From Confusion to One of Our Tender Moments

This morning Kate didn’t know I was her husband. I am glad to say that had changed by this afternoon. I don’t mean all confusion was gone but that she at least called me by name and said something about our being married. As we drove to dinner at Chalupas, our favorite Mexican restaurant, she said, “Thank you for being so patient.” That began a conversation (“soliloquy” might be more accurate) that lasted for over an hour in the restaurant. There was much repetition as she said things like, “You are so patient with me.” “I like being with you. It’s not just that you take me places.” “I like the way you treat people.” “What would I do without you?” “You’re a natural caregiver.”

The tenderest moment came as we were finishing our meal. By this time I had reached across the table and taken her hand. She looked at me and said something complimentary. Then she started to say something else and stopped. She said, “No, that’s silly.” I pushed her to tell me. At first, she wasn’t going to say. Then she said, “Would you think of marrying me?” Before I could respond, she said again, “Oh, I know that seems silly.” Then I looked into her eyes and said, “I have a surprise for you.” She said, “What?” I said, “We are married, and I love you.” She was immediately touched and tears filled her eyes. Then I was touched, and here we were sitting in a neighborhood Mexican restaurant, a far cry from a romantic place.

Earlier today I read a tweet by Ann Campanella, author of Motherhood: Lost and Found. She said, “Blessings and loss are so often intertwined in our lives.” I replied that Kate and I frequently have such experiences. Little did I know that we would have one of those tonight. The loss of her not remembering that we are married was overshadowed by her ability to appreciate my caring for her, by her proposal of marriage, and her tender response when I told her we are already married.

Adapting to Changes in our Morning Routine: Part 2

Those who know me well understand that I don’t like change. I do, however, grasp that change occurs whether we like it or not, and the question is how to successfully adapt to it. Living with Alzheimer’s demands a lot of change. When I first noticed that Kate was sleeping late in the morning, I tried to determine why. What I really wanted was to be able to control it so that it didn’t impact our whole morning. I didn’t want a whole morning to myself.

That led me to do several things. The first was to consult her doctor. He suggested eliminating Trazadone from her daily meds. That resulted in her sleeping less time in a 24-hour period; however, it meant she went to bed a little later. Her pattern that had been so regular for years was disrupted.

Along with that has been a change in my whole morning routine. I was most concerned about her getting up early enough on the days we have a sitter. I wanted time for us to have lunch together before the sitter arrived. The other concern involved what time we eat lunch on the days we don’t have a sitter. We have eaten as late at 2:30 a number of times. Since I eat an early breakfast, I am ready to eat as early as 11:30 though eating between 11:30 and 12:30 works fine.

These two concerns led me to focus on getting her up earlier, not to get to Panera at the time we had been going but to be ready for lunch around noon. That meant that I let her sleep until 10:00 or 11:00 before attempting to wake her. Most of the time that gave her enough time to prevent her feeling rushed. Over the past week, it has been more difficult for her to get up.

Yesterday I tried something different. It was a day for the sitter to come at 1:00. At 10:15, I put on some music to gently wake her. About 15 minutes later, I checked on her. She was still in bed but awake. I asked if she would like me to take her to lunch. She said she would. I told her I had put her clothes out and the bathroom was already for her to shower. Then I left to give her a little time. When I returned thirty minutes later, she was sleeping soundly. I decided not to push her and try a little later even if it meant that the sitter took her to lunch. At noon, I checked again. She was awake but still in bed. I told her that this was a day for me to go to the Y and that Mary would be coming to stay with her. I asked if she would like to go to lunch. Again, she said yes.

After she was up and still having trouble getting going, I decided that I could ask Mary to meet us at Panera. I’ve done that a number of times before. As it turned out, we got to Panera only a few minutes before Mary, so I ate lunch with the two of them. When I finished, I left for the Y. I found that worked well and am prepared to do that on a regular basis if needed. It takes a load off me. I don’t have to be as concerned about waking her. It also allows Kate to do what she wants – sleep and take her time getting ready.

