Saturday, March 16, 2019

Virtual Reality

Alternative Ways to Bring Comfort, Reduce Pain and Take Away Anxiety During End of Life

Bringing new and innovative ways of caring for your loved one during their last chapter. 

I recently spoke with the Director of a Hospice located in England. I was so excited to speak with her as I've recently purchased an Oculas Virtual Reality Headset and I wanted to see how others may be incorporating this into Hospice care. 

There are trials and studies presently active to determine how virtual reality can help reduce chronic pain and anxiety for some patients. I will certainly keep you updated with any of the studies I find. 

Virtual Reality is being leveraged as an alternative therapy to help keep patients comfortable, calm and mentally engaged. I am excited to bring this into my practice in working with individuals, both senior and heading toward the end of life. 

This is a unique opportunity for patients and their families. One of the services I offer is help in fulfilling a bucket list. There are times when it is impossible for a person to do this depending on where they are on their individual timeline. Touring the Grand Canyon may not be an option. If it is, believe me, my ticket is already purchased! If not, we will tour the Grand Canyon virtually, and go on this trip remotely! Traveling to a remote destination right from your living room can do wonders! 

I certainly don't consider this an avenue a way to take away your symptoms, however, I truly believe that this tool can be utilized as an adjunct to other techniques brought in to help ease a person's life. Even if brings more smiles, stimulates your mind and takes you away for a brief moment in time, who could ask for more. 


Sunday, March 10, 2019

Emelia and Grace - The Last Day

Emelia and Grace - The Last Day

Day 7


Emelia and Grace had the power to re-direct the course of their own paths we know. Unfortunately, Emelia did not travel a positive path. It was not only unfortunate for her during her last chapter, but it was also unfortunate for her husband, her daughter Emma, and her friends.  

Thank you for sharing in Emelia and Grace's journey. This was an important one for you to see. The choices we make while we are still here affect many people in so many ways. Dying is the hardest thing we will ever have to do. While we don't have a choice to participate if we die in our sleep or have a tragic accident, we do have a choice when given a diagnosis with a few months to live. 

Emelia woke up on a Sunday morning just like today. She got dressed and went down to the kitchen. The stairs were more difficult to tackle with each passing day. She managed to make a cup of tea. Her husband walked past, saying goodbye, he was off to play racquetball with the guys. Emma followed him and didn't say a word. Emelia went back to her room, closed the blinds and went back to bed. 

Grace, on the other hand, searched through her closet with Annie looking for her favorite coral dress. She was all showered and just needed help getting dressed and with putting on a little makeup. Today was a big day. In two hours, eighty people would be arriving in a private room behind her favorite Italian restaurant in town. There would be a DJ, slide show, speeches and more. Grace had help in planning a Celebration of Life. All of her friends made a dish for the buffet table. Coral and white, the theme of the event. She even noted on the invitation for all to wear her favorite colors. The plan was to Celebrate her life. There were photo boards that everyone helped with. All her favorite foods, coral and white candles, balloons and decorations. They even enlisted a Pastor to come and read beautiful readings in-between the festivities. All of the music was Grace's favorite and the Champagne was flowing. The flowers were mainly all in white with touches of coral and seafoam green. It was an amazing event! People took turns sharing, speaking and telling stories. Memories were flying around the room, laughter was filling the air. The restaurant allowed them to stay three hours past the usual five. There was more, too many things to list. I know you get the gist. 

It was about three months later when the news arrived. Both Emelia and Grace had passed away. Emelia's husband was afraid in the end, Emelia never stated her final wishes. 911 was called. Graces husband sat by her side in silence. Emma never made it to the hospital on time. It was cold, it was dark. Emma's relationship with her Dad grew stale, they drifted. Emma moved away and her Dad eventually died alone. Emma suffered so much anger, you could see it in her marriage and in her relationships with her children. Really so sad. 

At Graces funeral, there were smiles, yes, smiles. All they talked about was the Celebration of Life and how grateful they were to have experienced this time with her. Once again, there was laughter, stories and celebrated remembrances. Annie grew to be a wonderful Mom who lived in the same town as her Dad. There were family events and sleepovers with all the grandchildren. Life was good. 

