In my Once I Was eBook #4, I include a chapter on the role I experienced as a caregiver for my aging mother. I felt alone, helpless, confused, unprepared and unable to provide adequately for her needs. As caregivers, we sometimes become so involved in the day-to-day efforts to keep things going we may forget to let others know we need additional assistance with providing care, or just need a break from the routine of caring for someone. Through the years my mother went through various stages as her dementia increased to include:
Memory loss: cannot remember what day or year it is or how old she is, etc.
Difficulty performing familiar tasks: how to use the phone, TV remote, stove, etc.
Poor or decreased judgment: dress inappropriately, wearing several layers of clothes, refusing to put on clean clothes, etc.
Misplacing and hoarding items: money in drawers and in envelopes under her bed; hoarding newspapers, TV guides, chewing gum wrappers, popsicle sticks, paper towel empty rolls, letters, cards, candy cans/boxes, phone books, catalogs, plastic juice and milk cartons, etc.
Refusing to take her medicine.
Changes in mood and behavior: rapid mood swings from calm to anger for no apparent reason, belligerent, physical and cursing at me (my mother never cursed before this disease).
Changes in personality: extremely confused, suspicious, fearful and seemed to rebel being dependent on me—accused me of trying to be “her mother.”
Loss of initiative: became passive, sitting in front of the TV for hours, sleeping more than usual and not wanting to do usual activities.
Disorientation to time and place: became lost in her own neighborhood; forgot where she was and how she got there and not knowing how to get back home. Suffered from “sundown syndrome” each evening by climbing over the fence and saying that she was going home. She tried to leave our house to go to the past location where we used to live.
Body hygiene and cleanliness: refused to bathe, wash her hair, put on clean clothes, wear her false teeth, etc.
Alzheimer caregivers report that they frequently experience high levels of stress to include the following: denial, anger, social withdrawal, anxiety, depression, exhaustion, irritability, lack of concentration and health problems (all of which I experienced during my time as a caregiver). After 10 years as a caregiver I became "burned out" experiencing fatigue, stress, anxiety, and depression. I also felt guilty if I spent time on myself rather than on my mother. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able -- either physically or financially. I finally had to resort to placing my mother in a nursing home where she is presently receiving the proper care that I could not adequately provide on a daily basis. At first I felt guilty for doing such, but in the end I had no other choice if I wanted to live free from stress from trying to do the impossible.
I know many of my friends and family who have been thrust into the role of a caregiver which has abruptly changed their life. Every caregiver case is different, so I would like to include personal stories from my readers who are or have experienced this stressful role for a loved one. I listed some questions as a guideline you could use to respond to when sharing your story and need your permission to include them in my next book. Simply write what you feel.
1. How did you know when you really became a caregiver? When did you discover that it was time to start taking more control over a relative's life -- and to start taking control away?
2. How has this role affected you and/or your family?
3. What physical, emotional, and behavioral warning signs did you experience that led to caregiver stress?
4. How do/did you manage to cope with this stress from helping your love one?
5. Did you seek caregiver guidance from your local Area Agency on Aging, caregiver support groups, local senior centers or adult day cares, assisted living facilities, personal care homes or nursing homes?
6. Did you consider the legal and financial implications you face as a caregiver? Can your love one afford nursing home care? Do you have power of attorney? Does your love one have a will?
7. How has your new responsibilities caring for someone else affected the rest of your life?
NOTE: You may send me an email with your story included in an attached Word document that I can include in my next eBook. I will maintain contact with you by email in reference to your input and how I plan to write it in my book and obtain your approval for the final editing.
Please share your caregiver story with others who may be experiencing this dilemma…you never know who you may help in the long run.
My email: Lenora1216@aol.com.
Thanks and looking forward to your input. Luv, Lenora
