FAQs & Topics

FAQs as garnered from SWIMMING SOLO talks, readings, signings.

These FAQS can provide topics for events. To address them, Susan Rava reads relevant sections of SWIMMING SOLO and discusses her lived caregiving experience.

 

ABOUT OUR 4 PARENTS

1. Please talk about the background of the 4 parents?

2. At what ages, did each of the 4 parents develop Alzheimer’s disease?

3. Did you have any inkling about AD in either family’s history?

4. Did any parent know, admit, or understand that he or she had AD?

5. What made you go to the doctor the first time about Paul?

6. Was “sundowning” an issue? How did you deal with it?

7. Was any parent with AD a menace to other people? In what way? How did you cope?

8. What was the role of the 2 spouses as caregivers (Silvia for Paul; Dorothy for George)?

9. What were the tipping points or precipitating crises for nursing home placement?

10. Did the AD patient him/herself seek placement in a home?

11. Over the course of AD, how did you keep in mind who the parents had been?

 

ALZHEIMER’S DISEASE & MEDICAL ISSUES

1. Can doctors determine AD other than by a brain autopsy?

2. How do doctors make an AD diagnosis?  How did they make your family diagnoses?

3. How long is the course of the disease?

4. What was the spectrum of agitated behaviors with your parents?

5. How do you and your husband deal with genetic issues?

6. What’s the difference between senility and AD? Between dementia and AD?

7. Describe the final stage of AD as you experienced it?  How does a person die from AD?

8. Are men or women more at risk?

9. Describe some different characteristics of the disease as you experienced it.

10. Does AD run in families?

11. What are the odds of 4 old people in 2 families having AD?

12. Did AD impact each parent the same way?

13. How long was each parent afflicted?

14. Are there any medications for AD?  Did your parents take any? Which ones and how effectively?

15. Does AD afflict any particular ethnic group, any gender? Does it always include behavior or personality changes?

16. Is there a correlation between hearing loss and Alzheimer’s disease? How might one impact the other?  Did you experience the combination of hearing loss and Alzheimer’s in your family?

17. What is the role of hydration in Alzheimer’s disease? How does dehydration affect Alzheimer’s patients?

18. What good does AD research do if there’s no medication and no cure for the disease?

19. Over the course of your caregiving, what changes have you seen in medical and caregiving approaches to AD?

 

CAREGIVING

1. What did it feel like to parent your parents? What were your parents’ perceptions of you as your roles shifted?

2. Did your parents recognize you, know you, call you by name?  If not, at what point did that change? How did that affect your caregiving?

3. Did you have to place any of the 4 parents in nursing homes? For how long, did each parent live in a home?

4. How do you stop someone with AD from doing something dangerous?

5. How do you take away driving privileges?

6. What did you do about correcting your parents’ mix-ups and mistakes?

7. What sources and resources are there for home and case assessment? Cost?

8. Did you have home health care before going to nursing homes?

9. What was it like to make the nursing home decision?

10. How did you—Susan and John—get along with the less ill spouse who was caregiving? Were there tensions?

11. Were you happy with the care received in nursing homes?

12. Were your parents aware of love even as they were losing connection?

13. Did you find that one child or sibling bears most of the caregiving responsibility?

14. What kinds of legal and financial arrangement had been made for the 4 parents?

15. Many of us have tried legally and financially to make our lives easier on future caregivers. What else can we do so as not to be a burden?

16. What do you do about patients’ heartfelt desire not to be a burden?

17. How effective did you find advance directives?

18. Were the patterns of coping similar in both families?

19. How do spouses or partners deal with the ‘till death do us part’ vow?

20. How did you keep out-of-town family members informed? And how did they receive your efforts?

21. As a caregiver, what would you do differently?

22.  What do you mean when you say to caregivers to “take care of themselves?”

23. How did you find relief from caregiving?

24. What advice do you give others facing caregiving issues?

25. Did you get the emotional support you needed? Where did it come from?

26. Did you get counseling?

27. What community resources did you use?

28. What can anyone say to someone going through AD caregiving and/or dealing with a partner or spouse who’s afflicted? What can one do to help?

29. How would you explain to young children, i.e., elementary school age, about Alzheimer’s as, for example, preparation for a visit to an elderly relative?  Are there Alzheimer’s symptoms which you would find inappropriate for children to witness?

 

SUSAN & JOHN’S STORIES

1. Do you think about the possibility that you and John may both get AD?

2. What do you do to try to avoid getting AD?

3. What would you have done if you’d known the 4 parents had an AD likelihood? And what do you do knowing that all 4 had the disease?

4. At what point, did you emerge from the grieving process and caregiver mentality?

5. How did you balance love and duty as caregivers?

6. How did your faith hold up?  What “faith” resources did you seek out, if any?

7. What were your feelings when the last parent died?

8. How did your relationships with your siblings evolve and end up?

9. Where and how did you find support?

10. How did you maintain your resilience?

11. What impact did your caregiving have on your marriage?

12. How has your family’s AD battle changed you? What did you discover about yourself and your family?

13. With hindsight, how do you view the progression of Alzheimer’s and those afflicted with it? Has your perspective on the disease changed over time and how? In what way has time and distance from caregiving allowed you to recognize that the personhood of each parent endured even with disease?

 

BOOK

1. Why did you decide to write this book?  Why did you decide to “go public” with it?

2. How long did you keep the journals? Were there separate ones for each parent?

3. How did you determine and shape your literary approach?

4. How long did it take you to get the book together from the journals?

5. Was writing SWIMMING SOLO “cathartic or therapeutic” or was it painful to revisit the period constantly?

6. Is the book a downer?

7. What impact did writing SWIMMING SOLO have on your grieving and on your psyche?

8. How does your husband feel about his life being out “out there?” And his family’s life too?

9. If you changed health care personnel names and descriptors, how do we know you are telling the truth about them?

10. What effect has the book and your various events had on you?

 

These questions are garnered from a wide variety of more than 25 events sponsored by or at:

  • Public libraries
  • Retirement centers and senior programs
  • Washington University Summer Writers Institute
  • Schools of Social Work at Washington University & the University of MO/St. Louis
  • Book stores
  • Discussion groups and book clubs
  • Church groups & Schools of Theology at the University of the South (Sewanee, TN) & Seattle University

Copyright 2012 by Susan Rava. All rights reserved.

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