Where Is the Joy in Alzheimer's Caregiving?
by Beverly Bigtree Murphy, MS, CRC
"It is insufficient to consider disease in purely mechanical or chemical terms, it must be considered equally in biological or metaphysical terms. ...One sees that beautiful and ultimate metaphysical truth, which has been stated by poets and physicians and metaphysicians in all ages ...that love is the alpha and omega of being; and that the work of healing, or rendering whole, is first and last, the business of love." Oliver Sacks, "Awakenings"
I took care of my husband, Tom, at home through the duration of his years with Alzheimer's. I did it with private home health care, respite breaks for short vacations, and what amounted to a great deal of personal determination, because I wasn't exactly encouraged to take this challenge on. Institutionalizing Tom and getting on with my life seemed to be the only response I got when I asked for information and options, even though I expressed my desire to keep Tom home as long as possible and even though I had the ability to do it. While everyone expressed concern with my health, they all seemed to miss the point that Tom and I were going to be the ones living with the decisions, not them. As for Tom, once his disease became apparent, he ceased to have any real value outside of our immediate circle. He became a non-person who was nothing but a burden in the eyes of everyone around him. We quickly learned that once cognitive functions become affected, you are not only avoided, you are in a very real sense despised, because your very presence points out how fallible we humans really are. For some reason, keeping Tom home was to invite a psychiatric classification and when I didn't roll over and assume the victim stance, I was labeled as overtly controlling, unrealistic and finally, an extremist. I wondered when 'commitment' and 'obligation' became expressions of emotional decay.
Even though I prevailed doesn't mean I sailed through this experience on 'gossamer wings.' Like everyone else facing this care challenge I was also plagued with the self doubt, anger, frustration, outright despair and unidentified feelings of grieving that conspired to defeat us both. No one comes into this experience prepared for what is ahead and I was no exception. My decision to keep Tom home evolved as his illness progressed and as I grew in skill and confidence. The day dawned when I realized I had already been through the worst of it and his care needs actually became easier as his illness progressed. By the time he was bed-ridden we had a daily routine that both of us could depend on. That was when I realized our life wasn't about 'drudgery' it was about 'unconditional love.' The rest of it was about tasks, and information, options, and help, and the tasks were only tasks. Surprisingly, I found myself transferring skills I already had raising my children to my husband, and what do we give our children if it isn't unconditional love? We raise them with encouragement, appreciation, limits, and care. Do our Alzheimer family members require less?
I spent a lonely 10 years scrambling around to find solutions to the problems his illness presented. But in the end I managed to fit the pieces together, and like so many other caregivers I've met in my travels, I found a new way to appreciate life. The turnabout happened when I determined I wasn't a victim, overtly controlling, unrealistic or extreme. I rejected all those labels because they were offered by people who resided at too safe of a distance from our particular reality. Instead, I took charge of our lives. It wasn't until then that I could even envision the sanctity of the role I had taken on or see Tom's needs in terms of a disease process and not as an extension of who he was as a human being. I am by nature a stubborn person but I was also lucky in that I had Tom. He was never a defeatist; he was someone who took what life handed him and ran with it. I remember jogging with him up Madison Avenue in New York City, just after the book, "Do What You Like and the Money Will Follow," was released. Tom stopped by a book store window and responding to the title, he turned to me and said:
"You know, being successful in life isn't about doing what you like at all. Being successful in life has to do with learning to like what you have to do."
Those words became a life lesson for me, which brings me back to the point of this article.
- How do you find a sense of contentment and peace and love in the face of the horror this disease perpetrates on people, on entire family units?
- How do you feel any relationship to someone who can't communicate their needs, their wants, or their relationship to you?
- How do you develop any pride in accomplishing the tasks involved in this care experience when the world around you thinks you are crazy for taking on this challenge in the first place? After all, "They don't even know who you are!"
- How do you face this care challenge with someone you might never have had a close abiding relationship with in the first place?
The answer to that is this: You simply choose to do so.
Another Way to Die
This disease is not the result of some devastation hurled at us by an uncaring God. It is, in reality, nothing more than another way to die. It isn't a better or worse death than any other. It is what it is, a disease process which has nothing to do with the inherent essence of who we are as people if we are unfortunate enough to get it. The fact that this disease robs us of the ability to communicate our needs doesn't make those needs any less needful. The soul doesn't get Alzheimer's any more than it gets Cancer. The great reality of life is that we are all going to die someday, and although the vast majority of us would choose to die in our sleep, without pain, with our family relationships intact, our cognitive functions in order, and able to wipe our own bottoms, the fact is few of us will have that sort of death.