When I got home, Kate was resting on the sofa. Mary said they had stayed at Panera for a while before Kate wanted to come home. I gathered Kate had been resting a good bit of the time I was gone. That is another of my concerns. She seems to be using the time with the sitter to sleep. It’s hard for the sitter to control that, and that might easily explain something else that is happening.

Every change brings about responses that lead to other changes. My concern now is letting her sleep so much during the day that she can’t sleep at night. Until the last few days, that has not been an issue. During the past three nights, however, she has gone to bed early but was still awake an hour or two later. I want to avoid that’s becoming a pattern.

So, where does that leave me? The ideal resolution of the problem for me would be to wake her up at an earlier time. That should help her get to sleep more easily. I think I will try that for a few days and see how she responds. It seems worth a try. I may also be able to take advantage of those few times she gets up on her own. She did that a few minutes ago. She’s in the shower, and its only 10:10. That’s not a bad start.

Looking ahead, I believe that I will engage a sitter for at least a couple of mornings a week. I am not ready to do that just yet. Kate is just beginning to require help getting dressed, and I am not sure she would like someone new helping her. One thing is for sure. The changes are not going to stop. I will need to adapt.

Confusion Early in the Day

The other day before leaving for dinner Kate said, “Let me go to the bathroom first. It’s better to be prepared.” I immediately thought about the Boy Scout motto, “Always Be Prepared.” I was never a scout, but I remember that motto. That led me to think about its application to caregiving. (Yes, I relate almost everything to caregiving.)There is little question that those of us playing this role and those for whom we care benefit from being prepared. Of course, one of the things we learn is that there is no way prevent everything. I was reminded of that yesterday morning.

Several weeks ago, Kate fell out of the shower in one of the guest baths. Since then, I have tried to encourage her to use our bathroom. It seemed to me that it would be safer since it has a walk-in shower. Knowing that Kate uses multiple towels after showering and that she grabs whatever she can find, I hang two bath towels on a hook in our shower for Kate each morning. I keep a third towel on the counter directly across from the shower and place a bath mat on the floor beside the shower door. I also put out her clothes and place them on the chair on her side of the bed. I thought that would make it easy to find them because that is where she used to put them. That’s my effort to be prepared.

Sometimes that works quite well. Sometimes it doesn’t. Yesterday was a good example of the latter. I was in the kitchen around 7:45 when I heard a sound from the back of the house. I got up to check and noticed that Kate was in the bathroom next to our bedroom. I heard water running and assumed that she must have been taking a shower. I thought my preparations had been in vane. I went back to the kitchen. Fifteen minutes later, I heard another sound. This time I found Kate standing in the doorway to the family room. I asked if I could help her. She said she would. I asked if she had seen the clothes I put out for her. She didn’t remember. We walked to our bedroom where I saw the top I picked out. It was still on the chair. I located the others on the floor in a guest bathroom along with another pair of pants, top, underwear, bra, and two pair of shoes. I walked to another bathroom and found an additional pair of pants and bra.

Kate was obviously confused. Her memory doesn’t allow her to remember where she puts anything. I tried to envision what must have been going through her mind. It was clear that she had been in her closet and picked out additional clothes. My guess is that she had forgotten she had more than enough to wear in one bath and went back to her closet to pick out another pair of pants but took them into a different bathroom.

At any rate, I got her clothes together and helped her place them in our bathroom where she wanted them. I never quite understand this because she never dresses in the bathroom. She always brings the clothes to our bedroom after her shower. I left her to shower and returned to the bedroom about ten minutes later. She was drying herself off.

At 9:45, I checked on her again. She was resting in bed. I asked if I could help her. She said, “You could get me some clothes.” I told her they were right beside the bed. She asked for underwear. They had been with the rest of her clothes, but I couldn’t find them. I just got another pair from her drawer. I do wonder where the others went.

