Help for Healing

Bitter & Sweet, living daily with grief


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GUEST BLOG PART 2

Hopefully you caught Part 1 of the “interview” with RidingBitch blog writer Niva Dorell Smith. She has answered the same questions that I did on a previous blog. They hold profound thoughts so enjoy.

Q: Had you had any previous experience with caregiving before your husband Kaz was diagnosed with a Stage IV Glioblastoma in 2010?
A. Yes and no. My mother had been in and out of hospitals for much of my childhood. In fact, her health is why my family moved to the United States from Israel when I was five years old. She had several open heart surgeries and other major procedures from that time until her death 17 years later. I was never her caregiver because I was too young, but I had grown up with a familiarity with hospitals, doctors, nurses, and the fear of possibly losing a loved one. When Kaz first started having symptoms, then was diagnosed, I think he was surprised by how calm and steady I was. Before then, he had always been the calm, steady one between us. Of course, inside I was a ball of emotions, but on the outside I was calm.
Once things progressed with him it was a different story. I was still relatively calm but the stress of the situation sometimes got to me. I found it very challenging to be so powerless, to watch him suffer and not be able to do much about it, to have opinions on how to deal with things and not be able to make them happen. The patient is in charge of his own body, as it should be. I used to think of my father a lot, and my older siblings. They were the ones who took care of my mother all those years.

Q: Are there any specific things that you would advise caregivers?
A. Well, like you I would suggest having a notebook and writing everything down. The caregiver must be quite organized because there’s a ton of information to keep track of and the patient usually can’t think straight. I found myself relating to this aspect of caregiving a bit like film production. My skills as a director, production manager, and assistant editor – all jobs which require a lot of organization, communication and the ability to function efficiently under pressure – came in handy when I became a caregiver. I was an efficient caregiver and a strong advocate, but emotionally I was sometimes a nervous wreck.
I would also recommend support groups. Kaz and I had different opinions about this. We went to a brain tumor support group twice, once in the beginning, once in the end. The first time he rode his motorcycle and strode in with his helmet and was pretty uncomfortable with the whole thing. The second time was several months after his motorcycle accident and about 7 weeks before he died. He was on a cane and had been depressed. His mindset was completely different and he enjoyed the group much more. I always wished we had kept going to that group because we would have learned a lot and been able to connect with other brain tumor patients and caregivers. I ended up going to a caregiver’s support group, which was also very helpful. It was the only place where I could vent honestly about my feelings and be heard and understood without judgment. I also learned a great deal from the other caregivers, some of whom had been doing it for over 10 years.
Having down time is also important. Being a caregiver can be extremely stressful and challenging to get any time away from the situation. I took up swimming for a while, which was great. But you can do lots of things – yoga, walking, meditation, retail therapy. Whatever gets your mind off things or allows you to relax, if only for a few minutes a week. Your brain and body will thank you.
Lastly, I would urge caregivers to not be shy about asking for help. People often feel helpless when a friend or family member is sick. They want to know how they can help. So, if you need help, ask for it. Except for the last 6 weeks, I worked full-time the entire year Kaz was ill. I could never have managed without the help of our friends and family. We were also very lucky that our respective bosses were very supportive. This made all the difference in the world.

Q: What was your experience of caregiving for your husband like?
A. Stressful. Beautiful. Scary. Frustrating. Profoundly emotional. I once told Kaz that I felt honored to be with him during this very important period of his life, to take care of him and be his partner, even though it was challenging. The stress could have torn our young relationship apart, and almost did, to be honest. But it also brought us closer together. Dealing with someone’s health is an intimate experience and scary too, because it makes you face your own mortality. We loved each other enough to stick with it and look down the barrel of the beast together. It was odd to fall more in love while knowing we would soon be separated forever. Odd, painful and beautiful, all at once.

THANKS NIVA. I was moved reading your responses and felt like yelling out AMEN SISTER!! Stay tuned everyone. There is more to come!


