Monthly Archives: December 2014

The Vigil

Warning:  If you are uncomfortable with end-of-life narratives, you should not read this.  It is my diary of the time (thus far) that my mother has been in hospice.

Friday, Dec.19th:  Mom is extremely ill and the test results are grave.  There are no good  options.  Her quality of life has degraded from awful to hideous in the past few weeks.  We all fully support (and agree with) dad’s decision for palliative care.  Mom is transported from the hospital via ambulance to Hospice.  As he makes sure mom is settled properly, my brother reports that the place ‘reeks with peace’.

Saturday, Dec. 20th.  An urgent call from hospice hastened our journey to mom’s bedside.  Mom was quickly surrounded by family: her husband, children, many grand-children and assorted in-laws.  It was a veritable love-fest.  Her room at Hospice is spacious, and there are several common areas and family lounges at Hospice;  making it possible for this large group to spend the day together, taking turns at mom’s side.  It is also my son’s birthday.

It was a day of tears, laughter and joy.  Joy of a shared history and reminiscence of a life well-led.  Mom rallied and had several moments of connection with several of us, offering us a few precious smiles and occasional words.  She is comfortable and seems to be at peace.

Sunday, Monday, Tuesday:  Mom is less and less responsive with fewer moments of connection. Hospice modifies her medicine to reduce troublesome twitches and spasms and apparent bouts of pain.  It is difficult to gauge her discomfort or pain level, since she is unable to communicate.  My brother spends a couple days and nights at Hospice-on the pull out bed in mom’s room.

Mom is heavily sedated  with rare moments of semi-consciousness. We talk to her and hold her hand, not knowing what she can hear or understand.  I believe that the Alzheimers contributes to her sense of disorientation and fear during her few wakeful moments–she has no idea where she is or why.  Each period of wakefulness may come with the realization that she is very ill and that she is dying. Her comfort is our primary concern.

Wednesday: Christmas Eve   I play and sings some traditional Christmas carols on the piano at Hospice; using a very old music book that was once mother’s.  Several staff and family members thank me, since they (like me) are at Hospice instead of at church this Christmas eve. Dad spends the night at Hospice.   The prolonged waiting and watching is painful for everyone.

 Thursday: Christmas Day:  The report from early in the morning is that mom is unlikely to survive the day. I bail on my husband’s extended family Christmas and spend the day in Hospice along with my brothers and father. We play Apples to Apples at her bedside.  As an answer to the clue  ‘pathetic’  I write:  “Spending Christmas in Hospice.”  I spend an uneventful night in her room.  Once again mom has beat the predictions.

Friday, Saturday:  One or both of my brothers and dad are with mom throughout the day and nights.  I find a need a respite: I visit for a few hours each day.  Saturday is Dan’s birthday and we go out for dinner with friends.

We learn more about the effects of dehydration.  Mom has not had any fluids (other than a few drops at a time to keep her mouth moist) for over a week.  Hospice and other research assures us that there is little or no discomfort — particularly at this stage of the dying process; and particularly when accompanied with pain medication.   Thus far there have been three false alarms from the Hospice medical team warning of mom’s imminent death; but she breaths on.

Sunday, Dec. 28:  I spend the day at hospice, and as I write this I am preparing to spend another night with mom. The silver lining has been the connection with my dad and brothers throughout the day.  Dear God, please let this be over soon.  It is more than we can bear.

Monday, Tuesday:  More of the same.  My brothers and I all have jobs and I have not been spending time with my daughter, Guzzy–we cannot continue to sustain a round the clock vigil.  We learn about a volunteer vigil program; and arrange for some volunteers to be with mom at night.

Bittersweet Reunion

Yesterday my mother was moved to hospice care and this weekend the extended family is gathering to say our good byes and to be with each other.  Mom has lived a long full life. While her imminent passing is sad, it will also be a blessing.

My dad has been mom’s primary caregiver and advocate for the years of her illness–and he has been faced with many heart-breaking decisions.   The gathering of the clan, with its aura of love and caring, should help ease his pain in these dark days.

The other night was most likely my last visit with mom when it was just the two of us.  I held her hand and sang to her gently, with tears streaming down my face.  Her eyelids fluttered, and she lifted her free hand to me (perhaps she was just trying to get me to stop).  All in all, I feel as if I have said my goodbyes.

When I picked my sister up from the airport yesterday she commented, ‘I wish I were because someone were having a baby or getting married!.’  This is a bittersweet gathering indeed.

Mom will be alive in all of us and in our memories.  For myself – I will remember her when I hear certain songs, when I eat fudge (her specialty) and when I look into the innocent faces of her great-grand children.  She will be remembered.

 

The Next Right Thing

After a lengthy period of hemming and hawing, I have committed to coordinating a fund-raising walk for the National Eating Disorder Association to be held in the fall of 2015.   Over the next few weeks I’ll be focusing on finding a venue and pinning down a date; while also recruiting others from my community to assist  (hint, hint to those of you in the Madison, WI area!).

A friend asked how I will find the time?   There are always plausible reasons to NOT do something:  Too busy, too tired, too stressed, too timid, too scared, etc. etc. etc.    For me – it came down to what CAN I do?  After all my reading and learning and posting and ranting, it is time for tangible action.

