In a prior post I acknowledged that in our role as family caregivers, we’ve all  probably lost our patience with our aging parents or care recipients at some point. I also promised to share with you my own experience, so here goes.

I Never Lost My Patience (Part One of Two)

I was a long distance caregiver to my parents during the years my mom was in the early stages of Alzheimer’s disease. It’s easy to keep your patience when you live three thousand miles away and the caregiving consists mainly of supportive phone calls and a few short visits a year.

About two years after her diagnosis, when my parents moved to an assisted living facility in my town, my mom was at the start of the middle stage of this horrible disease.  Through the excellent free resources of my local Alzheimer’s Association, I had educated myself via workshops and lots of reading about caregiving for dementia patients.  I was also attending a support group for adult children of Alzheimer’s patients on a regular basis which provided more insight and other people to share experiences with.

The knowledge I gained from the time my mom was diagnosed until the time she and my dad moved here armed me with an understanding and deep compassion for people struck by any memory-impairing disease.  And while I saw my parents multiple times a week once they lived nearby, I do not remember a single time when I lost patience and blew up at either one or them, face-to-face or by phone.  (I just checked with my husband and he couldn’t think of any incidences like that either.)

So How Did I Keep from Losing It?

OK, this was probably a wimpy way out (or at best, passive-aggressive behavior), but I would rely completely on my husband to interact with my parents for me when I needed some space as a caregiver.  As their only child, I was their sole source of emotional support, and I thought it could be extremely hurtful if I was nasty, mean or rude to them.  I truly didn’t want to hurt them in any way at this stage in their lives.

I did two things that stopped me from losing patience with my parents:

1.  I vented to my husband . . . a lot!  I would whine and complain whenever I felt the caregiving issues and duties were overwhelming me.  As an only child, one comment I often made was, “This is just too much for one person to handle!” (Of course, there are pros and cons about being a caregiver and an only child, but that’s another post.)

I must also point out, my parents were always very independent and considerate!  They never expressed a desire to live with my family and only did so for a few weeks when they were moving.  I always had our own home as my sanctuary to retreat to.  I don’t know how I would have managed had we all lived under the same  roof — which makes me sympathize even more with family caregivers who do accomplish this incredible feat with aplomb!

2.  I would have my husband “run interference” for me when I was reaching my caregiving breaking point.  Jeff is an absolutely extraordinary man, and I have to publicly thank him again for being such a vital part of my caregiving “village.”  There were times my father would call and I just couldn’t bear to deal with whatever question or problem they had.  Jeff would return the call and handle everything for me when I just couldn’t do it myself.

One particular incident really stands out in my mind.  I had just arrived at Disneyland to meet a group of friends (we’re locals and had an annual pass at the time) and spend the evening dancing to a favorite band playing there.  (As I’ve written here before, dance is one of my major ways to relieve stress!) My pager beeped and I saw it was my parents’ phone number.  I immediately called Jeff at home and he willingly returned my Dad’s phone call, explained I was gone for the evening, and helped them in my absence.  Thankfully, I didn’t have to turn around and leave the Happiest Place on Earth as soon as I had arrived.  I know how lucky I am to have had such a reliable and caring backup person on my caregiving team.

Do you have a family member, friend or neighbor you can ask to be your back up for those times you just need to have some time away from caregiving?  And don’t feel guilty arranging for this assistance!

I Never Lost my Patience . . . Yeah, Right (Part Two of Two)

Ironically, I would lose my patience on the telephone multiple times with my parents years before I ever became their family caregiver!

I moved out to California in my mid-20’s and we’d talk on the phone about once a week to catch up.  I would find myself very upset or angry with my parents by the end of many conversations.  I remember wishing they would just leave me alone and stop telling me what to do!

These negative emotions, along with some other issues, led me to get counseling for a few months to gain a better understanding of myself.  My therapist taught me a very important life lesson which I know helped me become a more patient caregiver when I took on that role.

The lesson was for me to change my perception of what they said.

It was to recognize that the words my parents were actually saying, which I perceived as criticism or telling me how to run my life, were only one surface layer. What I needed to learn and embrace 100% was the understanding that beneath whatever “negative” words I was hearing, what my parents were really saying to me was, “We love you!”

They cared about and loved me deeply.  They weren’t criticizing me; they were suggesting ways I could make my life even better.  It was all in my perception of the intent behind their words, not what their words were!  It was the unspoken message they were sending that I needed to focus on.

Once I learned this important lesson, it made all the difference in the world when communicating with them in a patient and loving manner, both long distance and while up close and personal.  And I think this basic understanding also kept me from losing patience with them when I later shouldered the responsibility and stress of caregiving.

True Confessions are now officially over.

In a future post, we’ll talk about practical ways we can smooth things over when we do blow our cool with our Golden Oldies.

This article is Part 4 in a series on hospice care.  Please see the section below entitled “Related Posts” for links to Parts 1, 2, and 3 and to read more on this topic.

