Reflections on Leaving Our Home

Two years ago this month, I took a big step and made a down payment on an apartment in a local continuing care retirement community (CCRC). I was motivated to do this for at least two reasons. First of all, Kate and I cared for our parents for twenty-four years. We didn’t mind that. We would do it all over again if faced with the same situations; however, we wanted to make sure our children’s responsibilities for our care would be minimal. I don’t recall that we talked about a specific way to do that, but I felt that we needed to plan for an easy transition to the last chapter of our lives. Neither of us wanted to put them in the often awkward position of letting us know that it was time to give up driving or to move out of our home. Living in some type of senior living facility was always an option. I didn’t establish a specific time frame for a move or assume that we would have to move at all. I approached life a step at a time and was prepared to make changes as I thought needed before our children would feel the need to step in.

That leads to the second reason for my decision. Kate was approaching the last stage of Alzheimer’s. I was handling things with minimal help, four hours of paid help three afternoons a week. She had become totally dependent on me, and I began to wonder what would happen to her if something happened to me. That was the catalyst that led me to explore a CCRC. We have several local options, and, in the past, I had visited at least four of them. I’ve known quite a few people who lived or had lived in the one I chose. It was one of two that were located in places I felt would be convenient for us. I knew the marketing director and that they were about to begin construction on a new building for independent living. I made an appointment with him. Two weeks later, I gave him our down payment.

I haven’t waivered in my decision since that time. As time passed, Kate declined, and the pandemic hit us. At least one of my good friends has asked several times if I were eager to make the move. The answer was and still is that I am not eager, but I believe it’s the right decision. It provides access to all the options we might need in the future. That includes assisted living, memory care, skilled nursing, and rehab. In addition, the doctor who established the geriatric practice with which Kate’s doctor is affiliated has opened a practice on the grounds in the building next door to ours. Yes, he makes house calls as well. I haven’t made the change for Kate just yet, but her doctor and I have talked about it. She actually suggested that as a good possibility. I intend to explore it further once we move in.

Having made that decision two years ago, I’ve learned a couple of things. One is that two years is not a long time. It passed quickly. Had I been eager to move, I’m sure I would have thought the day would never come. That doesn’t mean that I have any regrets about my original decision. I don’t. I also believe I made it at the right time. I didn’t want to move when it might have been disturbing for Kate. Her decline during that time has been significant. I don’t expect her adjustment will be difficult although I feel equally sure she will notice some difference in her environment.

The second thing I’ve learned is that a move like this is stressful. I’ve had an abundance of help. In addition to Kate’s caregivers and the woman who cleans our house, I engaged three other people to assist me with different aspects of the move. One is the decorator Kate has worked with about thirty years. She helped me decide on the furnishings to take with us. I know someone else whose business is assisting seniors who want to downsize. She is handling all aspects of the physical move itself. The third is a woman who has cared for the plants in our yard, on the patio, and front porch. She has also taken care of our holiday decorations. She and I have been worked together 6-8 months getting rid of things in our closets, cabinets, and attic.

Despite this assistance, I have found it impossible to turn over everything to them. There are just many decisions I need to make myself. In fact, I view this move, possibly our last one, as a continual process of decisions regarding what is important in life. Numerous times, I have looked at boxes of “things” we have accumulated over the years and thought a person in the ministry could preach a year’s worth of sermons about them. Most of them are of little value to me now. I’ve discovered they are also of little value to our children or anyone else.

That said, I’ve found that what matters most are intangibles. Uppermost in my mind are the memories that I will take with me. Recently, our weather has been perfect for getting outside. Kate, her caregiver, and I have spent time as much time as we can on our patio enjoying the spring flowers and watching the new growth of leaves on the forest of trees behind our house. It’s been a therapeutic break from the preparations of moving and brought back memories of the good times we’ve had here. I especially remember special celebrations like my parents’ 65th and 70th anniversaries, my dad’s 100th birthday and those leading up to it starting with his 90th. There were also grandchildren’s visits and the time spent in and around the pool. I would also include the almost 5 ½ years Kate’s mother spent with us with 24/7 care provided by 6-7 caregivers who became part of our family. But most of all, I think of the good times with Kate before and after her diagnosis, and it is all but certain we will have more of them during the next week that we are here. I will leave with a sense of satisfaction and gratitude for these memories and many more.

The other day I thought about the move my parents made from their home to live close to us. My dad was the same age I am now, nearing 81. They had lived in South Florida much longer than we have lived here. The move was stressful for him. My mom was in the early stage of dementia. He did his best to see that she got acquainted with people. One of the first things he did was join a local senior center. He became active in Kiwanis and a seniors writing group. He loved his computer and kept up an active email correspondence with friends from the past and many new ones. He adapted very well and lived to be 100. I’m optimistic that I’ll do the same.

A Happy Easter

I should preface this post by saying that I don’t want my readers to think our lives are all smooth sailing. They are not. We experience many of the same or similar challenges that are common among people with Alzheimer’s and their caregivers. I wish Kate had never received her diagnosis, but she did. From the beginning we wanted to make the most of a bad situation, and we have.

During the past ten years, our lives have become smaller in that we can’t do as many things as we used to. The surprising thing to me is that we continue to enjoy life and each other, and some moments, even days, are very special. I reported on one of those in my previous post. Since then, except for a few moments, we’ve had a series of good days. That was capped off by a very nice Easter.

