Caregiver Series: Through Her Eyes

Hello Family and Friends,

 

I am so excited to have been asked to write blogs for Gospel against Aids (GAA)  with this being my first I would like to give honor and thanks to God, GAA, my friends, and family for allowing me this opportunity of sharing information and inspiration, please enjoy this blog regarding caregiving.

 

      “Are you living or just existing?” This notable line from the movie The Family that Preys by Tyler Perry caregivers may feel this way at times because of the high levels of stress caring for another person can bring. Family caregiving is complex, confusing, complicated, and counter-intuitive. One size does not fit at all. We do not have a caregiving DNA and it is far from intuitive. Few go to school to learn how to be family caregivers. Therefore if it isn’t genetic intuitive or learned, it should come as no surprise that family caregivers “don’t know what they don’t know”.  For example my dad was diagnosed with having dementia before we relocated to Arizona from Michigan, however he never told us about this diagnosis.

     Did we suspect there might be some memory issues yes, so what we did would be to leave various notes for him throughout the house in strategic places to assist with some memory lapses. While he did appreciate this attempt, however his pride would not allow him to accept this type of help he state it made him appear weak since he was after all the man and the head of our family. We tried different techniques that would not give the appearance to his lack of memory.  My mother became that keeper of assisting my father with his lack of memory; and seeing the many changes of his personality.

     Did you know that the term caregiver did not become known until 1966; there are many synonyms to this word such as carer, caretaker, and guardian. Caregivers often do not get adequate personal time, it is important for caregivers to take care of themselves both physically and emotionally. Taking time for yourself is not selfish but helps to improve your capacity of care for your love one. Looking back on this thought I wish I had taken my mother out more, however on the few times that I was able to get her to go out she felt a sense of selfishness on her part for not being there for my dad. Caregivers may not ask for the help they need to provide care for their loved ones and to take care of themselves.

     When I suggested to my mom that we could join a support group so that we could learn more about this disease and how we could be more affective in our approach to help my dad with his memory lapses. My mother stated that she did not wish to join a support group in her local area because she didn’t want any of her neighbors to know about dad’s illness, she did however, go online to WebMD to ask questions about the disease and suggestion on how to care for someone with this illness. She felt that love was the best support of all even when my father would yell at her or call her names for no apparent reason, mother would remind me of first Peter chapter 4 verse 8 which read like this “above all things, have intense love for one another, because love covers a multitude of sin”.

     Many caregivers expect their involvement to have a positive effect on the health and happiness of the person. This statement brings to mind a time when I offered to drive my parents out of town to handle some business affairs my father was reluctant to accept my help but relented and allowed me to drive them out of town. As we began our journey to Mississippi we stopped at a rest area in Texas where my father insisted that he would drive, I reluctantly gave him the keys as he began to drive his speed was very sporadic as dark began to settle in my dad’s vision at night became slightly impaired, he became agitated because he could not read the signs as to which direction we needed to go when I offered as to which direction he needed to go or if he wanted me to drive these offers were met with resentment and hostility which made me shut down and not say anything else. I allowed my father to go around in circles for about 15 minutesuntil my mother asked me to please tell her which direction they needed to go which I did and my father listen to my mother recite what I had said previously.

     Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical, and spiritual health. The demands on a caregiver's body, mind, and emotions can easily seem overwhelming, leading to fatigue and hopelessness -- and, ultimately, burnout. My father drove all night to our destination exhausted but proud that he had driven there, my mother and I physically and emotionally drained from the ride because of the near misses on the highway of other vehicles we each silently thanked God for our arrival, and set a plan to speak with the family members there to talk with my dad to allow us to take turns on driving on the return home.

Rosalyn Carter, former First Lady, said, "There are only four kinds of people in the world – those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who need caregivers. As I reflected on this quote from the former First Lady, I felt that if we had a better understanding of dementia we could have probably been better prepared as to how we could best assist my dad through this disease. I believe by understanding, planning, and acceptance families who are caregivers need to research resources that can offer the best help through the process. We lost my father in October 31st of last year in a car accident all because we didn’t want him to lose his independence by taking the keys from him.  

 

The lessons I have learned regarding this period caring for my parents was the frustration and isolation I felt often times alone, and that no one would understand the amount of stress and pressure I was under for my mother to understand and accept that my father was not getting better but he was almost to the point that she would not be able to handle him. Frustration is a normal and valid emotional response to many of the difficulties of being a caregiver. While some irritation may be part of everyday life as a caregiver, feeling extreme frustration can have serious consequences for you or the person. As a caregiver of someone with dementia, you face many uncontrollable situations.  Behaviors often associated with dementia, like wandering or asking questions repeatedly, can be frustrating for caregivers but are uncontrollable behaviors for people with dementia.  I have also learned that I cannot take on all the responsibility for the care of my parents; I should have had my children involved and told my sister’s more of what was going on here. I also have learned some of the warning signs of frustration that I would like to share.

  • shortness of breath
  • knot in the throat
  • stomach cramps
  • chest pains
  • headache
  • compulsive eating

Knowledge is powerful! Seek the knowledge! Use the knowledge! Learn from the knowledge!  I certainly have. Here are a listing of resources that I hope will be of assistance. Until next time!

·         Caregiver SOS

·         1-866-390-6491

·         Website: http://caregiversos.org/

·         Eldercare Locator

·         National Association of Area Agencies on Aging

·         800-677-1116

·         Website: http://www.n4a.org -or- http://www.eldercare.gov

·         AARP

·         800-424-3410

·         Website: http://www.aarp.org

·         Aging with Dignity

·         888-5-WISHES (594-7437)

·         Website: http://www.agingwithdignity.org

·         Alzheimer’s Association Caregiver Center

·         800-227-7294

·         Website: http://www.alz.org/care 

·         Caregiver.com

·         800-829-2734

·         Website: http://www.caregiver.com

 

Ms. Ed'ee