Before writing this post, I went to Google for more information about the Boy Scout motto. I thought being prepared meant “preventing” problems. According to Boy Scout Trail it means that one is “always ready to do what is necessary to help others. It also means you are ready, willing, and able to do what is necessary in any situation that comes along.” I like that. It’s a great message for all of us who are caregivers, especially at those times when we are most frustrated. I try to follow it. As I write this, I can’t help thinking of Kate. When she pays me a compliment, I often say, “Well, I try . . .” She stops me and says, “You don’t try. You do .  .” I’d like to think that’s what she would say if I told her, “I try to follow that motto.”

Adapting to Changes in Our Morning Routine

For most of my life I have been an early riser. I simply like being up early. As an adult, that has meant getting up, exercising, and going to work. After I retired, I continued getting up between 5:00 and 6:00. Over the past few years, I have made a number of adjustments to my morning routine. For a while after retirement, I dropped by the office for a couple of hours. Gradually, I stopped that to spend more time with Kate in the morning. I continued going to the Y three days a week and started walking the other four days. Over a year ago, I began to feel less comfortable leaving Kate by herself. That ultimately led to my engaging a sitter three afternoons a week. I started going to the Y during that time rather than in the morning. Until recently, I felt all right about leaving her early in the morning to take a morning walk.

Two things occurred that caused me to change again. The first, and to me more serious one, was Kate’s experience of an early morning anxiety attack. This was one of those times when she was upset at not knowing where she was or who she is. I was worried about her having another attack and my not being here to comfort and calm her. Simultaneously, I had a pinched nerve in my hip. This occurred when I stepped up my walking from 2.5-3.0 miles each morning to 3.0-4.5 miles. I decided I should take a break from both the Y and my morning walk.

One of the consequences of this change has been a reduction in my “reading” (actually listening) time. I have missed that as much as the exercise itself. I have always found it much easier to listen while walking or on the stationary bike or treadmill at the Y than simply sitting in a chair at home. I seem to be more distracted at home. I decided to try it anyway. I started listening 30 minutes each day. It didn’t feel right, but I discovered that it worked much better if I closed my eyes.

The hip is better now, but I still don’t want to leave Kate. Over the past few days, I’ve walked in a circle that takes me from our kitchen, family room, living room, dining room and back to the kitchen. I walk for 30-40 minutes while listening to a book. This is not the best arrangement. It is clearly a compromise, but it seems to be a good way to gradually get back into walking and listening. It is definitely not a long-term plan.

An additional issue is that the reduced exercise and reading have been an important part of my effort to minimize stress. That has been unfortunate in that it has occurred at the same time Kate is declining more rapidly. On top of that, Kate’s sleeping later in the morning means we are not as regular in making our morning trips to Panera. We are beginning to lose touch with that community of friends whom I have always recognized as helpful stress relievers. That, in turn, means I feel more stress than I have before. I am looking at other possibilities to right the ship. I’ll address that in another post.

Miscellaneous Notes from Yesterday

For the second day in a row, Kate got up on her own, this time about 10:25. She didn’t shower, so we made it to Panera shortly after 11:00. She was in a very cheerful mood. On the way to Panera, she whispered, “Tell me your full name.” That is the first time I recall her whispering in the car. She does it periodically at home. I’m not sure why. I suspect it is because she either thinks we have guests in the house or that we are staying in someone else’s home.

At lunch, she said, “What’s the name of this restaurant?” I told her, “Applebee’s.” In the next few minutes she asked two other times. The last time she said, “I know I’ve asked you before. I should remember that.” I said, “That’s all right. You can ask as many times as you want.” Then she asked my name. I told her and reminded her we have been married 55 years. She said, “Do we have children?” I told her we do, and she asked their names. I am no longer surprised at these conversations. They happen every day. I am just happy that she is able to ask so naturally without being too self-conscious about it. That is so much better than those moments when she is completely disoriented and has an attack of anxiety.

