out for having been awake for some 36+ hours, he seemed at peace. It has only been yesterday afternoon and today that he has shifted back to looking like he is leaving us. This morning when I was with him by myself I choked up as I spoke to him. At that time he recognized me. Just a short time then he became unresponsive. A moment ago I spoke to him through his hearing device (so I know he could hear me), and he showed no sign at all that he heard me. That was how he was when one of his friends from his writing class came by this afternoon.

As Larry left, we were both choked up. It made me wonder if I am up to teaching the Sunday school class this Sunday. I had planned to do so. Finally, I called Don Barton this afternoon to ask if he would be my back-up in case something happened that I could not make it on Sunday. I am planning to teach on grief. Last week I was too emotional to do it. This Sunday I believe I can handle it and that it would make the lesson more relevant since I am going through the grief process myself.

I should say a number of people have asked how I am doing. I really do believe I am doing well. I also suspect that some think that I am in denial.

Trying to Stabilize

Yesterday Dad was sleep a lot. That is not surprising given that he had been awake for as much as 36 of the preceding hours. He continued to be weak and was not eating solid food. He drank some orange juice, Coke, and had a small spoonful of apple sauce. He continues to be without pain.

I am beginning to adjust to the new situation. I feel I have been going through the natural process of grieving since last Friday when we decided on hospice. At that time it was difficult for me to control my emotions. On Saturday when I was preparing my Sunday school lesson (on grief of all things), I realized I was not in shape to teach. I called someone to take the class for me. Since then Dad has bounced back a little and then fallen back a little. I am planning to teach the class this Sunday. I feel strong enough to do it now.

Today Dad was awake when I walked into the room. He is still too weak to talk much, but he is comfortable. He is still not on pain medication. Last night, however, I had an experience that confirms what we all know – that it is best to have a patient advocate in the room at all times. His nurse came into change the dressing on his leg. She said she needed to go back and get the morphine. I asked why, and she said it was to prevent the pain. I told her he didn’t have any pain. She said that when she touched his leg earlier she thought he had been in pain. I told her that he hadn’t expressed feeling any pain. I told her I did not want him to receive morphine until he really needs it. I don’t want him to suffer, but I don’t want him to start on morphine that would lead to his being unconscious. I asked her to put that instruction in his chart. I also communicated that to the “charge” nurse and will do the same with the hospice personnel.

From the Mountain Top to the Valley

This past Monday morning at 6:20 am I received a call from Mountain Valley saying that Dad’s leg had swollen during the night, that it had developed blisters, and that the doctor felt he should go to the hospital for treatment. I concurred. When I saw his leg, I understood why they had wanted to do so. It was partially blackened from blood. The leg was swollen more than I had ever seen before. Subsequently I have heard doctors say it was the worst they have ever seen. They took him off Lovenox and put him on heparin. Then his hemoglobin dropped even lower than it had been in August when he was here.

I had already made arrangements for Kate and me to go to Nashville on Thursday to see Aida. Larry came over to relieve me. Friday while we were doing some shopping before returning to Knoxville Larry called to say he had spoken with the doctor. She had given him the news that there was little they were able to do for him except something extreme like amputating the leg and that he was too old and fragile for this. Thus hospice was recommended.

We came on back to Knoxville where Larry and I talked and quickly agreed that hospice was the only sensible thing to do. He left for Atlanta, and I told the on-call doctor that we wanted to move forward with hospice care. Even though that would not officially happen until yesterday afternoon, they quickly shifted their care of Dad to keeping him comfortable and making sure he suffers no pain. Ironically, he has not had pain and is not on any pain medication. It has amazed the doctor.

I spent the entire day with him yesterday. I emailed three of his good friends to tell them they could come by to say their goodbyes if they wished. One of them came by yesterday afternoon. Another may drop by this afternoon.

We have someone coming in at 7:00 pm each night and staying until 7:00 am. She had taken care of Kate’s mother for 5 years. She was the weekend day shift person, but she filled in when someone else had a conflict.

I should make a personal note about how I am feeling. My rational, logical side knows that this is a good thing – not that he is “sick” – but that this means the vascular dementia initiated by his stroke 3 ½ years ago will not lead him to a vegetative state. In addition, he would want to go out with a flare. For the past 12 months he (and I) lived for his 100th. There were times when he wondered if he would make it. He did, and it was everything we could have wanted. It was a great celebration of his life, and now he can go in peace.

