..Caregiver of the Month
August 2003
Jack Lewis

Alzheimer’s Caregiving; Joy or What?
(For caregivers moving along the road we have traveled
)

Each time I meet with, or attend a support group, I come away touched by how others address their circumstances. What follows is a summary of our journey so far, the first 12 years.

Patti is 61 now. That’s rather young for the point in our journey we have reached. I am comfortable sharing our beliefs and values that affect and direct our journey through the process of the disease. It is our hope that sharing our thoughts will help other caregivers arrive at the place where the rewards and joys of their special caregiving will be felt and understood in shorter time than they might otherwise.

What is most significant for us in our experience, is not 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 getting appropriate help, 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.

We began with some help at home and moved to more help at home, then to assisted living and on to adult foster care until Patti experienced 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 was with Patti at the nursing home more than any employee each week, but there were stresses from things I could not control. Nearly fourteen months later we came “back home” together by way of purchasing that same AFC home. The rational was that I could control and implement my definition of care for Patti, and affect the quality of life for a few other residents as well.

All loving caregivers of people with Alzheimer’s disease, and other dementia illnesses understand anguish, despair, fatigue, grief, frustration and loneliness. Most caregivers I have met along the way feel pretty much alone in their role. How do we face this challenge? We are not prepared for this business of being caregivers. Most of us just find ourselves there. We struggle. Behaviors and words that we don’t understand begin to become a part of our lives. We often respond with reason and logic, which leads to frustration and stress, especially in the early stages. How do we do this care thing? It took me some time, but I found it very helpful to reexamine my fundamental beliefs and values. Had I recognized the value of asking myself what are my most important beliefs earlier, I think I could have found more peace earlier. I was caught up in the changes in Patti and a dread of the future.

I am in better position now to understand the value of beginning with a personal assessment. Its purpose is so that the decisions we make and actions we take going forward will be consistent with whom we are. Caregiving for our loved one, if at odds with who we are, may become burdensome, stressful and void of the joy and reward that comes with acceptance and understanding of the value and sanctity of our role.

Alzheimer’s Caregiving; Joy or What?

A personal assessment of beliefs and values can be challenging and difficult. Asking our selves the hard questions and doing the assessment can make the difference in the quality of life for our loved one and for our selves. The question, “why did God allow this to happen to her?” was very difficult for me. There are times when I hear myself saying, “What the hell is God doing? Why doesn’t he take her?” Maybe it’s that Patti isn’t finished showing me what I need to know yet.

The value of adopting an attitude of “I get to” as opposed to “I have to” is Huge! It opens the door to the joys and rewards of caregiving. The process of reframing and adjusting our view comes from love and completely affects my beliefs about caregiving. Patti made me the beneficiary of unconditional love and support for many years. I get to do for her now what she has always done for me. Over our lifetime together, my anchoring belief came to be 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.

Allow me to pass along a thought that was kindly shared with me. It is this: Alzheimer’s disease is just one of many diseases that each of us can identify, and probably know someone who is, or who has, suffered through its process. It may be that Alzheimer’s disease is just one more way to die. Very few of us will die the “in my sleep” version. At this point I don’t see Patti’s situation to be any better or worse than many other causes of death. That’s a big change from the early years.

We get to choose how we look at the disease, our loved one, and our loved one’s needs and our role as their caregiver. The disease has nothing to do with Patti’s essence as a person. It is simply a disease with a process to it. The disease has brought change. Her communication is much more subtle without words. She continues to be a wonderful lady. Her needs are very simple. She needs love. And she can feel it!

Yes, the needs include some tasks. Changing her diaper is one. When my 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 grind her meds into a fine powder and carefully layer 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 Patti to experience a special moment of joy.

Alzheimer’s Caregiving; Joy or What?

I believe the quality of life for Patti and the other residents of our home is determined by the sum of the special moments that we create for them. People with dementia have lost the concept of a day, a week or of a calendar. Sequencing of events is no longer part of their grasp. What they do have are moments. A caregivers’ interaction produces the moments. What an empowering opportunity! I have found a sense of contentment and peace in the grasp of this disease by reframing my view to where producing those moments of joy are all that matters. My caregiving has a clearer focus now. It can also strengthen the sense of relationship with this marvelous person who isn’t able to communicate her needs, her wants or her sense of relationship any longer. The reward is Huge!

We get to feel accomplished and fulfilled from doing tasks that need to be done; because now we are looking for a very different result from the “mechanics” of the task to an emotional and spiritual comfort. If some of these necessary tasks felt like drudgery, performing them with the purpose of creating special moments of joy can change that feeling dramatically. The joy that Patti brings to me when I see her experiencing a moment of joy is beyond my ability to describe. Often through tears, I can say thank you!

Most of us have been asked if our loved one knows us. In our case, I believe she is aware of my presence and the sound of my voice. Others tell me that when I am near, her facial expressions show comfort, like when she hears my voice. But it wouldn’t matter because I know who she is. If we arrive at that point where recognition would be lost, we could begin a new relationship with our loved one with sound and touch. In some cases having a clean slate may be a great opportunity for establishing a connection. The choice is there for us.

Patti poured appreciation, care, encouragement and love into raising our children. It is my fervent hope that I can come close to her level of giving with those same things now. I don’t feel this way from obligation or guilt, or because of the notion that her needs now are like that of an infant. It just feels right. It’s the love thing in the pursuit of special moments, and how good you feel when you see it happen.

Actually, I am very uncomfortable with the idea that she, or other people in the late stages of their disease are considered to be like infants. She is not an infant or child. Her need to be bathed, changed and fed may be similar, but that does not make her a child again. She has experienced the processes of growth, learning, loving and maturing. That did not change because the disease has damaged the brain and interrupted its communication process. She has the right to her dignity. Treating her as an infant or child would not be consistent with protecting her sense of dignity in my view. We want to be very careful about these notions of “reversion” and “role reversal” especially for adult children caring for an aging parent. A parent remains a parent and a son or daughter remains a son or daughter.

We continue the journey. We go together but separately. This isn’t something I get to choose, and neither does Patti. In the period when we could have conversation about the disease, 1992 to 1996, 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. If there are regrets for me, they are the times I got sidetracked from this pursuit. I believe that the more understanding I have of her point of view, the better I am positioned to help her feel comfortable and reassured.

Alzheimer’s Caregiving; Joy or What?

I could not have written or said many of these things much before now. Life is easier now. I am probably stronger now. This is due I’m sure to reaffirming beliefs and values, and understanding and defining my caregiving mission. I know I am forever changed.

Some wonderful people have touched our lives along our journey. I am especially grateful, because I did not do what we have all been advised to do, ask for help. (A long standing flaw of mine). I learned that it can also be difficult to receive help. Fortunately some very caring and talented individuals slipped in some life-changing guidance. Awareness of the “join the journey” concept, the world of Adult Foster Care and Hospice care are examples. I am very grateful. These people have helped make a difference in life. 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.

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 really joining the journey. Having a clear purpose in caregiving helps me get past the lower level concerns and lightens the burden.

As life continues for us at The Ladies Home for Gentle-Care, the priority is to ensure that these beliefs do in fact, translate to maximizing the quality of life for each of the ladies in our home. When the methodology is all in place and that goal is satisfied, our home and our model of care may then be an appropriate and fitting legacy to Patti.

Jack Lewis
Email: Jack

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