First Time Around It Was “No Go”

I was impressed with the way my dad’s final months were made more comfortable physically and emotionally via hospice care, as well as by the support I received from them. I wanted my mother to receive this same comfort care.  She was already in the middle stages of Alzheimer’s disease when my dad passed away, and I knew I really didn’t want to subject her to any more hospital stays in her lifetime, so placing her on hospice care was the answer for me.

I asked the hospice company to assess her, assuming they’d admit her to their service.  Wrong!  The hospice company told me she didn’t meet the strict criteria for admittance as a patient.  In one way I was glad that she didn’t qualify for hospice but, on the other hand, I was somewhat surprised and let down.  While disappointed, I learned their parameters, and also knew it was only going to be a matter of time before she would meet the criteria.  And in April of 2007, she did.

A Different Experience Due to Length of Time on Hospice

The difference between my mom’s and dad’s hospice experiences was due for the most part to the length of time they each received hospice care.  It was provided by the same hospice company, but my father was on hospice less than six months, while my mother was on hospice for approximately two years.

As a result of her extended time on hospice and her continuing decline, she utilized these additional services:

• The hospice company provided more medical equipment for my mom:  a hospital bed with an alternating pressure air mattress, a wheelchair, incontinence supplies, and a medical hoist to help the caregivers lift her from her bed to wheelchair and back again.

• The hospice company consulted with wound care specialists several times who assessed and suggested alternative treatments for the bedsores that appeared despite the excellent care she received. (Yes, bedsores can develop even when patients are very well-cared for. Read more about this subject here.)

• A dedicated hospice volunteer visited my mom once a week and helped my mom participate in arts & crafts or music as much as she could, read books to her, talked with her (even though it was pretty one-sided due to mom’s aphasia), brought flowers and little gifts, and just kept her company if she was sleeping.  These “quality time” visits were greatly appreciated by me, since I couldn’t be there every day.  The volunteer also got to know our whole family and we still are in touch months after my mom passed away.

• When my mom experienced her first ever tonic-clonic seizure, continuous care was provided by hospice for about the next 48 hours.  This means hospice staffers gave her intense around-the-clock care until she returned to “normal.”  This was only offered by hospice as a short term level of care and reevaluated each day, because it is also based on strict Medicare guidelines.

Caregivers vs. Hospice Staff in “Territorial Wars”

An interesting thing occurred during the treatment of my mom’s bedsores.  The board & care caregivers and the hospice RN’s pointed fingers at each other a few times, insinuating that it was the others’ fault that my mom’s bedsores weren’t healing quickly enough.  The caregivers felt the RN’s needed to provide more frequent wound care; while the hospice RN’s felt that the in-home caregivers didn’t turn or reposition my mom often enough since she was bedridden.  It was subtle verbal warfare that I heard both sides of.  Although it didn’t became a big brouhaha, and never went further than a few words spoken privately to me on occasion.

It’s important the staff of the board & care and the hospice nurses easily co-exist and communicate well with each other.  And they should not get into “territorial” wars over who the patient is getting “better” care from.  I knew they all wanted what was best for my mom, but they needed to stay focused on that and not start pointing fingers out of their frustrations over the bedsores.

If you notice this phenomena occurring during your loved one’s care and it’s getting to be more than you want to deal with, contact the hospice team manager and/or board & care administrator and let them get it ironed out.  With mom’s medical condition I believe her bedsores were lingering for any number of reasons, and I never blamed the caregivers nthe RN’s.  All of us were a “village” providing the best care possible for my mom.  Your family could find themselves in the middle of staff turf wars, too, over various caregiving issues, so please be aware.

More Lessons Learned from The Two Hospice Experiences

As I wrote previously, I might have interviewed other hospice companies if I had known in the beginning there were different types to choose from.  Some time after the first year of my mom’s hospice experience, I decided to interview a smaller “mom and pop” type of hospice company a close friend (who is also an RN) recommended.  One benefit was that the nurses’ caseloads with that company were  smaller, so their patients theoretically could receive more frequent or longer visits.  This benefit appealed to me and I thought over the pro’s and con’s of each company for several weeks.

I decided to stay with our original hospice company.  I didn’t want to invest the additional time and energy it would take for a whole new team of hospice workers to get to know and initiate care for my mom.  I realized no hospice company is perfect and it just didn’t seem worth it to make a change at that point.  It turns out this decision to keep the status quo was just a few months before my mom died, and that fact made it an even better decision in hindsight.

Every hospice patient and their family’s experience depends greatly on the individuals on the hospice staff.  Although the doctors, RN’s, social workers and home health aides that cared for my parents were all employed by the same company and therefore had the same goals and philosophy, they each brought their own personality and style to the job.  These can vary greatly and the patient’s family should be sure the staff’s style of communicating and caregiving match what you perceive your care recipient’s and your family’s needs are.

