NEVER THOUGHT I WOULD......

I am writing this in early January, 2021, as I reflect back on 2020.   I never thought I would:

1.  Miss out on the births and early, (quickly) changing months of life of two grandchildren. (so long awaited)

2.  Miss getting on a plane. (wasn't a fan.  I was a homebody.)

3.  Miss grocery shopping (hated it before!)

4.  Switch to eating mainly a plant based diet, thanks to Purple Carrot (highly recommend). I guess I am now a "flexitarian."

5.  Eat, let alone, love tofu! (would never touch the stuff.  Now, I eat it twice a week!)

6.  Not go the gym on a daily basis, as I had for 29 years!

7.  Not get a manicure or pedicure for 10 months (or more?)

8.  Take hugs for granted.

9.  Take restaurant dining and meeting friends for coffee for granted.

10. Miss getting to wear my "normal" clothes and shoes.

11.  Miss seeing my jewelry (have started wearing it now, so that I can see it!)

12.  Miss "playing" at Ulta and indulging, especially at sale time.

13.  Have to cross the street when I saw someone coming close to me.

14.  Have to wear a mask in public-EVER!

15.  Only be able to see people's eyes and not their full faces.

16.  Witness the elimination of funerals, gatherings and physical contact after loved ones die.

17. Be busier and more involved with grief and loss now than when I was fully working.

18.  Hear now much kids and their parents want schools to open (remember how they used to all look forward to vacations?)

19.  "Attend" so many more events, exhibits and concerts online than I would have in person.

20.  Finally, and most importantly, live in a period of time where there are food lines, maxed out hospitals and funeral homes having to bring in trucks to house dead bodies, doctors and nurses caring for patients (without protective equipment) and then having to live in separate quarters in their own homes to protect their families, families that can't be with their elderly relatives and grandparents, people dying alone, having so many of our everyday freedoms taken away, spending so many holidays alone, away from family.

This is my list (thus far).  What's on yours?

SEPTEMBER 11, 2018

      September 11, 2001 is a date that most of us still, and probably always will, remember with pain, horror, grief, and for many,  PTSD.   Yes, we have moved forward in our lives since that awful day, because, well, what choice do we have?  Life is for the living, it is said.  However, we can't help but go back in time, every year, to that beautiful, perfect fall day, when hell rained down from those blue skies.   Lives where changed forever.  People were changed forever.  

     On a more personal level, seventeen years later to the day, 9-11-2018, my family experienced our own traumatic event on another beautiful fall day.   My daughter gave birth to a beautiful baby girl, perfect in every way......  born still.  To go from the highest of highs, from  such joy, anticipation and excitement to the lowest of lows, such shock, horror and disbelief, in the blink of an eye was incomprehensible, not to mention devastating beyond belief!!  FINALLY, after undergoing 5 years of infertility treatments, injections, so many doctors, so many scans, so many  hopes and dreams,  we were SO CLOSE to all of that being behind us (I am using the plural form, because this has affected the whole family, not just mom and dad).   We went  from the doctors and nurses telling us, "Your baby girl is a bit early, so she will have to go into the NICU, but she  will probably be the biggest baby in there...... She has the strongest heartbeat.....You have nothing to worry about"  to hearing, "We can't find a heartbeat" is as crushing a blow to the heart....to the mind.... and to the body as one can ever experience.  

   Why am I writing about this now?  Because, two years later, especially at this time of year, even though the aftershocks are still there (and always will be),  I now have enough distance and perspective to want to get out the word about infertility and reproductive loss.  Why is our society so OK with being able to talk about other kinds of losses, (well, for a short period of time anyway!), or physical ailments, but miscarriage, stillbirth, neonatal deaths are still whispered about or not spoken about at all?  We must change this!  Too many moms and dads have had to carry this burden by themselves which makes their suffering that much worse, especially because these pregnancy losses are so much more common than most people realize.

   Miscarriage is the premature end of a pregnancy  BEFORE the 20th week.  More than 20% of all pregnancies end in miscarriage.   Stillbirth is the death of a baby AFTER 20 weeks. "Each year, in the US, approximately 29,000 babies are stillborn- 4 times greater than the number of babies who die of SIDS.  Some researchers even feel stillbirths are SIDS deaths in utero! Approximately 60% of all stillbirths are unexplained (we are in that category).  Neonatal death is the death of a baby anytime between birth and 4 weeks.  The estimated number of neonatal deaths in the U.S. is approximately 19,000. " (Empty Arms by Sherokee Ilse)   I had no idea!  Did you?

   I don't want to get bogged down in stats.  What I'm trying  to show is how prevalent these losses are and, yet, unless you are, or know of, a couple experiencing infertility and/or pregnancy loss, you really have no idea how many other couples struggle with this.  Why do they feel shame?  Are people ashamed when they get cancer?  Or have a broken leg?  Of course not!     This should not be any different, but it is.  Unfortunately, these couples self isolate  with their pain, anxiety, depression and loss of self esteem.  The needed support and understanding is not forthcoming, because no one knows!   Shhhhh.....don't tell anyone.  Or, if they do happen to tell, the would-be supporters  have no idea how to relate or what to say, so they either say nothing  or something like, "You're young. You'll have more kids."  Really?  Can you guarantee that?  Do you know what it took for us to get to this point?

   In our modern culture, "we expect to come home with a live and healthy baby 9 months after a positive pregnancy test, to a nursery we have lavishly prepared, filled with clothing and other goodies received during joyous baby showers.....Why has modern culture departed from the acknowledgment that pregnancy, if achieved at all, does not always result in happy endings?  Where is the space to acknowledge this before pregnancy?"  Dalit Kaplan (http://storywell.com.au/)

    Try to imagine what it is like for a couple who has experienced these kinds of struggles to see pregnant women on the street or couples walking their babies in their strollers or even friends and/or siblings easily getting pregnant and having healthy babies.  It's gut punch after gut punch after gut punch.    Whether it's a pregnancy loss at 6 weeks, 32 weeks or even at full term, it is extremely traumatic.  "There are no culturally recognized rituals to assist infertility patients in the grief process."  Isn't it time that we start some?  This means that couples have to be more forthcoming.  Please come out of the shadows with your pain, so that you can get the support you need and deserve.  Not everyone will provide that safe place for you to land.  That's OK.  Keep trying until you find the ones that will.   

