Shagam - An unintended journey: a caregivers guide to dementia

I wish to thank the following individuals for their support, enthusiasm, encouragement, invaluable comments, and patience to answer what some would consider too many questions: Libby Golden Hopkins, RN; Edward R. Fancovic, MD; Elizabeth Roll, PhD; Sam Roll, PhD; 4-Hills Book Club Ladies; assorted Facebook friends; Adela Johnson; Mae Green; Debbie Willis; Lauren Lockett; Dara Lockett; Rocky Stone; Barbara Shapiro; Carla Nichols; Hattie Johnson; Jeanne Johnson; Mary Ann Conley, PhD; Margaret Chu; Richard H. Rubin, MD; Dan Tanberg, MD; Ruth Dennis, LPAT; Susan Romano, PhD; Buck Dyck, FD; Agnes Vallejos, MBA; Velma Arellano, MA; Linda Seidel, PhD; Gerrie Dempsey, BSN; Lisa Hogan, PhD; Kenneth Winfrey, LMSW; and Jordan I. Kosberg, PhD, ACSW.

Of these individuals, I must give special thanks to Mary Ann Conley, Mae Green, Lauren Lockett, and Barbara Shapiro. These four women, with steadfast patience and enthusiasm, read every chapter and made comments based on their individual areas of expertise in psychology, law, editing, and the common sense one acquires over a lifetime of listening and observation.

I also wish to thank the numerous families and the people in their care who allowed me to intrude into their lives. Their candor helped all of us learn about the difficulties caregivers face and the range of emotions family caregivers experience.

I must also thank Jeannine Sukis, BSN and Certified Case Manager, and Diane E. Longeway, LMSW and Hospice Specialist, both of the University of New Mexico Hospital, for asking me more than once if I would write a book about dementia care.

I would be remiss if I did not mention the efforts of doctors Edward R. Fancovic, MD, and Francesco Standoli, MD. Dr. Fancovic was Dorothy's primary caregiver for the last few years of her life. In spite of the challenges, he was always patient, informative, and kind. Our family appreciates his efforts in helping to make things run as smoothly as possible.

Dr. Standoli provided Dorothy's care during her short stay in an assisted living facility. We will always remember him for his kindness, humor, and ability to gently guide Dorothy through the last stages of her life.

And to our caregivers, Carla Nichols, Hattie Johnson, and Jeannie Johnsonthank you hardly covers what you did for our family. Because of your patience and caring, Dorothy was able to spend all but a few weeks of her life in the home she loved.

I would not have survived this unintended journey without the quiet support of my husband, Richard Shagam. He was always there to lend a hand, subdue my frustrations, and offer words of solace. Then, when the demands of dementia care and estate management were over, I spent the next year and a half writing this book. All I can say is, what a good guy.

Our adult children, Leah, Joshua, and Michael, were part of this journey too. They listened, spoke wisely, and opened their homes to me when I needed a few days of respite. I hope their eventual journey with aging parents will be one of intent, humor, and fond memories.

It would be thoughtless of me not to mention Prometheus Books and the people who work there. Thank you for your support and efforts to make this book one we all can be proud of.

JYS, November 2012

Here you can find Internet links and additional references to helpful information, sorted by chapter.

CHAPTER 2

Baker, L. Aging and Memory: What's Normal, What's Not? Seniors Digest (SeattleKing County edition). June 1, 2010. http://www.poststat.net/pwp008/pub.49/issue.1355/article.5660/ (accessed September 18, 2012).

DeMarco, B. Doctors Suck at Diagnosing Alzheimer's. Alzheimer's Reading Room. September 23, 2011. http://www.alzheimersreadingroom.com/2011/09/doctors-suck-at-diagnosing-dementia-im.html (accessed October 2012).

Mild Cognitive Impairment. Alzheimer's Association. http://www.alz.org/dementia/mild-cognitive-impairment-mci.asp (accessed September 18, 2018).

CHAPTER 3

Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists. American Psychological Association and American Bar Association Commission on Law and Aging. http://www.apa.org/pi/aging/programs/assessment/capacity-psychologist-handbook.pdf (accessed September 19, 2012).

Dementia and Genetics. Dementia Today. http://www.dementiatoday.com/genetics-and-dementia/ (accessed September 19, 2012).

The Genetics of FTD: Should You Worry? Association for Frontotemporal Degeneration. http://www.theaftd.org/frontotemporal-degeneration/genetics (accessed September 19, 2012).

CHAPTER 4

Be WiseImmunize! A Message for Caregivers and Families. Administration on Aging, US Department of Health and Human Services. Updated September 28, 2005. http://www.caregiver.org/caregiver/jsp/content/pdfs/English_final1.2.pdf (accessed September 19, 2012).

Fact Sheet: Caregiver's Guide to Understanding Dementia Behaviors. Family Caregiver Alliance. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=391 (accessed September 16, 2011).

Rogers, R. G., J. Y. Shagam, and S. Kleinschmidt. Regaining Bladder Control: What Every Woman Needs to Know. Amherst, NY: Prometheus Books, 2006.

Small, J., G. Geldart, and G. M. Gutman. The Discourse of Self in Dementia. Aging and Society 18 (1998): 291316.

CHAPTER 5

Caregiving for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging. http://www.nia.nih.gov/Alzheimers (accessed September 19, 2012). [For copies of this publication, contact the Alzheimer's Disease Education and Referral (ADEAR) Center at 1-800-438-4380.]

Sollitto, M. How Can I Get Paid for Taking Care of My Elderly Parents? AgingCare.com. http://www.agingcare.com/Articles/how-to-get-paid-for-being-a-caregiver-135476.htm (accessed October 1, 2012).

CHAPTER 6

Family Caregiving: Work with Your Siblings to Keep Your Life, Family, and Sanity Intact! Family Caregiver Alliance. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2480 (accessed September 19, 2012).

Pierce, N. Helping Families Through Dementia Care-Related Conflicts. Social Work Today. May/June 2012. http://www.socialworktoday.com/archive/051412p18.shtml (accessed November 4, 2012).

CHAPTER 7

Eating and Dementia. Alzheimer's Society. http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1073&pageNumber=2 (accessed April 7, 2012).

Hayes, J., and S. Povey, The Creative Arts in Dementia Care: Practical Person-Centered Approaches and Ideas. London: Jessica Kingsley Publishers, 2010.

Scott, P. S. How to Solve Hygiene Problems Common to People with Alzheimer's and Other Dementias. Caring.com. http://www.caring.com/articles/dementia-alzheimers-hygiene-problems (accessed September 19, 2012).

I Remember Better When I Paint. YouTube video, 3:03. November 4, 2009. http://www.youtube.com/watch?feature=player_embedded&v=54AtoQVGfwU (accessed September 23, 2012).

Johnson, M. A. Nutrition: It's More Than a Meal. Alzheimer's Association. http://www.alzpossible.org/newsletter/Dementia%20and%20Nutrition%20Webinar.pdf (accessed September 19, 2012).

American Recipes. Retro Housewife. http://www.retro-housewife.com/american-recipes.php (accessed, October 17, 2012).

Twigg, J. Clothing and Dementia. https://www.kent.ac.uk/sspssr/staff/academic/twigg/clothing-dementia.pdf (accessed September 19, 2012).

CHAPTER 8

Antipsychotic Medication Use in Nursing Facility Residents. American Society of Consultant Pharmacists. https://www.ascp.com/articles/antipsychotic-medication-use-nursing-facility-residents (accessed October 30, 2012).