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Good Things

Our daughter and son were in town this past weekend to celebrate Kate’s 80th birthday. It’s always nice to have them, but this weekend was very special. Most importantly, Kate enjoyed herself. Saturday, the day of her celebration, she was out of bed all afternoon and through dinner. She joined in with the singing of Happy Birthday and gobbled up her cake and ice cream.

Beyond that Jesse, Kevin, and I had more opportunity to talk among ourselves than we usually do. That gave me a chance to update them on our situation as well as for them to see for themselves how we are doing. I consider them as partners in our lives as seniors. Since we are moving to a continuing care retirement community in April, the two of them looked around the house for things they might like to have. All-in-all it was one of the best family times we’ve ever had, and I think they felt the same way.

Jesse left on Sunday, but Kevin didn’t fly out until Monday afternoon. That gave the two of us a chance to have lunch together before dropping him off at the airport. He has been coming for a long weekend two or three times a year since 2014, and this was the first time we have had a meal together without Kate. It was another good opportunity for us to have a leisurely chat.

Starting with the weekend and extending through Wednesday, Kate had a string of six consecutive good days. That doesn’t mean we were able to get her out of bed each day. It means that she enjoyed herself more than usual. We’re experimenting with a new routine. We don’t try to get her out of bed too soon after she wakes up and has her breakfast/lunch. We have found that she is more likely to express a desire to get up later in the day. We’re trying to take advantage of that inclination, and it seems to be working. If she isn’t interested, we accept that and wait until another day.

Once again, I like to emphasize that even at this late stage of Kate’s Alzheimer’s, she and I are still having good times together.

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An Anniversary I Won’t Forget

Ten years ago today, Kate was diagnosed with Alzheimer’s. That led to the most significant life change we’ve ever experienced. That night I made the first entry in the journal that became this blog . I have posted it below with a few of my present thoughts about “Living with Alzheimer’s.”

JANUARY 21, 2011 BY RICHARD CREIGHTON

Getting the Diagnosis

Today Kate and I met with Dr. Reasoner to get the results of Kate’s PET scan. She had gone in for the scan a couple of weeks earlier following a routine appointment with Dr. Reasoner. I went with her for that appointment to give my own impression of Kate’s lapses of memory and to hear what Dr. Reasoner had to say.

Dr. Reasoner suggested that she have a PET scan and a behavioral evaluation by a neurological psychologist. Kate had the scan about 2 weeks ago. On Wednesday of this week, January 19, she had an initial visit with the psychologist. Kate is scheduled to have her evaluation on Wednesday, February 16, at 12:30. She has been told this will take as long as 5-6 hours.

Kate and I have not talked much about the PET scan and the potential results. We both knew what was possible, and I think neither of us wanted to drag ourselves down in worry of the worst news. For the past few days I have had some trouble sleeping and have found myself thinking about how she and I would react if the test came back positive. I am sure that every cancer patient would understand this reaction.

As we went to the appointment, I kept telling myself that we might get good news that the test was negative. That was not the case. Dr. Reasoner presented the results matter-of-factly but not coldly. She said the test did show signs of “early onset Alzheimer’s.” She went on to explain what that meant (the tangles in the brain) and how it can be addressed (initially with Aricept and after a few weeks another drug that has, in the past, been used at later stages of the disease).

Dr. Reasoner told her the average life expectancy for someone who is diagnosed early (the starting part was not and, I suspect, cannot be known) is about 12 years but that she could live much longer. She also gave a few examples of people she had known whose quality of life was good even with the memory loss. She is especially interested in Kate’s behavioral evaluation. That evaluation will determine whether the disease has affected other things than simple memory.

Kate handled the news with a good bit of control and later in our meeting, she said that in some ways, she actually felt relieved to know what was causing her memory problems. Her greatest concern is having to depend on family or professional help to take care of her personal care, something that she feels could be required for a long time should she live as long as her parents.

I tried not to give in to the emotion I felt on receiving the news. At one point as we were discussing Kate’s care in the future, I reached for her hand and tried to assure her but choked up. Dr. Reasoner gave me Kleenex to wipe my eyes.

