Charlotte Dementia Symposium 2016

19 Nov

Over the last few years, I have had the opportunity to speak to various groups on many  topics related to caregiving for a loved one.  I continue to enjoy counseling and speaking to groups in hopes of helping them to find a positive light in what can appear to be a dark situation.

On September 29, 2016, Dr. Chuck Edwards held his fourth annual conference on Dementia in Charlotte, North Carolina.  I was honored to speak with Kim Campbell and other distinguished speakers about caregiving for a loved one with Alzheimer’s Disease. Kim  produced, I’ll Be Me, a documentary about her husband and well-known singer, Glen Campbell, on his last concert tour through the U.S.  She spoke of their loving marriage and graciously talked about their journey from his diagnosis of A.D. through the present.  She maintains a blog,

I closed the conference speaking about The Journey Back to Self Finding Life after Care GivingIn the presentation, I shared the four “roads” one can take on the journey to find life again after losing one’s own identity to full-time caring for another.

For more information regarding this presentation or others topics, please feel free to contact me

Below: Vicki Bartholomew, Kim Campbell, Margo Woodacre, Charlotte conference



Journey Back to Self

18 Nov

The Journey Back to Self Part I

Earlier this year I was honored to be one of the keynote speakers  at an Alzheimer’s Conference in Charlotte. I was asked to speak on the  reinvention of self after being a caregiver for my husband, Ernie, who passed away after suffering through eight years of Alzheimer’s Disease.  I called my talk, “Journey Back to Self.”  In preparing the speech, I had a chance to develop a perspective on where I had been, where I was, and where I was heading in my life.  I learned quickly that I am still very much on this journey… and find every day is a new beginning. Most importantly, I am enjoying discovering more about myself and looking forward to the road ahead.

Click above link to check out the video.

Are We Ever Ready?

15 Apr

I haven’t written for months as I found it too difficult…

Ernie passed away on February 18th and, as I look back, it seems a lifetime ago.  I have felt a strong need to finish my story over these last few months not only to help others but to get a personal perspective on things that I had trouble facing during and after my husband’s last days of life.  I find now is the time to recap and share the story…

As I watched my husband’s fast decline in the last few months of his life, I felt the best answer was for his life to end. It made sense — Ernie had lost the ability to connect and lived inside of himself. I received an occasional smile and, at one surprising moment, a kiss. I also received many a bruise as he became extremely restless and would take my hand or arm and try to bite me.  He did the same with the staff.  This was a terrible time for me as I did not know what to expect with each visit.  It was also sad knowing that the proud Ernie (as the man he used to be) would be humiliated if he could see himself in such a state.

His appetite lessened and he continued to lose weight to the point of weighing less than my 124 lbs. In the last two weeks, Ernie found it difficult to swallow and within one week of no solids and little liquid, he moaned with his pain — perhaps from his organs starting to shut down.  There was no question that Ernie’s time was approaching and, as I watched a brave man, who had never complained, whimper and groan, I knew it would be a blessing for him to move on.

Four days before he finally took his last breath, I was kneeling over his bed, crying and asking for someone to help him in his agony and,  out of total surprise, he reached up and pulled my head into his chest, holding me as tightly as he could — his upper body shaking with all of his strength.  The staff and I were shocked and we cried together.  Ernie was aware of my pleading for help and knew I was there.  Despite all of us feeling he was beyond normal communication, he connected with me.   I will cherish that bonding moment between us for the rest of my life.  Shortly after that moment, Ernie began his pain medication and drifted off into a deep sleep.

Ernie passed away peacefully on that Tuesday night.  I was with him most of the day and whispered in his ear that I was ready when he was ready.  I went home for dinner and it was then that he chose to leave.  We had our good-byes and his time had come.  The next few weeks became a blur with family plans, service arrangements, and a stack of paperwork beyond what I had ever known!

But after all quieted down,  it hit me like a ton of bricks!  He was truly GONE.  As much as I felt I was prepared and ready, I wasn’t.  My adrenaline got me through all the planning, his Celebration of Life, the moving out of his room, and the good-byes to the Sunrise family of staff and residents.    Suddenly, I was alone — really alone.

My advice for anyone going through this, have your plans made ahead of time with the funeral home, research and write the obit and have important paperwork and contact phone numbers organized for when the emotional time comes of your loved one’s passing;  Then life, although in a state of confusion, will be less over-whelming.

It is my conclusion that we are never ready for the passing of our loved ones — no matter how long they have suffered. Despite how prepared we feel we are, when the actual event occurs, the loss only brings confusion and feelings of emptiness as we try to find clarity in the engulfing fog that surrounds us due to their physical void.