Following the experience we had last night, we spent some time in the family room. When I was ready to take my shower, Kate told me she was getting tired and having a little trouble with her puzzles. I told her I would put on some music in our bedroom, and she could get ready for bed. I brought her a night gown and put it on the bed. She was unsure of what she should do and asked, “What do I do now?” I told her to take off her clothes and put on her gown. She was still confused. I walked her through each step. When we were finished, she said, “I am glad I have you. I know that if something goes wrong, I know you will take care of it.” I definitely feel appreciated. I know that some caregivers work faithfully and don’t hear words like that. That’s another reason to be grateful.

My Dad

Today, the 105th anniversary of my dad’s birth, I am thinking a lot about him. He was a character. Everyone who knew him recognized that. He enjoyed life and invited others to join him. People, especially Kate, tell me I talk a lot, but I had a hard time keeping up with him. He was also a man with a sense of humor that sometimes fell outside the customary boundaries of propriety. Until his stroke in 2010, he was quite active on email. He was one of those who regularly sent jokes to his distribution list. I wasn’t on his list, but several of my female colleagues at the office were. I also learned that his Kiwanis club asked him to be more sensitive concerning jokes about sex and politics.

It isn’t his talkative nature or his sense of humor that I am thinking about most on this day. He was also a devoted husband to my mother. My mother loved to tell about seeing him for the first time in the ninth grade. She said, “Right then, I knew I was going to marry him.” She was right. They married right after high school when she was 17 and he was 18. After Dad’s death, my brother found a batch of old letters. Among them was an Easter card from my mother that she must have given him in the mid-1990s when she was around 80 and before dementia changed her life. She wrote a note that said, “From the first time I ever laid eyes on you, I have loved you – and I will love you forever.”

Mom and Dad were married 70 years and devoted to each other. That is what I’m thinking about today. Mom cared for him a lot until dementia entered the picture. At that point, Dad rose to the occasion and became her loving caregiver. They moved to Knoxville on Memorial Day weekend 1994. I didn’t recognize it at the time, but I am sure now that she was in the early stages of dementia when they arrived. Although I was with them a good bit, it was three or four years later when I realized that. She died in November 2002.

Dad was her sole caregiver right up until her death. She slept in the same bed with him until three days before she died when hospice brought in a hospital bed and put it right beside their bed. My brother, Larry, and I tried to bring in help without success. The only regular help he had was an adult day care center. Every Wednesday morning he dropped her off. Then he went to Kiwanis and did a little grocery shopping. I helped by visiting with them regularly and bringing in meals.

Although Dad was a big talker, I don’t recall his saying much about what was going on. I do remember his telling me that she would get upset with him and then quickly forget. I also remember that he tied one end of a string around her arm and another around his so that he would wake up if she started to get up during the night. I never heard the first word of frustration or complaint. On days when I took them places, I rolled her to the car in her wheel chair. To get there we had to roll across the grass. That adds a measure of difficulty. When I would fold the chair and put it in the trunk, I wondered how Dad, in his upper 80s at the time, could do this on a regular basis.

So, on this 105th anniversary of his birth, I have a new admiration for Dad. At the time, I had no idea what he and my mom were experiencing, nor did I know that I would be walking the same pathway a few years later. Now, I understand his desire not to relinquish her care to someone else. He felt he was the one who knew her best and could provide the best care for her. That took a toll on him the last year or two of her life. Fortunately, he bounced back after her death and lived another 11 years to celebrate his 100th birthday. He was quite a guy.

Another Good Day

I am always concerned when Kate and/or I have any special obligations in the morning. That is the time of day when I am least likely to know when Kate will get up and how easy or difficult it will be to get her places. Yesterday, we weren’t going anyplace early, but I had a conference call meeting at 9:30 for an advisory committee on which I serve. The last meeting was almost two hours. This time I had made an 11:00 appointment with a new sitter who will serve as an interim sitter for Anita while she is out for a minor surgical procedure. I had already prepared the committee that I might have to break away a little early if I needed to get Kate up. As it turned out, everything worked out well. The meeting was unusually brief. It was over by 10:15.

When I went back to check on Kate, I found that she was getting dressed. That meant I didn’t have to be concerned about her being ready to meet the new sitter. We had a little extra before she came but not enough time to get a muffin at Panera. I had one in the freezer that I thawed. Then Kate worked on her iPad until the sitter arrived.