After leaving Dr. Reasoner’s office, we went to Casa Bella, a restaurant that holds a special place in our hearts. We were introduced to it in the early 70s by one of Kate’s best friends. In the last 10-15 years, however, we have eaten there more frequently. We came there after both of our dogs died. She got her veal piccata and amaretto cheesecake that she loves so much.

We talked briefly about having to decide when to tell our children and friends. We both agreed that now is not the time. We know that once other people know they can’t help but treat you differently, and she doesn’t want that. We are just going to take it a day at a time right now and trust that we will know when we should let it be known. This is going to be very hard for both of us as there are people we might look to for support, but there will be a time for that down the road, hopefully a long time down the road.

At that time, I had no idea of what the future held. We were just determined to make the most of whatever time remained to us. I’m grateful that we’ve been able to do just that. We’ve not only enjoyed life but each other as well. Kate can only live moment-to-moment now, and I mean that literally, but I continue to focus on that initial goal. It has served us well in the past, and I am optimistic that it will do so in the future.

I am mindful that we haven’t done it alone. I’m grateful to a host of people who have lightened our load in numerous ways. They include our healthcare professionals, especially her doctors and their associates, but they extend far beyond them. I’m thinking of family, friends and even strangers who have boosted our spirits so many times in so many ways. I am thankful to those of you who are readers of this blog. You, along with my Twitter friends and fellow AlzAuthors, have given me a focus beyond that of being a caregiver. You have played a key role in keeping me going. I consider all of you as members of my “Caregiver Support Team,” and I thank you.

I also recognize there are many others “Living with Alzheimer’s” who haven’t been as fortunate as we have. Some of you reading this post may be among them. My heart goes out to you. My wish is that you will find your own ways to experience moments of peace and joy in the midst of the inevitable challenges that face all of us who travel this road.

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Update on Kate’s Recovery from COVID

It’s been nine weeks since Kate and I experienced the first signs of COVID and almost eight weeks since she returned home from the hospital. Kate’s recovery has been gradual, but steady. The biggest breakthrough was getting her out of bed. In my last post, I reported that we had been able to get her up three days in a row. We added another three days to make it a total of six straight days.

Things are going well. Kate’s transfer from her bed to the wheelchair to the toilet and back to the wheelchair is easier than before. With one exception, she has enjoyed spending the day in her recliner in the family room.

We haven’t, however, been able to fully conquer her fear as we make the transfers. She is also frightened when we push her in the wheelchair. We have to move very slowly and watch her hands and arms closely as we go through doorways or past anything that she can grab. She holds tightly to anything within her reach. She also attempts to stop the chair’s movement with her feet. I’ve found it easier if we slowly pull her backwards.

Despite our best efforts, the only rewarding aspect for Kate is relaxing in her recliner. It does avoid changing her in bed, but the transfers are almost as unpleasant for her. That has caused me to think seriously about the cost/benefit ratio of forcing her to get out of bed. It is better for her caregivers and me, but is it a sufficient benefit to her?

On her 80th birthday, I really wanted her up. She wasn’t as cheerful as on other mornings and not eager to get out of bed. With my permission, the physical therapist and the caregiver got her up anyway. As it turned out, she didn’t appear to enjoy the afternoon as much as she has on previous days.

The next day the physical therapist came again. Kate was tired. We put our heads together and decided to be satisfied with the success we had achieved in the preceding days. We let her rest.

Saturday and Sunday we got her up again. It went pretty well Saturday. Sunday was another thing. She really didn’t want to get up, but we went ahead. She was angry with both of us, not just the caregiver. I left for lunch shortly after we had put her in the recliner. She wasn’t speaking to either of us. It is not unusual for her to need as much as an hour or more to recover from changing or just getting her out of bed, but her bitterness seemed more severe this time. Fortunately, she had recovered by the time I returned home, and we had our usual good evening together.

I felt bad about pushing her too hard and would like to avoid creating the same result again. I discussed this with the caregiver who was here yesterday. We decided to give her a break and get her up only if she seemed willing. As she has done on a few other occasions, she expressed an interest at one point but changed her mind when it came down to doing it. We accepted that. She had a good day and was much easier to change in bed. I think it was good for her to have a break. She’s making progress. We’ll get her up another day.