 Speaking of which, to our friends and loved ones, as supporters of us and of other families who know the same heartache,  please don't judge or give us advice.  We just need you to listen to our stories, to our struggles to conceive or to hear about our babies that once lived, in utero, that were alive and kicking, for whom we had so many hopes and dreams, just like you had for your kids when you were pregnant.   Please mention these babies' names, now and years down the road, when yours and other kids are getting older, but ours are not.  Don't try to protect us from our pain.  We will still be sad and grieve that they aren't here, whether or not you mention it.   You don't have to know "the right thing" to say.  Just show that you're interested, willing to listen or, simply, that you just didn't forget they were here.  They will always be a part of our families, a part of us.  No matter how many other children come into the family, the ones that didn't make it will always have a place and will never be replaced.  There is certainly enough love to go around.

 Also, please don't forget dads when it comes to infertility and pregnancy loss!  Men's feelings so often get overlooked as others ask how the wife is doing.  Understandably, husbands and partners feel helpless, because they can't fix what's going on or  make things better.  Not only that, but they may be unable or unwilling to share their feelings with their wives who are going through their own grief.  They want to be her coach or her shoulder to lean on, while all the while, they, themselves, could use some TLC.  They may act stoic, but inside, they, too, are devastated.  Reach out to them however you can.  

 Now, I don't want this to be a depressing post, because as tragic as this has been for us, we have come out the other side and have lots to celebrate.  My daughter and son-in-law have given birth to Olive's baby sister!   Needless to say, we all hug her a little tighter and inhale her tiny being to the max and beyond, because of what we've been through, but this is the gift that Olive gave us.  Thank you, sweet Olive!  How forever grateful I am that I was able to hold you, too, in my arms, before I had to let you go.  When our hopes and dreams died with you, when the life we planned on having with you disappeared,  you taught us to dream new dreams, hope new hopes and to live life, albeit a different one, for you, who was never even given the opportunity to breathe your first breath.  We will do these things FOR you and BECAUSE of you.   

  So, on this September 11, 2020, happy second birthday, Olive!!   Your little sister, Wren, will always know that you came first and how very special you were and are, because we will never stop telling her about you.  As long as WE live, YOU will never die.   We love you SO much!

  

LOSS AND OPPORTUNITY- FLIP SIDES OF THE SAME COIN

    This coronavirus is certainly getting in the way of our living our lives, isn't it?  Or is it just getting in the way that we were USED TO living our lives?   Is it safe to say that most of us actually liked the ways in which we were conducting our lives?  I can't speak for you, but for me, personally, I was a happy camper.  I didn't need this strong wind to adjust my sails, thank you very much!  I was sailing along just fine, with a few storms here and there, some rough waters,  to be sure, but was still able to keep the boat upright and moving along.

      But, as we find so often in life, things don't stay good forever,(unfortunately!), just as they don't stay bad forever (thank goodness!). The only thing constant in life is change.  So what are some of the opportunities that have come out of the losses most of us are experiencing?

      CREATIVITY is off the charts!  My own sister and brother-in-law are making birdhouses and mailboxes that are one of a kind and utterly spectacular!  What a team they have become!  (check out Terry Janis on FB). 

All over the internet, creative people are designing masks.  Teachers have been creative in trying to teach virtually, as have personal trainers.  Museums and musical theaters are opening their virtual doors to us.  These are just a few examples.  I'm sure you could share alot more.

     TIME has also become so much more appreciated.  It used to be fleeting, because all of our schedules were so maxed out, that quality time was hard to come by.  We were always rushing off to the next meeting, class, event, trip.   My niece, who never got to spend enough time with her kids, because of her hours of work, has been able to be a full-time mom for once (although that can't last much longer). My son-in-law who spent a large part of his career traveling, both nationally and internationally, has been quarantined at home with his newborn daughter and wife, which has been invaluable for all of them!  What a gift it's been.  There is no "dad helping mom out" here.  He is a full-time dad, conducting business online, with his baby strapped to his chest!  And an extra bonus is that my daughter is fortunate enough to be presented with homemade breakfast, lunch and dinner, brought to her side, 3 times a day!  Lucky gal!

     APPRECIATION has come front and center and isn't relegated to "oh, by the way, thanks." Sometimes, we didn't even say that.  How often did we ever think of grocery store clerks and stockers, truck drivers, farmers, teachers, restaurant owners and staff, hospital staff, nail techs, hairdressers, etc. other than to know that they sure made our lives easier?  But did we ever really give them much more thought than that?  Probably not much.  I will not be stingy with saying thank you anymore.  There is plenty to go around.

    FREEDOM was so taken for granted, wasn't it?  How awful it had to be to live in a communist country, we might have thought.  Well, we certainly don't live in one, but we now know what's it like to have more restrictions on our freedoms than we've ever had before. To  be able to go outside, visit places or people we love just because, go to the grocery store, never seeing empty shelves, eat out at our favorite restaurants, go to movies, plays, concerts, have friends over for dinner or cards or conversation.....oh, to be free.  You know that old saying, you don't really know what you have until it's gone?  I'll bet that most Americans took freedom for granted, just because we were born here. Our soldiers didn't and don't, but alot of us did.  Such a shame. Soon, when we are able to go and do those things that we did before, how much sweeter they will be.

    RELATIONSHIPS have taken on a whole new meaning.  Maybe we used to complain about family members, but now, we would give anything to be able to be with them in person (that is, unless we have all been quarantined together! ha! ha!)  Parents of adult kids who all live far away from each other, grandparents and grandkids who may even live in the same city, but have to wave to each other from across the street or behind a window- Zoom and/or FaceTime have become invaluable.  Families play games together online, friends have happy hours, grandparents read books to their grandkids, etc.   We are making time to actually laugh, love, play and cherish each other!!  I hope this never changes back to the way things were!
    So, yes, my friends, these last couple of months have been more than difficult.  I'm not telling you anything you don't already know!  But if we could just stand still, for a moment or two each day, (hopefully, more than that),  and look around us- take in the blue sky and the green grass, the colorful flowers and the huge shade trees, watch and listen to children, talk to the elderly and learn from them, treat our loved ones, and ourselves,(!) with kindness, tolerance and compassion- then, just maybe, our more open eyes and hearts will make our world even better than it was before.

      

      

"EVERYTHING WILL BE......"