For example, the social worker assigned to my dad’s case was a treasure.  As I wrote in a prior post, she met me in person at the board & care several times and checked in by phone with me regularly to offer support to us on a continuing basis.  When my mom was admitted to hospice two years later, I was pleased to learn the same social worker was assigned to her case.  Later on she left the hospice company and the new hospice social worker approached her job very differently.

This new social worker never called to introduce herself nor made any contact with our family until I called the hospice company with a question that fell under her bailiwick.   She then promptly met me at my mom’s board & care and provided the needed information, but the “connection” and compassion I felt immediately from the prior social worker was missing.  Yes, she technically fulfilled her job duties by efficiently responding to my query, but that was it.  She seemed harried and her demeanor just wasn’t a good fit with mine.  If I needed more help from the social worker, I would have requested someone else on the hospice staff.  Like any paid service, we as consumers have the right to ask that our basic needs be met.

I recommend patients and their families be open to the concept of hospice care.  It is a scary word associated with death and hard to face, but it provides a positive end-of-life option.  Learn about it. Interview local hospice companies before making a decision on which one to use.  Talk with your aging parents about their end-of-life thoughts, plans and desires. Educate your whole family about this phase of life and how hospice can help manage so many facets of it.

I feel very fortunate that both of my parents were able to die with no pain, peacefully and with dignity.  I wish everyone could leave this world in that way.  Don’t you?

If you or your loved ones have had experience with hospice care, please share with us in the comment section below.

And check back soon for more articles in this series.

Please be aware I am not a health care worker, nor an expert on hospice and end-of-life issues, but I am sharing my family’s hospice experiences with you in the hope it will lead to more knowledge and a greater understanding of this aspect of life.

This is Part 2 in a series on hospice care.  You can read Part 1 here.

Admission to Hospice Care

I probably shouldn’t have been surprised when the board & care administrator suggested Dad be evaluated for hospice care.  It was just after his 98th birthday after all! While he was in above average shape for someone that old, he had deteriorated physically and mentally in the preceding weeks.

Plus the administrator actually listened to my words and my true but unspoken desires underlying the words I’d said in the months prior: “I don’t want my father to ever be put in a hospital again.”

Why did I feel this way?  Two years before I’d witnessed how confused and agitated being in the hospital and medications made him when he had hip replacement surgery.  And I didn’t want him to go through that mental angst and the physical discomfort hospital stays usually cause in the elderly.

Not every senior is placed on hospice just because a family member asks for an assessment.  A nurse examined and interviewed us both as one part of the admission process to see if my dad met the eligibility guidelines.  My dad’s doctor did an examination, as did the doctor affiliated with the hospice company.

Hospice doesn’t pay for all of your loved one’s medications, but it did cover all medications relating to the diagnosis hospice gave him, end stage cardiovascular disease. My father wasn’t taking much medicine at all, so the cost for the non-covered medication wasn’t a financial burden for us.

I eventually saw how much the hospice care bills were, and they were very expensive, but at no out-of-pocket cost to us — except for the monthly Medicare premium taken out of his social security check.   Payment for hospice services is covered through Medicare and most Medicaid programs. Most, but not all, private insurance programs offer a hospice benefit. It is important to research whether your health insurance coverage offers hospice benefits and determine exactly which services are included. Some hospice companies will help you with this analysis, too.

I didn’t interview more than one hospice company.  I just went with the one that the board & care recommended.  I didn’t realize I could have chosen any one I wanted to, but I liked the people I met through this hospice company and my instincts said to proceed with them.  I wasn’t disappointed.  As time went on and I learned more about hospice, I became aware that all hospice companies are not alike.  I happened to select a large, nationwide hospice company, however there are smaller, “Mom and Pop” types of hospice companies as well.

If I was going to do it all again, I might have interviewed more than one company just to get a feel for the various staff members, as well as to compare and contrast their approach to our family’s situation.  A hospice company is only as good as its staff makes it.  Like any service you are paying for (even if Medicare is picking up the tab in this case), make sure they provide good customer service and you are very satisfied with the patient care.  If not, look around until you find a hospice company that is a better “fit” for you and your Golden Oldies.

What Does Hospice Do When Your Loved One Already Lives in a Board & Care?

Hospice provided another entire layer of care for my dad.  There was a wonderful RN who would visit and examine him thoroughly two or three times a week.  A home health aide came every other day to bathe, shave and attend to any personal care he needed.  This was above and beyond the regular caregivers’ daily assistance in the board and care.  The RN would call me with periodic reports by phone about my dad’s condition and I was able to reach her (or her supervisor) whenever I had questions or concerns. There was also a detailed log book about my Dad recording every statistic about his health condition and medicines, contact information, and a detailed report for every visit made by each hospice team member.

Beyond patient care, phone calls were made to me on a regular basis by the hospice social worker, whom I also saw sometimes while visiting my dad.  She would call me every few weeks just to check in and see if I had any questions  or needed emotional support in any way.  The hospice company also had a chaplain who contacted me within a week of my dad’s admittance but I let him know we already had wonderful clergy to help us with religious and spiritual issues.  The hospice team (MD, RN, home health aide, social worker, chaplain, team manager) meet on a weekly basis in their offices to discuss each patient and update their care plan.