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More Victories

Numerous times during Kate’s recovery I have said that she is making progress “though gradually” or “slower than I would like.” That doesn’t mean that we don’t have moments or days with giant steps forward. I reported on one of those almost two weeks ago when I described the first time we were able to get her out of bed, to the bathroom, and to the table for dinner. That was a major victory, and it occurred as a result of her own desire to get up.

I think all of us (home health, the daily caregivers, and I) felt that was a confirmation that we were doing the right thing by not having forced her. We had been acting on the knowledge that her hospitalization had traumatized her so much that we didn’t want to add further trauma to her life. I believe we made the right decision.

A number of times since then, she has said she wanted to get up, but she got cold feet when we tried to help her. Three times she wanted to get out of bed after the caregivers had gone. I was relieved that she backed out because I wasn’t sure I would be able to get her back in bed by myself.

At the same time, she was beginning to adapt to our changing her. That was good because that is the most difficult issue we have faced, but it was still an unpleasant experience. Even the caregivers recognized it would be almost impossible for them to do it without my help. We began to believe her life and ours would be improved if we could just get her out of bed.

Late last week, I decided we should be more assertive with her. I may have been motivated by a couple of experiences with Kate’s physical therapist. I had talked with her about the importance of getting her up. She said she could get Kate up if I would give her permission to physically pull her up against her will. I told her I thought we should try. With the two of us pulling her, we helped her sit up on the side of the bed. She protested verbally and physically, but the process occurred quickly. She settled down almost as fast. We repeated this when she was here last week.

The caregiver who was on duty the first time we got her out of bed was on duty Saturday. Soon after she arrived, we talked about another attempt. This time I told her I wanted us to be more assertive, that I felt getting her out of bed wouldn’t be any more traumatic than changing her in bed.

Kate’s best time of the day is usually later in the day. She was asleep until noon, so we decided to give her time to have lunch and then see if we could get her into her wheelchair. For several days, I had talked with Kate about getting her up. She felt that would be all right.  Of course, that was easy to say because there was no immediate threat. We took that same approach Saturday, and she expressed interest. I can’t say it was easy or that she didn’t protest, but we were able to pull her to a sitting position on the side of the bed and then to the wheelchair. From there we went to the bathroom and helped her on to the toilet. She was frightened and fought when we lifted her from the wheelchair to the toilet and back, but overall it went well. She spent the rest of the day in her recliner in the family room. When it was time for dinner, we took her to the table where we ate dinner together for the first time in weeks. It was a very good day.

Yesterday, the same caregiver was here. Kate was awake at 11:00 and had her morning meds and some yogurt before the caregiver arrived. She was also in a very good mood that lasted the entire day. We got her up, to the bathroom, to her recliner, and later to the table for dinner. It was a day in which she was filled with delusions. She was very talkative but also very happy. The caregiver and I were also happy.

The icing on the cake occurred today when a different caregiver was here. I told her about the weekend. We decided to try again and had another success. Lunch was especially fun. It was the first time she had come to the table for lunch since before she contracted the virus. That’s six or seven weeks. Our Monday/Wednesday caregiver is from France and enjoys making French Toast and French Omelets. Kate had a little of both today. She fed herself and even told the caregiver the meal was “wonderful.” Later in the meal, I asked if she liked it. She gave me a very loud and enthusiastic “Yes!”

I will say that it was a bit more difficult getting her out of bed today. I don’t believe we gave her enough time to thoroughly wake up, but we succeeded anyway.

Looking back, I feel that we did the right thing earlier by not forcing her out of bed. She was too fragile from her hospital experience. Gradually she was improving. It was clear there were times she wanted to get up but was too frightened to do so. I feel she reached the point at which she needed to be pushed to save her from an experience that was more traumatizing. I am glad we decided to change our approach. She has enjoyed being up. As I close this post, I can hear her happily talking with her caregiver.

She has been up three days in a row. That makes me believe it should get easier in the future. I can’t tell you how good it is to see this leap forward.

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A Major Victory

Today was the 32nd consecutive day that Kate has not gotten out of bed. That streak ended around 4:00 this afternoon. This victory came after at least three weeks of encouragement by her physical therapist, her caregivers, and me.

It was only the past ten days when Kate herself expressed any interest at all. Two of those times she wanted to go to the bathroom after  the caregivers left for the day. I was hesitant to attempt it but consented. When I tried to help her, however, she backed out. Within the past 5-6 days while caregivers were here, she said she wanted to get up. Each time the caregiver and I offered to help and spent as long as thirty minutes encouraging her. Ultimately, she was too scared to try it.

