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  Our membership has been revoked.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