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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.

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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.

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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.

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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.

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Jan’s Story

I am nearing the end of Jan’s Story, by Barry Petersen. It is an account of their lives during the time of Jan’s Alzheimer’s. As I may have said before, the title is not the most accurate. It really should be Barry’s Story or Our Story. This is my second time through the book. This time I have connected with it a little more. That relates to the progression of Kate’s disease. I can easily relate to many of the details (symptoms) that he describes. Of course, each person’s journey is different; so not everything is identical. Still, I found it comforting to listen to. I think this is especially so because I have told no one other than our pastor, about Kate’s diagnosis. I continue to believe that even the number of people who suspect couldn’t be more than a handful. I recognize, of course, that those who suspect have told others. No one, but our pastor, has given me even a hint of sensing something is wrong. I take that back. Our associate pastor said something that made me think she knows.

One of the things that struck a common core was the dysfunctionality of Jan’s behavior. That was the earliest sign that I had that something was wrong with Kate. I recall that she had her own suspicions very early, before I suspected. Barry talks about learning to bite his tongue when he saw her doing silly things. I am trying to do the same. This book has given me a additional motivation to do better. I have noticed recently how much Kate is bothered by my looking over her shoulder and telling her what to do or that she has done something wrong. This is hard. Intellectually, I already know this is something that she cannot control. That means there is no good to come out of correcting her.

Some things are a particular problem because of my own personality. For example, she is not good about rinsing dirty dishes. Yesterday, she left a used container of yogurt on the counter. When I came in from Dad’s yesterday, I saw it and that it was covered with gnats. I rinsed it and put it in the recycling. I didn’t say anything to her because this is something she won’t be able to change. This means I have to check behind her a good bit. That’s easy for things like the yogurt container because it was in plain sight. The problem comes when she might put something in a place I might not see it.

Interestingly, I don’t see any signs that she tries to hide her deterioration. For example, yesterday after we returned from Gordon Seacrest’s burial, she came to me with her earrings in hand. She said, “Look what I did.” She had worn an unmatched pair of earrings. I just gave her a hug and said that no one would have noticed. Later yesterday as we were walking up to the Seacrest’s house for dinner, she noticed stains on her pants. I am noticing many more examples of her not being as concerned about her appearance as she used to be. She goes out in things that have a few spots. This means I need to pay more attention before we leave so that she is able to change.

Petersen’s book utilizes Alzheimer’s 7 Steps as a marker for some of the chapters as he details where Jan is at any given time. That made me go to the Alzheimer’s Association website last night and take a look at the steps. Based on the descriptions, I would say Kate is somewhere in Steps 3 or 4. These things are not precise, and I am not concerned that they be so. We still have a long way to go.

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Calling for Patience

I am really running up against Kate’s thinking I am always after her about something she has done wrong. Earlier today I said, “Uh Oh” about something I had forgotten. She jumped. She knew I was calling her down about something. That wasn’t it at all. I asked if she thought I was getting on her a lot. She said yes.

That coupled with my stronger than intended (or perceived) comment about our patio furniture last week has me trying to be exceedingly careful about what I say. The biggest difficulty I am having is with the shrubbery around the house. She loves to prune and pull leaves off the shrubs. She believes, and I agree, that it has long term benefits by enabling light to get into the deeper parts of the shrubs so they will fill out. The problem is that she has denuded most of the shrubbery in the back yard just when we are getting ready (in 2 weeks) to have almost 100 people over for Dad’s 100th birthday party. She thinks she is getting it looking good, but it looks worse all the time. It looked good before she started.

The other thing is that she rarely cleans up the mess. She leaves branches and leaves on the walks around the house and in the yard and in the driveway. The only time it gets cleaned up is the day the lawn person comes to mow. Then immediately it is a mess again. The walkway from the spa to the side of the house has been covered with debris for 2 weeks. I have said something to her a couple of times. The last time she took offense. I have decided to just let it go. We’ll just have to do some last-minute work before the party. Then it will be a mess again.