Yesterday’s caregiver and I decided that we were going to try again tomorrow, and we will. Today, however, Kate told her caregiver that she would like to get up. I walked into the room right after and join the caregiver in offering to help her. As it was with our previous effort, it took Kate a little time, perhaps 15-20 minutes, to go through with it. Even when she first tried to sit up the process didn’t go quickly. At one point, she rested at least five minutes with her feet and calves extended over the edge of the bed. The caregiver and I were like a crowd at a sports event saying she could do it. We tried never to push her. Instead, we asked her to tell us when she was ready, and we would help. Finally, after 30 minutes, she was on her feet. We supported her. I know she would have fallen if we hadn’t. We helped her into a wheelchair. Then we asked if she would like to go to the bathroom. She said she did. We maneuvered her onto the toilet and were successful.

We were approaching time for dinner, and the caregiver and I decided to take her to the kitchen table to eat. It brought back memories of the past as she enjoyed looking out the kitchen window to the neighborhood. She ate a good dinner. Afterwards, we took her back to bed. It was just as difficult getting her into bed as it was getting her out, and she was tired. Since then she has been resting quietly.

Apart from my own excitement at seeing Kate sitting up for more than an hour, the caregiver was also excited. It was a mutual victory for the two of us, but I must add that it was a tremendous victory for Kate. It was her will along with our encouragement and assistance that did it. We couldn’t have done it without her determination .

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A Glass Half-Full or Half-Empty? Reflecting on Our Present Relationship

In a few days, it will have been six weeks since I watched Kate taken by ambulance to the hospital. The last words I heard her utter were, “Help! Someone, help!” That was a dark moment for me. I thought to myself, “I hope this is not the last image I have of her.”

Much (most?) of the time before getting the virus she didn’t remember my name or that I am her husband. With few exceptions, however, she has always recognized me as someone familiar and a person she likes and trusts. I couldn’t help wondering if she would recognize me at all when she came home. I feared she wouldn’t.

That fear ceased quickly when she immediately broke out in a big smile when she saw me. She was much better than I expected, and I was relieved. This shift in my emotions reminded me of the countless times I have responded positively or negatively to how Kate feels. As I have said before, when Kate is happy, I am happy.

It’s been over four weeks since she returned home, and she is still in bed, but she is making progress. Not everything is the way I would like it to be, but I tend to be a “glass is half-full” kind of person. As Kate has declined the past few years, I have tended to focus on our “Happy Moments.” That has been especially true since her return from the hospital.

One aspect of her recovery that I have enjoyed involves her feelings for me. She has been more psychologically dependent on me than ever before. She doesn’t express her feelings a lot in what she says, but she likes to hold my hand and squeeze it or rub it when we are in bed at night. She also depends on me for security each time the caregiver changes her.

She still retains some of her rational ability that I had thought was virtually gone. When I tell her the caregiver needs to change her, I immediately see the apprehension on her face. It is clear that she has an idea, though perhaps vague, of what is in store even though the caregivers and I attempt to make the process as non-threatening as possible. I get in bed beside her and very softly and slowly explain that the caregiver will be very gentle and that I will be “right here with you.” I also tell her that we will need to help the caregiver and tell her to hold my hands and that she can squeeze them as hard as she wants, and she does.

Gradually, she is becoming more relaxed. A few times, she has been totally passive except for the moments we have to turn her. She resists, but we turn her quickly. Then she is fine. If I put my arms around her and ask her to hug me, she seems to feel more secure and holds me tightly. I take this as another sign of the security she feels with me.

Kate isn’t the only one who dislikes this experience. The caregivers and I feel the same way. If she can learn to accept this more easily, we will have eliminated the only serious negatives that occur in a day. Of course, the best thing would be for her to agree to get up from the bed. Then we might be able to take her to the toilet. That would really simplify our lives, and we are working on that. One of her caregivers and I got her to sit up on the side of the bed once last week, something the physical therapist was also able to do that week. Slowly, but surely, we may succeed in getting her on her feet.

