Alzheimer's Caregiving; Joy or What? By Jack Lewis and Patti Lewis, for caregivers moving along the road we have traveled.
Patti concluded her fourteen year journey through early onset Alzheimer’s disease in February of 2006. Patti was 64. She taught us much about the needs of people with Alzheimer’s disease and related disorders. We will work to bring the understanding she brought to us in order to raise the quality of life for each person entrusted to our care. It is our hope that by sharing our experience, and lessons learned so far, other caregivers will find their way to the place where they recognize and feel the joys and rewards of their caregiving.
Chronology Because hindsight can be so clear, behavioral / organizational changes were visible in 1988, when Patti was 47. Organizational skills were one of her strengths. That began to change. I was clueless as far as linking the changes to anything at all, let alone to Alzheimer’s disease.
In the summer of 92, she lost her job and could not understand why. This was very difficult for Patti. I thought there had to be something wrong with the organization. Later that summer, Patti showed a great deal of confusion while we were on the golf course. Sometimes subtle, and sometimes not so subtle, behaviors revealing confusion and disorganization became more frequent and in the summer of 93 I made an appointment with a neurologist.
The call from the neurologist came while I was in St. Louis. “…Mr. Lewis I’m afraid it’s probable Alzheimer’s disease”. I did not know what Alzheimer’s disease was. I knew I felt afraid of it.
“I had been worrying about Alzheimer’s,” Patti said, as I held her to tell her of the doctor’s call. One of the things she told me that night was that she had not been able to tell time for a long time. She had been “faking it”. Our best estimate was at least for more than a year.
Patti would talk with me about her daily activities with confidence. I was slow to realize it; Patti was reassuring and supporting me. Patti told me some of the things she knew about AD. Through her camouflaged fear, she continued to give me encouragement!
I attended my first Alzheimer’s support group in Dayton. I knew I didn’t belong there. The things I heard that day did not apply to us. This was not Patti, not our life. Denial was just defined at a new level. I did not return to another group until we had returned to Michigan in 1995.
In 95, we began to employ part time aides for some assistance at home. Over a two-year period, we moved to full time help during the day. For more than two years, we remained home with full time dayshift assistance. Our out of home care experience began in an assisted living facility with a dementia care unit. It was not a positive experience, and I took her home after three weeks. I looked into the world of Adult Foster Care homes. Patti moved to an adult foster care home in November of 2000. Seven months later she had a seizure that ended her ability to stand or walk. The AFC home required their residents to be ambulatory, so from the hospital we entered a nursing home. I got Patti up, dressed and fed her breakfast every day. Returning by the shift change at 3, we had each other’s company through supper and getting her to bed. But, there were stresses. I witnessed daily the tragedy of our culture’s medical model of care for people with dementia.
Nearly fourteen months later we came “back home” together by way of purchasing the same AFC home where we spent seven months, prior to the seizure. The rational was that I could control and implement “care” as I had been learning to define it, and positively affect the quality of life for a few others, along with Patti. What is most significant in our experience, is not the learning of what I call the“mechanics” of caring for a person with dementia, the dealing with uncharacteristic behaviors, the need for the ADL’s care the doing this in order to control or manage that. What matters is becoming aware of my role as Patti’s caregiver to be that of being privileged and rewarding. The day of the diagnosis in 1992, as we cried and hugged, I said to her, “we will do this together and it will be my privilege to be with you and take care of you”. I was sincere, but had no idea what I had said.
Beliefs and Values All loving caregivers of people with Alzheimer’s disease, and other dementia illnesses understand anguish, despair, fatigue, grief, frustration, and loneliness. We are not prepared for this business of being caregivers. How do we face this challenge? Behaviors and expressions we do not understand begin to become a part of our lives. Often we respond with reason and logic, which leads to frustration and stress, especially in the earlier stages. How do we do this care thing? It took some time, but I found it very helpful to reexamine my fundamental beliefs and values. Our beliefs and values determine the nature of our journey through the process of this disease.
The value of beginning with a personal assessment is that we enable ourselves to make decisions and take action congruent with who we are. Caregiving, if at odds with who we are, may become stressful, unhealthy, and void of the joy and reward that are there to experience.
A personal assessment of beliefs and values can be challenging and difficult. Asking ourselves the tough questions and doing the assessment can make the difference in the quality of life for our loved one, and for ourselves. Questions like, “why did God allow this to happen to her?”, were very difficult for me. There were times when I hear myself saying, Why doesn’t He take her?” Maybe Patti hasn’t finished showing me what I need to know, was the closest thing to an answer I ever managed.
Empowerment The value of adopting an attitude of “I get to” as opposed to “I have to” is Huge! It is very empowering! It opens the door to the joys and rewards of caregiving. We get to choose how we look at the disease, our loved one, or anyone whose care has been entrusted to us. Moreover, we get to choose how we look at their needs, and our role as their caregiver. Once we have touched base with ourselves and reaffirmed our personal priorities, principles, and values, we can set future quality of life goals for ourselves and our loved one. There is a process to shifting our paradigms and adjusting our perspective. Writing a personal mission statement can be a valuable way to position ourselves to make appropriate decisions, that are consistent with who we are, for our future. Motivation for adopting an “I get to” attitude can come from many aspects of our makeup. It might beCompassion. It could be a strong desire to make a difference in the life of one person, or for a group. It could be Love. A major reason that an “I get to” attitude develops is understanding that what we do is consistent with what is most important to us. For me, myanchoring belief is that love is the beginning and the end of being. The mission of caregiving, with all its parts, is first and last, a matter of love.Patti made me the beneficiary of unconditional love and support for many years. My caregiving gave me the opportunity to do for her what she had always done for me.
