Kai From Days with My Father On Love And Death

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Wei Hsuang Chu, Jan 11, 1935 to Oct 22, 2013, photo credit Kai, Days with My Father
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Kai & her dad, photo credit Days with My Father

As I’ve said time and time again, social media has been such a blessing to me, especially when it comes to the wonderful people I’ve met in my Alzheimer’s and Caregiving community. Kai is one of those people. She blogs at Days with My Father. Here is a post she graciously shared about her feelings and reflection on her dad who she sadly lost on Oct. 22, 2013. Please read her blog and her wonderful stories of her dad.

In remembrance of Wei Hsuang Chu, Jan 11, 1935 to Oct 22, 2013.

From Days with My Father; Nov. 9, 2013

Love and Death

It has been a blurry 3 weeks, since the tail end of my trip away and leading up to my father’s funeral this Thursday.

Father’s body is now in the wait for cremation and soon his remains will reside on my home until his birthday come January, where my sister and I will scatter his ashes into the Pacific Ocean… The last few days leading up to the funeral and post, have been surreal to say the least.

I had hosted a casual funeral, a viewing without ceremony and formality. My father was almost always happy for company and very casual and laid back, so it was fitting. I had wanted it to be a cozy, loving, environment, for those who knew him to remember the man he was, and for those who didn’t – came out to support me – to feel comfortable in sharing this life experience with me and my family.

The funeral viewing went smoothly, minus one or two bizarre comments from family directed at me. Unfortunately these still stand out in my memory, as I process the feelings and thoughts that had resulted in what was said. Its inappropriateness shocked me, but then I realized post event that these people sadly have not let their ego guards down, and are still living in their fear and guilt driven worlds and the wrong attitude on what Love vs. Burdens mean. Little do they realize that I have all the family I need around me, I kept ones who were openly loving and grounded with me through my dad’s difficult journey with dementia, Alzheimer’s, Transient Ischemic Attacks (mini strokes), Atrial Fibrilations, and later diagnosed, congenital heart failure, which were the cause of swellings, weakness, and hard of breathing. Yes, sometimes I felt alone in the journey, from the supporting role, but I wasn’t because my dad was there… maybe not in spirit or the same physical self, but he was a being that still lived.

Being told “You are the one who loses”, to the one(s) who thought that, you are wrong. I gained, so much that I get emotional when I think about what I have gained through the last 4 years. I gained deeper unconditional love for my father and sister, it gave me strength to be there for them, even when I wasn’t feeling so strong. I gained deeper empathy and resolve to advocate for those in need, and coach those in need where I can. I’ve come to understand the meaning of life, the true depth of it, and gained a stronger mind in the process. I am more at peace than ever before, I am a better listener and communicator with those around me, more freedom speak from the heart and mind. I’m even better at letting people go, especially those who are no longer a fit, instead of wanting to help or please everyone.

Some people think that I am in mourning for the death of a parent, but in actuality, I’m grieving the four years of emotional hardships when I couldn’t afford the time to process and grieve then, I chose battles carefully and tried not to burn myself out. I had four years of slow grieving for the slow loss of my father, and now that the journey has ended, I’m am at peace with his death, it is a blessing, he is free. He has given the ultimate legacy to his family far and wide, everyone has reminded of his quiet and kind nature, as well as his humble and giving nature, all due to his death. This is the silver lining that death of a loved one brings, reminders to the living, a wake up call, to live your life out of love and authenticity.

Thank you to the friends who could come out, thank you for showing me love and support when I needed it greatly. It is a surreal experience made better by love and support, special thank you’s go out to those who went the extra mile and making sure I ate well and came to just keep me company, even when I wasn’t sure what I needed.

For those who are still in the journey with their parents or beginning it, do it out of love and not responsibility. For the love will permeate and be returned to you in unexpected ways.

Best Wishes,
Kai

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Leeza Gibbons On Caregivers Sanity Sanctuaries

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I am honored to have Leeza Gibbons as my first guest post.