The worst part of her COVID experience occurred because she is in the last stage of her Alzheimer’s. She has never been able to grasp what has been going on since being taken by ambulance to the hospital. Even her return home has been quite different that it was when she left. Between the two agencies providing caregivers and the Home Health staff, I suspect it is impossible for her to recognize any of them. The result is reflected in her feelings toward me. I am her primary source of comfort and security.

Increasingly, the caregivers are getting to see her kind nature. I find it touching that she often thanks the caregiver after changing her even though she protests vigorously both physically and verbally. On a couple of occasions when we were embraced while the caregiver completed her work, she spoke tearfully in my ear and said, “I’m sorry. I’m sorry.” I find that heartbreaking.

On Saturday, the caregiver was ready to turn her from her side to her back. She stopped when she saw that Kate had nestled her head on my shoulder and stroked my arm. That same night after the caregiver had left, she did the same thing as we were watching The Wizard of Oz.

These are not only signs of her recovery, but they are also an indication of her affection for me. She has always been appreciative of my care, but the events of the past few weeks have elevated that feeling significantly. That strengthens my determination to do the best I can to make her secure and happy.

I am optimistic that she will continue to make progress. In the meantime, I am sustained by the strength of our relationship and more than grateful to have a glass that is half-full. I fully recognize that at this stage of her Alzheimer’s, my glass will never be completely full.

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Delusions, COVID, and Recovery

Like many others with dementia, Kate has experienced delusions. They became more frequent over the past year. With the arrival of the pandemic and sheltering, they increased significantly. I attribute this to the fact that her life was less stimulating. I tried to compensate by entertaining her more at home, but we were still more sedentary than before. As a result, she started taking breaks to rest. Upon waking, she often experienced delusions. By the time she and I had our personal experience with COVID, they occurred during a significant portion of each day.

Once she had the virus, however, they disappeared. Overall, she was simply weak and didn’t talk much. It’s been four weeks since she came home from the hospital. She was gradually recovering but still wasn’t having any delusions. That changed last week when she experienced her first one since contracting the virus. They have become more common since. Night before last, she spent about forty-five minutes talking to me about a delusion that involved a group of people who were with us. As happened so much in the past, she thought we were in a hotel or lodge and had plans to do something with the others the next day.

This has caused me to have an unusual feeling. I had always interpreted the delusions as a sign of her decline from Alzheimer’s. Suddenly, I found myself viewing them as a sign of her recovery, not to her pre-Alzheimer’s self but to the way she was before getting COVID. It might seem strange, but I am happy to see this change. It is far better than the way she had been under the influence of the emotional and and psychological impact of the disease.

Her delusions represent signs that the effects of COVID are diminishing. She is also talking more and expressing more signs of happiness. These are encouraging signs. I just wish her recovery were faster.

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A Special Day for Kate and Me

During this season of the year, people’s thoughts are on the traditional holiday celebrations. That’s also true for Kate and me; however, December 19th is also a day we celebrate. On this day 59 years ago, we had our first date. We attended a performance of Handel’s Messiah on the campus of TCU where we were students. This began a lifetime attending many musical and theatrical performances together.

Despite remembering the date, I only recall a few other things about that night. One of those is picking her up at a neighbor’s house where she and her family were having dinner with very close friends who had known Kate since birth and were like an aunt and uncle to her.

Another was that sometime during the evening, Kate said her father wanted her to ask me a question. He wanted to know if I knew a doctor, then living in West Palm Beach, who had been a groomsman in her parents’ wedding. She was surprised when I said that I had gone to high school with two of his children, was in Key Club with one of them, and that he was my dad’s orthopedist. We were off to a good start.

We had an interesting courtship. In January, I took a job as an ambulance driver with a funeral home. That job played an integral role as our relationship became more serious. My responsibilities also included assisting with funerals. Sometimes I found a few stray flowers. When I did, I took the opportunity to drive by the campus and put a flower or two in the front seat of her car. Other times I was asked to drive to another city to bring back the body of someone who was to be buried in Fort Worth. When I did that, the funeral home would pick my meal expenses. I usually took Kate with me. I was pinching pennies at the time, and that was a good way to have a date without its costing me. (The owner of the funeral home knew I took Kate with me, and he picked up her meals as well.)