    Before the world turned upside down and inside out, I had just completed an audiobook, entitled, How To Stop Time by Matt Haig.  The title of my blogpost comes from that book, along with this quote:  "The only way to stop time is to stop being ruled by it. Don't drown in your past or be fearful of your future.  Live NOW!"
    How many of us lived in the now, before the coronavirus actually forced us to do this?  How many of us complained about our busy, out of control lives, but, for some reason, just could not slow down?  Heck, I sometimes thought to myself, "If I could just stay home for a week, without going to the gym and doing everything else that I do everyday, I would get so much done!"  Well, Jo-Ann, be careful what you wish for!  Now, I really miss going to the gym, seeing all of those familiar faces in my classes (not even knowing some of their names, but knowing we are always there together, day in and day out) and having instructors and trainers motivating me, so that I don't have to motivate myself.  Now, it's all up to me.  I know myself.  I will still exercise, but it won't be the same.
   There are so many, many ways in which all of our lives have changed, but we must focus on how our lives have changed for the better, for now.  Of course, I am not talking about the hundreds of businesses, restaurants and personal service people that have lost their shirts!  That is beyond heartbreaking!  I am trying to look at the new opportunities that are presenting themselves to us, things that we never thought of before or if we did, never acted upon.
   We are all trying to adapt to a world that is ever changing under our feet, daily!  That is incredibly difficult, not to mention unsettling.  We have lost the safety and security of the world we knew.  And we are all trying to figure out how to maneuver this new world, wondering whether the changes will be temporary or permanent.
  "What's unfolding now can awaken more opportunities for compassion than ever before.  Suffering can bring out love, wisdom and courage." Tara Brach.  I love all the different ways that I hear my friends and loved ones are connecting with each other, whether it be Zoom, Skype, FaceTime, group texts, etc.  Just because we are physically separate doesn't mean that we should be socially separate.  We need to lean into one another right now, more than ever.  We are human beings and we need connection.
   Lastly, don't forget to take care of YOURSELVES!  Be nurturing to YOU!  Walk outside (actually look at nature, rather than just whizzing on by it!) listen to music,  sing, dance, learn a new instrument via UTube, light a fragrant candle (I just finished melting down a mint chocolate chip one!  Ahhhh!) take online learning courses on topics that interest you (I highly recommend the Great Courses!  They have every topic under the sun!), clean out the junk drawer, read a book, write a book, make a will, write love letters, pick up the phone and call people that you usually only text or email, if at all,  etc. etc.  All of these things and more that you come up with make you feel so much better than just watching the depressing news everyday!  Yes, stay aware of the latest developments, but if you find yourselves starting to get really depressed or angry with your loved ones, it's time to turn off the news and turn on the good vibes.  As I wrote on FB, sit down to meals together, via Skype or FaceTime or Zoom.  It's like going out to dinner together, without actually going out to dinner together!  Ha!
   We will get through this.  Society will change.  We will change.  Change is not a bad thing.  
  "I have lived through this horror and can face whatever else comes along."  Eleanor Roosevelt
   
   

Every Person Has A Story!

   Something has been bothering me lately and it has to do with the death of Kobe Bryant, Gianna Bryant and "7 others!"  Every single time this story has been mentioned on the news, it has been presented as such.  I want to yell at the newscasters and say, "If a member of your family was one of those '7 others,' would you tell the story differently?"
   Every person on that helicopter had a relationship with Kobe and basketball, but no, they were not famous.  BUT each one had a family, like Kobe, and each one had an important, fun, exciting life that he/she was living and each one mattered to so many people who loved him/her.  Each and every one!  But the news mainly centered around Kobe and Gianna.  Do the others deserve to be clumped into one lump sum as "7 others?!"  NO!!!
   This happens every year when it comes to September 11, too.  The Twin Towers get all of the attention, while the Pentagon and Shanksville, PA are almost like after thoughts.  It annoys me every year!  They all deserve the same amount of attention, because each and every person that was killed that day, went to work, like it was just a normal day, and each expected to go home at night to be with their families.  They are you and me.  
   I was watching CBS Sunday Morning a week or so ago and they did a very moving piece on Auschwitz.  They said that Auschwitz is the largest cemetery in the world!  One million people are buried there!  In 1939, before the Holocaust, there were 16 1/2 million Jews in the world;  now, 75 years after Auschwitz was liberated, there are just under 15 million, worldwide!  It's truly beyond comprehension to be able to picture how many lives were snuffed out.  It almost becomes mind numbing like our national debt, or other government figures in the trillions.  What does that look like?  Not a  clue!  It's a lot!  The same with the millions of Jews who were slaughtered.  Too vast to comprehend.  I have been to several Holocaust Museums in Washington, DC, Israel, and Dallas.  THAT'S where one can begin to comprehend what was lost, because in these sobering museums are where you see the shoes.  For each pair of shoes, a person existed- man, woman, child- each person put on a pair of shoes that day or mothers and dads put them on their children and expected to take them off at the end of the day, maybe placing them beside their warm beds.  Each person had hopes and dreams and talents and love and and and.........Thinking of a pair of shoes rather than a humongous, incomprehensible number hits you between the eyes... in the solar plexus.... in your soul.
    So, back to Kobe.  I know that he was a giant of a man and I am sad that he died, especially the way that he did.  I am sad for Gianna, who had her whole talented life ahead of her, and I'm sad for all of those people who loved them both, especially his wife and other daughters,  but I am  equally sad for John Altobelli, his wife, Keri and their daughter, Alyssa.  Three members of one family wiped out in a flash!  What about their loved ones left behind?  Let's say the names of Christina Mauser, mother of 3, Ara Zobayan, the pilot, and Sarah and Payton Chester, mother and daughter.  They died, too and their lives affected so many other lives!  I love what Todd Schmidt, the former principal of Payton's elementary school wrote: "While the world mourns the loss of a dynamic athlete and humanitarian, I mourn the loss of two people JUST AS IMPORTANT (my caps!)...THEIR IMPACT WAS JUST AS MEANINGFUL, THEIR LOSS WILL BE JUST AS KEENLY FELT AND OUR HEARTS ARE JUST AS BROKEN."  
   Each person has a story and each story deserves to be told.