Kate is usually asleep when her caregivers arrive at 11:00. Yesterday, she would have been late for a sunrise service, but she was awake before 9:00. Like other mornings recently, she smiled when I went into the room. In fact, that has become the norm sometime in the past few months. She displayed no sign of confusion or fright. I’m not sure she knew my name, but it was clear that she recognized me. Except for my knowing she is confined to bed without our help, she seemed as normal as she was before Alzheimer’s entered our lives.

Because she was up early, I was able to take care of a few things that we usually do after the caregiver arrives. That included getting her meds, yogurt, and juice. After that she wanted to rest a while. Once the caregiver was here, I cooked her breakfast. We gave her a little break and then changed her and got her out of bed and into her wheelchair.

Kate and her caregiver watched an Andre Rieu concert on YouTube while I went to lunch at Andriana’s, something I have been doing almost every Sunday for the past few months. It’s different going without Kate, but I enjoy the whole experience. I always get one of two of my favorite salads with blackened salmon. We’ve eaten there on Sundays for years. We know the servers and they know us. In addition to our regular server who is very attentive, several others always stop by the table to say hello and check on Kate. Yesterday, one of them was especially excited to tell me that she is in her thirteenth week of her first pregnancy, and she’s going to have a boy. The manager brought my salad, and we chatted briefly. Since I’ve been going alone, I’ve also ordered a meal that Kate and I can split for dinner.

Yesterday was as near perfect a day as it gets. The temperature was in the low-to-mid-70s, and the dogwoods and azaleas in our back yard are in full bloom. When I got home, we took Kate outside on the patio.

Even in the mid-70s, it can get hot when seated in direct sunlight, but we sat in a shady spot that was just right. The first couple of times we took Kate outside, the caregiver and I clearly had a good time. We think Kate did as well, but she was not very demonstrative. The last two times she has enjoyed the change in scenery, and yesterday, she was enthusiastic. She loved looking at the new growth of leaves on the trees as well as colorful flowers. It was a pleasant experience for the three of us.

We went inside for dinner ninety minutes later. The dinner itself was also good. Kate always enjoys her food, and this time was no exception. Then we took her back to the bedroom and got her ready for bed. Kate was tired and rested while I listened to Tchaikovsky’s fourth and sixth symphonies on YouTube. Kate wasn’t talkative, but we both enjoyed the music and being together. It was a nice end to a very Happy Easter.

A Touching Moment

Despite many challenges that accompany Kate’s Alzheimer’s, I attempt to communicate that we also experience Happy Moments. I believe I’ve been successful in that, but some experiences can also be described by other adjectives. One of those occurred two days ago. It was “touching” for me, her caregiver, and a friend who had dropped by to say hello. Let me explain.

Kate is a member (now inactive) of P.E.O., a women’s organization that supports educational needs of women. Kate is a former president of her chapter and has always liked and been impressed with another woman who preceded her as president. Several years ago, we bumped into her in the lobby of a local movie theater. We were leaving as they walked in. After chatting briefly, Kate said, “Who is that? I recognize her, but I don’t know who she is. I liked her.” I thought that was a beautiful example of the loss of her rational abilities and the strength of her intuitive ones. The feeling she had for the woman had clearly stuck with her.

Yesterday, she stopped by to say hello on her way to meet a neighborhood bridge group. I was pleased that Kate was awake early and in a cheerful mood. When the friend arrived, I took her into the living room to talk with her. It had been a long time since she had seen Kate, and I wanted to update her and let her know that she might not recognize her. In fact, shortly before I had told Kate she was coming, and she had no idea who I was talking about. Nothing I said rang a bell.

Kate was in bed. I entered ahead of her friend and explained that she had a surprise guest who had come to see her. The friend walked to her bedside, and Kate responded like the Kate I’ve always known as a welcoming host to her home, one of the things passed down from her mother. With a big smile (something else she got from her mother), Kate reached out her hand, and her friend took it. Then Kate took her other hand and stroked the top of her friend’s hand.

She asked the friend to sit down on the bed beside her. That began a ten-minute conversation between the two of them. Kate’s words didn’t come out the way she would have wanted, but she communicated a sense of recognition and love for her friend. While they talked, I wiped tears from my eyes just observing the poise and feeling that Kate conveyed to her friend. There have been many other occasions when I hoped she could respond in the same way to a friend or to our daughter and son, but she couldn’t. Had it not been for her being in bed and getting her words mixed up, she would have been just like always.

I’ve heard and read accounts of other caregivers who have observed surprising experiences like this with their own loved ones. This was not the first time she has surprised me with things she has said or done, but this was the most touching I have witnessed. It comes during a week when she has gotten along particularly well.

It was an opportune time for her friend to visit, but there was more to it than that. The friend was very calm in demeanor and tone of voice. She spoke slowly and in short sentences. Most importantly, her words also conveyed an interest in Kate. I believe one of the problems Kate has is feeling left out because so much of the conversation around her is among the other people who are present. I think that is because people don’t know what to say to someone with dementia.

We caregivers are always trying to understand why our loved ones say or do things, but what is most important is that we treasure moments like these. I will hold on to this one for a long time.