The sitter, Marilyn, arrived on time, and joined us in the family room where we chatted for about 30 minutes before going to lunch. We had a little over an hour and a half over lunch to get better acquainted. The interview turned out to be a nice social occasion. I felt very good about her and called the agency to let them know we were pleased and would look forward to her being with us on Monday.

Kate had her bi-weekly massage at 2:00. From there we went to Barnes & Noble for an hour or so before returning home to relax before dinner. She picked up her “Big Sister” photo book that her brother, Ken, had made for her. I brought a chair over beside her and watched as she went through almost the entire book. She loves seeing all the old pictures of her and her family. She continues to comment on several specific photos that she likes. I always enjoy seeing her enthusiasm. When she was near the end of the book, she said she would like to finish the rest tomorrow. Then without closing it, she went back to the beginning and started going through it again.

We had a quiet dinner at Casa Bella. We had already been there for Broadway night last Thursday. The musical performances are held in the larger back room. This time we took a quiet booth in the front of the restaurant and enjoyed ourselves.

From there, we came home. Kate asked me what she could do. When she asks this, I tend to think she is asking because she wants something different than the iPad. I suggested a few things, one of which was to work on her iPad.  That is just what she wanted. She was so engrossed that she continued working her puzzles after I told her I would put on Les Miserables. A little later, she came back to the bedroom and got ready for bed. She was asleep a little earlier than most recent nights. It was a good day and a reminder that we still have many good times.

The way we think about our loved one’s behavior affects the way we respond to it

Sociologists look at all aspects of social behavior as components of social systems. When there is a change in one part, it has consequences for the others. We commonly hear naturalists who view the natural world in the same way. It’s easy to accept this point of view but not fully grasp its implications. For example, I am sure that quite a few people who lost power during Hurricane Florence found themselves saying, “So the power’s out. I think I’ll just . . .” only to realize that whatever they were going to do also depends on electricity. I know that every time I have the slightest injury to any part of my body, I discover how often I use that little finger, toe, etc. Little things really matter.

Over the course of Kate’s life with Alzheimer’s, l have encountered numerous instances of the importance of memory that I didn’t think of before. I am sure other caregivers encounter the same things day in and day out. One of the most common, and seemingly obvious, ones is to give instructions to a PWD with the expectation they will remember what you have told them. This is really easy to do for a long time after a diagnosis. I am sure one of the reasons is because the memory loss is not 100%. At first, Kate was still able to remember most things. As time has passed, she remembers less and less. Caregivers’ expectations don’t change as easily. On the whole, our loved ones continue to appear very normal, and we continue to treat them that way (as though they don’t have dementia). Thus, we often find ourselves frustrated when we should have understood it was our expectations that got us into trouble.

One of the most relevant examples for me right now is the tendency of caregivers to become frustrated when their loved ones ask the same questions over and over. We do this because we haven’t adjusted to the fact that they can’t remember the answers. When our loved ones change, we have to change the way we think. If not, we experience lots of frustration or irritation.

That takes me back almost eight years ago when Kate was diagnosed. Prior to that, I was pretty sure she had dementia, but I hadn’t fully changed my thinking. As a person with OCD tendencies, I found myself irritated by the disorder I saw in her behavior. The moment I heard the doctor tell us the results of her PET scan, I reinterpreted everything she was doing. That alone was worth our getting an official diagnosis. It made me a more understanding husband. That hasn’t meant that I haven’t been frustrated at times. It means that I understood why she was so disorderly and no longer blamed her. I knew she couldn’t help it. That lesson has served me well. Last night at dinner, Kate asked me at least five or six times where we were (the city). That was in addition to the approximately same number of times she asked the name of the restaurant. Each time she asked, I was able to respond as though it were the first time she asked without experiencing any frustration. I could only do that by fully recognizing that she can’t remember. Furthermore, she asks because she really wants to know. If I were in a city or restaurant whose name I didn’t know, it would seem quite reasonable to ask. I also realize that others may not be able to change their thinking so easily. I feel for them. That makes their lives so much more frustrating.