WHEN AN EX IS STILL A FRIEND

     I would like to begin this post by explaining what DISENFRANCHISED GRIEF is.  It is a grief for which society doesn't really sanction it as being as recognized or as worthy of support as the more "common" losses are entitled to.  What are some examples?  Couples who have suffered a miscarriage or stillbirth, especially the fathers,  families of prison inmates,  women and their partners who undergo abortions or infertility, suicide survivors and yes, ex-spouses.  Without the support that they are entitled to but don't receive, they grieve in isolation, which only compounds their grief.  Grief is already an isolating experience, because most people feel that they are the only ones who feel this way, whatever that way is, so adding an extra layer of isolation and the picture is not pretty.
    So, now, for the personal stuff.  My ex-husband, David, recently died at the age of 75.  Even though we had been divorced for 18 years, we met when we were seniors in college, were married for 30 years, and had been part of each others' lives for 50 years!  That is my entire adult life!  We made a family together and to many people, surprisingly, we remained that core family of 4 in many ways.  David and I both felt that our kids were our #1 priority and wanted to maintain as much stability as possible, despite our no longer being married.  
    Extended family members knew of our close relationship, as did most of our friends.  In fact, they marveled at it and always talked about how unusual it was!  It was wonderful to still be able to maintain connections with each other's families of origin.  David attended my dad's 100th birthday party, and I attended his mother's 100th!  (Yes!  Weren't we fortunate to have that longevity?!). When he got so sick, I, along with our daughter and his wife, went to every's doctor's appointment together.  We were a team. He always used to joke with the doctors that he brought his posse.  In other words, divorce didn't end our relationship; it only changed it.
   For people who didn't know us well, when I would relay things about my ex-husband, immediately, I would always have to quality by saying, "but we're still good friends!"  You must admit that most people hear the word ex- wife or husband and immediately assume that the relationship is no longer a good one!  Right?  I always chuckled to myself when I had to add that qualifier, but sometimes, it really wasn't funny.  It was also sad, because of society's automatic response to the word, divorce, assuming that the marriage ended badly.  Never assume anything or as the old saying goes, "Assuming makes an ass out of you and me."
   Here's where I would like to do my part in changing assumptions and attitudes that people have to ex spouse grief.  I was talking to Megan Devine, the author of the book I previously promoted and when I told her that I wasn't getting the support that I needed or wanted, she recommended that I just say a good friend died, instead of saying ex-husband. Then, I would automatically get support, (although even friend grief has its' limitations).  Good advice.
   As a bereavement specialist, my mind knows that people just don't know any better.  But as a griever, my heart still breaks that many, NOT ALL, who knew of our close relationship still sent condolences, in the form of food, donations or cards, to David's widow and not to me.  Again, I did receive a few, but in no way, close to the amount that his widow did.  And these were OUR friends!  It's like they had an imaginary limit in their minds,  as to how many condolences they could send out to memorialize one person and if it came down to either his widow or his ex-wife, she was the more legitimate griever.  I was the disenfranchised one.
   I mentioned in my earlier blogpost, I'm on a mission to educate people about grief, so I hope my readers will take this to heart and apply it to those they know who might be grieving, especially the disenfranchised who are socially marginalized.  Stop and think that the ripples in the pond of grief are far reaching, beyond the immediate family, even to very good friends, who just happen to be exes.

I'M ON A MISSION!

     And what might that be, you're probably asking?  It's to bring loss and grief out into the open, out of the scary, dark corners where it usually resides deep in our souls.  Why are we so open and carefree when we talk about our joys, but feel the need to retreat and hide when we are sad and grieving?  Love and grief go hand in hand.  They co-exist.  And yet, it is so much easier to talk about one and not the other.  Why is that?

      Here's why.  Because back in the early 1900's, families lived near each other, on the same street or even in the same house.  Everyone was exposed to death as it happened.  Children were not shielded.  They witnessed and grieved right alongside the adults.  There was a natural network of support and community. Death was a normal part of the life cycle.  It still is!  
   BUT we have traveled far away from our families today.  Where is home?  Where we grew up?  Where we raised our families?  What are our obligations toward one another today?  Who takes the lead when it comes to death and dying issues?
  And in this modern age, how do we even know who's grieving?  We certainly don't wear black armbands to show the community that we are mourning.  We don't wear black for a year like we used to back then.  We are expected to go back to work after three days!  We attend funerals and then, quickly, go back to our own lives, hoping, that the bereaved will also be able to go back to theirs, sooner rather than later.

   What a shame.  Grievers don't know if they're "doing it right."  Those who try to support them, don't know "the right thing to say or do."  No one is getting their needs met!  That's because we live in a death denying society.  Let's not talk about death, then, it won't happen to us.  "Because we don't talk about grief in our culture, we have personal and global backlogs of unheard and unspoken grief.....We have an epidemic of unspoken grief.....The gag order on pain is everywhere."  

Megan Devine in It's OK That You're Not OK (my favorite book on the subject and highly recommend!)

    I hope that you will tune into my blog as I do my best to bring loss and grief out from the shadows, both as an educator and as a griever.  This just has to end.  Too many of us are hurting and we think that we're crazy or abnormal.  Trust me.  We are neither.  We are grieving.  And we have lots of company.  We are not the only ones.  It just seems that way.

   Until next time.....

    

                 Happy New Year and New Decade!!

   

Hi there!

    I cannot believe it's been 4 years since I last wrote on my blog!  I have no idea why I stopped blogging or even if anyone ever read my blog in the first place (!), but I've decided to start it back up again.  As a grief educator who has experienced alot of personal grief in these last few years, I just felt that now, I needed/wanted to vent from both vantage points- the professional and the personal.

   I'll start from where I left off in November, 2015.  Both my mother and my brother had recently died.  I was commenting that very few people my age were fortunate enough to have both parents, examples being George Bush, Prince Charles and myself (that's rather good company, don't ya think?!)  Well, fast forward to 2020.  Prince Charles and I are the exact same age, one day apart (I'm older! ha!). He still has both parents..... I have none.  George Bush......none.

   On top of these losses, my own children's dad died recently.  They will never get to remark about having both parents when they are my age.  Neither will my 20 something year old niece, whose dad, my beloved brother, died too soon.  I feel so badly for them.  I know that they are the "normal" ones and I am the outlier, but still, my heart aches for them.

   My siblings and I were so unbelievably lucky to be able to throw a 100th birthday party for our dad, where he was able to fully participate and enjoy.  He was gone 2 months later.  My kids threw a 75th birthday party for their dad.  He, too, was gone 2 months later.  Unreal.

   I think that alot of people stop and reflect, when an old year ends and a new one begins, on what was (past) and what will be (future hopes and dreams).  My piece of advice here is, don't forget to live in the present.  It all too quickly becomes the past.  Just yesterday, literally, it was 2019.

