Alzheimer’s Disease! We Were Clueless
We didn’t have a clue how long, nor what the toll would be, by the time we reached the end of the road that began when the neurologist told me he had tested everything he could, and was fairly sure that Mom had Alzheimer’s disease. Dad had asked that I not tell her if Alzheimer’s was the diagnosis, so I tried to make light of it and told her it was only a possibility.
Mistake Number 1
We clammed up, gritted our teeth, and determined to just get through the days.
Mistake Number 2.
We didn’t make a plan—that was Mistake Number 2. Back in the 1970’s when we started that walk down that road, there wasn’t much in the way of research, education, support or even statistics about dementia. And few realized the toll these diseases could take on family caregivers.
Mistake Number 3
Dad thought he needed to deal with it all himself. He gave up recreation and time with friends, and grandkids. His days were stressful. He struggled with depression and felt guilt and anxiety when he did leave Mom’s side. Always financially prudent, he rarely spent the money he had available to hire caregivers until later in the game when he was wearing out. His world shrunk to the house and the car rides he took Mom on for something to do.
Mom’s world shrunk right along with his. She was the social one who loved doing things, talking to others, laughing with friends, but we didn’t know how to give her the socializing that she could still enjoy and needed. Her children didn’t live in the area and she was often afraid of “that gentle man” who was always there telling her what to do.
The caregiver who tries to do it all sets themselves up for isolation, stress, depression, health problems, and for their loved one, creates isolation, sadness, anxiety and often a more rapid progression of the disease through lack of stimulation.
The family caregiver and the person cared for both need a break from each other. Often in the mind of someone with dementia the caregiver spouse becomes the one to resist, and the caregiver child is still their child, not their peer or their friend. A huge difference can be made if others are allowed to give the caregiver needed respite time and the person cared for a social outlet of their own. Willing family members and hired caregivers can provide beneficial help.
Even better would be an option that wasn’t available to my parents: a socially active adult daytime care center where the person with dementia can be engaged in games, art, music, dance, conversation or outdoor activities, modified to meet their abilities. An Adult Day Care Center can take part of the burden off the family by providing a safe, fun space for a few hours or all day, and where they can interact with peers who become friends.
The costs are usually surprisingly reasonable and there is often financial help as well. Mom would have loved being somewhere like this for part of the days and Dad would have had some worry free hours to either take a nap at home or do errands or see friends and replenish his energy and vitality.
Don’t make the mistakes we made! Open the discussion, make a plan, do the research and get help by pulling together as a team with specific responsibilities. Find out who and what is available in your area. Guilt, depression and lack of finances often get in the way of meeting the needs of both the family caregiver and the person with dementia. Meet these head on and through good planning, creativity, research, and discussion these caregiving years can often be joyful.
by Anne Haynes, CNA Program Coordinator, Daybreak Center
Anne Haynes is the Program Coordinator for DayBreak Center, an adult daytime care center and a program of Sandpoint Area Seniors, Inc. She has worked as a Certified Nursing Assistant (CNA) for over 20 years in care facilities, home health and hospice, and in private homes. Anne especially enjoys working with people with dementia. Call Anne at 208-265-8127 for more information about DayBreak Center.