Hospice Philosophy

The goal of hospice care is to keep your aging parents comfortable and to maintain a decent quality of life while they are in their final stage of life. This philosophy is different than traditional medicine, in which health professionals strive to cure a person’s disease. Hospice services are not intended to speed up or prolong the dying process, but focus instead on relieving pain and other symptoms. Hospice caregivers are concerned with enhancing the quality of remaining life by keeping seniors as alert and comfortable as possible in a familiar environment with family and friends nearby.  Hospice care also helps family members manage the practical details and emotional challenges of caring for a dying loved one.

In Part 3 of this series, I’ll share more with you about my family’s experiences with hospice and what I learned during my mom’s final months.

Outside Resources:

The Hospice Foundation of America

Medline Plus about Hospice Care (A service of the U.S. National Library of  Medicine and the National Institutes of Health)

American Cancer Society

My Mom, Aida Ennis Brodsky, lived 99 years, 9 months and 27 days.  She would have turned 100 years old on Saturday, July 4th.

In loving memory of this wonderful woman, I’ve decided to publish the eulogies my husband and I read at her funeral service in May.  Thank you for allowing me to share them with you.

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The definition of the word “lady” in the dictionary reads “a woman of refinement and gentle manners,” and those words describe my Mom perfectly.

The dictionary says being a woman of refinement means she is “free from impurities.” My Mom Aida was very soft-spoken and I never heard her yell, curse or even come close to doing either.   Her refinement was also evident in her poise, her un-hurried manner and her outer beauty.  She had lovely thick hair (dark brown and then a pretty “white owl” gray), sparkling brown eyes and smooth, soft skin.  Even into her 90’s her skin was relatively free of wrinkles, thanks to the religious use of Ponds cold cream, her favorite beauty aid.

She was gentle and pure from the inside out; ever classy, full of kindness, and always, always polite.  She was truly the epitome of a lady in every way.  Even in her final years, when Alzheimer’s disease robbed her of her ability to speak more than a few words, the one phrase her caregiver, Regina, told me she’d say to whomever was helping her was “Thank you!” She was simply amazing.

As my Aunt Eleanor, my Mom’s sister-in-law, remarked to me this week on the phone, my Mom had “an eye for quality. It was instinctual.”  She could go into any consignment shop and find the special antique treasures amidst all the tchachkees [Yiddish for knick-knacks]. When I was a child we spent hours together in her favorite little consignment shop called “Gems and Junk,” because antiquing was one of her great joys in life.

Her deep love and constant devotion to her family was paramount above all else.  During a trip back to his alma mater, my Dad, Al, spotted her in the hallways of Bushwick High School.  Her family didn’t own a phone in the mid-1920’s, so he wrote her a letter of introduction and asked her out.  The rest is history.  They were married in 1928 and celebrated their 76^th wedding anniversary before my Dad passed away in 2005.  An enduring marriage like that is so very rare, especially these days.  We are blessed to have had them as a role model.

They stood by each other through the good times and the harder times.  When my Dad had triple bypass surgery at age 84, my mom quickly gave up her outside-the-home hobbies and activities to stay by his side and watch over him for not just months, but years.  I have a picture of her in my mind standing by his chair in the living room in Florida lovingly stroking his head as he watched TV in his favorite easy chair.  They were truly soul mates and I take some comfort in knowing their spirits are now reunited for eternity.

Growing up we always had family get-togethers – Brodsky “family circle meetings” in our basement, birthday parties, New Year’s Eve parties, and bar-b-ques in the backyard in Malverne.  Almost every weekend included visits with some of my many aunts, uncles, cousins or family friends.  And it was an extra special time when Mom’s California family came all the way to NY to visit!  My mom was my first example of what a family caregiver does as we’d visit her father, my Grandpa Kiva in Brooklyn and later Far Rockaway, to check on him, help him, and bring him home-cooked rotisserie chicken several times a month.

I was born when she was 45 years old and they had already been married for 25 years!!  Think about that for a moment.  Most of us here are at least 45 now – can you imagine the overnight culture shock they must have gone through when I suddenly came along?!  They gave me a charmed life full of only the best, yet they were always cautious about not spoiling me. My mom would often say, at the times she was most proud of me, “I don’t want to say too much because I’m afraid of giving you a swelled head.”

As I was growing up, we had loads of fun together as a mother-daughter team.  She was a Girl Scout co-leader for several troops I was in; we collected coins and stamps together; she taught me the basics of knitting, crocheting, cross-stitch and embroidery.  She was a fabulous seamstress, but that trait I didn’t pick up on, much to her chagrin.  In fact, she saved me from a failing grade in Home Economics when I burned a hole ironing a yellow a-line dress I had just sewn for a final project.  She quickly designed and helped me sew a yoke over the burned spot to cover up my blunder in time to turn it in the next morning!  She took me to ballet lessons, made me take piano lessons, came to all of my dance, chorus and piano recitals, and also cheered me on while I was a cheerleader in high school!  No girl could ask for a more involved and supportive Mom.

