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Feelings of Being Unappreciated

Yesterday as I was leaving Mountain Valley, I had a brief conversation with the woman who owns the dress shop where Kate buys a lot of her clothes. Her husband is there on rehab and will be going home next week. She had mixed feelings about his coming home related to the responsibility of caring for him. She noted that he has so many needs and is always asking her to do things for him. I shared a similar feeling about Dad. I do so many individual things while I am with him that I wonder how he gets along when I am not there.

That led me to think about taking care of Kate after her colon surgery as well as her foot surgery. It seemed like she was always asking for something. Of course, she was. After all, we go about our daily activities doing a lot of things for ourselves. When we are handicapped, we don’t want to give up everything. Naturally, some of the things we want are not frills – e.g., medications, especially those for pain.

My point is that it can be hard for the caregiver even if the patient is considerate. They have many needs that require attention. This also made me think of something yesterday. When I got home after Kate’s PEO meeting, she was not home and all of the dishes were on the kitchen counter and the island. Plates had been rinsed but serving dishes were mostly sitting with the remains of food. I cleaned up almost all before Kate got home and took care of the balance after we returned from a reception at the foundation. She never said a word. It was as though she never noticed that it was there to begin with. I didn’t fret over this, but I did have an immediate feeling of not being appreciated. On balance, however, she is quite good about making me feel appreciated, but there are lots of things she doesn’t notice because of her AD. This was one example and there is no good reason to get hot and bothered over such things.

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Everyday Surprises

Today Kate is hosting her PEO chapter and is also doing the program. At last month’s meeting something came up about the September meeting. It wasn’t until then that Kate remembered that she was hosting it and that she had the program. A couple of weeks ago she was working on her program and felt good about her progress. Since then she has not worked on it. I think that is because she felt it was in pretty good order and wouldn’t have much to do to complete it. On Monday or Tuesday of this week I mentioned that it would be nice if we cut the grass and cleaned up the yard. Kate didn’t respond. Then yesterday while we were at lunch I mentioned her PEO meeting for today. She said, “It’s tomorrow?” She had completely forgotten. This is another example of my need to remind her of her commitments, appointments, etc. The trick is that she seems to be getting more sensitive about my playing a larger role and is quick to show me that she can remember, that she can be on time, etc.

I got the coffee ready for her and wrote a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. I wrote another note telling her that the half ‘n half was on the top shelf of the refrigerator in the kitchen. I went to Panera and bought bagels and cream cheese. I put the bagels on the island where she couldn’t miss them and attached another note saying that the cream cheese was in the refrigerator in the laundry room. Before leaving I showed her the notes and reviewed what she was to do and where to find things. Not too long after I got to the office I received a call. She asked in a semi-panicked tone, “What about the coffee?” I told her there was a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. She then asked me where the coffee maker was. The surprising thing is that the coffee maker is always in the same place on the kitchen counter right under the cabinet that holds our everyday pottery. In other words, she opens that cabinet every day for something. These things don’t bother me at all except that I feel sad for 2 reasons: 1) It is another reminder of the progression of her illness and that things are getting worse and 2) I feel sad for her because I know she must experience an immense amount of frustration over such things.

Something that bothers me in a different way is what I consider her misplaced emphasis on priorities especially when time is short. First, on occasions when we are going somewhere together, I get frustrated when she spends time doing things that don’t need to be done at that time. Second, because getting ready for anything is difficult for her, I have to play a greater role in seeing that she is ready. I find myself getting irritated even though I know that she can’t help it.

This morning is a case in point. When it was 45 minutes before she was having company, she was outside piddling in the yard. When I went out to get her, she said, “I know. I am coming in.” This is an everyday occurrence. As I have mentioned several times, I think she gravitates to the yard because it is the one thing that she can do that doesn’t involve her feeling that she is doing something that is wrong or having me tell her she has done something wrong. I am sure that if a master gardener were watching her, he/she would point out many things that she is doing wrong or inefficiently, but this is one thing she can do without that kind of experience.

Because she can spend hours in the yard even when it is hot, I need to come home early if we are going someplace at a particular time. She isn’t able to answer the phone when she is outside; so I need to be home early enough for her to start getting ready. I cannot count on her remembering.

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What’s going on now.

Much of my observations have focused on specific instances of the progression of Kate’s AD or specific examples of her symptoms. Today I would l like to give a general appraisal of how things are going with Dad, Kate, and me. First, a comment on Dad.

After Dad returned from his most recent trip to the hospital with bleeding ulcers, he was incredibly lethargic for a few days. I’m not sure, but this may have been a result of the anesthesia he received before they performed the endoscopy that enabled them to diagnose his problem. Even now some 2 weeks later, he is not back to normal. The major symptom is that he is harder than usual to arouse when I visit him. Yesterday, he asked me if I could talk with the doctor to ask if it would be all right for him to sleep more because he didn’t want to get up. He thought he might be better off to sleep more. I talked with him about this at dinner. I told him he needed to get up it was good for him to get up and to eat and that he would deteriorate if he just stayed in bed all the time. He seemed to understand this and did not object.

