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Turning Point

On Sunday Kate went to the church library while I went to my SS class. After class I went to pick her up for the worship service. When we began to walk to the sanctuary, I could tell Kate was down and not so interested in going to church. I asked if she would like to skip today and go directly to lunch. She said, “Yes” and breathed a sigh of relief.

On the way to lunch, I told her I would not get her into a discussion but I wanted her to know that I saw her frustration and recognized that she doesn’t like to talk about her problem(s) but that I also felt I had to say I want to help her. She acknowledged that I was right and said, “I am feeling more frustration.” We didn’t discuss anything more, but I did ask her if she felt we were at the time to tell the children. She gave a strong no.

Yesterday afternoon I dropped by the church to pick up a DVD from one of our church staff. I saw several people and one of our associate pastors, invited me into her office. She offered to help me in any way if I wanted anything. This was the second time she has offered which confirmed that our senior pastor had told her about Kate. I suspect this means that all of the pastors are aware of the situation. We had a good, though brief, conversation about the situation. I told her I was struggling with whether or not to tell the children and that I thought we were getting to that point even if Kate does not.

After I got home, Kate received a phone call from her hairdresser who said she had left a message that she could take Kate for a 3:30 appointment. Kate had not checked messages; so she didn’t know. It was 3:40; so I offered to take her to the appointment. After picking her up, she volunteered that she thought she had reached a new level. I told her I agreed. She noted that it was not a dramatic, but a gradual change that has occurred. I agreed with that.

I have been increasingly worried about her driving. After picking her up, I had to leave for a meeting at a law firm at 5:30. She told me she planned to go to a Mexican restaurant near our house for dinner and leave at the same time I did. I told her I would feel better if she went to Panera. It’s even closer. She suggested she would be all right.

When I got out of my meeting, I looked at my phone and saw that I had a couple of voicemails, one of which was from Kate. I quickly listened to it. She told me she was back home and all right. Then she conveyed information that let me know she had been in an accident. It turns out that she was presuming that I had listened to an earlier message from a number I did not recognize. That was a call from the police officer who was at the scene, gave her a ticket for running a red light, and took her home.

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Not everything is good

Yesterday afternoon we went to see the movie, The Book Thief. It is a good movie, but gut wrenching. Deals with the holocaust. As we were about to leave the theater, I said to Kate, “I hate to say this, but I fell asleep before the movie started and missed the beginning.” She sensed I was about to ask her how it began when she suggested going online. She seemed a little depressed which I associated with the movie. As we walked down the hall she said, “I can’t even remember anything about Captain Phillips,”a movie we had seen 2-3 weeks ago. I sensed then that she was depressed over not understanding the movie we had just seen. I have mentioned before that she finds it hard to follow movies and plays and it is frustrating. This time she was more depressed than usual. I said something intended to be supportive, and she gently said, “Don’t say anything. I know you want to help me.” We drove home quietly. I made a fire and thawed some chili from the freezer. We sat quietly in front of the fire until she wanted to go to bed. We talked very little during that time. Before going to bed she said, “I’ve been pitying myself all day.” I said, “You’re entitled.” After I had taken my shower, I got into bed and hugged her until we were both asleep

I am also realizing that her behavior sense Dad’s death is not entirely part of our grief. The weather has changed, the party is over, and she is not spending a good part of the day pruning. That was a major activity before the party. Thus she is left with little that she is able to do, but play Free Cell on her computer.

This has led me to go back to my thinking about telling the children about things after Christmas.

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How Things are Going 5 Weeks after Dad’s Death

We just got back from Ellen Seacrest’s house where we had lunch with several other friends. Kate is taking a short nap before we head to a movie; so I thought I might make an observation or two on our current state.

All-in-all I think we are making slow but steady progress in our recovery. Surprisingly, I think Kate is having a harder time adjusting than I. I think that is due mostly to the fact that I have had a number of responsibilities with the  foundation, music club, and Sunday school that have kept me busier. Kate commented yesterday that she is finding herself not having anything to do. We have both talked about pursuing some kind of volunteer work. I have even gotten the name of a contact at one of our hospitals. I will contact her after the first of the year. I mentioned several different things I thought we might do, and working with children was the one Kate liked most.

I notice that Kate is spending much of her time playing Free Cell on her computer. I think that is because so many other things frustrate her. Also the weather has been colder. That makes it more difficult to be outside pruning the plants.

We went to New York last week and had a great time, but we can’t always be doing special things. Beginning now I need to make more effort to see that she is occupied in worthwhile/pleasurable activities. Otherwise, she will just vegetate. She can’t seem to focus on anything for any length of time. She started decorating the house for Christmas. I thought that was a good idea, but she stopped with garlands of greenery thrown on the floor or across the furniture.

Her short term memory is clearly getting worse. I think this is what is going to give her condition away to friends. She is very likely to ask the same question in relatively short time frame. This is beginning to happen a lot.

As we were coming home from the Ellen’s, she said she had talked with a man who told her that his wife “has the same thing that I have. What is that?” I told her it was Alzheimer’s. She, of course, remembered immediately. This is a frequent occurrence. Yesterday she asked me to tell her our passcode to listen to our voicemail. This is something she has been using for several years without a problem. Later in the day she had to ask me again.

I am struggling about telling the children. I want to honor her desire that they not know, but I feel I have benefitted by knowing. It means I make the most of the time we have together. The children don’t stay in as much contact with her. This is not anything that she even realizes, but I believe she would love it if she heard from them more frequently.

Yesterday I had just about made up my mind to tell them before her birthday in January. Today I am more doubtful. I don’t want the grandchildren to know. They might say something to Kate. Then Kate would know that I had betrayed her confidence. As I write this I am feeling like telling them anyway. I have a little time to think and will weigh the pros and cons.

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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.

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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.

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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.

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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.

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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.

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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.

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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.