I reached out to Leeza and was so appreciative to receive an email from Gibbons who is a TV/Radio Host, Author, Wife/Mother, Alzheimer’s advocate, Entrepreneur and the list goes on and on. Here are her word of encouragement those in the caregiving and Alzheimer’s community. First her words to me.

How are you? Thanks so much for your advocacy in the Alzheimer’s community (and for your Twitter support!)….I thought maybe I would provide this little tidbit…for your blog. Again, we are all appreciative of your voice! Thanks Pamela!

“Especially during the busy holidays when stressors are maxed out, caregivers need to find their “sanity sanctuaries”. These are the places, people or things that bring you back to calmness and control. They are non-negotiable. For me it’s a five minute walk, a cup of coffee away from the phone and computer, my bath at night. Come up with your list and protect if fiercely. Figure out what you can do to mitigate that dreaded sense of overwhelm that you know is coming and plan for it. Remember that you can change your psychology by changing your energy through purposeful breathing. So slow things down with 10 deep breaths which can lower your heart rate, pump some oxygen to your brain, lower your blood pressure and put you back in control of your thoughts. THAT is the only thing we can control anyway, right? Why not release the rest? Show up, do your best, let go of the rest! Know that even if you get off track, your Sanity Sanctuaries are always there for you to reclaim yourself and move forward”

Ever Forward,

Leeza

From her website:

Leeza Gibbons is one of the best‐known and most well‐loved pop‐culture icons on the air and at the top of her game. She’s also a wife, mother, businesswoman, New York Times bestselling author of TAKE 2, and champion for family caregivers.

The spectrum of Leeza’s career in entertainment and news media— combined with her stunning hands on advocacy for health care, wellness, and caregivers—is diverse and impressive. Her on‐camera hosting dominance in entertainment‐news and talk‐show arenas ranges from the most popular entertainment news show in history, Entertainment Tonight; to her award‐winning daytime talk show, Leeza; to, currently, the syndicated TV news magazine show America Now and the weekly TV news show My Generation on PBS. Recognized as a social entrepreneur, Leeza has become one of the leading voices for issues facing family caregivers. After her family’s experience with her mother’s and grandmother’s Alzheimer’s disease, Leeza took action. Her training as a journalist united with her compassion and business savvy when she created the Leeza Gibbons Memory Foundation, a 501 (c)(3); and its signature programs, Leeza’s Place and Leeza’s Care Connection, which offer free services for family caregivers. Over the years, Leeza has become known as a trusted girlfriend, valued confidante, and source of inspiration and information to empower women to show up for their lives with confidence and pride. Whether it’s her scrapbook line honoring the value of memories, her jewelry collection to symbolize transformation, or her beauty products to reveal inner and outer beauty, Leeza develops programs and products to help women claim their strength and rewrite the story of their lives.

Websites: www.leezagibbons.com and www.leezasplace.org.

Heather’s Voice: I Am A Mesothelioma Survivor

Heather’s Voice: I Am A Mesothelioma Survivor

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As you know this blog has been about my journey as a caregiver to my mom who had Alzheimer’s and about the disease and those who serve as caregivers in this area. I have been blessed that it has also served as a vehicle for other caregivers to reach out, not just those in the fight against Alzheimer’s. While we love-giver’s may be advocates for different illnesses, our role, hopes and concerns are the same.

Last December I introduced you to Cameron Von St. James whose wife Heather is a survivor of Mesothelioma. I share with you today, Heather’s story in her voice.

If you or someone you know is battling Mesothelioma, visit their website  http://www.mesothelioma.com/mesothelioma/  at or contact Heather at  http://www.mesothelioma.com/treatment/speak-with-a-mesothelioma-survivor.htm.

You can also follow Heather on twitter @HeatherVSJ.

To read Heather’s story, click on the picture.