I can only help you've seen a side to life that we don't talk about. Dying is the second leading fear in the world! It is scary, we deny it will happen to us even if we are the one with the diagnosis. Can you see how choices can scarily affect everyone around you? Do you see how they can affect the next generation and the next? We need to be open and have honest communication at the end of life. Things aren't as clear cut as the story I've written this past week, that is obvious. However, stories like this are happening all around us, every day. Let's be the change. Let's do end of life better than we've done it over the past generations. We come into the world in a warm and celebratory way, in most cases, there is no reason we can't leave it in the same loving and celebratory way. Help someone in your life do things a little differently. You too, can help guide, direct and think outside of the box during the most important milestone in their life. Be the positive light they need today, now, before they don't get to have their next day. Be the one! 






Saturday, March 9, 2019

EMELIA and GRACE (continued)

Day 6


Yes, both women were different. However, time was running out. We all have a right to scream. We all have a right to be sad and curl up in a ball. Unfortunately, there is no changing the situation. But both Emelia and Grace had the power to re-direct the course of their own paths. 

Emelia woke up to a beautiful warm day. The winter was passing and the new season was upon her. She stood at the window thinking nothing but negative thoughts. "Why is this happening to me?" "Why did God do this to me?" "Why can't it all just be over today?" Her husband walked in. "Why don't we take a ride down to the beach, a little sun on your face will feel really good?" Emelia replied, "I don't need sun, I need my life back. I don't feel good, just let me be." Emma heard this. She slammed the door and left the house. Again. 

Grace woke up to the same sun shining into her room. Annie walked in and surprised her with a light breakfast in bed. She could tell her mom was a little off but smiled all the way through her tea. Grace's husband walked in. "Why don't we take a ride over to the beach, it's beautiful out, a little sun will feel good on your face?" Grace replied, "That sounds so good. Can we go in a couple of hours? I want to finish up something I've been working on?" Sounds great he said, we will leave at 1:00. 

Grace took out her writing pad. She had started 2 letters, love letters. One to her husband, the other to Annie. They were just about completed. Grace had been working on these each night before bed. Although different words in each, she spoke of how lucky her life had been with both of them in it. She told her husband her favorite memories from her wedding day, the birth of Annie and over the last twenty years. In Annies, she described details of the day she was born. How it felt to hold her at one, three, five and ten. She spoke of memories that Annie would remember but not the deep emotion that went along with the event, emotions that only Grace could feel. Grace told Annie how she would never have wanted her life any other way, with any other person beside her. She did the same in her husband's letter. No one could read them without shedding tears, beyond emotional. She finished, closing with how Blessed she was to have been a part of their lives yesterday, today and in all of their days moving forward. Wow! What a love like that can do! 

Her letters became a treasure that Annie and her Dad kept near their hearts for the rest of their lives. A treasure that holds a value that we could never understand. The letters solidified the love they shared with Grace and bonded the love they felt as a Father and Daughter. The effects were GINORMOUS! 

Grace did go to the beach with her family that sunny day. It was one of the best memories Annie will ever remember. One she told all her friends about for many years. Emelia took a sleeping pill to numb her existence and forget about life.  

(To be continued..., one more day)


Friday, March 8, 2019

EMELIA and GRACE (continued)

Day 5


Yes, both women were different. You can not compare. Some people are stronger than others. Some are more resilient and may suffer more pain or depression. Still, there are ways to be creative before you go to help lighten everyones suffering along their road.


Emelia was still spending time in bed. There was absolutely no light in her world. Her days were filled with doom and gloom. Understandably so. Depression can be debilitating. She didn't want to see friends. She refused family visits. Emma was out with friends all the time. Her anxiety and fears were building by the day. She no longer knew what to say to her Mom. Pulling away was her solution to dealing with an issue that would never go away.

Grace called her cousin. "I know your busy but I really need to get over to the mall. Do you think one day this week you could give me a ride?" Her cousin was thrilled. People in our lives always want to help, they just don't know how. Monday came and they were off. It wasn't an easy trip, slow and steady. Grace wanted to go to Pandora. Once there, she found a kind woman to assist them. Grace had looked online all week long and chose ten charms and a charm bracelet for Annie. She spent time choosing the colors and the dividers to fit between the charms. Yes, it cost quite a bit but Grace explained to her husband how important this was to her.

Almost two hours later, Grace had personally put together the perfect bracelet, personalized for Annie. She brought it home and wrapped it in the perfect box with the perfect bow. It was beautiful! Grace also arranged with her girlfriend to construct the perfect Mexican Dinner. The family used to go to the local Mexican restaurant all the time. They planned a menu. Graces friend not only offered to pick up the ingredients and prepare the dishes, but she also stopped in Party City and picked up all the paraphernalia they needed for an authentic evening. She texted her husband and Annie telling them not to make plans on Friday night.

