My mother had only been diagnosed with Alzheimer's about a year earlier, even though she was moving quickly through the middle stages of the disease. As someone used to making her own decisions and organizing her life into neatly planned days on the calendar, she became very indignant when her best laid plans came unraveled. As I had predicted, the cardiologist listened politely to the description of her knee pain and sent her down the hall to the orthopedist.
I chastised her and suggested that next time I would be happy to make appointments for her. That idea did not sit well with her and the silence on the other end of the phone told me that she was annoyed and hurt by this idea. When her sobbing subsided she voiced what doubtless many in her position had said before, "I feel like you are the parent now."
This admission carried with it many implications, not the least of which was the thought that she had become a child. That moment was so terribly difficult for us both. My mother felt that she had lost her identity as a parent, as an adult, as someone capable of making her own way through life. I felt it was necessary for me to make decisions for and take action on behalf of someone who had at one time had been my mentor, guide, and teacher. The parent had become the child, and the child had become the parent.
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Although parental roles may be reversed between a parent with Alzheimer's and their adult daughter or son, the parent has, in fact, not become a child - perhaps, childlike in their ability to reason and understand complex relationships - but, he or she is certainly still worthy of esteem and respect as one's parent. "Honor thy father and mother" has never been more appropriate than at this point in a family's life.
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“A Bandaid for the Caregiver” is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities. In each difficult moment there lies an opportunity for love.
Journey with courage,
Elaine
Journey with courage,
Elaine
THE BANDAID BOX…
Armed with a time-tested love between you, you and your parent can not only meet the challenges of Alzheimer’s, but grow closer because of it.
“Love bears all things, believes all things, hopes all things, endures all things.” ~ I Corinthians 13:7
“Youth is the gift of nature, but age is a work of art.” ~ Stanislaw Lem (1921-2006)
STAY ACTIVE…
One of the keys to managing difficult behaviors in Mom is to stay active. When I first began writing this blog, I suggested ways to keep Mom busy with pre-school puzzles and flashcards. I should have taken a cue from my mother herself when she chastised me for trying to entertain her with a reading from “Winnie, the Pooh.” She reminded me that she was not a child, and I quickly switched over to a story about life on a houseboat on the Mississippi. I am not certain that she understood the houseboat story, but she was much happier than while listening to the adventures of a teddy bear.
Although activities may need to be increasingly simplified as your parent progresses through the disease, strive to offer activities as close to his or her current age and interests as possible. Instead of giving Dad a toy toolbox to play with, give him a small set of real tools and nuts and bolts to manipulate. Find adult puzzles with fewer pieces and on a difficulty level that changes as his abilities change.
TIME OUT…
To treat someone with respect while he or she is behaving anything but mature is infinitely difficult. We find ourselves wanting to yell back at Dad, to shake some sense into Mom, or to just turn our backs and walk away. At times, it is quite appropriate to walk away for a short bit of respite for yourself. Treat yourself to a time out – time away for your own renewal.
Respite care for Alzheimer’s individuals is a way to obtain a much needed break from the constant demands of caregiving, and often means moving Mom into a temporary fulltime care facility while the caregiver remains at home to recoup, catch up, and renew their energies. However, Mom may not react well to being moved out of the surroundings and routine with which she is familiar and finds comforting and safe. Other respite options include senior day care centers and
Consider putting yourself in respite, instead! Find friends or family members who could stay with your mother while you take time out for an evening with friends. For longer overnight respite breaks, look into agencies that provide in-home caregiving services around the clock. Then go ahead and book a spa vacation or a weekend at the shore.
(For helpful information on making the right choice for your situation, read further in “Respite Care: finding Out What is Best for You.” http://www.alz.org/national/documents/brochure_respitecareguide.pdf)
Gentle Reminder:
None of us has an endless supply of loving care and patience. Give yourself permission to enjoy some of your own personal “Time Out.” It really is OK!
IN THE NEWS…
Respite Care Helpful But difficult Option
Potential For Blood Test To Diagnose Alzheimer's In Earliest Stage
CAREGIVING TIPS…
Use an age appropriate communication style. Speak in normal tones and avoid baby talk. Call Dad by the same names and terms of endearment that your family has always used rather than resorting to calling him “sweetie” or “honey.”
Engage in conversation involving a balanced mix of statements and questions. Try not to quiz Mom about your name or what she had for lunch. Listen with your ears and heart and pace the dialogue accordingly. Let Mom’s conversational ability that day be your guide.
Give Dad the benefit of the doubt. He will continue to have moments of clarity and deserves the respect due an adult who has parented children, held a job, and been an active member of society. Information and feelings from the past will shine through at the most unexpected times.
(Read more in the article “What Happens when the Child Becomes the Parent?” http://health.howstuffworks.com/wellness/aging/elder-care/child-becomes-parent.htm)
ABOUT ALZHEIMER’S…
We all recall the first time our parent sat us down and gave us “the talk.” Now the table may be turned around and we are taking the role of the parent to have “the talk” with Dad. When the diagnosis is first made, family caregivers often take the lead in discussing financial and legal arrangements that must be made for long term care and financial security. The advantage of having this discussion early on is that Dad can still participate in making his wishes known for what is likely to be a 15-20 year journey together.
As a parent would research a disease which strikes their child, take this role on yourself now as your parent’s caregiver. Learn all that you can about Alzheimer’s disease, the changes that will occur in your parent, and how to approach your new role as a family caregiver. Be judicious in how much information you share with Dad, perhaps seeking guidance from a pastor, social worker, or doctor in how to prepare him for the prognosis.
An important part of “the talk” is to encourage Dad to share the diagnosis with his close friends and family. For the parents of baby boomers, this may be a difficult decision to make as Alzheimer’s still has a lingering reputation as something of which to be ashamed. However, as the general public becomes more educated about Alzheimer’s as a disease process just like heart disease or cancer, this will become easier for many to acknowledge. Help Dad understand that his friends may have noticed his memory lapses and will be glad that he is sharing this information with them. An added benefit is that his close friends and family will become a part of his support system.
(Read more: “8 Things to do When You First Learn Your Parent Has Alzheimer’s” at http://healthyliving.msn.com/diseases/alzheimers-disease/8-things-to-do-when-you-first-learn-your-parent-has-alzheimers-1 )
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