The disease has nothing to do with Patti’s, or any other person’s, essence as a person. It is a disease with a process. She remained a whole person. The disease brought change. Her communication was much more subtle without words, but it was there! Her needs are very simple. She, like everyone else, needed love, a sense of attachment, and a sense of inclusion. And, she could feel it! Most challenging at late stage is to provide meaningful engagement. Often to get a connection is the most that is possible. Connections bring a very special joy and reason for celebration. Subtly, Patti continued to teach.
Understanding There are many insightful writings by people with dementia. Careful reading of such expressions provides insights that can help us better understand their point of view. Two marvelous collections of writings are, “You are Words” and “Openings” both edited by John Killick. “The truth is mine not yours”, from writing titled “Mother to Son”, which is included in “You are Words”. From the same book, an article titled, “On the Other Side”, contains a line, “I didn’t know if you would understand, with you living on the other side…”. I have found that opening up to their thoughts, their hopes and their fears, has helped me to join the journey. Our communication became more meaningful for both of us, and even more rewarding for me. I wish that for you.
Special Moments of Joy Yes, care needs include some tasks. Changing a diaper is one. When the goal for the change is to see how absolutely comfortable it can be for her, I feel that my “task” is one that goes way beyond clean and dry. I can bring some emotional comfort too. Subtle as the signs are, we learn to read those responses and we know when we can feel good about providing a moment of emotional comfort, along with the “task”. The way I ground her meds into a fine powder and carefully layered it into the yogurt, the way of touching the toothbrush to her teeth, the way a washcloth touches her face, the stroking of her hair are all opportunities for our loved one to experience a special moment of joy.
I believe that the quality of life for Patti, and many other people with dementia, is determined by the sum of the special moments that we create, or help evoke, for them. People with dementia have lost the concept of a day, a week, or of a calendar. Sequencing of events is no longer possible. What they do have are moments, moments for feeling. Moments of connecting, of meaningful engagement, moments that produce a sense of attachment, of inclusion, having a sense of self, and feeling love, are the necessary experiences for a quality life for all of us. A caregiver can shape their interactions to produce the moments. What an empowering opportunity! It can also strengthen the sense of relationship with this marvelous person who isn’t able to articulate her needs, her wants, or her sense of relationship any longer.
With this focus, we enable ourselves to feel fulfilled in our role. This is not because we perform our tasks to a new standard of excellence; it is because now we are looking for very different results, from the “mechanics” of the medical model of care, to that of support of their personhood. The reward is Huge!
As knowledge of AD and other dementia’s advances, we are continually made aware of additional evidence that recognition and understanding often continue much longer than was previously thought. In our case, I believe Patti was aware of my presence and recognized the sound of my voice. Often, she made a sound in response to questions in our conversation. She gave me special moments of joy!
Patti poured appreciation, care, encouragement, love, and support into raising our children and me. It was my fervent hope that I could come close to her level of giving with those same things. I don’t feel this way from obligation or guilt, or because she had become like an infant in some ways. It just felt right. The idea that she, or others in the late stages of their disease are considered to be like infants is very uncomfortable for me. She is not an infant or child. Her need to feel attached, to be bathed, changed and fed may be similar, but that did not make her a child again. She experienced the processes of growth, of learning, of loving and of maturing. That did not change because a disease has interrupted the communication processes of her brain. She had the right to her dignity. Treating her as an infant or child is not consistent with recognizing her personhood, or her dignity.
The Journey We go together but separately. This is not something I got to choose, and neither did Patti. In 1993 Patti said to me, “you can’t possibly understand what it feels like to have this happening to you”. Of course, she was right. From that day, the workshops, the seminars I attended, and the study I have done had an almost singular purpose, to try to raise my level of understanding of her point of view. I believe that the more understanding I have, the better I am positioned to help support her personhood, to help her feel attached, comfortable, reassured and loved.
As we learn that all behavior is communication, we learn to silently ask, what would you like to say to me? What are you feeling right now? We listen. We watch. We come to realize that we have very special teachers, the special people for whom we care. Without doubt, I am forever changed.
Some wonderful people have touched our lives along our journey. I am very grateful to them. Asking for help was difficult. Fortunately, some very caring and talented individuals were there with encouragement. Awareness of the “join the journey” concept, the contribution of a masterful adult day care program, the world of Adult Foster Care and Hospice care are examples. These people have helped make a difference in the quality of life for Patti, and many others. The outpouring of love and care given by so many caregivers continually moves me. I stand in awe of the inner strength and caregiving skills developed by people who, because of this disease, I am fortunate enough to know. Each of them would say that it is simply a matter of love.
The concept of “join the journey”, once I understood it, provided me a context that could accept framing of both caregiving and life goals. In part, it’s going with the flow, or don’t sweat the small stuff. It is accepting the reality of the other person’s experience, without condition. That, I believe, is validation. Perhaps if I had understood the phrase “join the journey” earlier, we both may have felt more comfort sooner. I encourage other caregivers to invest in pursuing more understanding of their loved one’s perspective. I have come to see that pursuit as truly joining the journey.
The most important needs of a person with dementia are no different than anyone else. We all share the need to feel loved, to feel attached, to feel included, to have a sense of who we are, and to be meaningfully occupied. Having a clear purpose for our caregiving provides fuel for tomorrow, and perspective for getting beyond the lower level concerns.
As life continues for us at Patti Lewis Care Home in Howell, the priority is to ensure that these beliefs do in fact, translate to maximizing the quality of life for each of our residents. As the philosophy becomes the methodology, our ‘Model of Care’ will then be an appropriate and fitting legacy to Patti.