I had intended to return to Florida after graduation; however, by late March, it was clear that we were getting serious. I decided to stay in Texas. Although I didn’t realize it at the time, Kate’s mother was also noticing the signs of our budding romance. In 2013, after my dad’s death, my brother found about 100 letters I had written to my parents during my days at TCU. Among them was a letter from Kate’s mother to mine. It included the following paragraph.

I wish you could be experiencing with us all the fun and excitement of their friendship. Yesterday was the 19th and on Dec. 19th, Richard had his first date with Kate to attend the “Messiah.” So they celebrated a six-month dating anniversary with 6 lovely red roses. They have such wonderful times, and it keeps us young just watching them.

Appropriately, we became engaged on the first anniversary of our first date. Since then, December 19 has been special for us. Kate has long forgotten that, but I will always remember. Happy Anniversary, Kate. Because of you “I have been changed for good.”

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Making Progress, But Not Out of the Woods

I am encouraged by the progress that Kate has made in the past week. One of the areas in which she has improved significantly is eating. She is now eating more “regular” meals and in greater quantities than she did the two weeks before. We went from one scrambled egg to two in addition to yogurt in the morning (actually close to noon). We had been relying heavily on soups for lunch and dinner. Now, we are getting her the same takeout meals that I get, and she is enjoying every bite.

Just as important to her caregivers and me is that she is protesting much less when changed. That doesn’t mean she likes it, far from it. She still tries to push us away from her, but her screaming and yelling has almost disappeared. It only comes at the moment we move her. For example, once moved to her side, she is quiet. It still helps that I am almost always with her. I continue to hold her hands to which she holds tightly. Two or three times I have put my arm around her and asked her to give me a hug while the caregiver pushes her over with one hand on her thigh and the other in the middle of her back. That way Kate turns very easily and we continue hugging each other until the caregiver finishes.

I must admit to a touch of sadness when I see her submit to us like this. She doesn’t like what is being done to her but has just given in. I wouldn’t like it either. It doesn’t take a long time, perhaps 10-15 minutes. Yesterday, however, the caregiver bathed her and also changed the sheets. The whole process took almost an hour. I think Kate and the caregiver may have handled it better than I did.

We are making the most of the Christmas season. As I did last year, I called on the woman who attends to our shrubbery to decorate the inside of the house using the decorations Kate has collected over the years. In addition, we have tuned in to YouTube much more than we have before. Yesterday, for example, we played Christmas music on the TV in our bedroom from noon until 8:00 last night. One of our caregivers also found a more beautiful fireplace video that shows a large portion of a nicely decorated seating area of a lodge with a large tree and a grand fireplace. I don’t know that Kate likes it any better than the one I had found before, but I do.

Our daughter, Jesse, was in town Saturday through Tuesday morning. It was a good visit for all of us. She felt Kate was much better than she had expected. She also had time to get acquainted with the caregivers who were here during that time. She was impressed with them and felt I was in good hands.

We had an especially touching moment on Sunday night when she joined us as I read The Velveteen Rabbit. I don’t believe I had known the book is a favorite of Jesse’s. As I read, Kate took Jesse’s hand in her right hand and mine in her left. She squeezed them periodically as I read. She still doesn’t talk a lot, but she is feeling and expressing her emotions.

Over the past week (until last night), we’ve had other wonderful evenings after the caregiver leaves. Kate has been relaxed and enjoyed the Christmas music and an almost nightly reading of The Velveteen Rabbit. Two nights I also read Love You Forever.

Not everything has gone the way I would like, but I think that is natural for someone who has experienced the kind of trauma she faced. The most significant thing is that she still has not gotten out of bed. We have talked about it, and last week, the physical therapist was able to get her sitting up for a few seconds. She came again on Tuesday, and Kate was too lethargic. That wasn’t too long after the caregiver had changed her. It sometimes takes her a while to recover. She is coming today, and we will try again.

As I mentioned above, our nights have gone very well until last night. She was a little upset when we changed her, but she seemed cheerful afterward. After the caregiver left, we watched a band concert in San Antonio in which our youngest grandson was playing. Her mood changed during that time, and she didn’t talk to me the rest of the evening. I even read The Velveteen Rabbit and didn’t get much response at all. When I reached the end, I thanked her for letting me read it and that I like the story. I was hoping to get her to say the same thing, something she almost always does. This time, she was silent.