I recently read Amy Pohler’s book  “Yes, Please’ in which she shares the secret to her incredible personal productivity:  You DO it because the doing of it is the thing.  The doing is the thing.  The talking and worrying and thinking is NOT the thing.”   As I life-long worrier and thinker, that resonated with me.  At the end of the day, it is our actions that matter more than our worrying.

One of the speakers at the NEDA conference earlier this year advised that her own recovery from an eating disorder was based on doing “The Next Right Thing”, one day at a time.   When playing tennis, my doubles partner and I often talk about focusing on ‘one point at a time’.   Whether its recovery from an eating disorder, a tennis match, or tackling a big project; its important to act, to DO the next right thing, accepting that there may be some mistakes or bad days along the way.  One missed tennis shot does not mean match-over — it means its time to refocus on the next point.

If the Shoe Fits

Today’s newspaper carried a story about a small study  indicating that women wearing extreme high heels got more attention from from men.  The science in the study was shady, with an implicit assumption that women will choose attire based solely (pun intended) on what is attractive to men. I find this an insulting and disturbing conclusion.

As someone who stands 5’0″ in thick socks, I wore my share of high heels as a teen and young adult.  I admit that my teen years overlapped the era of platform shoes – which elevated the WHOLE foot, with a somewhat different set of safety hazards.  After a couple years of regularly wearing highish heels, I developed some toe issues and scaled back my footwear to much more moderate heights.  This also improved the overall strength and flexibility of my calfs — a helpful benefit on the tennis court, or ANY sporting venue.

Wearing high heels, especially the extreme heels  targeted in this study, is unhealthy and impractical. These shoes force your body weight forward onto your toes (which are shoved into a very cramped small space) and throws your posture out of whack as your body adjusts its alignment to remain upright.  The result can be a myriad of health issues including toe and foot problems;  nerve damage,  and lower back problems.  Then there is this–a woman simply can’t move as well wearing high heels, she is forced into a restricted mobility, regardless of her skill at navigating the heights of her shoes.

We have seen the videos on Facebook of the ultra-thin fashion models who fall (some of them multiple times) when navigating a cat walk in 5+ inch heels, and my reaction is always the same “For the Love of God – someone help that woman up, throw away those hideous shoes and get her something to eat!  

Throughout history, women have been subjected to painful practices and fashions based on the cultural standards of beauty the time.  Foot-binding of girls was a standard practice in China for hundreds of years, resulting in lifelong disabilities and untold suffering.  The originating basis for this practice is was a status symbol for the man, if their woman was so disabled she could not work.  Presumably, no one asked the women for their vote on the practice.  Over time, the practice became so predominant that only the lowest classes could not ‘afford’ to disfigure their women, and it became a source of shame to have big / normal feet.

Obviously,  breaking the feet of young girls is a more extreme than wearing high heels;  although there are similarities that cannot be ignored.  The purpose is to adhere to the current standards of beauty, resulting in reduced mobility (which can result in greater reliance on men),  as well as varying degrees of pain and suffering.

Many women care a lot about the judgement of others when it comes to their appearance.  Feeding that insecurity is the constant media barrage of messaging of what it means to be beautiful in our culture  We are surrounded with with photo-shopped images of young, ultra-thin, ultra-sexualized girls in skimpy clothing, makeup and super-high heels.

Women and girls with a healthy sense of self will not feel bound by the prevailing narrow and unhealthy definition of beauty.  Be yourselves and the right people will love you.  And, If you can’t love me in flats… move on.

Hablo Espanol?

My twin grand-daughter are not quite 20 months old and their comprehension of Spanish will soon  exceed mine.   Their parents speak mostly Spanish at home, and they are learning both English and Spanish as a natural result of hearing both languages on a regular basis.  It is amazing how quickly young children learn language – their minds are little sponges.  At this juncture the girls understand quite a bit, but don’t speak much yet, although soon they will be babbling away. They are smart little nietas!

My oldest daughter, Kelly; and her husband, Luis, are bi-lingual.   Kelly initially learned Spanish in the classroom and expanded her skills with extensive travel and adventure in many Spanish-speaking countries.  She has always sought out opportunities to immerse herself in Hispanic culture.

I recall showing Kelly the annual report of the company I worked for at the time, featuring a picture of the executive team.  I commented that it was all middle-aged, white men and that Kelly lost out on all counts.  She looked at me for a second and reminded me (her mother) that she is, in fact, white.  I had to laugh — its true, I don’t THINK of her as white!

Once in awhile Kelly will slip in a Spanish word into our conversation if/when the English word eludes her.  Luis is a native Spanish speaker, with excellent English skills.  Once in a great while an idiom will slip him up;  such as when describing his jacket that ‘breaks wind’.

Of course Luis’s command of English is light-years ahead of my limited knowledge of Spanish.  Several years ago I chaperoned Kelly’s school trip to Spain; during which I walked into a restaurant and instead of saying I was hungry, announced that I  needed a man.  In my defense, the words hambre (hungry)  and hombre (man) are phonetically VERY similar.