Now for the emotional side. I find watching him die is emotionally draining. I find myself moved to tears through the day. I have tried to tell him I love him and that he was a good father. I have done so, but each time I have done it through tears. As I have read him email from friends, I have broken down in tears. When I have talked with the staff here, I end up in tears. Last night Kate and I went out for a late dinner. By that time I was feeling like I had gotten the tears out of my system. Then I came in this morning. He is so weak he can hardly speak. Periodically he is able to get out a word or two, but it takes all the strength he can muster. He is hungry, but it is getting difficult to swallow. I gave him a piece of peach which he wanted. Once in his mouth, however, he couldn’t swallow it; so I asked him to spit it out.

He gets worn out after eating or drinking anything. He asked that I lower his head. For some reason he never likes the head of the bed raised. At the hospital and at Mountain Valley, they always want it raised a little. He always asks me to lower it. After eating or drinking, his breathing gets more strained. I think that is because he aspirates some of everything that he swallows. He has done so since the stroke. Fortunately, it has not been so bad as to lead to pneumonia which is the expectation.

Yesterday when I spoke with the doctor, she said she thought he couldn’t survive more than 2 days to a week. This will be another blessing.

More Surprises

We had a great 100th birthday party for Dad on Saturday. A total of 94 people were at our house to help us celebrate. Dad was in rare form as I interviewed him about his life. The night before we had dinner with the family, and I also interviewed him for about 30-45 minutes. Yesterday Kevin and his family along with Ken and Virginia went out to visit Dad. He was still alert and able to talk and answer questions about his life.

I had received a call from Life Care on Friday night telling me they had diagnosed a blood clot in his lower left leg and were starting him on Lovenox. This morning around 6:20, I received a call from Life Care that his leg had continued to swell, that it had begun to blister, and that one of the blisters had popped. They felt he should go to the ER. I agreed; so here we are. It’s now 10:01 am. They have found that his white blood cell count is 20,000 and have requested antibiotics to address the problem. It looks like he will be here a few days.

Now for the second, and bigger, surprise. Yesterday afternoon Ken asked if I could take him to Lowe’s to get something for Kate. When we got in the car, he said there was another reason he wanted us to go out – that he wanted to talk with me about something. Then he said, that he and Virginia had noticed some differences in Kate. When he said that, I immediately choked up and couldn’t talk. As we started to drive away, he said that he had been diagnosed with dementia in April of this year. I choked up again and told him that I had wanted to let him know about Kate, but she didn’t want anyone to know.

After going to Lowe’s we went to Panera for coffee but especially to chat a bit. We decided to have a conversation with Kate and Virginia after we got home. At home he told Kate that he wanted to talk with the 2 of us a moment and broke the news to her. I never let her know that I already knew. Kate then told him that she has AD. That led to our bringing Virginia in to talk with us. We then had a good conversation for perhaps an hour. It was good to talk with them. I was the tearful one as usual. Ken, Virginia, and Kate seemed to handle things well.

Later Kate and I talked about feeling better that Ken had told us. Personally, I feel closer to them now that we have shared our information. I told Virginia this morning on the phone that we will walk this journey together.

Follow Up to Mini-Crisis

When I picked up Kate, she seemed to be a good humor. The tension seemed to have passed. She said a few things about the good candidates they had interviewed and I made some brief responses, but neither of us tried to go back to discuss the events preceding her meeting.

We went out for pizza for lunch. After we were seated at a 2-seat table, she looked at me and said, “I wish I could sit next to you.” I reached to hold her hand across the table and didn’t say anything. I could tell she was still feeling the hurt and frustration over the events of the morning. This is especially painful for me. I hate for her to suffer, and I hate it when I am the immediate cause of her pain as I was this morning. Of course, I recognize that it is really her AD that is the source of the problem.

The light is really dawning on me that I need to work with her to enable her to do as much as she can while I see that everything that needs to be covered is covered. She won’t be able to get things done without my help. I know it is good for her to continue to do as much as possible for as long as possible.

I’m not sure why but when I hit things like this, I begin to wonder how soon I should tell the children. What I fear is that if they know, the grandchildren will soon know. Then it is possible that they will say something to Kate that lets her know everyone in the family knows.

Mini-Crisis

Memory loss is generally believed to be the primary symptom of AD. For Kate I think it is the dysfunctional way she addresses everyday tasks. Part of this I believe may relate to memory. Let me give this example that occurred this morning and the previous few days.

