There is no cure! That is hard to hear, but it is the truth.
As the Family Caregiver Support Specialist with the Sampson County Department of Aging, I listen to many family caregivers and professional caregivers, but I never give false hope. I am always straight up with the caregivers I speak with. Some may think this is harsh, but I want them to fully understand things will not get any better in the life of the person living with dementia. It is imperative that the caregiver plans and prepares for when times get difficult and they will get difficult. You need to build a network of support.
I want to talk about the second most common progressive condition of dementia, and that is Lewy Body dementia. Remember Alzheimer’s is the number one condition of dementia. Lewy Body dementia is tough to diagnose. According to health.facty.com, Lewy Body sometimes develops alongside Alzheimer’s disease and is very similar in its symptoms to Parkinson’s disease. Parkinson’s disease symptoms are resting tremors, slow movement, stiff or rigid muscles, especially of the arms, legs, neck or torso and trouble with balance or falling.
According to the Mayo Clinic, Lewy Body dementia is characterized by the abnormal buildup of proteins into deposits known as Lewy bodies. This protein is also associated with Parkinson’s disease. People living with Lewy bodies in their brain often have the plaques and tangles associated with Alzheimer’s disease. The Mayo Clinic further states Lewy Body dementia is progressive and some of the complications are aggressive behavior, depression, increased risk of falling and possible tremors. People may experience visual hallucinations and changes in alertness and attention. Death, on the average occurs about eight years after symptoms start.
I work with a caregiver whose husband is living with Lewy Body dementia, Parkinson’s disease and diabetes. She handles things well, however there are times that she finds things extremely difficult. She is certainly encouraging when she comes and shares with us in our support group meeting. I cannot begin to imagine what she goes through in the course of a single day.
I wrote not long ago about how difficult it is for couples to go on this journey. When couples have made plans after they retire to travel, to go on a cruise, to take dancing lessons, to join the “Shag Club,” to spend more time with their grandchildren and find themselves not doing any of those things they have planned to do. They find themselves lost, depleted and yes, at times desperate. Dementia has no boundaries, it affects everybody!
One of my caregivers at our last support group meeting shared with us what she has learned in her caregiving role. She said in the midst of all the confusion, the aggravation, the frustration and the helplessness, she found a peace! How so I ask her, she went on to express how she has slowed down and really took time with the person she was caring for. How simple things mean so much, the warm sunshine on her face, the fresh air, the walk she takes with the person living with dementia. She has learned not to be in a hurry, to take her time and to be patient. She has a bed in the same room of the person she is caring for and at night when they retire for the night she says, “I love you” and the person living with dementia says back “I love you”.
Remember, you are the one with the good brain, you are the one that can change! Do not focus on what your loved one can no longer do, but focus on what they can still do. When you smile, they will smile. Hope you have a “Best Day Ever”.
Lesia Henderson is the Family Caregiver Support Specialist for the Sampson County Department of Aging.