We have had numerous road trips to central California since March 2016 to help elder family members. But in May, we brought the Aunt and Uncle home with us. During this time, our focus has been on their needs and helping them regain some of their mental and physical strength. The care of elder family members was not new to us, but, and that is a big but, everyone is different, and the experience was vastly different from our time with the Mother-in-Law.
I caught myself wondering if there was an owner’s manual to cover real life challenges for both parties of this story. Anne, a friend of ours in Texas said to me – “girl, you need to write a book on this.” Anne is now approaching her 50’s, and lives with her aging mother; she has lived through a multitude of life changes with family and clients. “No one has written about what it is like in the trenches,” she said to me…. “It is easy to see why family just dumps their older parents in care facilities, that way they don’t have to deal with the messy parts of aging.”
Some of the messy parts of aging involve adult diedies (diapers) as my Uncle calls them, then there is the other favorite “nose papers.” I learned the importance of providing my Uncle with a masculine carrier for his emergency needs – no man of his generation is comfortable carrying a flowery bag or shopping bag into a public restroom. It is hard for them to maintain their dignity when they are faced with incontinence, especially when they are slower moving and unstable. The length of time required for them to navigate to the bathroom, clean, change and straighten themselves is exhausting. The need to remain independent runs deep in many elder family members and the barging-in of an inpatient caregiver, to help them hurry up, in the bathroom is mortifying.
I selected a small easy to carry backpack in black for my uncle with a larger area for the diedies and flushable wipes. The outer smaller pocket was perfect for the medication or test kit he would also need, and the mesh side pockets kept water and smoothy bottles easy to access. Now he can walk into a public area prepared without embarrassment. Oh and I also stocked it with pocket-sized nose paper (kleenex) for the weepie dry eye or blueberry stain on his nose.
We learned the importance of having a trash can large enough to handle unmentionables with a lid in the home bathroom. This allowed for odor control, privacy, and convenience.
Change is never easy; it is especially hard for the elderly who have cognitive elasticity challenges (memory and anxiety), the change of purses, wallets, coats, shoes or suitcases may place your elder family members in a tailspin. The Aunt has used a black leather purse for decades, a well-meaning family member gave her and insisted she uses a bright flowery summer bag. For two weeks the Aunt searched each day for her purse where she knew all her valuable information and stuff was kept. Each day we would retrieve her new bag for her and remind her this was hers now. The anxiety was evident and potentially unnecessary. One day she couldn’t remember where her little Yorkies leash was (it was in her belly bag), it took until the next day for her to recover. For the first two weeks, the Aunt believed she didn’t have any clothes to change into because the suitcase in her room was green. Her suitcase was red, once we learned this, we quickly changed her clothes into a red suitcase we had on hand– she was fine after that.
Sundowners syndrome: making changes later in the day can be the hardest. For most of us, sunset isn’t a problem; it is a time to unwind and relax. For family members with Alzheimer’s or dementia, it can be a time of increased memory loss, confusion, agitation and even anger. Witnessing this increase in symptoms of disorientation at sunset can be troubling, painful, frightening and exhausting for family and caregivers.
Common Sundowning Triggers:
Too Much End-of-day Activity: Some researchers believe the flurry of activity toward the end of the day may lead to anxiety and confusion. We personally saw this to be true.
Fatigue: End-of-day exhaustion or suddenly the lack of activity was also a contributor.
Low Light: As the sun goes down, the quality of available light may diminish, and shadows may increase, making vision even more challenging.
Internal Imbalances: Hormone imbalances or possible disruptions in the internal biological clock that regulate cognition between waking and sleeping hours is also a principle cause.
Winter: The onset of shorter days exacerbates sundowning, we also saw the changes in weather from sunny to stormy increased symptoms. Depression is a major challenge for those with memory issues.
Grace and Grit: Insights to Real-Life Challenges of Aging for Adult Children and Their Parents By Fritzi Gros-Daillon
How Hard Could It Be?: A Caregiver’s Story By Margaret Sheehan
How To Fold Superman’s Cape: A Woman’s Guide To Elder Care by James Burns Jr.
The complete elder care planner: For caregivers of aging parents or other family members by Joy Loverde
To a grace-filled elder life transition.