Friday came, the plan was executed without a hitch. Even the music, she found it on a uTube channel to play throughout the night. Need I say, they laughed and even had tears. Good tears from the memories they've shared over time. After dessert, Grace gifted Annie with her bracelet. She told her that every charm meant something from her heart. She reviewed each charm as if she was reviewing the most important thing in her life. She gave details on each one and why it was so important for her to receive the bracelet now, at this time, and from her Mom.

Can you see what is happening here? Can you see how there were such similarities between the two families, yet, by the choices they made, life can lead down very different paths. Grace and Emma will mourn their Moms and react to life in totally opposite ways. Ways that can reflect on their choices, relationships and even in old age. Both of these women had a choice. Unfortunately for Emelia, hers will affect her family very differently and this is very sad.

(Have you experienced anything like this with anyone you've known in your life? How did it make you feel looking in from the outside?)

To be continued...

Thursday, March 7, 2019

EMELIA and GRACE (continued)

Day 4


Both women had choices. Implementing certain things now could change the whole course. There was still time and yet there wasn't.


Emelia was still spending time in bed. She was so very depressed and was not reaching out for support. When her husband asked if there was anything he could do, she told him, "Just leave me be, you don't understand. You are not the one going through this, back off!" Her husband honored Emelia's wishes.

Grace, on the other hand, had completed her first project. She wanted to do more. It was important for her husband and daughter to know more about her. Things that happened in her life when she was younger. Things she liked to do, thoughts and memories that only she knew. She wanted Annie to always keep her close to her heart. She wanted Annie to know things about her to give her knowledge and education that were a part of her past and history. How could she do this? Grace knew she had to go to work and quickly.

She researched books online and found, "Remember Me - The Story of My Life." Each night she went to work writing.

There were prompts on each page that allowed her to dig deep into her mind and pull out her fears, hopes, desires, wishes, and remembrances. There were days where she'd enlist the help of a friend, it was tiring to write. Her friend asked the questions and Grace answered them, each triggering more and more information. This was not only a true legacy she was leaving for her family, but for their families and for generations to come. It was also a real therapy for Grace in the act itself.

Grace was fulfilling her given destiny, doing everything in her power to be mindful and proactive. Emilia chose not too. Who was she hurting? She was not only hurting herself, but she was also hurting her husband and daughter Emma.

(Emelia is so heartbroken and depressed, understandably so. Have you ever known an Emelia and didn't even know it? If you did know a person in her shoes, was there something you tried to do to help? Were you successful in your attempts?)

To be continued...

Wednesday, March 6, 2019

DAY 3


EMELIA and GRACE (continued)


Both women had choices. Implementing certain things now could change the whole course. There was still time to bring life full circle.


Emelia was still in denial. She told her husband, "The Doctor doesn't know for sure. Nobody knows for sure. I told you, I'll manage, I don't want to talk about this!" Her husband honored Emelia's wishes.

Grace, on the other hand, continued to speak openly with her family and friends. "This is where we are at, yes it's so sad, but we will move forward and spend every one of our days with love and joy!" Don't get me wrong, there was sadness. They cried together, got mad at each other and even felt bitterness towards the world. However, Grace knew that if she kept talking and kept the lines of communication open, their story could be a good one. And so she did.

Grace decided to get a few things in order. She wanted to do a few things for her daughter that would help her grieve in a good way. Grace had a friend take her to the card store one afternoon. She spent what felt like many hours, choosing ten years of Birthday cards for Annie. All age appropriate, taking her into her thirtieth Birthday. She went home and spent the next several weeks writing in them. She told Annie what to expect at twenty-one, twenty-three and so forth. They were personal and deep. In the last, she told Annie, "This will be the last card you receive. I was so Blessed to have you for a Daughter and know you've grown into the most beautiful and loving woman any Mother could have asked for." There was more, you get the gist.

Grace put forever stamps on them, had a meeting with both her sister and husband. She instructed them to be sure Annie received these on the next ten Birthdays. They were locked away in a safe place. Can you see how powerful this random act can affect Annie's course? In more ways than you realize. These will be treasures in Annie's life. When done correctly with meaning, mindfulness, and intention, you can change the direction of a person's thoughts, emotions, and memories forever.

Emelia continued to be silent. She lay in bed, day after day. Emma grew more distant in fear.