As Kate’s memory has gotten worse, I see new consequences of that loss. In particular, I am thinking of her memory of the various rooms in the house and the location of things in cabinets and drawers. I can’t know for sure what’s going on in her brain, but I’m very much aware of things that disturb my sense of order. For example, several times lately, I’ve noticed she has opened the drawers of my bedside table, taking out a few things, and leaving them on the table top. These are primarily catalogs and various cables and related electronic accessories. It has puzzled me as to why she was doing this. She had never done so before.

Since then, I’ve also noticed that she has been going through other cabinets, drawers, and closets in the house. It’s easy to notice because she never closes any of them. (That can be a problem for someone with OCD.) Yesterday was one of those days when she neglected the clothes I had picked out for her and made her own selections. I found that she had picked out three pair of socks, two pair of pants (but not a top) and taken them to the bathroom next door to our bedroom where she dropped them on the floor. (That’s the bathroom where she fell out of the shower the other day. I’m trying to steer her away from that one to our bath.) She had taken two towels off the towel racks and threw them on the floor as well as two others she had taken out of a cabinet. I took her clothes back to her room to put them up. When I did, I discovered all the cabinet doors were open in that bathroom.

All of a sudden it hit me. She’s not randomly opening drawers and cabinets. She doesn’t know where her clothes are and often doesn’t notice the clothes that I have picked out for her. That’s true even though I have carefully placed them on the chair next to her side of the bed. Now I see her behavior as quite logical. She’s looking everywhere that one could possibly put clothes. Sometimes it doesn’t take her long to find them. That’s when she opens fewer drawers. Other times it takes a lot of searching.

This also reminds me of something that seems to be getting increasing attention lately.  Most of us have heard that anger can be one of the symptoms displayed by someone with dementia. Some authorities say that is inaccurate, that anger and displays of aggression are not direct outgrowths of dementia at all. Instead, they suggest that the symptom is the PWD has misunderstood the situation. Thus, if we were to interpret the situation in the same way, we might think anger is a reasonable response.

I don’t pretend to be an authority on this matter at all, and, fortunately, haven’t had to deal with anger. I do believe, however, this is just one more example of how differently we might interpret and respond to the behavior of a person with dementia if we had a better understanding of the disease. All of us are in the learning stage, especially those who are dealing with a recent diagnosis.

Another Difficult Moment

About 7:45 this morning, I went to the bedroom to check on Kate. I don’t know why. Knowing that she sleeps much later than that, I usually don’t check on her before 9:00 or 9:30. I am so glad I did. As I walked in, I could hear her whimpering. She has never been one to cry until the past few months during when she has experienced anxiety attacks and two recent moments when she was very sentimental. Those experiences immediately made me think about her anxiety over her memory loss. I am sure I was right.

I got in bed and held her. I asked what was wrong. At first, she didn’t say anything. She just continued to cry. She often has trouble expressing her feelings. I continued to hold her. A few minutes passed. Her cry became more than a whimper. I said, “You sound like you’re afraid. Are you afraid?” She held her head up and nodded. I said, “Life can be hard, can’t it?” Then I asked “What are you afraid of?” She said, “Losing you.” I said, “You could never lose me, I will always be with you.” Another few minutes passed. She continued to cry softly. Then she said, “I don’t even know who I am.” I told her and then told her about her parents and our children.

I have a wireless audio system that I can control with my phone. I pulled the phone out of my pocket and turned on an album of Russian sacred music. It is very peaceful. She said she liked it. I continued to hold her, and she slowly began to stop crying. Several times she said, “I don’t want to lose you.”

After a while, she said she would like to lie in bed a while. I told her I would get my computer and sit in my chair next to the bed. She rested another 45 minutes. Then she got up. She looked a little confused, but she wasn’t crying. I hope that she has already forgotten what had happened. I just wish I could keep this from happening again.

