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)

a reblog: letter to my mind and body (march 2011) for day 6 HAWMC 2013

As I wrote about day 6:
“I hate to let it, but pain wins again. I tried for days to write a letter to my pain; nothing I wrote seemed to capture the relationship between us. Perhaps it’s because we’ve been together so long we communicate without exact/actual words. Or what I want to say can’t be contained in a reasonable length post.”
I would have left it at that except . . . Checking to see if I had used a particular analogy in an earlier blog post, I came across this from March 2011. While I’m not writing a letter to my pain, it is a monologue based on chronic health conditions.
So, history does repeat its self . . .

“Disclaimer: This is not an original idea of mine; I’ve seen various forms of this in the cyberverse. After a rough week, I felt the need to ask my body/mind why they were causing me so much grief. A letter seemed the most appropriate format. {2013 disclaimer: couldn’t get the spacing between paragraphs uniform. Sigh, my self-editor shrugs her shoulders}
Dear Mind & Body:
What is it you are trying to tell me? I lie, stone still, and listen. Hear heart beat; feel pain; feel the weight of you like lead against the duvet. 

If I close my eyes, I can see the neck throb spasms; visualize the blood circulating (or not) from top of head to tip of toe. Feel where the numbness gives way to the jagged edges of pain. Count the seconds between the stomach cramps or stabbing gurgles.

The deep aches in my legs seem to laugh at the four lidocaine patches (one on thigh and shin of each leg). Face feels like sinus infection, abscessed teeth, black eye on the left side. The pain cascade from neck to cheek bone to jaw to teeth, once begun, seems immune to breakthrough meds.
Are you punishing me for neglecting you in the past? When I could walk for hours; party to dawn. When my mind still could hold information; when it didn’t hurt to talk. When the dragon in my belly hibernated; occasionally shifting her position in her sleep; shaking scales and tail; flexing wings while dreaming of flying.
Do my legs ache because I walked too much or not enough yesterday? Even after sleeping for 10 hours on Saturday, the fatigue still sits on my shoulders. So, how much sleep do you really need since you insist on usually waking me up every 2 ours or so?

What do you want me to feed you? Why do you crave sugar like an addict; why do you let me lose control over how much and what I eat? What you liked yesterday, you give me grief over today. Or was it what I ate 3 days ago?

What do you expect of me? What messages are you sending in zapping pains, soul-deep aches. When I try to stretch you gently, move you carefully, you retaliate with increased neck spasms, facial pain, and migraines.
Why do you opt for a chemical imbalance that makes depression is my shadow? Why have you chosen to have a good memory for bad things and a bad memory for good things? I walk into a room, unsure why I am there. Things go missing like large chunks of my cognitive abilities.
The act of sitting here writing you a letter has started a new pain cascade. The tingling numbness will explode. Back in bed; in the fetal position; I will slow down my breath, and try and decode the messages you keep sending. Is it morse code – the dots and dashes of my pounding heart; binary language of 1s and 0s combined in pain; a mythical language from our ancient past following the neuropathways? Where do I get my “secret decoder ring?” When will you speak to me in words; sentences; paragraphs that I can understand? “

Pain wins again: no Day 6; so here’s Day 7

I hate to let it, but pain wins again. I tried for days to write a letter to my pain; nothing I wrote seemed to capture the relationship between us. Perhaps it’s because we’ve been together so long we communicate without exact/actual words. Or what I want to say can’t be contained in a reasonable length post. (three part harmony is an excessively long blog entry).

So, for now, I’ll leave the letter unwritten and plunge into Day 7: the sensational headline.

Cure for Pain Found on Mars?

NASA reported during a press conference today that the Mars rover, Spirit, had been having some sort technical difficulties, including needing more time to recharge batteries and “getting up and dressed for work.” The rover appeared to not be feeling “well,” moving slowly, equipment “grimacing” when going over especially rough terrain. With great difficulty, Spirit was nudged into place for the next sampling of material on the surface of Mars.

When the painfully slow retractable arm, came in contact with one of several scattered, oddly shaped rocks, output tripled, Spirit moved with no slowness or difficulties. It seemed that the rover was almost smiling as samples were gathered and analyzed. It could have been space static, but it sounded like the rover was singing, American Idol style.

Worried that there was a problem with Spirit, an expert on rover/robot behavior, Dr. R. Obot, was consulted. Going over the images, equipment output statistics and other data, Dr. Obot determined that Spirit had been experiencing the robot version of excruciating, chronic pain prior to contact with the rocks. “Pain isn’t well understood in the mechanical/technological sense. This is a whole new area of exploration that may prove to be fruitful for those suffering from pain back on earth,” Dr. Obot commented at a recent press conference concerning the activities of Spirit and Opportunity. “Spirit’s ability to do Michael Jackson’s moon walk has been greatly enhanced through contact with these rocks, perhaps due to their seeming ability to take away pain” he concluded.

“NASA has been planning to send people to Mars. This discovery is just one of many that we would like to examine back on Earth,” added the press secretary, Mr. I.G. Otnews. “The reaction of the rover, in pain, to these peculiarly shaped and colored rocks could prove to hold the cure for pain back here on Earth.” Laughing, Mr. Otnews rubbed his back and quipped that NASA better speed up plans to send people to Mars, “My back is killing me,” he said.

Aerial Regional-scale Environmental Survey