At age 80, she became a Grandma for the first time!  Robbie, I’m sure she would say it was definitely worth the wait.  When we’d visit them in Florida, she was so proud as she showed Robbie off to her friends and neighbors.  I would tease her about the “Shrine to Robbie” she made on the wall above the kitchen table.  It was a collage of Robbie pictures – some in frames, some just taped to the wall — skip the frames, just get them up there! And speaking of photos, she loved taking pictures ever since I could remember.  She was great about taking her camera with her everywhere — capturing many family events, people and scenery on various trips.  It wasn’t about doing photography with the latest and greatest camera as a hobby; it was her way of capturing family history in the making.  And we have tons of photo albums to prove it.

One other quality I observed in my mom was her strength, both mental and physical.  Her parents were Russian immigrants and everyone in their family knew you had to work hard to get somewhere in America.  The children were sent to public school to learn English because Yiddish was spoken at home.  After graduating from high school she was a legal secretary and stenographer for about 25 years, and then became a full time stay-at-home mom.  Yes, she got to fully engage in both roles and didn’t have to juggle these commitments simultaneously as modern women do. She and my Dad were already married at the time of the stock market crash, the Depression and World War II.  When my Dad was drafted, my Mom kept Amalite, his tool manufacturing business, going successfully for the years he was in the Army.  She oversaw the office and the factory, all the while thinking constantly about her husband fighting a war overseas.

While waiting through the one year period for my adoption to become final, my mom worried so much that she developed very bad colitis.  Her weight went down to about 85 lbs., and the doctor said she had to have major surgery if she was going to survive.  She had the surgery, but then had to adjust to using a medical device for the rest of her life.  This very difficult experience would test anyone’s mettle, and she showed great courage in facing this harsh reality head on.

Aside from that ordeal, she was physically very healthy the rest of her life.  She only had two other relatively minor surgeries.  I have to marvel that at age 99, the only medicine she needed was thyroid pills, which she took along with her daily vitamins. We should all be so lucky!

Most sadly, she was diagnosed with Alzheimer’s disease in about 1998 and had to live for over ten years as her long and short term memories were slowly destroyed and her brain processing further deteriorated step by step. No one should have to experience this type of continuous decline, and no family should have to witness it.  I pray they find a cure for this horrible disease soon.

But through all of the challenges my Mom faced, I don’t remember ever hearing her complain!  She always told me we have to “roll with the punches,” and she taught me this repeatedly by the way she lived her life.

You will live forever in our hearts.  I love you!

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Jeff’s Eulogy

Okay, I’ll confess. I started writing my thoughts about Aida back when she was just a young girl . . . you know . . . around 87 years old.

Aida was truly a sweet and caring lady with dignity and class.  She was pleasant.  She didn’t nag. And she never made you feel guilty.  That’s right…the ideal mother-in-law!

And thank God I liked her since she decided to hang around for 99 years!!

Of course, Aida had her amusing little quirks, too.

If she showed you one of her many vacation photo albums, you wouldn’t see scenic pictures of the coastline. You wouldn’t see photographs of Linda’s dad standing next to a famous statue. Instead, you’d see photo after photo of the paintings that were hanging in each of their hotel rooms.

During one of my last visits with Aida, it was a typical scene: her lying in bed, me holding her hand and trying to be lighthearted while getting a blank stare in return.

Yes, the same one most of you give me when I think I’m being funny.

As I was leaving her room, I stood in the doorway and blew her a kiss. She looked at me and in a clear voice, she said ‘Thank you.’

And that’s from a person that most of us would think was completely tuned out due to the nasty effects of the late stages of Alzheimer’s disease.

But I learned a valuable lesson . . .

None of us can know what a person can really see, hear, comprehend or feel no matter what condition they are in.

I would get frustrated at times watching Linda break down or be depressed after a not-so-pleasant visit with Aida. I thought Linda was wasting her time talking to her mom who seemed to be out of it.

I couldn’t have been more wrong.

I truly believe that the reason Linda’s mom lived as long as she did was because of the endless love and unselfish caring Linda showed her time after time after time.

Aida is so special that while others light candles for their birthdays, every year the nation lights fireworks in honor of her birthday.  Yes, she was born on the 4^th of July.

So this July and every July, when the sky is filled with beautiful fireworks lighting up the sky, take a moment to think of Linda’s dear mom, Aida. After all, being the wonderful person she was, always made the world a brighter place.

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Happy Fourth of July weekend to my wonderful TLeC community!

Today is my birthday and I couldn’t think of a better gift to myself than to return to blogging at TenderLovingEldercare.com.  Thank you again for all of your messages, cards, emails and letters of condolence and support over the last six weeks.  My family and I deeply appreciate them!

