How am I Feeling?

Observing Kate’s decline over the past few months and finally taking steps to get in-home care for her has left me feeling a bit sad. It also makes me think about what other caregivers have said about “grieving” for their loved one long before their death. I can see (feel) exactly what they mean. Recognizing the need for in-home care is not really the beginning. For much of the time since her diagnosis, I have come to understand that our lives together have been permanently changed. As all my entries in this journal convey, that hasn’t meant that we have not enjoyed life. I still maintain that these years have been the best of our marriage. That is because we have worked hard to make the most of the changes. We have lived to make each moment special. The reality is that our lives have changed continuously since the first signs of her illness 11 years ago.

Reaching the point of in-home care is a significant one symbolically. It signals a time when the severity of her illness requires more help. Although we will begin with minimal help, that is our first step toward full-time care. In the meantime, I plan to continue doing as much as we can socially. We will continue to go to Panera each morning. We will continue lunch with local friends. We will also visit our friends in Nashville. This Sunday we are going to Asheville for a show at one of their local theaters. Once again, we will stay at the Haywood Park Hotel, our home in Asheville since they opened. We have season tickets to the Bijou in Knoxville. We will try the Live in HD at The Met productions. I am a little guarded about those. We walked out at the first intermission of the last one.

That said, I can’t forget that we are approaching that chapter of Kate’s illness that I have not wanted to face. I am at a weak point emotionally, but I know that we will be able to cope with what lies ahead even if it is through lenses covered with tears.

More Signs of Change

Following yesterday’s eclipse, Kate and I went to Barnes & Noble. This was unusual in that she worked steadily on her iPad for more than 2 hours before leaving for dinner. Just before 6:00, I asked if she would like to go to dinner. She said, “In a few minutes.” I waited another 15 minutes. She still wasn’t ready. Finally, at nearly 6:30, I told her I thought it was time for us to go. That is very unusual. It is rare that she wants to stay in one place that long.

We went to a nearby restaurant for dinner. As we got out of the car, Kate said she wanted to find the restroom. We met the hostess at the front who told us the table at which she would seat us. Then I walked Kate to the restroom since it was not easily spotted from the entrance or where we were to be seated. When I showed her the door to the restroom, I started to turn around. I was going to wait at out table and keep my eyes out for her when she exited. She very quickly asked me to stay right there. That is the first time she has ever done that. That is another indication of her own realization that she can have a hard time finding me.

When we got home, she wanted to pull leaves. As she has been doing lately, she asked if she could. Then she asked where she could work. Later I called her to come inside as it was getting dark. After she was inside, she asked, “Are we going to stay here tonight?” When I said yes, she said, “That’s what I thought.” It’s been a while since she has done this, but it has occurred periodically over the past couple of years.

In a few minutes, she called to me. She was in the middle bathroom. She showed me the clippers in her hand and then put them under the towels in the closet by the sink and asked if that were all right. I hesitated. Then I told her I might forget where they are and to give them to me so that I could put them in the laundry room or in the garage where we usually kept them. She accepted my suggestion and gave them to me. She has been especially cooperative today.

Sad Moment, – Sundowners?

About an hour ago, Kate came in from outside where she had been pulling leaves since we got home from dinner. I met her in the laundry room, and she said, “What now?” I told her it was time to take a shower and get into her night clothes for bed. She accepted that and went to shower.

After quite a while, I went back to her room to make sure she remembered to put on her night clothes. When I got there, she was about to get dressed to go out. I told her I was just coming back to remind her to put on her night clothes. She thanked me for that and said she was about to put on her regular clothes. I left the room.

In a little while she came into the kitchen fully dressed with her iPad in her hand along with a book of crossword puzzles. She was ready to go out to Panera or Barnes & Noble. I reminded her she needed to put on her night clothes. She went back to her room.

I had sat down in my chair in our bedroom when she walked in fully dressed. Once again, I told her it was time for her night clothes.

She went back to her room. When she returned, she was carrying a night gown but still dressed. She said, “I can just put this on over . . .” (did not finish). I told her she should take off the clothes she was wearing and just wear the night gown, that she would get hot wearing both.

She left again. She came back without the nightgown but had put on a different top. I stood up, walked over to her and put my arms around her and told her how much I loved her. She hugged me tightly and started to cry. She quickly stopped herself. Then I said, “Wouldn’t you like me to get you a night gown?” She nodded. I went back to her room and got a night gown and brought it to her. When I gave her the gown, I said, “We take care of each other, don’t we?” She agreed. Then I took the clothes she had been wearing and hung them up in her closet.’