I now know that the lessons we can learn through this are unrivaled.   Through the days, months, years of Ernie’s disease, I am a stronger, wiser, and more complete person.  I have no regrets and I feel indebted.  The blessings of having served such a fine man through it all, was an honor.

Life will move on as it should and I now take a deep breath, give thanks, trust, and continue valuing the moment – because that is really all we have.

To be continued…

The Long Journey and The Destination

31 Jan

I just talked with the staff at the facility and we feel Ernie’s long journey is slowly coming to an end in this life.  He seems to be sleeping most of the time this week and not as interested in food or anything around him.  Last week was a challenging one for me and the staff as we saw him going through a new agitated phase with being restless, anxious, biting us, and simply not at ease.  It was then that I wondered if this wasn’t his own way of trying to “separate” himself from us. 

No, none of us are God and none us  knows when his time is over in this life — but our prayers have been for Ernie’s peace, dignity and for his greatest good all along.  With God’s help, I feel the time is near.  

Interestingly, last night I had a dream about my husband and he was the man we used to know…fully alive and happy and I felt safe being with him as we laughed together on a ride in one of his favorite cars. I awoke smiling as I realized that it had been a long time since I dreamed of Ernie as he WAS.    

Then, I opened a book in my bed stand and found some personal items that Ernie cherished about which I had forgotten:

  1.    A couple of personal notes he had written to me (and to himself) about how much he loved me.
  2.    A Valentine’s card to him from me with a lovely note written, from my heart, about my being by his side for a lifetime.
  3.    A beautiful letter from his oldest son, Dave, who wrote before he passed away, thanking Ernie for being such a good dad and for always being there for him.

After my chat with the caregiver today, I would not be surprised that those precious, personal findings were not an accident.

There is so little we know about this life and beyond but my belief is that we have the power to communicate at all levels in many ways.  I feel blessed that I got these messages.

A good friend, who has walked this road with her husband’s dementia, called me after reading my email/blog and set my mind at ease with her wisdom:  His agitation is his telling you that he is ready to move on.

It’s been a long journey.  And yes, I feel a bit frightened about his next step but I also feel more prepared.   Most importantly, though, I feel at peace that Ernie, himself, is now ready to move on.  My prayer is that he transitions bravely, peacefully, painlessly and feels the love surrounding him.

The Angels Among Us

23 Dec

I went to a Christmas party at Sunrise this week and saw a transformation take place.  My spirits were low when I arrived seeing Ernie sitting with his eyes closed in a chair in a circle around the Memory Care family room.  I couldn’t help but remember how active Ernie was the previous year for the Christmas celebration.  At that time, he danced with me and with the staff — with his great rhythm and energy.  Everyone wanted to be his partner!  But this year, there he sat, eyes closed, in his own little world.

Then, Jo Ann,  a vivacious entertainer, who volunteers her time to senior centers, arrived and began her magic.  As Jo Ann began pulling sparkling objects and bells from a basket,  greeting each and every resident with a hug, and starting the music, I watched as Ernie and all those around him came alive! Suddenly, my mood began to change, as well.  I sat and observed Jo Anne and the entire Sunrise staff  as they helped all of these dementia-stricken residents and their families smile and feel the love!  The true Christmas spirit was alive!

Ernie opened his eyes, sat up and  smiled a big grin — with an occasional giggle.  He reached out and touched my chin and nose a couple of times while the music played and others sang.  He showed an energy I had not seen in quite a while.  Jo Anne and the staff  created a festive energy in the family room which radiated around the entire center — even to those who quietly were sitting in their own “worlds.”

I stayed by Ernie’s side with my heart singing for both him and the others around us. The joy was contagious and I privately thanked  God for this transformation and for the staff who give their lives every day to those in need.  These special people truly are the angels among us and for them, I am so thankful!

At the same time, my heart sank with the realization that this moment for my husband was a “flash in the pan.”  Seeing him come alive again tended to somewhat hold me back from moving forward.  It gave me a false hope.  I have been working on “letting go” with Ernie’s serious decline but find my emotions and hopes resurfacing when I see what looks like life coming back!

This is in my life for some reason and one lesson I feel I am learning is what Buddha said:
Don’t dwell in the Past;
Don’t dream of the Future;
Concentrate the mind on the Present Moment.

These flashes are the real teaching moments.

I appreciate these precious moments and am especially thankful for these special angels among us who are here to give the love and support to our loved ones and who make a difference in our lives, as well.  They are our true teachers.