    

FROM SIX DOWN TO FOUR

   My siblings and I have known, and discussed, for a very long time, how very fortunate we were to have all been middle aged and to still have our parents.  I am the only one of my friends to have been so blessed.  In fact, I was thinking not too long ago, who else has both parents at this age?  Prince Charles and his siblings  ( Charlie happens to be one day younger than myself!  My mother and the Queen used to call each other often during their pregnancies- just kidding!)  as well as George Walker Bush and his siblings.  We are all in a very elite club, of which I loved being a member.  I really did.  I never took it for granted.

    But, we’ve been kicked out now.  Our membership has been revoked.  Our mother died recently (on my daughter’s birthday!  She and I are going to have to discuss this when I see her!)  And because our brother, Scott, preceded her in death by two months, my family of origin has now shrunk from six to four.  I cannot tell you how strange that feels after 60 plus years of always being a happy and healthy group of six.

    I know I am fortunate.  I have always known it and yet, when life as we know it, changes course, suddenly and drastically,  it is still a shock to the system.  I used to tell my friends that I promised G-d that I would not be upset with Him when the bottom fell out, because I was so grateful for how long he had blessed my family and myself.  I knew I was overdue.  And I am holding true to that thought.  On the other hand, I am asking Him why He had to pull the rug out from under me all at one time?!   The weekend I was leaving to go to my mother’s funeral was also the weekend of our monsoons here in Dallas and I was very afraid that I might not even make it out of town!  On top of that, I discovered, the night before my mother died,  that my hot water heater had been leaking for awhile and was ruining floors!   Yes, G-d, I have been blessed, and fortunate, and I’m not complaining.  I’m just asking, could you not have hit me with a 2x4 all at the same time???  Just asking.

    What scares my two older siblings and myself now is our dear ol’ dad.  He’s 97 and has just lost his youngest child and his soulmate of 74 years, within two months of each other.  Outside of his being in WWll and overseas for the first two years of my oldest brother’s life, he and my mother have not spent one single day apart.  Although she didn’t live with him the last 16 months of her life, because of her dementia,  she still lived within walking distance of his apartment and he would visit her daily.  My heart absolutely aches for him.   

     And you know what?  My heart aches for my siblings and myself, too, as selfish as that might sound.  Dad told my mother as she was being buried that he wouldn’t be far behind her.  You’ve heard of couples in long term marriages dying within hours, days or months of each other from a broken heart.  It really does happen.  I’ve told my dad that I know he wants to be with mom, but we just can’t handle another death so soon.  I know we’re being selfish, but we need and want him here with us, for as long as he can hold out.  He’s in remarkably good health, and still has his mind, but his heart?  His heart is no longer in his chest.  It’s up there with his wife and son.  

   We never told my mother that Scott had died.  Our running joke is that when she got up there and saw HIM, she said, “What the hell are YOU doing up here?!”  Because Scott was so much younger than the rest of us, and was like an only child when the three of us left home, Mom called Scott her playmate.  They played cards, bowled together and played pool in our basement.  He would have been devastated if he had had to bury her.  My hope is that they are playmates once again,  both whole, healthy and happy.  So yes, I still see the blessings all around me, G-d.  I won’t ask you for any favors, but when my parents’ 75th anniversary comes around in December, is it wrong of me to ask that they NOT spend it together?

THE EMOTIONAL NEEDS OF CANCER PATIENTS

  When I was first asked to speak on this topic months ago, it was rather ironic, because my younger brother, Scott, was in the final stages of his 7 year battle with Non-Hodgkins Lymphoma.  I joked with him and his wife in August, telling them that I wanted them both to come to Dallas to be my show and tell.  After all, they could address the topic from within the trenches, much more than I ever could.  But knowing the talk was in October,  I was pretty sure and they probably were, too, that he probably wouldn’t even make it till then.  As sad as that was to think that at the time, it was even sadder when it came true.  Scott died one month after that visit.   So what I am about to tell you comes from my own experience of having had thyroid cancer at the age of 39, from my 25 years of being a bereavement specialist, from volunteering on the oncology floor of Medical City Hospital for 3 years  and from two important books, both written by Jewish women.

  

    Letty Cottin Pogrebin who wrote many books, one of which was Deborah, Golda and Me, also wrote a wonderful book when she was diagnosed with breast cancer at the age of 70, called HOW TO BE A FRIEND TO A FRIEND WHO’S SICK.

    Lori Hope, who happens to be Dr. Norman Cousin’s daughter,  had been diagnosed with lung cancer.   She has written an equally informative book, called HELP ME LIVE- 20 THINGS PEOPLE WITH CANCER WANT YOU TO KNOW.  I highly, highly recommend both of these books.

   

    Getting a cancer diagnosis is, in one word, traumatic.  There is almost a “paralysis of body and mind.”  A two time cancer survivor and therapist says, “it feels like all at once, we’ve been plunged into the world of the absurd in which nothing makes sense.” (Help Me Live).  She adds, “We may feel angry at our body’s betrayal of us and deeply lonely….We fear not only death but also disability and the loss of independence.  We fear the unknown.”   Letty  writes, ‘Normalcy’ is that marvelous mindless state in which one has the luxury of taking one’s body for granted.” 
    My brother, Scott, wrote these words when he was first diagnosed:   “Once upon a time, and not that long ago, I didn’t have an oncologist. I’d never had a CT or PET scan. I regularly donated blood, but had never received any. I visited people in the hospital, but hadn’t stayed in one. I saw a doctor once a year. I’d never had a drop of chemo, and had more hair than I knew what to do with.

Fast forward to today, and look at the photo above. {It’s his very thick medical file}.  That’s my actual chart at my oncologist’s office. It’s my medical biography of the past six years. It’s so fat it doesn’t fit on the back of the doors of the exam rooms anymore.”      

   

   So what  do newly diagnosed patients need when their world has turned upside down and inside out?  “Love.  Patience.  Support.  A shoulder.  A hand.  Reassurance.  A listening ear and kind eyes.”  Every patient is different, with different needs and wants,  but every person has these particular needs in common:  to be heard, respected, understood and valued.  Most of all, to be loved.  

    Ms. Pogrebin  writes that when she became ill, she “became fascinated by the disconnect between how people treat sick people and how sick people wish to be treated…..How thin and permeable is the membrane between good intentions and bad behavior.”   Illness tests old friendships, sparks new ones, changes dynamics of existing relationships, reverses roles and much more.

