| A real-time account of Dementia Caregiving

August 26, 2014March 6, 2018

“Imagine how you would feel if you lost your independence.”

This morning before we went to breakfast with my Y group, Kate reminded me that I was going to take her by Walmart to look for plants. Even though I try to be supportive she knows that this is something I would rather not do. She thinks, however, that it is because I don’t want to have plants in the car. While that is a concern, I have worked it out so that we can put them in the trunk and have been doing so since the spring. The real issue is that she keeps buying plants even though we are getting to a season when things will start dying back. I don’t believe I should feel this way and try to hide it, but something shows I am not in full support of her purchases.

At any rate, as we were driving to the breakfast, she asked me if I thought she could drive again. I told her no. She asked me why. I told her because of her judgment and difficulty perceiving things around her. She didn’t say anything else until after leaving Walmart. She thanked me for taking her, and said she felt guilty. I told her I didn’t want her to feel any guilt. I told her I was happy to take her. She then said, “I feel like a child.” When we got home and had unloaded the plants, she said, “Imagine how you would feel if you lost your independence. I feel so trapped.” I tried to sympathize and even offered a time for us to stop and talk. She didn’t want to. I ended up coming to the office.

It is yet another reminder that she does have a grasp of her memory and other abilities and feels frustration over her condition. I can’t imagine fully what it is like to find there are so few things that she can do and how dependent she is on me. I wouldn’t like it either. This is a long road. Fortunately, there are many good things one can do, but the reality is that one loses more and more independence along the way.

August 18, 2014March 6, 2018

Email to Kevin

Aug 18, 2014, 2:12 PM

Kevin,

I believe the time has come to tell the children about Mom. Heather will not be surprised. Based on the things she has observed on our trip, she will be better able to understand Mom’s behavior. I know you will be able explain things in a way that will be right for them. Please make sure that they know that Mom prefers that people not know.

We loved our trip with Heather. We had only two low points. The first, of course, was the musical on Friday night. The second was this afternoon when Mom was surprised that Heather was not going back to Knoxville with us. The amazing thing was that she was with us the whole time we were talking about and then arranging for her to catch an earlier flight out. She simply didn’t understand. She thought we had discussed her coming to Knoxville and going shopping at Belk’s. She was upset with me for not arranging for her to come to Knoxville. It is sad for me to see this kind of confusion, but this is only the beginning.

Love,

Dad

August 21, 2014, 10:09 PM

Dad,

Thanks for bringing this up. I have had a heavier heart since I read your e-mail and Mom called my cell number early Tuesday not clearly understanding whose number was on the Caller ID. Soon I will discuss with Rachel (I have wanted solo reflection time) and begin preparing for a conversation with our kids. All along part of me has wanted to be more open about what is happening countered by not saying a whole lot. Either way, my goal is to show honor, respect and dignity at all times to the Mom (and Dad) God gave me.

Hopefully I can have this talk with Brian, Heather, and Taylor relatively soon. Then I would like to have a phone call with you afterwards to share. You and I are due for a talk anyway. All three of our children are astute yet Heather is much more verbal. Upon her return Monday she’s said nothing about noticing changes in Mom (to me at least and Rachel hasn’t told me anything she has heard). In fact, she said you and Mom mentioned having Jesse go with the two of you with Ron, Randy and Taylor all to NYC because an extra adult makes sense to look out for all the kids. I comically responded, “If an additional parent needs to go and Taylor is going, what about me?” Heather corrected my grammar (I was right) during our talk and said Mom corrected her grammar while in NYC, expressing a little frustration. My response was, “Nan will always be correcting grammar and has done so with Aunt Jesse and me.”

I will keep you posted before we talk with the kids and then we can find time to speak. You are an inspiration and are giving me a wonderful example of service and sacrifice.

Love, Kevin

August 22, 2014, 8:30 AM

Kevin,

Thank you for your very thoughtful and sensitive response to my email. I knew when I sent it that you would be able to present this to the children in the best way for them and for Mom. I am also touched by your grasp of the sadness that goes along with watching someone you love gradually lose her ability to do everyday things. Since you mentioned the telephone problem, you will also get a picture of the situation with this additional note. She was trying to get our phone messages when she called you. At first I didn’t recognize how much she was struggling to do it. She is also trying to be very independent; so I try not to jump in too quickly when she needs help. (Heather told Mom that I worry about her.) Finally, she gave me the phone and said, “Here, you do it.” This just illustrates some of the little things that she has trouble with. She struggles to do many simple tasks, and it frustrates her. The day we met Heather in Nashville we had lunch with Ann and Jeff Davis. Mom later told me that when Ann asked her where her brother and his wife’s summer cottage is located, she couldn’t remember and said, “I’m not sure. I think California.” That’s a long way from Michigan.