The Magnificent Kiss

21 Dec

Last night, I visited the Senior Facility and fed Ernie at the normal dinner hour of 5 PM.  As it had been for many weeks, his eyes remained closed and he took in spoonful bites, slowly chewed, and sipped on his juice as I held it up to his lips. He remained in his own world.  I found myself getting used to this response or lack of response.  There was no conversation back when I talk with him but a good feeling that he was getting nourishment as he continued to take in his solids and fluids.  I had become family with the staff and other residents as we sat together in the dining room and I was thankful for this time with Ernie and my “other family.”  The mood was always upbeat — no matter what the circumstance.

As I fed Ernie, I recalled the many dinners we had together over the years of our marriage and the interesting conversations that took place between us.  I valued his views on the many topics we discussed.  He taught me so much and opened my eyes to many things.  I had a flashback of one of the last meals we had while he was home. He held my hand, apologized for his disease and told me that he would always love me — even when he was gone.  We both cried together and then kissed. That memory was still fresh in my mind and I shared it with Ernie while I scooped up his dinner and patiently put it to his mouth.  He then finished his meal and restlessly pulled back from the table.  Dinner time was over.

The staff and I walked Ernie over to the sofa where we got him comfortably settled.  Sitting with him, my arm around his shoulders, it was his habit to fall into a comfortable nap at which time I would quietly leave for home.  To my surprise, instead, Ernie opened his beautiful blue eyes and looked directly into my eyes.  I took this moment to connect and told Ernie how much I loved him.  With that, Ernie reached up, grabbed the back of my neck, and pulled me in for a truly passionate kiss!  Whew!  It was a good, romantic kiss — just as it used to be!  My heart was pumping, I smiled, he smiled… and then the moment passed.  Ernie closed his eyes and off to sleep he went.

Out of the blue, here was another one of those surprises — a precious connecting moment.   But this time, it came with a magnificent kiss that will remain etched in my mind forever.  Once again, I give thanks.

Learning to Let Go

6 Dec

We all know that learning to let go is a part of life.   There are so many occasions where we are faced with the reality that we must let go in order to move on.   When we go from one phase of life into another, it involves letting go.  We know the feeling of leaving a home, a job, a marriage, and even an old habit behind.  And those of us who have experienced losing a parent, loved one or dear friend, know the pain of letting go of their presence in our every day lives.

Since Ernie’s diagnosis of Alzheimer’s Disease, both of us were forced to let go of  life as it had been in our normal married relationship.  I had to let go of my business opportunities and my every day activities in order to take care of his health and to stay on top of the new responsibilities of running a household and managing the finances.  Ernie had to learn to let go of the control of finances, driving a car, business dealings, and his love of playing golf, to just name a few.   As most of these let go’s were challenging for us both, we had no choice and found little time to mourn over these losses in order to keep proceeding forward.

When the disease advanced, Ernie had to move into a senior facility.   Both of us, again, faced letting go.  I was faced with letting go of married life as a full-time caregiver to a life of single living.  And despite it being somewhat of a relief from worry and exhaustion from being his caregiver, it was an emotional and extremely lonely time for me.  Ernie, on the other hand, had to let go of  the familiar comforts of his home and make the senior facility his new residence.  He had to learn to say good-bye to me each day/night I had to leave him.  Looking back, despite the emotional ups and downs, we handled these as well as to be expected.

Life now– as it has been for a year and a half — has become the norm with my visits to and from the senior facility which has become my home away from home.  The staff and other residents have become both his family and my family.  I know, deep down, that this is about to change.  Ernie is declining fast and I feel his time in this life is limited.

Over the last six months, he has lost 50+ lbs and is growing weaker by the day.  He is having frequent falls, now has a wheel chair, and seems distant and lost in how he spends his days.  Hospice visits him daily.  When not napping, he seems preoccupied with imaginary things in front of him at which he bats away or picks.  His conversation is  hushed with words that only he understands.  Occasionally, however,  a smile, a kiss or a touch of my hand surprises me as he comes into our “world” for a split second.  For that second, I give thanks.

Now, I am facing a bigger letting go…

I am not God, and don’t know the “when,” but I do feel the end of his life is approaching with each day.  I value our time together and, at the same time, am trying to prepare myself for the reality of his passing which seems imminent.  I know that the absence of Ernie from my life will be devastating and with it, will come the loss of Sunrise, “my home-away-from-home,”  its  residents with whom I have developed relationships, and the staff who I have fully trusted, and loved.

As we see it, we feel the best for Ernie now is to move on.  My prayers are for him to feel safe, unafraid, and loved whenever the time comes.  Still, I take in each day, and appreciate every moment I have with his physical presence and the visits with my family at Sunrise.   Am I ready to let go?  I’m not sure but I am certainly trying to move ahead the best way I can.  After all, letting go allows us all to move forward.