    

    What I most often hear from people trying to visit the sick or dying is, “I don’t know what to say.”  But it’s really very simple.  The six words to say that are the most effective when visiting are these:  “I don’t  know what to say.”  Many people avoid visiting those who are ill,  for this very reason,  and their avoidance is more devastating to the person who is ill than your saying the wrong thing.  One melanoma patient said, “I know that my being sick scares you.  It scares me, too.  Don’t stay away from me because of this.  We don’t have to talk about it.  Just be here for me.” (Help Me Live).

    

    Speaking of not talking, I want to stress the importance of silence.  Alot of us are uncomfortable with silence, and yet silence is “unspoken eloquence.”   Again, in the simplest of terms,   G-d gave us 2 ears and one mouth for a reason.  Jeff Kane, M.D. writes:  “Be a mirror, not a window.  Listening is not about inviting people into your soul; it’s about entering theirs.”   (Help Me Live).  

   

    It’s natural to relate their experience to a similar one of your own, “but when you know that that person really needs to be heard, keep the focus on them.  Don’t worry about the wisdom you’d like to give.  Simply listening reveals your wisdom more than anything.” (Help Me Live).

    

    Sometimes, patients will seem to be angry with you.  They don’t really mean it.  They’re frustrated and you just happen to be handy.  Don’t take their anger personally.  It’s not about you.  You are not there to fix the situation, rescue them or give advice.  You won’t have all the answers.  They don’t expect you to.  Listen without an agenda.  Open your ears and your heart.  Keep your mouth closed.

     

    I mentioned not giving advice.  If you’re thinking about how to fix someone, then you’re not listening, or as my older brother says, “If you’re talking, then you’re not listening.”  When people are sick, one of the most important things they lose is their sense of control and their autonomy.  Letty writes, “Illness is the embodiment of powerlessness.”  Although you only mean to help when giving advice, it can be very hurtful, another reminder that others are in charge of their lives, not they.  First ask, say something like, “I have some thoughts about what you’re going through.  Would you like to hear them?  I won’t be hurt if you don’t.”  Always ask permission first.

   

    One thing that alot of us have said to our loved ones who are battling illness is,  “Think positive!”  Dr. Jerome Groopman, an oncologist and author writes that thinking positive has no scientific basis and is very cruel to the patient, because you are basically saying that they are responsible for their cancer or for not getting well, because they are having negative thoughts.  It’s blaming the victim.  We do this because it makes US feel safer.  We are assuring ourselves that we somehow have control.  One man wrote, and I love this,  “People want to blow rainbows up my rear...If it were a matter of being positive, I’d have been cured the first two times I had treatment for cancer!  Now I’m in my third treatment and I’m still getting the same song and dance from people and it’s frustrating.”
(Help Me Live).

    

    Another way that we often blame the patient, when we really don’t mean to, is by asking how they got cancer?  We automatically think that those who get lung cancer smoked  when 15-20% of never smokers get diagnosed with lung cancer!   My sister thought she got breast cancer because she always stood in front of the microwave oven.  My younger brother thought he got Non-Hodgkins Lymphoma, because he used to chase after the DDT truck when he was a kid.  Most of the time, we don’t have the answers as to why we got sick, and we are already blaming ourselves, so please don’t ask them why.  Three therapists wrote in one article, “We don’t blame our pets when they get cancer.  Why do we blame ourselves?” (Help Me Live).

    

        Often, people offer platitudes, because they don’t know what else to say, but platitudes actually add distance and come off as lacking compassion.  Examples: 1)  “You’re so strong.” “ By focusing on strength, you are denying them the opportunity to be weak, to crumble and to cry and to curse their disease.” ( Help Me Live).  2)  “Everything happens for a reason.” Really?  What’s the reason?   3) “You’ll be just fine.”  Nobody, not even the oncologist, knows that.  4)  “Cancer is a gift.”  One woman wrote, “What is the return policy?”

5)  “AT LEAST, you got to say good-bye” or “AT LEAST they caught it early or many other at least statements that you’ve either caught yourself saying or have heard.  This totally minimizes or even worse, dismisses a concern or worry the patient might have. ( Help Me Live).

    

    Alot of people with cancer want a break from cancer, with all of its’ appointments, tests, procedures, etc.  One of the best gifts you can give a cancer patient is the gift of laughter.  Bring them a book of cartoons or a funny movie to watch.  Leave a funny message on their voicemail.  However, in my family situation, it was my brother who was always the funny one and when he got sick, that didn’t change one bit.  In fact, HE was the one who kept up OUR spirits!  I have 3 such  examples, out of hundreds that he wrote us over the 7 years:  “ I actually have shrunk an inch due to a cancer-induced compression fracture in one of my vertebrae!  Pretty soon I won't be tall enough to ride the roller coasters at Disney!” He lived in Orlando.  (written July 1).

    Or this written last fall, when he and his wife, Fran, were having to decide between going into a clinical trial or getting a stem cell transplant:  “Since Fran and I are both last born children, decisions have never been our forte.  We’ve passed this trait to our child.  Growing up as the babies of our families means never getting a say in anything. Even when we first started dating we would drive up and down the same road in Tallahassee trying to decide which restaurant to go to.  When we bought our latest TV, we were at Best Buy for so long, that the salesperson left for the evening.  We then spent another hour with the next guy before leaving to think it over some more.  But now TV’s have turned to IV’s, and driving has turned to thriving.  We have to make our biggest decision ever in record time.”  

   One more, written around the same time:  “The headline item this time is that the big kahuna tumor that the previous chemo had shrunk in my abdomen is back.  I’ve accidentally shrunk sweaters that never came back, so this just isn’t fair.  The other headline is that one of my new cancerous lymph nodes is pressing against my right kidney, essentially blocking it, which just pisses me off. (kidney humor there.)  My left one is fine though and says hello to all of you.”

    People with cancer need compassion, not pity.  Pity is when you feel one above another person and are looking down on that person, both literally and figuratively.  (Cite the example of Jami, on her knees in front of my mother, so that she could be eye level with her.)  How did she even know to do that???  “Com” means with or together and  when partnered with passion, it means to feel with or suffer with. ( Help Me Live).   Compassion leaves no room for judgment or condescension.     

    
Finally, offer support to the caregiver, too.  They often get left out in the cold and yet, their world has also turned upside down.  They are often filled with resentment and self pity, yet have nowhere to vent those feelings.  A motto of the Well Spouse Association, a nonprofit spousal support caregiving organization says, “When one is sick, two need help.”  The patient will be just as appreciative that you are reaching out to their caregiver as the caregiver is.

