More Pleasure from Her Book

A couple of days ago I commented on the pleasure Kate had gotten over the discovery of a book that I thought had belonged to her mother, Birds of Wington. Since then it had remained on the floor board of the passenger’s side of the car. This afternoon we made a stop by the pharmacy to pick up a couple of things. Kate remained in the car while I went inside. When I returned, she was looking at the book again, just the way she had done the other day. It was like seeing it for the first time.

It is a cold, rainy day, and Kate has been coughing. I told her I would build a fire in the fireplace, and she could look at the book a little more if she wanted. She did. While she was brushing her teeth, I took a look at the title page and found a note her other had written. It said that it had been given to Kate on her 11th birthday from a friend and used for three months in church for Sunday school lessons. For the past 25 minutes, she has been going through the book from front to back. As she looked at it, she kept saying, “This is wonderful.” “This is priceless.” “ This is a treasure.” She tried, and did, read a few sentences to me though it was a struggle. She mostly picked out a few of the Chapter names. Several times she mentioned “Birds of the Bible,” one of the early chapters. Each time it was as though it were the first time. I know this would seem a little thing to many, but I take great pleasure in her pleasure. I’m sure many a caregiver can identify with that.

Follow Up to My Previous Post about Explanations

Yesterday I commented on Kate’s putting an 8 x 10 frame, two tops, and underwear in the back seat of our car yesterday. What I didn’t say is that I had washed clothes earlier in the day. I had taken her underwear and placed them on a towel in the kitchen to dry. In addition, I put several of her tops in the dryer. After they were dry, I had put four of them over chairs in our family room and brushed out the wrinkles. I left these things with the intent of putting them up later in the day. Near the time we were to go to dinner, I noticed that the underwear and two of the tops were gone. Two other tops had been thrown over another chair in the family room. The two tops that were missing were the ones Kate took to the car. I assume that the one pair of underwear was part of those I had put out to dry.

This morning as we were getting ready for our trip to Panera I got an umbrella from the trunk of the car. When I did, I noticed a pile of Kate’s underwear piled beside the garbage bin. It was then that I realized that instead of taking the underwear to her room and putting them away, she must have carried all of them out to the car took out one pair to put in the car and threw the others on the floor of the garage. Just one more thing I can’t explain except to say that it is Alzheimer’s at work. This is a devastating disease. It doesn’t play by our rules.

You just can’t explain everything.

I have sometimes said that the job of an Alzheimer’s caregiver involves two things. One is to prevent problems. The other is to solve them. To do this well calls for a good understanding of the person for whom you care. Ordinary life has led us to search for explanations for just about everything. Some things are easy. For example, if you know that your loved one is cold, you can turn up the heat or add blankets or warm clothing. Most of the time caregivers are able to find the right explanation. Other times, we don’t. That makes me think of Kate’s salivation problem. For about a year and a half, she has almost given up swallowing saliva. Instead, she uses napkins or a variety of paper products to wipe the saliva from her lips. When nothing is available she simply wipes the saliva with her hands or her clothing. I have now consulted three different physicians who have offered several possible ways to address the problem without success. They don’t know why this is happening.

The salivation issue is an unusual one, but there are numerous other things that dementia patients do that are not easily explained. For example, why would Kate hide her iPad in the back of the coat closet in our laundry room? Why would she put her underwear on a shelf in her closet where she keeps her shoes? Why would she put her pill box on the next-to-the-top shelf in our bathroom where it is a challenge to reach? The fortunate thing is that these things are harmless. They just cause a problem when you can’t find what you are looking for.

There are other things that do no harm but are inappropriate in one way or another. Some time ago, perhaps a couple of years, Kate started putting or two or occasionally three tops on when one would do. That in itself is no problem. Layering is often recommended to keep warm in cold weather. Layering could also be done as a fashion statement. Sometimes Kate’s choices could pass for that. Typically, however, they involve multiple tops that don’t match or complement one another in color or style. I never recall her doing this before Alzheimer’s.

This afternoon she did something else for which I have no explanation. Kevin had called. After a few minutes, Kate hung up her phone. It wasn’t long before she came into the kitchen where I was. She was carrying two different tops and an 8 x 10 picture frame containing pictures of our twin grandchildren. She walked outside. When we went to dinner tonight, I noticed that she had put them in the back seat of the car. For the first time, I noticed that she had also put some underwear with them.

For quite a few years, she has brought home left over food items from our restaurant meals. She brought them home in a paper napkin. Originally, these went into the compost. Over time she has forgotten about the compost. Now she frequently just brings our used napkins home. Before we get home, she tears the napkins in smaller pieces. When she gets out of the car, she throws the napkins into a basket on her side of the car. Over time the basket is overflowing with napkins. Then our housekeeper empties them into the garbage, and the process starts all over again. Oh, how I would like to know what is going on in her brain when these things occur.