(Which woman is resonating with you? Both Maybe?)

To be continued...

Tuesday, March 5, 2019

DAY 2


EMELIA and GRACE (continued)


Both women knew the diagnosis. If just so happened both had a beautiful daughter. Emelia was blessed with Emma and Grace with Annie. 


Emelia was in denial. She rolled her eyes and told her husband, "We will not speak another word about this!" Her husband honored Emelia's wishes.

Grace, on the other hand, had open and honest discussions with both her husband and daughter. They discussed the diagnosis, the road to be traveled and how the outcome would play. They started this early on. With this time on their side, they were able to cry, love, hold one another and share some of the most important moments they would ever have.

Emelia continued to be silent. Grace continued to have many profound and spiritual discussions with everyone around her.

(Who do you find yourself to be? An Emilia or a Grace?)

To be continued...

Monday, March 4, 2019

EMELIA and GRACE

DAY 1


Meet Emelia and Grace. Both are in their fifties. Both victims of Cancer. Both have passed.

 

After the battle, what do you think their children longed for the most? 


*Less Sadness *More Closure *Healing *To Grieve Easier 
*To Have Known Mom's Story a Little Bit More... etc.

Over the next 7 days, I will show you how to make the choices they made, so that:

*You will make the best choices for yourself should the time come.

*You will guide a friend or loved one should they have to travel this journey. 

* and so that your family will be able to grieve with the light and love they deserve. 

Stay tuned. Don't miss a single day. This may possibly be one of the most valuable lessons you'll ever learn, thanks to Emelia and Grace! See you tomorrow. 

Thursday, February 28, 2019

Why Do I Need Advanced Directives?

Frequently Asked Questions

Why should I fill out my Advanced Directives (Living Will and Health Care Proxy)
East End Doula Care utilizes an advance directive called Five Wishes. It allows you to guide important medical care decisions that might be made if you ever get seriously ill – such as whether to give you life-support treatment. You may think that your loved ones and doctors will automatically know what you want when you are very ill, but in reality, everyone has different wishes and it’s important to make them clearly known. Expressing your wishes helps empower your family, friends and doctor to make the best decisions when the time comes, and helps avoid disagreements about what to do. Completing Advanced Directives can help you and your loved ones gain peace of mind around these difficult decisions. We tend to think "this will not happen to me" until it does.
When do I need to have these directives in place now?
The best time to fill out your Advanced Directives is before you face a health crisis. Because life is unpredictable, it’s best to be prepared! Anyone over the age of 18 can do this. It’s a good idea to talk about these issues when you experience significant life events like marriage, divorce, having children, or being diagnosed with a major illness. Times change, we can control certain things. Put them in place now.
When do my Advanced Directives take effect?
You will always make your own health care decisions if you are able to talk with your doctor and understand what is being said. Five Wishes only takes effect when you are too ill to communicate. If you are unable to make your own decisions or speak for yourself, then your Five Wishes and the person you chose to be your health care proxy can help direct your care with your doctor.
Is Five Wishes a legal document?
Yes. It was written with the help of the American Bar Association’s Commission on Law & Aging. It meets the legal requirements of 42 states but is used widely in all 50, and federal law requires medical care providers to honor patient wishes as expressed. 
Does Five Wishes meet HIPAA requirements?
Yes, the Centers for Medicare & Medicaid Services, the agent or proxy appointed under the document is treated as the patient's “personal representative” under HIPAA and has the same access to medical records and information as the patient, once the advance directive is effective.
How do I use Five Wishes?
Take the following steps to use Five Wishes:
  • Review the document with a Certified Consultant, possibly with your family as well.
  • Fill it out.
  • Follow directions for signing it.
  • Discuss it with your health care agent and doctor and give each of them a copy.
  • Make sure a copy of your Five Wishes is placed in your medical file by your doctor.
  • Discuss Five Wishes with your family and friends and give them a copy.