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Continuing Ups and Downs

The past two days with Dad have been super ones. On Monday he was up when I got there. Yesterday he was still asleep but awoke easily. This has been a pattern for 3 weeks or so. Prior to that he had always complained that “I’m still asleep.” I am beginning to wonder if the change in his medicine might have made a difference. That’s the only reason I know of.

Both of the past two days he has been alert with no delusions. In fact, he entered into a conversation with the daughter-in-law of a woman who eats at the next table from Dad. I turns our her father was from Rogersville where Dad lived while a boy. They chatted about familiar things. He was amazingly clear headed. He also has continued to eat well. I think they are following up on my concerns about his diet and giving him things that don’t choke him as easily. For the most part, however, he has generally been eating well for several weeks starting about 2 weeks after coming back from the hospital.

There are several things to report about Kate. First, I hurt her unintentionally last week. It was a Monday night, and I had brought home something for us to eat. It was a beautiful afternoon; so we decided to eat outside. She wanted to eat at the table, but when I went over to the table I notice that it was messed up with potting soil that she had spilled while potting plants. Some of the soil had spilled over onto our new cushions. It had also rained earlier so there was a slight mess on the chairs. I said something to her about her having promised that she would watch out for the news cushions so they wouldn’t get messed up. I didn’t want them messed up so quickly, especially since we had done this in preparation for Dad’s birthday party.

I thought that I had made my remark as gently as I could, but it hurt her deeply, and I felt miserable. One of the things I have discovered is that she is very sensitive. I also believe a major part of this is that each event like this is another sign of her inability to do certain things. She is finding fewer and fewer things she can do well.

One example of her difficulty doing things is posting a message on Facebook. She asked me to show her how; so I brought up the screen with the space to enter her message and left the room. I’m not sure what happened, but she let me know it didn’t post. I set it up again, and she ran into another problem. Finally, on the third try with me by her side, she did it.

The really good news is something that I have mentioned before. In most respects, people would never know that she has Alzheimer’s. She is good in conversation. She only slips up on remembering who people are, but it is usually easy to get around that by being pleasant and acting like she knows them. The other day a neighbor, pulled up in the driveway when she saw Kate working in the front yard. Kate didn’t recognize her at all. She asked Kate for a copy of our neighborhood directory to give to 2 new families that have moved to our street. Kate told her to see me and that I would give them to her. When she asked me about the directories, I told her I was unaware that we had any remaining directories. I did this because Kate had been unable to locate any several weeks ago when we were working on the information for a new directory.

The directory is another of those tasks that is a problem for her. I have taken that over, and she hasn’t said a word. There are many things like that. She takes most of them very naturally. Other times she is bothered by my trying to help her with something she feels like she is able to do.

I am re-listening to a book by Barry Peterson called Jan’s Story. It is an account of his experiences with his wife who had Alzheimer’s. One of the things he mentioned is the change in conversations that he and his wife used to have. That is definitely happening to us. Kate cannot follow anything that is the least bit complex. I am quite accustomed to her saying, “Let’s not talk about it.” Often it doesn’t leave much that we can talk about except to reminisce – past experiences, places we have been, special moments shared together.

I am also noticing more memory loss. That is something that most people see as the key problem with Alzheimer’s, but I have felt that in the early years it is the inability to function well on everyday tasks that is the real problem. Before I really believed she had Alzheimer’s, I thought she was having a problem with depression. I have no doubts now that the problem was Alzheimer’s.

I continue to believe we are better off for having learned of her diagnosis. It has given us the opportunity to take advantage of our time together. I think we have both been committed to this end, and it has worked. We continue to enjoy ourselves. When we go to dinner as we did last night, it becomes a special moment for us even though it was just a Tuesday evening dinner. I am optimistic that we will have many of these times ahead even as she declines further.