Am I an Orphan?

Since my mom died in May a few people have remarked that I am now an “orphan.”  I probably never would have thought about myself this way if they hadn’t mentioned it to me.

Per the Merriam-Webster.com dictionary definition of an orphan, I suppose I am one: a child deprived by death of one or usually both parents. Even though I am definitely not a child, I was always a child in my parents’ eyes, no matter how old I was.   So, technically, I could be considered an orphan, since both of my parents have died.

The Most Famous Orphan in Pop Culture

As I ruminated further on this idea, who should pop into my head?

Little Orphan Annie!

In case you live on the other side of the world, and aren’t familiar with her, here is a YouTube video from the 1982 movie musical “Annie,” so you can get acquainted:

[If you have trouble viewing this video, click here.]

First off the bat, in no way do I resemble her, in this classic portrayal!  I do not have red, curly hair.  I am not a little girl.  And while I do love to dance, I definitely can’t sing!!  (My husband says the only Singer in our house is a sewing machine! LOL)

But there are some similarities between Annie and me:  I am short , my middle name is spelled A-n-n-e (OK, it’s not pronounced Annie but it’s close) and I do my darnedest to keep a positive mental attitude under all circumstances.

Here are the lyrics for “Tomorrow” written by Martin Charnin (music by Charles Strouse):

The sun’ll come out
Tomorrow
Bet your bottom dollar
That tomorrow
There’ll be sun!

Just thinkin’ about
Tomorrow
Clears away the cobwebs,
And the sorrow
‘Til there’s none!

When I’m stuck with a day
That’s gray,
And lonely,
I just stick out my chin
And Grin,
And Say,
Oh!

The sun’ll come out
Tomorrow
So ya gotta hang on
‘Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You’re always
A day
A way!

As I listened to the song and then read the lyrics, not only do the words resonate with me on a personal level, but all caregivers, family or professional, could use these words as a caregiving “anthem.” While acknowledging the difficulty of the day, the song gives us hope that tomorrow will be a better day, and that we “gotta hang on!”  Can’t every caregiver relate to these basic feelings?

My Questions for You

What do you think of this song becoming the Caregivers Anthem?  Is there another song that helps you get through a tough day of caregiving?

If both of your parents have died, do you think of yourself as an orphan?

Please share your thoughts below.

Now it’s off for some birthday fun and cheer with family and friends . . .

Stay tuned to TLeC for another interview with a family caregiver coming soon!

And last but not least, it feels great to be back!

Hi Dear Readers,

Just want to give you a quick update:

• I am slowly coming out of the grief fog.

• I am definitely crying less and smiling more.

• I have lots of ideas for new blog posts, but am not quite ready to sit down and write.

Please have patience with me.  I’ll return to full speed ahead sometime in June.

Thanks for all of your lovely messages of support and TLC.  I really appreciate them!

_______________________________________________

Photo Credit:  A National Acrobat’s photostream

I am very sad to tell you that my mom, Aida Brodsky, passed away on May 1, 2009.  The end was peaceful and she was surrounded by loving family.  This photo was taken on her 99th birthday — July 4th, 2008.

May her memory be for a blessing.

My mom has been troubled by bedsores on and off for the past two years.  A bedsore forms, gets worse and then very s-l-o-w-l-y heals (as in taking months to completely close up). She presently has three in various sizes, places and stages of breakdown or healing.

Contrary to what most of us believe, I’ve learned bedsores do not occur as a result of neglect.  In my mom’s situation, her skin breakdown is due to the thinness and fragility of her skin, her weight (she’s only 90 lbs.) and the fact that she can no longer walk. The caregivers at her board & care are all top notch and are constantly battling any signs of skin irritation to keep new bedsores from forming.

The Current Medical Treatment

The worst bedsore is on her coccyx and the doctor ordered her to be in bed 99% of the time now.  The caregivers are vigilant about turning her from one side to the other side every two hours and changing her diaper to keep moistness away from all the sores.  She uses an alternating pressure air mattress which is always moving slightly to massage her skin.  The hospice nurse provides specialized wound care every second or third day. I know medically these are correct steps, because with the attentive wound care and the “staying in bed regime” the sore is not getting worse, and is starting to heal.  For that I am grateful.

So What’s My Dilemma?

Why is this medical treatment bothering me?

Because it is also a quality of life issue.

When she’s in bed 99% of the time, Mom misses out on the social activities that go on in the living room and kitchen of the house.  She can’t partake in musical sing-a-longs or arts & crafts sessions three times a week.  She misses mealtime conversations and visits from other residents’ families.  Even though her ability to speak, participate or interact are limited, I still believe she gets stimulation and enjoyment by being in these social situations.  Or just by viewing the changing indoor “landscape” in front of her eyes. When she’s lying in bed in her room, she’s isolated and misses out on this liveliness, except what I bring her during my visits.