Although he has for a long time had good days and bad days, it seems like he has greater swings recently. Some days I come home very upbeat over his condition. Other days I am low.

I am also noting more memory issues. He even forgets his speech therapist’s name sometimes, and she is a very special person to him. In fact, about 10 days ago, he remembered her husband’s name but couldn’t remember hers. He also slips on the name of his writing teacher as well as two members of his Sunday school class. He apparently had a dream recently about visiting the home of one of them. He seems to recall it was a very large house and that she has something to do with Mountain Valley. I think he may have been trying to convey that she was doing the laundry for Mountain Valley. Although he still talks about his upcoming birthday, he doesn’t seem to be as energized about it and is not making as many suggestions about things he wants done. This does not mean he has stopped completely.  The other day he told Larry that he wants to have name tags on each of the roses he distributes to the ladies. He also continues to surprise me by asking about my staff and Gordon Seacrest. He clearly has not withdrawn from the world around him.

Turning to Kate, I would have to say that she continues to get along pretty well even though she experiences some discouragement over her condition. I have always noted that the person (in this case, Kate) with AD knows far more than most people believe and experiences frustrations related to her condition. I am beginning to notice that she has less concern about some things that would have been an issue before. For as much as the past year or so, I have noticed that she does not notice spots on her clothing that would have bothered her before. When she rinses dishes, she does a horrible job. She seems less concerned about how she dresses. The other day we went out for lunch and she didn’t wear a bra. That’s something that she would never have done before.

She finds it even harder to accomplish various tasks. Last night while she was working on a Word file in preparation for a program she is doing for PEO next week, she was frustrated and said, “I just can’t do anything anymore.” This type of frustration is what, I believe, leads her to spend so much time puttering in the yard. She has been out there for almost 2 hours already this morning. Even though we are having hot weather, she goes out periodically during the day. She gets so hot and dirty that she comes in and takes a shower. Sometimes she takes as many as 3 showers a day though his is not typical. She as commented to me that she doesn’t know what she does when she is out there which is to say that she doesn’t believe she can recite a long list of things she has accomplished. Perhaps that is why I feel she just finds it something she is able to do without making any mistakes or having someone telling her she is not doing it the right way.

So how am I doing? Like Kate, I am doing well overall; however, I am having my own frustrations. For example, I have to be more attentive to her schedule and provide help in making sure she doesn’t miss appointments or commitments she has made. As I left Dad yesterday afternoon, I called her to remind her that she was going to meet me for supper at the church. Not surprisingly, she had forgotten even though we had talked about it, and I had reminded her before leaving to see Dad. She can completely forget things quickly.

This can be a particular problem in conversation. If we are talking about someone and a moment passes and I say, “I told him . . .” She will either look confused or ask, “Who?” Increasingly I feel the need to remind her of things, but she sometimes resents this.

The biggest issue for me is the responsibility of taking care of my own affairs while increasingly being responsible for her and for Dad’s. When I go to see Dad, I frequently forget some things – for example, take him bananas but forget to leave them, get him up and take him to the dining room but forget his box of Kleenex that he likes to have with him at all times. I have mentioned before that Kate committed to preparing a new edition of our neighborhood directory. If left to her, it will never get done. What has been done so far is what I have done or done with her. She doesn’t even mention working on it now. This morning I spent an hour entering or checking information. I am going to take a little at a time and get it done on my own. She has also said she would do a city-wide directory for PEO. I put all of the information she will need to do it in a single place. I fear now that she has misplaced it. This kind of thing goes on and on, and, of course, this is only the beginning.

One final comment. I am beginning to wonder if her medications are not actually helping. I say that because she is better now than I might have predicted 3 years ago. Perhaps we will have more good times ahead than I originally thought. That would be nice. At the moment, however, I am still looking at the first 6-8 months of 2014 as possibly the last great traveling moments for us. We leave for New Zealand on Feb. 11. We will also have another trip to Niagara-on-the-Lake and Chautauqua in Late June. We are also going to take Heather to New York during the summer. In addition, we will have the other grandchildren for a visit. I don’t know what our situation will be after that.

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Knowing is better than not knowing.

Although Kate clearly wanted to know if she had Alzheimer’s, there have been times when each of us wondered which is better. I am now confident it is better to know. It has given us a higher quality of life together than we would have had otherwise. If we hadn’t found out, we would have continued on our merry way as we had been doing before knowing. This is strange because we both (especially Kate) felt for a long time that she had AD. But knowing took away the doubt and made us stop and take advantage of the good time we have together. In every respect, the days since diagnosis have been the best of our marriage. Even as I say this I know that the future will bring on the worst times. At least we will have made good use of our time since Jan. 21, 2011.