Predicting the Future: Part 2

Since writing Part 1 the other day, I had a conversation with someone who asked what I planned to do in the long run with respect to Kate’s care. I told him that was a good question and gave him the following answer.

My desire has been and still is to keep her at home. There are several things that have influenced me to feel that way. First and foremost is the fact that three of our four parents remained at home. After Kate’s father had a stroke, he required round-the-clock care. Kate’s mother learned of someone who could move into their home and provide that care. Her father only lived four months after the stroke. That arrangement worked well. Her mother had a series of TIAs that led to vascular dementia. That also led to the need for 24/7 care. Through their mother’s friends, Kate and her brother, located someone who moved in with her and supervised three shifts of people who provided the needed care. After a year or two, the friend who had moved in to serve as a supervisor had her own health issues. That is when Kate and I brought her to Knoxville to live with us. She lived with us five years and three months with round-the-clock care provided by shifts of CNAs we engaged through an agency.

During this same period of time, my mother was diagnosed with dementia. My dad did not have the same financial resources as Kate’s parents, nor did he have the inclination to have help in their apartment. My brother and I tried any number of times to engage in-home care or to move them to an assisted living facility. Dad tried in-home care but didn’t like it. He ended up caring for my mother at home the entire time. The only help he did accept was an adult day care center. He dropped Mom off every Wednesday morning so that he could attend his Kiwanis meeting and shop for groceries. I regularly brought in meals the last year or two. Before that Dad shopped and cooked on his own. I have a new-found respect for him now. He said next to nothing about any problems he had taking care of her. I was able, however, to observe the toll it took on him. I was quite relieved to discover that he bounced back after her death. He even had a significant other who developed vascular dementia and cared for her until her death. Dad lived 11 years after my mom died and 4 years after his significant other died. He was quite a man and caregiver.

With that background, I was naturally inclined to keep Kate at home. If Dad could do it, I could as well. Besides we have long-term health insurance that will cover a large portion of the financial costs. Dad didn’t.

Since Kate’s diagnosis, I have learned much more about dementia and caregiving. I’ve read a lot of books written by caregivers. I have also followed several different forums for caregivers of PWD. It has also been almost 7 years and 8 months since the diagnosis. I’ve had vastly more personal experience as a caregiver than I had with our parents. All of that gives me a better grasp of the challenges to be faced than I did before. For quite a few reasons I have mentioned previously, I’ve had the good fortune of having a load that is  lighter than that of many people in my shoes.

That leads me to an important conclusion. I don’t believe there is one approach to caregiving that works for everyone. I believe that each caregiver has to assess the numerous ways to provide care. What are the pros and cons of care at home? Care at a facility of some type? Having a good idea of the options that are available will help the caregiver and family determine what is most desirable.

Then it is time to get practical. Do we have the financial resources available to have most or all of the options? (That rarely happens.) How well-suited am I to play the role of a hands-on caregiver? If I want to bring caregivers into the home, should I go through an agency or try to hire and manage caregivers? In either case, what kind of manager would I make? Am I ready to have people in the home 24 hours every day. What about my own family situation? What other responsibilities do I have? Am I employed now, or will I have to continue working to meet expenses?

Caregivers also need to be honest with themselves concerning their own personalities and those of the person needing care. Some people are natural caregivers. Others are not. Most of us fall somewhere in between. I continually ask myself the questions above. So where does that leave me? My desire has always been to keep Kate at home for the the entire time. Am I beginning to have reservations as she enters the final stages of her illness?

My current answer to those questions is that I am still optimistic about staying the course. Nothing new has happened to change my mind. On the other hand, I continue to keep all my options open. I do that because I don’t know what lies ahead. Kate has been very easy to care for up to now. Based on the experience with my mother and Kate’s mother who were also easy to care for, I believe Kate’s attitudes and behavior will continue to be very much like theirs. I should also add that I have never thought of providing all of her direct care myself. I have always intended to work through an agency who will provide 24/7 care. Thus, I am optimistic, but I believe I will always keep an open mind concerning what is best at the time.