I feel the need to reiterate that despite Mom’s decline we continue to enjoy life. She lovedn our trip with Heather. There are many things she won’t remember, but she will continue to have a special feeling about our time together. While Mom and I rarely talk specifically about her Alzheimer’s, we do mention things (specific instances of memory problems) occasionally and even laugh about them. That was the case yesterday when she received a call from a friend from the Friends of the Symphony. I answered the phone and told Mom who was on the phone. She didn’t remember the person at all, but she carried on a good conversation with her, even expressing enthusiasm upon learning that the person (a widow) has become engaged. When she hung up, she told me she couldn’t remember this person at all. I told her she does a good job faking it and continued to say you do a lot of that. She agreed and laughed.

I will be interested in hearing when you have told the children and how they react. At their ages, I wouldn’t expect anything dramatic from them, but I think it will help them better understand our situation now and in the future.

Love,

Dad

August 17, 2014March 6, 2018

Lost While Traveling

Kate and I are in New York City with our granddaughter, Heather. We are having a great time, but I am finding it challenging to keep up with Kate. I’ve had several scares on the trip.

The first one occurred in the Charlotte airport. Our gate was on a small concourse (12-14 gates). Kate wanted to walk while we waited for plane. Heather and I stayed behind. In about 15-20 minutes, the gate attendant announced that we would start boarding in 10 minutes. We couldn’t see Kate. anywhere. Twice I walked the entire concourse. Then I went to the central terminal and didn’t see her. I returned to the gate to see about paging her. They would only page outside. Finally, she came strolling toward our gate. She had simply walked to someplace outside our concourse and had no sense of time. She said she never felt lost.

The next time was a minor incident at the Empire State Building. Heather and I were on the down escalator when I looked back to see Kate was not with us. I ran up the escalator and found her. She had not seen us get on. She was having the same emotional reaction as we were. Fortunately, this was just a moment.

The last incident as we neared the end of a tour of Rockefeller Center. We lost her when the group went inside, and she didn’t follow. The big problem was that we didn’t miss her for another 15 minutes when the tour ended. I received a telephone call from a Missouri number. The tour was just ending, and I didn’t answer because I thought it was a wrong number. Then I saw that I had a message and called the number. It was Kate. She had borrowed a phone and said that she was at the statue of Prometheus. She had been helped by an employee. I tried to keep my cool but was in quite a panic. The good thing is that she can still remember my phone number and didn’t hesitate to ask someone about using his phone.

August 5, 2014March 1, 2018

Visit to Dr. Reasoner

Kate’s visit to Dr. Reasoner was uneventful last week. I was called in at one point to provide some information about a new prescription (Prempro) for which we were having to get prior authorization. It has now been a month since the doctor prescribed it. I got an email yesterday that it is ready. This is to deal with Kate’s hot flashes.

We are in our third day with Ken and Virginia in Ann Arbor. The visit is going well though Kate has expressed a desire to be home. Last night she was worried that Virginia might be ready for us to leave. I think his was a misunderstanding. It was actually Ken who asked when we were leaving – as a simple question. She translated it as Virginia’s asking interpreted it as being ready for us to go.

I have had two good conversations with Ken. We have exchanged info on Kate’s situation and how she has changed since we last were together at Christmas. He has been open about his own situation and the frustrations he has and that Virginia has. I told him that Kate is more irritable, especially with me, that in general she is more emotional, that her short-term memory is worse, that I notice a decline in the long-term memory as well, that she is frightened by sudden noises, and that she is suffering occasional panic attacks when getting ready to go places.

July 27, 2014March 5, 2018

Couldn’t Sleep

Kate and I got to bed early last night (8:45). I knew I would wake up early. I just didn’t know it would be 3:30. I tried to get back to sleep but my mind kept thinking about Kate’s condition and the problem of her clothes and getting ready to go places. It makes me think that next summer life will be different for us. Since her diagnosis January 21, 2011, I have wondered how much time we have left when we can live a reasonably normal life. I am now seeing signs of the beginning of the end. I must admit that it frightens me.

We went in the pool around 6:30 last night. As we talked, she mentioned wanting to go to Ireland. We discussed doing that in early June 2015. Reflecting on that now, I am not at all sure that will work. If we go with a group, we will face the problem of needing to meet daily schedules that are likely to cause more panic attacks for her. If we go on our own, we face the challenges of travel from one location to another as I don’t think we can find a single location that will let us take day trips to all the places we would want to see. Being realistic, of course, it would be another trip like New Zealand in that we would go without any intention of seeing or doing everything. We could just find a place and stay there. I will do my research and come up with something.

We have often talked about staying at Chautauqua for two weeks rather than just one. Next summer could be the time. I had better look into that soon in order to get the accommodations.