As a 14 year old Kelly presented me with a proposal to travel to Peru as part of a program she found geared to her age group.  She raised funds, filled out forms, got her shots and got on the plane.  This was before the advent of cell phones, and it took a day or two for me to confirm that she had arrived safely at her destination; including a confusing call with some young man in a hotel in Peru that just kept repeating:  ‘No Problemo’ in response to my questions.

Kelly stands about 4’10”,  but despite her small stature has always been a force to be reckoned with.  When she sets her mind to do something, it will get done.  There was true of the four year-old Kelly determined to button her own shirt, the 14 year-old Kelly heading off for great adventures in a foreign land, and the grown mother of twins returning to graduate school for a career change.  Her new career will be a Spanish teacher in High School and woe be to the student who mistakes their new petite teacher as a pushover. She will go chihuaha on your behind.

There is one example of something Kelly has consistently failed to do after setting her mind to it.  She will never surpass her mother as a gin rummy player.   And if she disagrees, she can get her own blog.

The Anti-Zen of Yoga

I often struggle to achieve a zen-like attitude at yoga.  My mind’s natural state is a whirlwind of thoughts jumping from one subject to the next:  What am I going to make for supper?  Is my red sweater at the cleaners?  Is Guzzy overdue for a dentist appointment?  Do we really need to put up a real Christmas tree AGAIN this year–even though we have a perfectly good fake one?  and so on.

Today I was particularly distracted by the new yoga instructor’s voice.  Most yoga instructors develop a soothing, gentle tone to help create a sense of quiet relaxation.  However, tonight’s instructor had a harsh  nasal Minnesotan accent combined with a lisp.  It was a blend of Sgt. Margie from the movie Fargo with Sid the Sloth from the Ice Age movies.   I was cringing with the thought of all the spit hitting the mats as she guided us through a series of Sssun Sssalutations. ( I realize that is unkind — yet another example of my inherent state of anti-zenness.)

There is another instructor who is extraordinarily graceful, has a strong German accent, and  is very emphatic in her instructions.  She doesn’t just tell us to breathe… she tells us to IIINNNN-hale and EEEXXXX-hale; and in certain poses she tells us to SKVEEEEEZE  our gluts.   If Guzzy is in class with me, we crack up completely at about the fourth SKVEEEZE!!

Of course, focusing on the instructor’s voices distracts me from the ache in my arms, legs, and general glut area during class. Tonight I tried to comfort myself with the thought that I was much older than the rest of the class. That myth dissipated as we were leaving and several of us had a discussion about what we prefer that our grandchildren  call us.  FYI – Many prefer ‘nana’ to grandma–whereas I’m just fine being regular old grandma.

If you have any zen to spare;  please send it to me.  In the meantime, I  might try a glass of wine before the next yoga class.

ED Treatment – the long run

ED treatment is like a marathon in that it typically takes a long time from diagnosis to recovery. At the same time, ED treatment is NOT at all like a marathon, because  the length of the journey is unknown, and there is no clear-cut finish line.

While you are in the midst of it, you cannot know the duration of the remaining journey, and it can be difficult to ‘stay the course’ when you aren’t seeing progress.   There were many days and weeks that I depended on my online support group to give me the strength to persevere in the face of my daughter’s severe anorexia.  I have talked to mothers and sufferers who felt they were completely alone in the days before the internet–without the support of doctors or therapists who really understood what they were going through.  Worst yet, were the years of blaming the parents (mostly moms) and treating the disease by performing a ‘parent-ectomy’… which was rarely effective and caused untold pain and heartache.

Even the best treatment centers can’t provide a guarantee of a cure, or a timeline for recovery. Many factors influence the rate of recovery, with no infallible formula for success.

For us–Guzzy is working hard to maintain her recovery–the final stretch of our personal journey.  When her weight dips below the agreed-upon minimum threshold, her dad and I step in with smoothies in hand.   In the meantime, we maintain a cautious watchfulness.  Families of older teens  need to maintain a delicate balance of giving the space that is needed for our near-adults to experience greater independence and make more of their own choices; while also being on the lookout for a relapse. For parents of young adults, it is an even more difficult dilemma, since the parents no longer have decision-making authority for their grown children, who very often are in denial of the problem and resistant to treatment.

We are very lucky. We were able to conduct a major intervention relatively early in Guzzy’s disease, before she was an adult.  While the first two treatment programs were not effective, we had the resources to (eventually) check her into one of the best programs in the country.  There are families that do not have access to the same resources that we do–effective treatment centers are expensive and may be too far away to be practical.  Families are often between a rock and a hard place;  needing to work in order to support their family and provide insurance, but also needing to be at home caring for their ED sufferer.  Insurance varies widely on what, or how much, treatment is covered for mental illnesses.  Some families spend their savings on treatments, with no guarantee of a successful outcome.  It is heartbreaking.

Anyone running a marathon needs lots of support.  As I write this, I am making a commitment to reach out today to someone who is either ill themselves or in a caregiver role.  Something as simple as a thoughtful note can  make a difference to someone who just may be running the race of their life.