I am back in the bedroom now. She is working on her iPad. When I walked in, I said, “The way you are lying there you look like the subject for an artist to paint.” Then I said, “We have a good time, don’t we?” She agreed. I said, “We’ve had a good time; we are still having a good time; and we are going to have more good times.”

New Patterns

I have previously noted on several occasions that Kate will ask me if she can pull leaves outside as we approach the house after being away from home. This started as something only occasional. It is now becoming a regular pattern. Normally, she asks, “Can I pull some leaves?” After I tell her she can, she frequently asks, “Can I use the clippers?” Often she doesn’t say the word for clippers. She just closes and opens her right hand. I know what she means and tell her it’s all right. After that, usually as we have pulled in the driveway or garage, she says either, “Where can I start?” or “Where do you want me to start?” or just “Front or back.?” I sometimes tell her she can start anywhere she wants. Sometimes I know that we will be going out soon and don’t want her to get so hot that she needs a shower. In those cases, I sometimes suggest she choose a shady spot or even point out a shady spot if I see one. Having settled on where she will start doesn’t mean that is what she does because her memory doesn’t permit her to remember. She seems to gravitate mostly to the two flower beds along the driveway or the flower beds in the front of the house.

Strange Behavior

Kate came in from outside a few minutes ago. She stopped about 12-15 feet in front of me with a puzzled look on her face and said, “Something’s going on.” Then she didn’t say anything. I stood up from the sofa and walked over to her. I tried to get her to explain. She struggled to find words. I asked if it involved somebody else. She didn’t answer. I asked if it involved her. (Something she said made me think that she was worried about herself or something about herself.) She said yes. I asked if she was afraid. She said yes. Then she said that maybe she just imagined it. I couldn’t get anything more. She was quite hot from having been outside. I asked if she wanted to cool off. She said she did and wanted to go get something to eat. We had just eaten about an hour earlier; so I knew she probably was not hungry. I also know from past experience that she sometimes says she wants something to eat or drink and then promptly forgets it. It did turn out, however, that she wanted to get out of the house.

On several afternoons when she has wanted to “get out of the house,” I have mentioned going to Barnes & Noble. In each instance, she has said no and reacted as though it had been a silly suggestion. That has led me to take her back to Panera. It is often hot in the afternoon there; so I was looking for another place. Figuring that she simply didn’t remember that B&N has a cafe and tables where we could camp out the way we do at Panera, I brought her to B&N without telling her where I was going. She never raised a question even upon arrival. We just got out of the car and walked in with our cups and iPads and my laptop. I picked out a table, and she sat down. I got each of us an iced tea. We have been here over an hour, and she hasn’t gotten up from her seat. She is still working puzzles on the iPad. I will come back again. It gives us a good alternative to Panera.

More Signs of Decline

It’s too early to be sure, but it appears to me that Kate is going through one of those sharp declines I have heard other people talk about. I just hope this does not signal something more drastic than what I have observed this week.

Tonight we had dinner at Naples, a local Italian at which we eat once a week. I order chicken Parmesan for Kate one week and lasagna the next. Tonight it was the Parmesan. Right after we got in the car, she said, “They make a good pizza.” We’ve only ordered a pizza there one other time, and that was the first or second time we ate there about two years ago.

Before coming back to our bedroom this evening, Kate called from the kitchen. She wanted to know how to turn off the kitchen light over the island. This is the primary switch we use all the time. When I showed her the switch, she said, “I thought it was there; just didn’t know which switch.” In fairness, there are at least 6 switches, but this is the first time I have ever known of her confusion.

As usual, I feel sad for her and anxious for myself. I know that she doesn’t show any signs of frustration, but I still feel sad to see her losing so much of her ability to do everyday things. I feel anxiety thinking about how I will adjust to the future. I know I will adapt, but I fear the future right now.

Other Signs

After Kate and I got home from lunch today, I came inside. She wanted to pull leaves in the backyard. I had a 2:00 doctor’s appointment and had decided to take her with me rather than leaving here home alone. When I told her I was taking her, she didn’t question it at all. The same was true the last time I paid a visit to his office. My plan was to leave the house at 1:25 in order to be there 15 minutes before hand. At 1:10, I went outside and told her it was time to get ready to leave. She said she wanted to change tops. I told her that would be fine, but we didn’t have time for her to take a shower. She didn’t like that, but I thought she had agreed. I gave her a few minutes to change. Then I went back to her room where it appeared that she was getting ready to put on clean clothes. I told her I was just checking, that we needed to leave. I left her again. When I went back, she had just gotten out of the shower. I told her it was time to go and to hurry. I hate doing this, but she moves as though time doesn’t matter at all. Then I said, “I really need to go.” That led to a panic attack that didn’t fully cease until after we were in the doctor’s waiting room. What really bothers me more than that I caused the attack is that she is then so sorry that she has upset me.