I finally got up at 4:30. I figured that I could accomplish something rather than just lying in bed. It is now 5:05; so it is not far different from a rather normal waking time for me. I will probably shave and eat breakfast and then go for a walk around 6:00. That will still give me time to read the paper before we go to church.

July 26, 2014January 21, 2018

Another Crisis

As we were getting ready to go to a funeral service for a neighbor this morning, Kate had another breakdown (panic attack) as she was trying to find something to wear. She cried uncontrollably for 15-20 minutes. It is difficult to locate things because she tends to throw her clothes on the floor or somewhere else when she takes them off. I have mentioned a number of times that our biggest crises are in getting ready to go somewhere and her getting dressed. I was almost in tears as well as she struggled to find what she wanted/needed and was feeling horrible about her inability to find things.

As we were coming home after lunch we talked about working together to arrange her clothes so that they would be easier to locate.

July 26, 2014January 21, 2018

Continued Problem Getting Ready

Last night we were going out to eat. As I was getting ready, I thought about Kate’s new clothes that we bought several months ago and that she has not been wearing. (I think she simply doesn’t remember she has them.) I called to her and went to her bathroom where she was starting to get ready. When I called she answered with irritation. She wanted to know what I wanted. Before I could begin to explain, I could see that she was breathing more heavily than normal and appeared stressed. She went on to say she just wanted to be ready on time and that she was having to work so hard to please me. She walked away from me. I spoke to her in a gentle voice so as not to further aggravate her and told her that I was just thinking she might want to see if her new clothes would be something she would want to wear. Then I left to get ready myself. When she had dressed, it turns out that she found a new dress and jacket. She looked great. She was also in a good humor.

This experience was the most striking example of the stress she experiences when we are going places. It was more than just a panic attack this time. It was almost as if she were frightened of me as if I was going to abuse her. This frightened me. The last thing I want is for her to think of me as her master. I will write more later to explain that earlier in the day we had had an experience buying more plants in which I had been bothered, and she picked up on it.

July 24, 2014January 21, 2018

Coming Home

As the previous post indicated, we had a great time in Chicago. Kate, in particular, enjoyed being with Brian and especially enjoyed my interaction with him. I don’t think there was anything noteworthy about that interaction. I look at her reaction as another indication of how impressed she is with the things that other people do quite normally that for her are becoming difficult. She thinks many of the people she is around are very intelligent and skilled in many areas. She believes Brian is quite observant because he notices things that she doesn’t notice. One of the things she is losing is the ability to notice things around her. She misses so much; however, that doesn’t keep her from enjoying travel and doing things like attending shows and movies. She also felt that I did a good job of explaining things to Brian. I was, indeed, attempting to teach him things without being too pedantic. For Kate, this was something she can’t envision herself doing. In fact, when she tries to explain things to the grandchildren or anybody else, I can tell that she works very hard to make a clear expression of her thoughts. It is getting harder and harder to express herself.

Lest I paint too glowing an impression of the way that I handle things, especially with Kate, I should point out that Kate told me yesterday that I said something that I should not have said and that there was no reason to say that. After she said she didn’t know something, I had told her that I had told her the day before. That is like saying, “Do you remember . . .?” That is also something she has asked me not to say. Something else occurred today, but it was not a big issue. When she was looking for her computer, I told her that I had taken it to the shop for servicing before we left for Chicago. As it turns out, I had told her, but she had forgotten which is not surprising since that was a week ago yesterday. I did not tell her I had told her before, but I did say that I was sorry to have caused her some distress. She said she wasn’t distressed, she just wanted to know where her computer was and that I should have told her (which I had but didn’t want to say so).

The final thing that I believe is important to say about our trip home is that she was very eager to be back home. She repeatedly expressed how much she wanted to be home. When we finally arrived at the airport, she had a hard time moving quickly off the plane. She was just whipped and emotionally drained.

July 20, 2014January 21, 2018

In Chicago With Brian

We are having a grand time in Chicago with Brian. Today begins our third day, and we have been busy. Here are a few observations about Kate.

She has enjoyed herself. I have been trying to see that she doesn’t get out of my sight for fear of losing her. Yesterday I slipped when we got off the train in front of our hotel. I led Brian and Kate across the street. I looked back and saw Brian and assumed incorrectly that Kate was right behind. When we got in the hotel lobby, I looked around and she was not with us. I rushed back outside and she was waiting on the street corner where we had gotten off the train. I later asked if she realized she was across the street from the hotel, she said no.

A couple of other things are both sad and cute. When we were walking to Tommy Gun’s Garage Friday night, we passed the Sommerset Hotel. It had a plaque that indicated it was built in 1889. I pointed this out to Brian and Kate. The next day we walked past the same spot. Kate noticed it and pointed it out to Brian and me. I didn’t say anything about having shown this to her the day before.