write, rite, right: HAWMC Day 9

Day 9: Caregiving
The prompt asked for folks input as to what they wished/are wishing they did “right,” as a caregiver. For almost 20 years, I was my mother’s caregiver with the level of care increasing with her age and physical and mental decline. What follows is another one of my lengthy posts; writing what I finally “did right” in my mother’s estimation, and passing along some suggestions based upon our troubled and troubling relationship.

Although my father had been in dangerous places during dangerous times and had open-heart surgery, all we had when he died expectantly, was a 40 year old will, drawn up during the six weeks between my parents’ marriage and my father leaving for Korea. There had never been any discussion of end of life nor after life care. So, we consulted with the funeral director as to what folks usually did, and followed the most of the protocols of the community.

My mother was very clear about what she wanted in terms of end of life care. No efforts or interventions to keep her medically alive and, after death, cremation and interment of her ashes next to my father. No visitations, no funeral service, no graveside gathering, no flowers, no family, no fuss. And, we followed her wishes with two exceptions I don’t think she would have minded. Her favorite niece sent a floral arrangement for the cemetery on behalf of herself, my aunt, and family. When mom’s best friend died, about 10 years before my mother, her 2 daughters had adopted my mother and vice versa. I invited both to the graveside, and one gave a brief eulogy.

I was able to fulfill her end of life wishes because she was very open about the subject, and often brought it up. We made sure her will was up to date; the appropriate things were in both our names, I had power of attorney and was the executor of her will. Important papers such as her will were placed in a safety deposit box. I wrote a draft of an obituary so she could read it over and suggest corrections, additions, etc. I made a list of what would need to be done, folks to contact, and so on.

I know it’s grim, morbid and something that often isn’t easily brought up and discussed, but if you, as a caregiver, are aware of the person’s end of life care and wishes, you can then honor them. I realize that these kinds of issues can tear a family apart before and after the person’s death. Should you feel there will be problems, you could consult a lawyer, a funeral director, accountant – whatever professional can help you with your concerns. Or, if you are the person who needs the caregiving and would like things to be done a certain way, you can make your wishes known in advance.

My mother and I discussed this while she was still capable of making her own decisions. As she descended into dementia, having already had this discussion many times, and with power of attorney, I was able to make sure her wishes were followed. The difference in experience between my father’s and mother’s deaths highlighted to me that, however hard it is as the caregiver to have

This list represents some of the things that, as a caregiver, you might want to discuss with the person (and the family if appropriate). Of course, each situation has its own set of circumstances, decisions, consultations, etc.

Please remember that I’m not a professional/authority on these issues. There are some common themes in these situations, for example, having a will; other points come from my experience (and the experiences of some other folks). It might seem strange or morbid to have these discussions, but based upon the physical and mental health of the person needing care, in terms of end of life/after life care, and end of life procedures. There are many professionals with whom you can discuss your concerns or protocol.

Tim Sullivan's funeral  (LOC)
Tim Sullivan’s funeral (LOC) (Photo credit: The Library of Congress)


  • a living will (or similar document) concerning issues such as the medical extension of life
  • designate who has power of attorney
  • have an up-to-date will with competent executor(s), and clear directions as to who gets what
  • all important documents such as a will and deed are together in a safe location
  • an understanding of any cultural/religious practices the person wants included
  • any visitations/wake, open or closed casket, ashes at funeral, pall bearers
  • a list of who to contact regarding the death (and what legal, financial, etc. will need to be addressed)
  • what needs to be done legally (i.e. reading of the will)
  • any special wishes, etc.
  • donations to specific (or particular) charities rather than flowers?
  • your standing as care-giver defined legally (i.e. what you have the authority to do), as well as in relation to family and community. What are your “obligations” as caregiver?
  • a sense of how the person’s wishes will mesh with the feelings of family members and yourself

My mother complained constantly that I didn’t do things right as her caregiver. I followed her end of life care instructions. At last, I did something right.


HAWMC 2013: can I continue?

Heffalump and Woozle Band
Heffalump and Woozle Band (Photo credit: Peter E. Lee)

The prompts for HAWMC are brilliant, and folks have responded with exceptional posts. There is a definitely strong dynamic within the health blogger community; folks who are advocates/writers for their particular chronic illness.

I was mostly going to focus on chronic pain; the bipolar 2 disorder is a newer diagnosis, not a new set of feelings, emotions, and reactions. I was looking forward to HAMCW 2013; I had seen the downloadable pre-April “calendar of prompts,” and reading through, ideas kept snapping in my brain – I could hardly keep up and there were furious pen diagrams and writing up, down, and around the printout.

Always playing catch-up on these doesn’t bother me too much though I’m now 7 days/prompts behind, lol. What I need to do is write short, evocative, expressive blog entries based on the prompts. Can I write short, snappy posts? No. Can I edit down a long post? No. Can I stay away from researching*? No. Do you need to do research for every prompt? No. Do you have to over think and let your self-editor out of her box? No. Can I still write? That answer’s not so clear; I do know that I’m not able to write now.

So, my “modest” proposal is to complete the month on my time, finishing the writing challenge as my goal (and reading more widely what other folks have written), I’ll post to facebook and twitter when I have completed one of the challenges; the other participants will reach April 30 ahead of me.

I have a too scholarly day 8 that needs heavy editing, care giving advice based on my experiences for day 9, not sure I want to participate in day 10! The entry for day 11 will be very, very short. I like antisocial media, can’t afford a smart phone, don’t tweeter, have an empty pinterest board (at least, I think it’s empty – better check it out, lol) Care giving comes up again on day 12 (hindsight). Day 13 will be a puzzler. And, the theme of day 14 (spread the love) is wonderful.

Maybe, the writing fairies and elves will descend on my laptop and finish off these posts for me. Let’s just hope I get to take at least a quick glance before they hit publish, lol.

blogging, 19th century style (much like I do in the 21st century)
blogging, 19th century style (much like I do in the 21st century)