How my Family Survived my Wife’s Battle with Cancer

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I’m always excited whenever I get a like, a new follower or a new viewer to my blog, it’s another link in the Alzheimer’s awareness chain but also in the Caregiving awareness chain. Today’s guest post comes from Cameron Von St. James who wanted to share his story as a caregiver to his wife Heather who my wife was diagnosed with an extremely rare and deadly cancer called mesothelioma and today is cancer free! You may follow Heather on twitter at @HeatherVSJ.

How my Family Survived my Wife’s Battle with Cancer by Cameron Von St. James

My wife often remarks that she doesn’t know how I survived after she was diagnosed with mesothelioma, and I confess that I haven’t shared my experiences with her in much detail. I hope to share our story here, however, for the benefit of those currently battling through cancer.

Our daughter Lily was born just three months before her diagnosis. Our time of great happiness and excitement at the thought of what the future held for our new little family quickly turned to a period of stress and fear. To this day, I can still hear the doctor uttering the word, “mesothelioma.” As my wife cried and I tried to comfort her, I thought to myself, “How will we survive this?” CVS 1

Feeling overcome with grief, I thought I was going to lose my composure, but the doctor’s questions about our future medical decisions helped me to collect my bearings once again. This was just the first time that I would feel as if the world was coming down around me at the same time that I had to remain grounded and help make good decisions for my family.

I was so enraged after hearing the diagnosis and afraid for what the future held. I didn’t always handle these feelings in a positive manner and was reduced to spewing profanity when talking to others. After a little time passed, I learned to manage my emotions better. I was the only one my wife and daughter had to rely on. They needed me. It wasn’t easy, but I did my very best to be the pillar of strength my wife needed. I didn’t want her to witness any of my breakdowns. It was my duty to be her support and to help foster a sense of optimism and stability in her.

The list of things that I had to do during the day seemed to be impossibly long at first. I took care of the baby, the pets, continued to work and made sure that my wife could be everywhere she needed to go. It seemed like an impossible task, but I learned to prioritize and take my list on one item at a time, and this helped keep me from becoming overwhelmed. I also learned over time to accept the many offers of help extended to us by our friends and family. It was a real blessing to have so many people willing to offer their assistance to us during those days. If I hadn’t had as many caring people at that time, I don’t know if I would have made it.

Heather knows that the two-month period following her surgery was the hardest of all for me.  Following her mesothelioma surgery in Boston, Heather went to stay in South Dakota with her parents, in order to rest and recover, as well as prepare for her next round of treatments: chemotherapy and radiation.  Lily had already been staying in South Dakota during the operation, which left me home alone to work and take care of our house.  As difficult as it was to be her caregiver up until this point, being away from my wife and daughter during this period was so much harder.  In the entire two months they were gone, I was able to see them only once.

One Friday after work, I drove 11 hours to see them, overnight and through an unexpected snowstorm.  I got a few hours of sleep in my car while the plows cleared the roads, and I showed up exhausted on Saturday morning.  I spent a few hours with them on Saturday and Sunday, but I had to drive back home on all too soon to get to work on Monday. It was a lot of exhausting travel for a few precious hours with them, but it was worth every second.

The most important lesson that I learned was that I had to accept help from others. I also learned that although having to make difficult decisions was very hard at this time, it was a way of managing to exert some control over our situation. We made it through this challenging time when the chances of survival were slim, and Heather is still here and healthy, six years after first being diagnosed. My hope is that this story will encourage others in their fight to win their own battles with cancer.


Cameron is husband to mesothelioma survivor Heather Von St. James.  Heather was diagnosed with malignant pleural mesothelioma on November 21, 2005 at the age of 36, just three days before Thanksgiving and three and a half months after giving birth to their daughter Lily.  Despite a troubling prognosis, Heather overcame her cancer and is healthy and cancer free seven years later.  She and Cameron now perform advocacy for mesothelioma patients and try to share a message of hope with all those battling cancer today.