If I knew the medical treatment was just for a few days or even for a few weeks, I could live with it.  But based on how long it has taken previous bedsores to heal, I see her staying in bed for months to come.

A Balancing Act

It’s a matter of balancing her medical needs and keeping her quality of life at a decent level.  It’s a balancing act that I’m not sure we’re winning.  Yes, her bedsores are healing, but at what cost?  It’s frustrating and it makes me sad.

Have you found yourself in a similar caregiving predicament?

How have you dealt with it? Let’s discuss . . .

I have been away for a few weeks because my dear Aunt Rose passed away on March 28th, 2009 at age 95 in her home in New York City.  Uncle Arthur, her husband and soul mate, predeceased her in 1994.  While I was away for only four days, the trip took me back decades in our family history and I’ve been steeped in this “time trip” since my return.  They were an extraordinary couple and I’d like to share some thoughts about them with you.

As a youngster, I thought Rose and Arthur were quite Bohemian.

Rose was my mom’s sister, 4 years younger than she.  Some of my favorite childhood memories are when Rose and Arthur visited our home on Long Island.  They’d take the train out from New York City, we would meet them at the train station and walk back to our house.   I thought it so unusual that they didn’t drive a car.

Every time I would see Uncle Arthur, he’d say to me, “Linda, say Happy Birthday, Uncle Arthur!”  I would usually giggle and say “Today’s not your birthday!”  Indeed, I knew exactly when his birthday was. Then he would smile a Cheshire grin and reply, “Every day’s my birthday.”  What a powerful life lesson he was teaching me — and before I could even understand it.

Uncle Arthur could also wiggle his ears — not using his hands!  That would have me in gales of laughter as I’d demand, “Do it again!  Again!.”  They almost always came to spend Christmas Day with us and would bring a box of ribbon candy for me as a treat.  (I still don’t know if that was the only time of year it was available in NYC or if that’s just when they brought it.)   In the summer, he would enjoy sunbathing in our backyard during their visits — Uncle Arthur was a huge sun worshiper his entire life.  He always wore bikini bathing suits — even before Speedos were in vogue for men to wear as far as I know. Aunt Rose and my mom would enjoy the garden while Uncle Arthur soaked up rays.

They were both lifelong New Yorkers, living in Manhattan all of their lives.  For many years they lived in a very tiny studio apartment in Greenwich village and then in the 1980’s upgraded to a one bedroom cooperative apartment in the same neighborhood, where they lived the remainder of their years.  They didn’t own a television set until some time after they moved, which was highly unusual during the great Age of Television.

Both of these homes were decorated with unusual plates, statues, and other beautiful artwork from their travels around the world.  While they both had successful careers in accounting and office management, their real passion was traveling.  One cruise alone took them on a 3 month journey around the world, and I understand their travels took them around the world a total of seven times!  Cruising was their pleasure (the Sagafjord was their favorite ship), and it was only in later years they deigned to fly, and I suspect it was because it was the only way to reach destinations they still wanted to see.

Uncle Arthur made silver jewelry as a hobby.  Aunt Rose was a jewelry maker and dress designer extraordinaire in her free time, and sewed beautiful evening dresses, especially sari’s, to wear to the many Captain’s Dinners they were invited to while cruising.  He loved opera, and they had season tickets to the Metropolitan Opera for many years.  When I was in high school, Aunt Rose stayed home one evening and I was Uncle Arthur’s escort to the opera.  He had me listen to the music in advance and told me the story so I could follow it.  I totally enjoyed the Metropolitan experience that evening, but sheepishly admitted to him later on that opera wasn’t my favorite musical genre.

As I grew older, I realized that Rose and Arthur were not Bohemian at all, but actually conservative citizens.

To illustrate I’ll share one memorable evening we had together in San Francisco.  They had been on a cruise that ended there, and a friend and I met them at the pier, took them to their hotel and had dinner with them that evening.  My friend, young and idealistic in his 20’s, was dissing our country for something or other, and Uncle Arthur went on a rant (he was nearly yelling at us) about how much poverty, disease and horrible things they’d seen in so many other countries,  the United States was the best country in the world and we’d better not ever forget that fact!  Yikes! I haven’t forgotten it, Uncle Arthur.

Dancing was another passion of theirs (which I’m happy to say I’ve inherited) and they were excellent at it.  Aunt Rose told me how the ladies would line up to dance with Arthur, and she was proud to say they were more skilled than some of the dance teachers on the ships.  Another favorite moment in my mind’s eye is of them dancing together at my wedding, he in a white dinner jacket, she in a pink brocade evening dress and matching jacket.

While the photograph above doesn’t show it, Aunt Rose wore her hair in a beautiful, perfectly formed bun near the top of her head for most of her life.  After Uncle Arthur died, she cut her hair short and had it permed.  I never realized she wore it that way for him all of those years!  She also loved going to museums and reading the Wall Street Journal daily.