   

    The following are things that patients with cancer have said that they most love hearing:

1. I’m so sorry that this has happened to you or that you have to go through this.
2. Tell me how I can help.
3. I’m here if you want to talk.
4. Just give me my marching orders.
5. You must be desperate for some quiet time.  I’ll take your kids on Saturday.
6. I will be here with you through this whole ordeal.
7. I’m going to the store.  Do you want to go with me or what can I get for you?
8. Can I drive you to your next Dr’s appt. or chemo?  
9. Can I pick up your kids from school, soccer practice, dance class?

10.  One day at a time.

11.  It’s normal to be afraid.

12.  It’s OK to cry in front of me.  I can take it.

13.  Leaving a voicemail, saying, “No need to call me back.  I just wanted to let you know that I’m thinking about you and sending my love.”  

14.  Do you want to talk about it or not?

15.  What’s your favorite soup?  I’m going to make you (or buy) you some.

16.  Leave a simple daily text.

17.  Send a weekly card.

18.  I know what this was like for me when I went through it (or my family member).  Tell me what it’s like for you.

19.  You are wrapped in my love and prayers.  

20.  The most important statement reported by hundreds of cancer survivors was, “I love you.” ( Help Me Live).

These work well, because they convey empathy, availability or both.

    When I told my sister, a breast cancer survivor,  I was giving this talk, she told me to tell you:  “Touch is essential!”  And I know that patients  feel so ugly when going through chemo that if their partner, spouse or loved ones just reach out and hold their loved ones’ hand, touch their arm or hug them, it makes them feel less alone, less scared, less scary and, most importantly, still loved and loveable.  Which takes me back to the start of my talk, when I said that people don’t know what to say?  Now you know.  No. Words. Needed.

     

RECOMMENDATIONS FROM A GRIEF EDUCATOR

   As an educator, no matter what field of study you are in, you are constantly educating YOURSELF, so that you can educate others.  For me, being a family educator, who specializes in grief and loss, I am always reading books, watching TV shows and movies, taking seminars, both in person and online, and listening to people's stories about life and loss, as I volunteer on the oncology floors at a local hospital.  Some people think the subject matter is depressing, but for me, it's enlightening and informative, because  "There but for the grace of G-d go I," is always in the back of my mind.  I would, therefore, like to suggest to you some of the items I've tuned into lately, that I know would help out alot of you, too.
1.  The documentary that was on PBS in June, called CARING FOR MOM AND DAD(pbs.org/caringformomanddad).  It centers around the 75 million baby boomers, like myself, who are not only caring for their elderly parents, but who might, one day, have to be taken care of by their (our) own kids.
2.  Another documentary, also in June, that was on CNN, about Glen Campbell, called I'LL BE ME.  It follows him on his final musical tour with his kids, after he was diagnosed with Alzheimer's Disease.  The power of music with this dreadful disease is absolutely unbelievable!
3.  A book, called HELP ME LIVE- 20 things people with cancer want you to know- by Lori Hope.  Whether you are a cancer survivor or a caregiver to someone with cancer or any other life threatening disease, the stories shared in this book, will help you navigate this difficult journey.
4. Another book is by the famous author, Gail Sheehy, called PASSAGES IN CAREGIVING.  This is a must to have in your home library, not only for its' content, but as a valuable resource to refer to time and time again.
5. A third book written by Tom Brokaw, called A LUCKY LIFE INTERRUPTED is his own memoir about how fortunate and happy he was to live the life he did for 73 years, until he discovered that he had Multiple Myeloma and how this changed his life.
6.  One of my favorite movies of all time is from 1998, called MEET JOE BLACK, starring Anthony Hopkins and Brad Pitt.  It reminds us all to live life with mindfulness, so that we don't squander precious time and take life for granted.
These are just some of my recommendations.  I have an entire library full of amazing books, but this should hold you over for now!  Let me know what you think of them.

HAPPY BIRTHDAY TO MY PARENTS!

   As a baby boomer, I know how rare, but fortunate, I am to still have both my parents alive.  Tomorrow, my mother turns 92 and next month, my dad, 97!  Heck, my former mother-in-law also just had a birthday- her 98th!!  So happy birthday, parentals!
   You're probably asking, "Yes, but are they healthy?"  And, for the most part, they are!  My M-I-L still lives by herself, in the two story house in which my ex-husband grew up.  Her main deficit is her inability to hear, but other than that, she's mobile and as ornery as ever!  (Remember, she's my EX!)  My dad just had his physical and twice, the doctor commented that" the patient appears younger than his age".  He has less wrong with his body than I do with mine, for goodness' sakes!!  He's still mobile, is totally "with it," but has mentioned to me, more than once or twice on our Skype sessions, "I'm ready to go.  I've had a good run."  When I tell him that I'm not ready for him to go, we both tear up and then change the subject.
    My mother, on the other hand, has dementia, and although she still knows my dad and usually knows my sister, who visits daily, she isn't really my mom anymore.  Dementia is an awful disease, stealing a person's personality while leaving their body behind, almost as a tease.  "Gosh, you look like my mother, but who are you and what have you done with her?"
    I can totally understand my dad's readiness to exit the planet.  He married my mother when she was 18 and they've been married for 73 years!  He said she was very beautiful and sexy.  I actually have the photo album of them on their honeymoon in Miami, and my favorite photo is of them on the beach, with her sitting atop  his shoulders, in their bathing suits, so young and full of joy.  To my mother's credit, to this day,  she, also, looks younger than HER years.  Maybe because my dad still makes sure that her hair gets colored!  G-d forbid, she should be gray!  ha!   Both my parents are the last of their siblings to be alive and, of course, most of their friends, are now gone, too.  I know that I would feel the same way as he does, if I was in that situation.  I definitely don't want to be the last of my siblings to be alive.  I know that for sure!  I have a very, very sick brother right now, so I've thought alot about this.  I will be absolutely devastated if something happens to him, especially if both my parents outlive him!  But I will save that subject for a future post.
    I always used to wonder which would be worse?  To lose one's mind, while still being physically fit, like Ronald Reagan, or to lose one's physical body, while maintaining one's mind, as in Morrie, from Tuesdays with Morrie?  Sadly, I'm not any closer to a definitive answer.  They both suck!  I'll take door #3- let me go quickly, while still sound in both mind and body!  Are you listening, G-d?
   As a grief educator for almost 30 years, I have heard alot of stories, so I know that I am not alone with these thoughts and struggles.  I'd love to hear yours.