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Forgetting People

Last night we went out for pizza. As we entered the restaurant, we saw two former members of our church. They had been good friends of Kate’s when she was the church librarian. She didn’t remember either of them. When we see people we haven’t seen in a while, I am careful to let Kate know quickly so they won’t notice that she doesn’t remember them. I did so this time, and I am sure they didn’t sense any lack of recognition. This is the kind of thing, however, that I can see catching up with her at some point.

In our conversations, she often mentions that she can’t even picture certain people that she has known pretty well in the past.

I also continue to observe her forgetting things that have occurred in the very recent past. Yesterday, for example, I picked her up at Bruegger’s where she was talking with Shirley Hazel. We talked about the two couples getting together for dinner and a movie. Last evening before dinner, she told me that she and Shirley had discussed this. She didn’t realize at all that I was with her and was aware of the discussion. Of course, this could happen to anyone. It is just that this is a normal occurrence these days.

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Another Example

An hour ago I went outside to tell remind Kate that she needs to meet a grant recipient and Shirley Hazel at 11:45 and that we could get make a trip to Lowe’s before that. I suggested we leave at 11:00. I came inside and I thought she had as well. Ten minutes ago I was going to check on her and saw her coming in from outside. She was in her pajamas and had continued to work on pruning her plants. She had simply let time slip by which is very common.

The surprising thing is that I know she wanted to go to Lowe’s at 10:00. Now we won’t have time to go at all before her meeting.

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Good times

Last night we had dinner at Emilia. It was a nice evening. We had a good meal, and a man we know from church played the piano. The night before I had reviewed our itinerary and lodging for our trip to New Zealand in February. We both got excited about this trip. I finally decided to travel on our own and travel by car within the country. I think this will work out much better than having to meet a schedule for a group as we would have done with OAT.

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The lost is found.

Kate found her driver’s license and ATM card this morning. I am sure she was relieved. I know that every time something like this happens, she suffers. After church today, we walked to our cars. She asked if I were taking her to my car first – that her car was in front of the church. I told her I thought I had seen her car in back near my car. She told me it must have been a similar car. When we got near the car, she still thought it belongs to someone else and started to walk away. I looked closer and saw that it was hers. She was surprised and hadn’t remembered parking in this spot at all.

As we drove away from the church, I noticed that she turned right instead of left. I followed her to see where she was going. The road took her back to the church parking lot. She then went the correct way home. When we got home, she looked at me without saying anything. I know she was saying without words, “I am getting worse. I am discouraged.” I gave her a hug. We embraced. Neither of us said anything; however, we each understood the other.

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Driver’s License and ATM Card Again

I just got home from the hospital visiting Dad. The first thing Kate said was that she couldn’t find her driver’s license or ATM card. Of course, we may find them. She said, “I don’t know, Richard.” I took that as an expression of personal frustration over her decline. We’re going to have to figure out a way to keep them in a single location. I thought we had done that this time by putting them in the console of her car between the driver’s and passenger’s seat.

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Lots of Caregiving

I am with Dad in the hospital. I received a call from Mountain Valley at 6:00 am Friday morning saying they had discovered rectal bleeding and recommended that he go to the hospital. This morning they performed an endoscopy and discovered that he has 3 ulcers in his upper intestine. That’s good news as it can be treated with Nexium which they are doing intravenously now. He’ll probably go back to Mountain Valley on Monday.

This is the second time in a week that we have taken him to the emergency room. It is on these occasions that one becomes keenly aware of the multitude of people Who are here on a daily basis. Yesterday as I took a break to call Larry, a woman in the parking lot called to me. She told me her daughter was very sick and needed a wheel chair. I went inside, got a wheel chair, went to her car and brought her in. I noticed the mother was struggling from some type of foot problem and suggested she might need a wheel chair as well. After leaving the daughter with an attendant at the check-in desk, I took another wheel chair out to the mother and brought her in.

Two friends from Littleton, CO, visited us for 2 nights this week. It was good to see them. Kate enjoyed their company and was unusually talkative. She gives a fair amount of misinformation, but it doesn’t usually matter as the listeners don’t know and won’t have occasion to discover the mistakes.

She continues to spend time in the yard which I have noted on several occasions is her therapy. The plants don’t complain or give suggestions and neither does anyone else. For me it does occasionally present a problem. That is usually when we are scheduled to go someplace, and she gets caught up in the yard rather than getting ready. That occurred this week as I was focusing on getting the house ready for guests. She had brought in cuttings from the yard and put them in a small vase around the sink in the laundry room. While it was a nice touch, she didn’t notice that there was dirt all around the sink. If I hadn’t specifically suggested cleaning the area, she would probably not have noticed.

Recently Kate has become more sensitive about being corrected. I am having to learn not to say anything that might make her feel bad. One of my bad habits is asking, “Do you remember . . .” Because there is less and less she does remember, this is not a good thing to say.