Aunt Rose was Uncle Arthur’s nurse during his battle with throat cancer, which he lost in 1994.  After that she didn’t travel to exotic places any longer, but did make trips to Florida and California to visit her two brothers, her sister and their families.  I believe her last trip was to attend my son’s bar mitzvah in 2002.  How very lucky we were to have her there!

Their Legacy to Me

Rose and Arthur instilled in me a love of travel, art and dancing.  I will continue incorporating these three things in my life, and our son’s as well.

Their relationship was a true romance story, and their ever-lasting love and devotion is a wonderful model for everyone to aspire to. (So far so good, as my husband and I are celebrating our 25th wedding anniversary tomorrow.)

And I promise to live every day as if it’s my birthday!

I’ll close by signing off the same way I always would in my letters to them –

Aunt Rose and Uncle Arthur, I love you and miss you TONS!!!!!!!!!!!!!!

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Photo Credit: E. Antonovsky, N.Y. — circa 1940

Our son is home from college for Spring break and there has been continuous talk (aka agonizing) over March Madness around here.

“March Madness” refers to the U.S. men’s collegiate basketball tournament that began this week. Don’t worry if you haven’t heard of it — I hadn’t either until our son started thinking about what college he wanted to attend.

So in honor of March Madness, and with great hope the University of Arizona team will go far in the tournament, here is a collection of basketball humor, along with a fun article about how vasectomies and March Madness go together. Enjoy!

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“The sport of basketball is 113 years old today,” Jay Leno reported on December 1st, 2004. “Did you know James Naismith came up with the game as a way to keep young men away from women and out of trouble? . . . . Well, that sure worked well!”

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Q: Why do basketball players love cookies? A: Because they can dunk them!

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“He’s great on the court,” a sportswriter said of a college basketball player in an interview with his coach. “But’s how’s his scholastic work?”

“Why, he makes straight A’s,” replied the coach.

“Wonderful!” said the sportswriter.

“Yes,” agreed the coach, “but his B’s are a little crooked.”

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I play in the over-50 basketball league. We don’t have jump balls. The ref just puts the ball on the floor and whoever can bend over and pick it up gets possession.

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Here is a commentary by John Kelso in the Austin American-Statesman about a promotion a urology group is having during March Madness:

Big Dance Meets the Big Snip: Men, Stop Squirming

Vasectomy? Ouch. So pull up a couch – and watch some hoops.

By John Kelso

Friday, March 06, 2009

The winning team at a basketball tournament snips down the nets. Then there’s the snipping that goes on when a guy gets a vasectomy.

So it was a natural fit when an Austin urology business decided to use the NCAA men’s basketball tournament – otherwise known as March Madness – to promote the procedure.

This is cutting-edge material. Talk about a bracket-buster.

“You know, the thing that really spurred this whole thing is that so many men aren’t interested in sitting still very long,” said Vikki Smith, community liaison for The Urology Team, a practice with eight surgeons. “So we thought what could be a more natural combination than sitting in front of a TV set for three days and getting a vasectomy? It’s the perfect excuse to look at the wife and say, ‘Honey, I’ve got to stay on the couch for three days. Doctor’s orders.’ ”

The name of the hoops/whoops promotion is Vas Madness. As opposed to March Madness. Vikki pointed out that one of the Urology Team members is Dr. Richard Chopp. But she said that Dr. Chopp will not be performing vasectomies during Vas Madness.

This is a marketing blunder. If you’ve got a vasectomy expert named Chopp on your team, and you’re running a basketball special, why bench the guy? “His patients all go home with a camo T-shirt that proudly proclaims ‘I got chopped at the Urology Team,’ ” Vikki wrote in an e-mail.

What better time for a guy to get himself done than during the NCAA Tournament? After all, back in the old days, the refs referred to the infraction of traveling as “double dribble.”

“I think there’s probably all sorts of familiar words we could use,” Vikki said. “They just won’t be traveling. At least for a few days.” She pointed out that doctors recommend vasectomy patients “take it easy for about three or four days.”

Vikki said that men getting vasectomies at the business’s clinic on Jollyville Road will be able to watch the NCAA tournament games on TV in the waiting area, although she didn’t seem to know which days the actual tournament games are on.

“Then we’re going to have a little popcorn and snacks out for everybody,” she said. “We try to create sort of a sports bar atmosphere without the alcohol and smoking.”Anyway, it sounds like one heckuva party. “All of our doctors, everybody who is working in the clinic after hours, will be wearing their favorite team’s T-shirt,” Vikki said.

And, adding to the fun, each patient will get a bag of frozen peas as part of the recovery kit.

“It’s sort of like using Silly Putty as opposed to a brick,” Vikki explained. You know, brick. Like when the point guard clanks the ball off the rim.

John Kelso’s column appears on Sundays, Tuesdays and Fridays. Contact him at 445-3606 or jkelso@statesman.com.

For the link to the original article click here.

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GO WILDCATS!!!!!!!!!!!!!!

To everyone in the TLeC community, have a great weekend! And get off the couch once in awhile between games.