We are now back home. She was fine even before we left the doctor’s. That is one of the positive things about Alzheimer’s. Shortly after we got home, she wanted to go outside to pull leaves. She asked me if she could do so. I told her she could. She asked if she could pull leaves in front. I told her she could. She came inside and put a shirt on over the top she was wearing. I was here in the kitchen. She walked in and asked if she could go outside. Again, I said she could. She asked if she could use the clippers. When I told her yes, she gave me a look of surprise as though I sometimes say no. I don’t ever recall doing so.

Symptoms of a Decline

Since my post the other day about the possibility of Kate’s experiencing a sharper decline than I have observed in the past, I have thought a little more about what it is that makes me feel that way. I obviously felt strong enough to start filling out a claim form for long-term care insurance, to call the insurance company for some answers, to contact an in-home agency, and sign a contract for services beginning in September.

My answer is this. It isn’t a single behavior that makes me feel this way. It is a combination of little ones. I do believe the pruning of our neighbor’s shrub was an important sign, but it is also expressed in more signs of confusion than usual. She has been acknowledging that she can’t remember things. She seems a little more childlike. She is regularly accepting my offer to get her night clothes for her. It is also the increasing problem with salivation and lack of concern for her appearance. I also noticed two other things yesterday. She spit on the carpet at Panera. When we came home, it was raining. She had several used paper napkins in her hand. She just threw them on the drive back of the garage.

I hope, of course, that I am wrong about getting a signal that she is on a steeper decline, but these signs make me thing she is.

I took a big step: In-home care

This afternoon I met with a social worker with an in-home health care agency. She is someone that I have known at least 15 years, perhaps 17. She used to work for the physician practice with which my mom and dad’s doctor was affiliated. Later she worked at the VA where I also knew her since Dad got his prescriptions there. In addition, I also know the marketing representative for the agency. I had worked with her in providing rehab services for my father’s companion after her hospitalization in 2007 or 2008. Another reason I feel comfortable with this agency is that Kate had interviewed the owner during the time that another agency was providing care for Kate’s mother. Kate had been impressed with him. In addition, one of the social workers at Kate’s physician’s practice (the same one my parents used) had given me the name of this agency and one other as places she felt good about.

I was impressed with the listening skills of the social worker. She didn’t interrupt me once as I was giving her information. That is rare. After giving her all the background information I wanted her to have, she gave me information about the agency and their services. Then she completed a form with information about Kate and had me sign a contract.

We plan to start the Wednesday after Labor Day. We will begin with a three day a week schedule. They have a 4-hour minimum. On Monday, someone will be there at noon so that I can get to Rotary. After Rotary, I will go to the Y and then back home. On Wednesday and Friday, a caregiver will come at 1:00. I will go to the Y at that time run errands or meet someone for coffee or whatever so that I can be home by 5:00.

I set up an appointment for the social worker to meet Kate on August 23. We are going to meet at Panera. The plan is for it to appear as a chance meeting. We will be there a little early. When the social worker arrives, she will stop by our table and say hello. I will invite her to sit down with us.

I haven’t figured out exactly how to explain the caregiver to Kate. My plan is not to define her as a caregiver. This is an important first step. I am optimistic that it will work out fine.

Feeling Sad, Anxious

Kate’s confusion related to pulling leaves from the neighbor’s shrub as well as a number of other things have caused me to believe she may be on a more serious decline than in the past. On my agenda today is a phone call to one of the agencies with which I spoke a month or so ago. I am going to let them know that we are coming closer to using their services. I also plan to ask them what they have learned about transitioning to in-home care for those patients who don’t believe they are ready for it.

I also need to call Transamerica again regarding the completion of their application. First, I am going to review the application as though I were filling it out. I am bound to notice things that are not clear. I will jot those down before making my call. I also want to make sure of whether or not there is a requirement that we go through an agency as opposed to hiring caregivers directly.

This is ironic that I should be feeling the last stage of this disease closing in on us just as we are about to embark on new relationships with two couples
The good thing is that Kate doesn’t seem to be affected emotionally by what is going on. She still feels quite normal and happy though as some other caregivers have noted her happiness is flatter. I get sparks of the former Kate when we go to Opera Thursday and Broadway Night at Casa Bella.