YOU CAN'T HAVE ONE WITHOUT THE OTHER

"Joy and sorrow are inseparable.  Together they come and when one sits alone with you, remember that the other is asleep upon your bed."
Kahlil Gibran

DON'T BE A VICTIM OF YOUR GRIEF

   We love, we lose, we grieve.   Most of the time, we are able to heal and move on.  That doesn't mean that we "get over it," because there is no such thing!  We assimilate the loss into our lives and move forward with our new reality.
    Sometimes, though, we are unable to do that, because we become victims of our grief.  We feel that by holding onto our grief, we are paying tribute to the person or the relationship that we lost.  Not true.  We are just being a victim of our pain.  Pain is inevitable, but suffering is optional.  Honor the LOVE, not the pain and not the suffering.  Sometimes, we have no control over a divorce, death or other loss, but we DO have complete control over the thinking that follows.
    Worden (1982) lists the tasks of grief:  accept the loss, experience the pain, adjust to the new environment and then reinvest in the new reality.  How long that takes is anyone's guess, because it's different for each and every person.  But eventually, we must find our power and release ourselves from the role of victim, because a victim cannot be healed.  We must learn to own our reality and our life.  Unfortunately, none of us has a time machine, which means we have no choice but to accept reality.  It's not easy and it's not fast.   But it can be done.   Reconnect with intimacy.  Choose life.

THE PRICE WE PAY

" To spare oneself from grief at all cost can be achieved only at the price of total detachment, which excludes the ability to experience happiness."
Erich Fromm

WHAT WE CAN LEARN FROM A 9 YEAR OLD!

   I saw a story this morning on CBS Sunday Morning about a young boy from Denton,  born 17 weeks early, 9 years ago, who is  now slowly going blind.  His parents are trying to fulfill all his wishes as to what he would like to see before he totally loses his eyesight.  Can you even imagine being not only Ben, as tragic as that is, but his parents, watching your son slowly lose his ability to see the blue sky, the sunset or sunrise, trees, flowers, rainbows, other children, animals, friends, yourself, just so many, many things, but most unfortunate, never to see you, his parents, and his siblings ever again?!
    What really breaks my heart is that they showed him today, practicing being totally blind, walking with a stick, learning how to manuever his soon to be new world.  And then it hit me.  Ben (and his parents) are TOTALLY living in the present, making daily memories with precision like focus, because they KNOW that their time is limited, to be able to do this much longer.  Wouldn't it be wonderful if we could all take a huge lesson from Ben and realize how important it is and how lucky we are, to be able to really, really SEE and experience our world,  every little trivial thing, because we never THINK that there will come a time that we won't be able to.   You don't need to go to Alaska to see the Aurora Borealis or to the Grand Canyon and everything else in between, as Ben's family has done.   Just live your life with mindfulness- know what you're doing while you're doing it.  Don't wait to look back at your life as an afterthought and think, "Why didn't I realize how good I had it at the time?"   And don't wait until that dreaded diagnosis or other tragedy before you say (I hear this all too often), "This really helped me get my priorities straight."  Do it now.  Do it while you still can.  Do it for Ben.

MY PERSONAL EXPERIENCE WITH DEMENTIA

     My 91 year old, beautiful mother, has dementia.  She has her good days and bad, but, for the most part, she's holding her own.  She still knows all of us "kids," as well as her husband of 73 years, my 96 year old dad!
     Neither one of my parents has ever had any real health issues, so this has been a real learning on the job kind of experience, to say the least.  However, I wouldn't call it a total tragedy, either.  There have been so many unexpected blessings that have come from this.    One of the most poignant has been that my dad, who is still in good health, thank G-d!- has taken up the mantle of communicating with us grown kids.  For most of my life, it used to be that whenever I called my parents, dad would get on the phone for only a minute or two to say  hi, and then go back to watching golf!  My mother did all the talking.  He couldn't be bothered.  Now, and for the past couple of years, Mom would sit by Dad's side, contributing a little bit, but mostly listening, while Dad did all the talking.  What a change this has been, for all of us.   Combine this with the fact that my dad absolutely LOVES technology, (he's the only one in the family with an iPhone 6!!) so with the advent of Skype, his and my world has forever changed for the better!  We Skype every single Sunday (we first text to see if we are both available!) and lately, we've actually had weekly 45-60 minute conversations!!!  This has NEVER happened before now!!  He tells me how much he always looks forward to our Skype sessions, and I do, too!  Sometimes, we're both still in our PJ's, and talking up a storm!  What a different man he has become these last few years!  How fortunate we are that he "stuck around" for us, and for him, to be able to benefit from these developments.  I have even told him that had he died a long time ago, before present technology and before Mom's illness, we kids would have had an entirely different image of him than the one we have of him today.  Of course, we have always loved him, but there's so much more to love now!  What a blessing!!
     Another blessing has been that my parents left Florida and moved back to our hometown, so that they could live in a facility that is close to two of my older siblings.  Dad really, really didn't want to have to leave the life that they had established for themselves over 25 years, but he finally gave in to the fact that he couldn't take care of Mom by himself anymore, not even with the help of an aide.   So, we set him up in a beautiful apartment that my sibs decorated and they go over there every single day!   He used to complain that my sister would never Skype with him (that wasn't her thing), and now, not only does he see her in person on a daily basis, but he refers to her as his "social secretary!"  She has always been a take charge person (much to my dismay! ha!), but in this instance, I am forever in her debt, as well as my brother's!!   And for my younger brother and myself, who don't live there, this has been such a comfort, to know that our parents are no longer isolated in Florida, (as much as they loved it), but are now surrounded by family!!
    One more blessing is the lesson I've learned from observing this dreadful disease.  While dementia robs people of so much, it shouldn't be looked upon as only a curse.  Yes, their past is obliterated and their future does not exist, but just as is true of young children, the here and now reigns supreme.  They are fully present to the present.   We, who are healthy, so often mourn the past, fret about the future, and totally miss out on the present!   What a shame!  Look at the faces of those with Alzheimers or dementia as they listen to music.  Alot of the time, they know all the words to the songs!  They are so happy to hear the music, to just sit there and listen.  Their minds aren't somewhere else.  Thirty minutes later, they will have forgotten that this music experience even took place, but for that moment in time when it was happening, they were happy.   And that is a marvelous thing.
    In the words of British Alzheimer's guru, Tom Kitwood, "We are so focused on words, on the act of talking, that we have forgotten how to communicate without them.  More than that, we think there is no communication without words."  So not true.  Reframe what you think of Alzheimers and dementia and you will see for yourself.  I have.