Most of us will need to be nurtured the way our children need nurturing and I for one hope and pray that I won't be made to feel I'm a useless burden to those who care for me. To feel helpless and unloved has to be a fate worse than death, and if you think "Our People" [loved ones with Alzheimer's Disease] are unable to feel those things because they can't communicate, you are so mistaken. Those of us who do the hand's-on, day-to-day care, know they respond to love in it's most unconditional sense the same way a small child responds to the unconditional love it's parent gives. That response is first developed when a child is born and it is the last thing the Alzheimer's brain loses when the person dies.
We look to find an inherent satisfaction in our child rearing with an expectation of accomplishment and joy in the process, and it follows that we tend to find these attributes because of that expectation. There was a time in history when we also expected to find a sense of accomplishment and if not joy, certainly peace or contentment in tending to our elderly and our dying. The 'Ritual of Death' was as important to human development as was the 'Ritual of Birth' and it was important for valid reasons. Life moves in a circle from birth to death and the circle has been sacred to indigenous peoples since the onset of time. The beginning segment of a life span was not to be revered and the ending segment reviled. Both were an essential part of the spiritual, emotional, and physical growth of all people.
That has changed. Death has become abhorrent and perhaps we are sorrier as a people for that change. The irony is that avoiding the care of the dying has also deprived us of a very necessary part of our spiritual and emotional growth and perhaps the caregiving experience is the missing ingredient to our becoming more a part of our world. To be there, to help someone through the last vestiges of life has to be the greatest gift we give, next to giving birth. Instead, we live in a world that worships the quick fix and we have trouble understanding that we can't experience the 'highs' in life if we don't also live through the 'lows.'
I once heard a Native American man speak about our place in the lives of our elderly. He began by offering "that all of us, if we go back to the ancients, came from tribal people. As tribal people, we were taught that rituals were good, they gave us structure, and meaning in life, and purpose, and they kept us in a place of regard and oneness with each other."
He went on to describe a young man in his tribe who decided to stop by the house of an elder woman known to his family and someone he had lost contact with over the years as he grew. While there he noticed that she was alone with no help. A few days later he dropped in again. Over time he found himself restructuring his life so that he could make his regular visits to her, often making repairs, bringing groceries and in general looking out for her. These visits became a 'ritual' both of them looked forward to, a 'ritual' that enriched them both. Then tying this parable to our lives, he said:
" Now when you have to spend Saturday helping Mom buy groceries because she can no longer drive herself, perhaps you can learn to see that task as a 'ritual,' as a beneficent gift given out of love and regard instead of a task that takes time out of your very busy lives. In that way you find a positive way through the changes that confront you."
His words had a familiar ring to them and then I recalled Tom's words, " to learn to like what you do in life." I made a concerted effort to see the tasks involved in his care as a creative exercise and a problem to be solved instead of the drudgery I was told to expect. Even diaper changing time became a 'ritual,' a chance to do the best diaper change anyone could do, the quickest, the most efficient, and the least traumatic for my Tom. Even in that I was able to find a sense of accomplishment. I realized something very important during my tenure as Tom's wife and caregiver:
"The tasks had to be done and I had a choice: I could do them happy or I could do them mad. Either way they still had to be done."
Allowing Joy to Happen
'Happy' fortunately won out. Approaching Tom's care from a place of love instead of regret made all the difference. Regret only reinforced my feeling like a victim, which was then too easily transferred to Tom. Love, on the other hand, elevated us both. It was the choice I had to make and it's the same choice you face. Finding the joy in caregiving has to do with setting new priorities, learning to value little steps, letting go of old ideals and expectations, and accepting life as it unfolds. Even in some of our darkest moments joy surfaced because I allowed it to happen. And it happened on what can only be described as profound levels.
- That is how you find a sense of contentment and peace and love in the face of the horror this disease perpetrates.
- That is how you develop pride in accomplishing the tasks involved even though the world around you thinks you are crazy for taking on this challenge.
- That is how you know it doesn't matter if they 'know who you are,' because you still know who they are.
- That is how you wipe the slate clean and begin a new relationship with your loved one, one that evolves out of love and acceptance instead of a life-time of disappointment and missed connections. There are amazing stories about caregivers and how they found a connection with their person they never thought possible.
I will be forever changed by the experience. My fear of death is lessened, I have no regrets about my life with Tom, and I am stronger and more content than I have ever been in my life. Tom died without pain, in his own bed, surrounded by the people who cared for him with his favorite music playing. If he knew nothing else when he died, he knew he was loved. As I look back on it, we should all be so lucky. He had as peaceful a death and as good a death as one can hope for, and in that I was successful. That was also part of the joy!
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Beverly Bigtree Murphy is a certified rehabilitation counselor and former caregiver to her husband who had Alzheimer's Disease. She is a Contributing Editor to ElderCare Online at http://www.ec-online.net and the author of "He Used to Be Somebody: A Journey Through Alzheimer's Disease Through the Eyes of a Caregiver."..