Kate recently learned that she would be interviewing candidates for a PEO grant this morning. She knew that she would do this with one other other person. Knowing that I would need to take her because she would get lost, I asked her what time she was meeting. I did not ask the location because she has always met in the library. Kate told me she didn’t know, that she had the information in an email on her computer. I asked her again last night what time she had to be there. She said she would check. This morning I asked again. She simply said, “Not yet.” I asked again a little later. Finally, at 9:20 I asked again. She did not seem concerned but a little frustrated that I would keep asking. I told her that I only wanted to know because we might have to be leaving right away. She got upset and started to cry and said would call the PEO sister she was working with. I followed her. Kate didn’t know where her phone number was. She ultimately found it in her PEO directory and called her at 9:25. She found out it was 9:30. We rushed right over to the meeting place. We got there at 9:45 and found the building was closed. We went to another building to see if we could find any information that would help us. We finally learned where the meeting would be and got there right as the first candidate was leaving.

I know this was an embarrassing situation for Kate. This is the kind of thing that is going to catch up to her, and her friends are going to recognize that something is wrong.

In addition, I talked with Kate last night about her role in this year’s process of selecting candidates. I reminded her that when she finished the last time she said she would only help with the interviewing of candidates and would not get into writing letters of reference and helping the candidates get their applications in online. She did not remember this of course and did not like the idea. I told her if she wanted to do what she did last year, she should get me to keep the records, including contact information, for each candidate because she misplaces the information and then is frustrated when she needs info and can’t find it. This kind of thing is going to become a nightmare. We’re on the edge right now.

More Examples

Dad’s 100th birthday party is now less than 2 weeks away, and we are trying to put the finishing touches on the house, yard, and details. I have mentioned that Kate has worked incessantly trimming plants in the yard for months. She believes (correctly, I think) that pruning the shrubbery helps to let in light that ultimately leads to the shrub’s filling out. The problem I have seen from the beginning is that they looked good when she started, and I wanted to have everything looking good for the party. She has trimmed things back so much now that she is now going to spend money hiring someone to buy and plants new plants to fill in the bare spaces she has created. I have tried to diplomatically mention the need to stop pruning, but she has taken offense. I backed off and have let things go. If it’s bare, it’s bare. I’ll focus on other things.

Another issue is that we have been collecting gnats in the house. She does not fully rinse yogurt containers and other containers and plates and leaves them on the counter. Not wanting to hurt her, I told her the other night that I discovered a yogurt container that I had left in the house covered with gnats because it had not been rinsed well. I suggested that we would have to watch that if we wanted to control the gnats. It means nothing. She continues to leave items with food on them; so I am trying to control myself and just not say anything. While I can do this, it is quite frustrating.

Caregiver Stress

I am only minutes away from finishing Jan’s Story. I have a number of reactions. The biggest problem I’ve had is the title. I still think Petersen is telling his story more than Jan’s. It is clear that he has suffered a tremendous amount of stress that I haven’t come close to having. Listening to the book again is causing me to reflect on my own adjustment to Kate. One thing I struggled with is the last chapter or two when he talks about establishing a relationship with another woman. This would seem to be a difficult thing for me to consider. I simply can’t imagine it’s happening. I do understand that each person’s situation is different; so I’m trying not to be too critical of him.

As to my own adjustment, let me say that I clearly am making continual adjustments to Kate’s condition and specific things that she does. I do not, however, feel that I am under tremendous stress (underscore “tremendous”). I also experience the pain at signs that our relationship is changing for the negative. One of those is that I have to be very careful what I say and do. She is quite sensitive and feels hurt or angry or both when she feels I am criticizing her in any way. Another thing is the change in our conversations. This is minor at this point, but I can see a more serious change is on the way. I tuned into that problem in Petersen’s book. There are limited things we can talk about, and we can’t get very deep into anything. It is simply too frustrating. I emphasize again that this is not a big issue yet. I say that because Kate is much less talkative than I. She feels comfortable with periods of silence. For me, when there is silence, I feel a need to fill it with chatter about something. For her this can actually be annoying. Now I am more comfortable with silence because I know that this really is good for her. The things that she talks about most involve the yard and her plants and the house. We also talk about previous trips and the good times we have had.

Another minor problem for me is something that relates to our differences in communication. I would be more prone to acknowledge publicly my Alzheimer’s. She still wants to keep it secret. I do understand why she feels this way. She is not one to lead a cause; so she doesn’t want to do anything like President Reagan or the UT women’s basketball coach. The big issue for her is the way she is likely to be treated if people knew. As it is right now people treat her normally. That might be very difficult for them to do if they were aware of her condition.

One reason I am keeping this journal is that I might want to be public sometime in the future when it would not matter to Kate. I can easily see my creating a blog or speaking to support groups or volunteering with the Alzheimer’s Association in some way. In fact, if my health still permits, I believe I am very likely to make a commitment to work in some volunteer capacity to assist either caregivers or patients or both.