This morning around 9:30, I noticed that she was running her fingers through her hair and went to see if she was awake. She was, but she didn’t speak to me at all. I went back to the kitchen and mixed her morning meds with yogurt and took it to her. She took it easily. Then I brought her some mandarin oranges. She ate a good serving of those. I took the dish back to the kitchen, and when I returned, she was asleep and still is at 11:30. I hope when we wake her shortly that she will greet us with a smile.

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Always a Few Glitches. You have to Expect That.

I think a lot about how the world is and how we think about it. Right now, I am feeling very grateful. Kate has been home from the hospital just over a week, and the past two days she has shown significant signs of recovery. She may not return to exactly the way she was before COVID; however, if we can get her on her feet again, she might be pretty close. She was able to eat and drink successfully if not in the same quantities as before. She was also more cooperative when moved from her back to her side and when we changed her. I have found it helps a lot for me to lie beside her in bed and hold both of her hands while the caregiver takes care of these things. She seems to find some sense of security in that.

I’m also grateful for the numerous people who have sought to make my life less stressful during the past two weeks or so. These interactions have included Kate’s doctor’s office (a great geriatric practice), the hospital’s doctors and nurses, the Home Health agency personnel (especially their nurse and the physical therapist who did an initial assessment), our church, the friends and family who have called, written, or dropped off a meal, three different servers at restaurants we have frequented over the past few years (one of whom brought us a Thanksgiving dinner) as well as a host of Twitter friends who have expressed their concern and support including one who phoned me twice from New York and the AlzAuthors management team who in addition to their emails and Twitter messages of support gave me a gift certificate for Panera. My experiences with each one have reinforced something I already believed in – the basic goodness of people. I’m a rather self-confident and self-reliant person who has been lucky not to have needed such acts of kindness before now, and it has made quite an impression on me. I think I will be “paying it forward” for a long time to come.

In the midst of this largess of support, a few glitches have occurred. Both of the agencies who have had to work quickly to provide the help I had requested made mistakes on the schedule I had asked for – 8 hours a day starting at noon and ending at 8:00. One agency provided help between 1:00 and 7:00, the other between 11:00 and 7:00. In both instances, it wasn’t a misunderstanding. Those were the hours they were able to work out with their CNAs. I called one of them to say that on Monday I have a Rotary meeting at 12:30 and would like someone at noon. They corrected that right away. I talked with the other agency about their schedule of 11:00-7:00. I wasn’t rigid about the schedule I had requested and agreed to try theirs to see how it worked.

The next issue wasn’t anyone’s fault. The caregiver that had been coming on Monday and Wednesday and was my favorite declined to return after the first day because she has a back problem. She felt moving or changing Kate was going to be a problem. I was disappointed, but I could hardly blame her.

The day after I received that news I was eagerly awaiting a visit by the physical therapist at the Home Health agency who was to train me on the Hoyer lift. It turned out there had been a communication problem between the social worker at Kate’s doctor’s office and someone at the Home Health agency. The social worker at that same agency was scheduled to come to the house late that afternoon. She simply got tied up with other cases that day. I was assured that she would come late the next afternoon. It was 6:30 before she arrived, and she was here close to an hour and a half. It became obvious to me that she takes a lot of time learning about her clients’ situations and needs. She liked her, and I never said a word about her not coming the day before.

The following day I received a call from my other in-home care agency letting me know that the CNA who was to be with us that day was sick, and they hadn’t been able to find a replacement on such short notice. Before I could feel any disappointment, the person who called asked about the most important things I wanted to the caregiver to do that day. I told her it was changing Kate, getting her on her side, feeding her lunch, and changing her again late in the day and giving her dinner. She said she would come over and take care of those things for me. I thought that was going beyond the call of duty but accepted her offer. It turned out that although she works as the scheduler in the office, she is also a CNA and very skillfully handled her responsibilities with Kate. I was liked her too.

Given the stress I had been under, I might have been upset (frustrated? disturbed? angry?) by any one or a combination of these glitches, but I didn’t feel that way. I was simply too moved by how much everyone was working to make my life easier that I couldn’t be upset. There will always be bumps in the road. These won’t be the last ones.  It’s important to keep them in perspective even when we are stressed.