A Moment of Pleasure, For Her and For Me

Kate hasn’t read any books or periodicals in years, but once in a while she picks up a book at home and puts it near her chair in our bedroom or near a chair or sofa in our family room. Although I’ve never seen her look at them, I assume she must have taken a glance before taking them off a shelf and setting them aside to be read “later.” She has taken particular interest in books that were from book shelves in her parents’ home.

This morning before going to Panera, she brought a book to the kitchen and said she wanted to take it with her. (She wasn’t just informing me; she was asking if that would be all right.) I told her that would be fine. When we got to Panera, she left the book in the car.

I had left a cup at Barnes & Noble yesterday afternoon. After lunch, I told Kate I would like to drop by B&N to see if it had been turned in. She was fine with that. I parked the car in the lot in front of the store and told her she could come in with me or sit in the car. She said she would like to remain in the car. When I returned, she was looking at the book. It was entitled Bird Life in Wington. She told me it was fascinating and wanted to read a passage to me. Her eyesight (from cataracts and her Alzheimer’s) make reading nearly impossible. She struggled, but didn’t read to me. She just leafed through the book and, periodically, would stop and attempt to read. I don’t know much about the book. From what I could see and what little she could read, it is a novel about a fictitious town called Wington in which all the characters are birds.

As she was perusing the book, I noticed her mother’s handwriting on one of the pages. I pointed this out to her. She was touched by that and pulled the open book to her chest. She was so taken with the book at that point that she didn’t want me to drive away; so we sat in the car 5-10 minutes as she skimmed through the book, stopping periodically when something on a page caught her attention. As she did this, I pointed out other places where her mother had written something. Although I don’t believe she understood much about what she was reading, she was thrilled with the book. It was a thrill for me to see her get so much pleasure from this discovery. I told her it looked like it might be a book that her mother had used in her Sunday school class she taught for so many years. It appeared that each chapter may have focused on a particular moral lesson. Of one thing I am sure. This was a special moment for Kate and, thus, for me.

Staying Busy Helps

Kate’s experience of boredom and my effort to relieve it leads to a somewhat active life. Yesterday could have been a problem in that I didn’t have anything planned except her monthly massage at 2:00. We made our daily pilgrimage to Panera, arriving earlier than we have in a couple of weeks. That meant that Kate was ready to leave before time for lunch. She seemed somewhat bored on the way home. Upon our arrival home, she asked what she could do. Since the sun was out and the temperature a little higher than it has been in the past couple of weeks, I mentioned that she could work outside. She liked that idea. About thirty minutes later, I went outside to let her know it was time for lunch. She was sitting in the middle of a flower bed. I have learned to control myself when I see her working like this in her everyday, but good, clothes. That doesn’t mean that I don’t notice. I didn’t say a word.

We went to a deli for lunch where she got an orange cranberry club sandwich that she likes. I got a salad that I like along with a cup of chili. It was a rather typical lunch. She spoke very little but didn’t seem bored as she had been earlier. I think working in the yard helped. It really is her therapy.

We had about forty-five minutes at home before we needed to leave for her massage. She talked about going outside again, but came directly inside and worked on her iPad for a few minutes. Then she rested in bed until I let her know it was time to leave. She was very comfortable and did not want to get up. When I reminded her about the massage, she wasn’t enthusiastic. It was clear that she would rather nap than have a massage. For a couple of years, I have arranged for her to go to a spa twice a month, once for a massage and the other for a facial. I am wondering how long this may be of some psychological benefit. I don’t honestly know how much she gets out of it now. My plan is to continue this schedule for the time being just because it offers another diversion for her, and it must be of some pleasure as well.

Before taking her for the massage, I got her cup and iPad along with my own things with the thought of going to Barnes & Noble (B&N) afterwards. After she was finished with her massage, I asked if she would like to go back home or to B&N. With no hesitation, she said B&N. We were there until just after 5:30 when we left for dinner. For some reason, she seems to be able to stay there longer than at Panera. I don’t know whether that is because we go to Panera more or if there is something about B&N that she likes. I do know that she seemed perfectly happy for over two hours. She never got up. I asked if she was ready for dinner several times. Each time she said, “Let me finish this one.” It is amazing how much time she spends on jigsaw puzzles. For quite a few months she has experienced frustration because she hits something that takes her to the store to buy more puzzles. When that happens, I have to get her out. More recently, she has been doing better. I am glad about that because this is her primary activity now. I hope that as the weather improves, she will spend more time outside.

The interesting thing to me is that she seems to like being at home only when she can work outside and in the evening after we return from dinner. It appears that she feels she spends too much time trapped in the house and needs to get away. Whatever the reason, I will continue to arrange things for us outside the house.