What do I do after I’ve signed my Five Wishes?
Always keep your completed, signed and witnessed original Five Wishes in a place where it can be readily obtained if need be, such as in a desk where important papers are kept. Give photocopies of the original, not the original itself, to others.
Does filling out Five Wishes guarantee that my wishes will be followed?
Your doctor is required to follow your wishes according to the laws of your state. Each state has its own rules and conditions that a doctor must observe, and so your doctor has the final word on when your Five Wishes takes effect. To do all you can to have your wishes followed, make sure you do two things:
  • Pick a health care agent (Wish 1), to be reviewed with your Consultant, talk with him or her about your wishes to make sure they understand what matters to you, and confirm they will speak for you if you ever get sick. (all to be reviewed during meeting)
  • Tell your family members, friends, doctor - and anyone who might get involved if you become sick - who you choose as your health care agent. Some even make photocopies of their completed Five Wishes and give them to other family members.
Which is better to have: a living will or a health care agent?
The health care agent and the living will go hand-in-hand, and you are usually better off with both. You need to have a health care agent to speak for you when you can’t speak for yourself, and you need a living will that expresses your wishes in writing. The law generally requires your health care agent to make decisions that he or she feels you would have made if you could talk. The more information your agent has, the better.
What if I fill out Five Wishes and later change my mind?
You can change your wishes any time you want. It is a good idea to review and update your Five Wishes if you have any major changes in your health or your family support network. When you make changes, be sure to inform your health care agent, family, friends and doctor. Destroy all out-of-date copies of the document and distribute copies of your new Five Wishes.
Do I have to have my Five Wishes notarized?
Not unless you live in one of the few states that require notarization (see page 10 of Five Wishes). Simply follow the directions on the signature page and you’ll be safe.
What if I travel a lot? Will my Five Wishes be honored wherever I go?
An advance directive that meets the legal requirements of the state in which it was signed (see Five Wishes page 3) will be honored in all 50 states under reciprocity. If you are in a state that is not listed, your Five Wishes document is still helpful in guiding people to understand your preferences. Some people complete, sign and witness their Five Wishes and attach it to their signed state form.
What if I have more questions?
As an Advanced Directive Consultant, Susan from East End Doula Care can answer any questions you may have. She offers a "FAMILY GATHERING" event to your friends and family on Long Island. Invite five or more, and your directives are FREE! Call today to book an evening in your home. You make the coffee, she'll bring the cookies! 631-946-8100 

Monday, February 18, 2019

WELCOME!

Welcome and Thank You for Stopping By!

"Ask a Doula" Launches a Global Q&A Forum


Hello, I'd like to thank you for dropping by today. My name is Susan Capurso and my practice,
East End Doula Care is located on Long Island in New York. I am here to serve individuals and their families during the most trying time in life - End of Life.

This time as we all know, is draining, sad, overwhelming and scary. As an End of Life Doula, I guide and support, Emotionally, Spiritually and Practically to families during this milestone event. As Birthing Doulas bring babies into the world in a warm and celebratory way, End of Life Doulas guide your journey with mindfulness, focus and a bit of pre-planning.

No one wants to think of dying. It is the second leading fear worldwide. We don't want to think about it or believe it's happening at all. As a society, we are in a denial that doesn't need to be.

Dying is part of life. It is the circle of life and it will happen to every single person reading my words. We know this inside, yet still don't accept it. And this my friend, is the tragedy. By accepting and bringing in awareness, our End of Life experiences can be beautiful and loving all the way through. By bringing in many projects, tools and techniques, families heal, bond, celebrate and create the closure that the whole family unit deserves. It can be done right and you can make it happen!

My career as an End of Life Guide began through a series of snowballed events. The individual losses I've succumbed to were extensive. They came in all shapes and sizes! What I realized was that something was not quite right. Everyone of them could have flowed through differently. Why didn't they? Why were people afraid and angry? Why wasn't there more closure and meaning to a person's passing? And why didn't anyone want to talk about it until after the last breath, when it was just too late? I didn't know the answers then, however, I've made it my mission to turn this around.

"Ask a Doula" was created with my yearning to assist individuals and their families with questions regarding these fears. What will happen? What can I expect? I thought, YES! I could help the people I physically encounter, but what about the one's I'll never meet? So now, I've found a platform to meet you. This is a Question and Answer Forum, similar to "Dear Abby" without revealing my age! I'll do whatever I can to answer all concerns and questions. What I don't know, I'll surely research until I find the answer for you!

Again, thank you for stopping by. Keep "Ask a Doula" in mind, there will surely be the day when we could all use a little more support.

As a Free gift for stopping by my new Forum, please feel free to download your
 Free eBook HERE  for "Meaningful ways to bring Peace, Balance and Closure to your Journey."















Susan Capurso CEOLD
End of Life Doula - Workshop Presenter - Author     
PUB. LI Press-LIslander-NY Post
www.EastEndDoulaCare.com
E:Susan@EastEndDoulaCare.com
631.946.8100