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MOTIVATION

The good news is that I am booked to appear on AM BUFFALO on Monday, March 11, 10:00 AM, channel 7. This is the Monday before the book launch, which is perfect timing. The show and the launch are both a reminder to me that yes, after 25 years or so of struggling, I am still overweight. Most maddening is that I lost it a few years ago and then gained most of it back.

I’ve tried it all – diets, “life-style changes”, exercise… I know about toxins and all the things I shouldn’t eat. Hence, my latest attempt that I have never tried before. Hypnosis. While I would love for there to be a magic pill where I could eat whatever I wanted and still be healthy, I’m pretty sure that won’t happen in my lifetime. So I’m not trying to find the fast cure, just trying to find some motivation. I WANT to eat bad stuff. I DON’T WANT to eat healthy proteins and vegetables. Maybe hypnosis can help.

I had my first session on Friday. To my great surprise, I went under very easily. You know everything that is happening so it’s not scary or anything. First he had me do some image work. This kind of thing always fascinates me, or I guess I should say what comes out of it. The side of me that wants to be healthy and trim took on a red color, heart in shape but it was very fluid and flowing. The side of me that is stuck was a solid black rectangle, non-moving. I thought the image work would have the red swallow the black. However, my brilliant hypnotist wanted me to blend them together because both “sides” serve a purpose in our lives. (Remind you of the glass half-empty and half-full?) So the black became an outline around the heart, but the heart still moved around. It kept more form but it still was fluid. Interesting.

Then I got to picture all the foods I love but are unhealthy for me on my kitchen island. I’m not lucky enough to have one vice like sweets or salts. I love them all. So my island was full of cookies, potato chips, doritoes, cake, and carbs like breads and stuff too. While I was drooling on myself, he then added to the image that all of those foods were dripping with thick, white, slimy fat. He pointed out how disgusting they all looked. Makes me want to throw up even as I’m writing this. Then he told me to knock it all off the counter. When he said this, he snapped his fingers and said “Beets!”. We had discussed earlier that beets are a food I really hate. He wants me to associate those yummy but bad foods with beets. Interesting though, it’s not so I see them as just “bad”, but to break down the hard line barriers of good and bad food in my head.

Lots of homework. Cds to listen to, a workbook to read and do exercises in. So much for the magic pill theory. But I think I’m ready to take this on. All the exciting things that are coming up are making me be a little more willing to face my life-long demons. You ought to try it. I’m not sure yet how it will “work”, but so far it’s been fascinating and fun. Gotta go and make my protein shake 🙂


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Introducing….

I have been following the blog Riding Bitch for some time. I recommend you check it out too! (Her blog link is listed on the right below). We have recently decided to do some guest interviewing with each other as we have a lot in common. She posted an interview with me last week. Here is some information about the author.

Niva Dorell Smith is a screenwriter, director and producer. She has directed award-winning short films, music videos, television and documentaries. She has been an educator at the New York Film Academy and is currently a film mentor for the Make a Film Foundation, an organization that assists children with life threatening illnesses in making small “legacy” films. She is currently writing her first book about her experience of loving, caregiving, losing and grieving her late husband who died of brain cancer in 2011.

Q: Under what circumstances did you become a widow? And how did that lead to the book you are writing?
A: My husband died in May 2011 from an aggressive form of brain cancer at the age of 43. We had married only 11 days earlier when he was on hospice. After his death, I experienced the strange sensation of feeling both like a newlywed and a widow. We had both been through such an intense experience in a short amount of time (three years total as a couple, one with cancer), it felt unnatural to cease communicating with him. I was also suffering from post-traumatic stress, survivor and caregiver’s guilt. I had been writing the whole time we were together – in my journal, in emails, in letters I wrote while working abroad for a few months. Once he was gone and I was alone in the silent apartment, the writing intensified. I continued writing in my journal. I wrote him love letters. I wrote down every memory I could remember from our time together. I didn’t know what I was writing. I just knew that I had to get things out, and from losing my mother 20 years earlier that Time erases memories.
After a while, I started piecing bits together, recreating our story with a literary patchwork of descriptive narrative, letters, emails, text messages, voicemail and video transcripts. The result is a book currently entitled THE HISTORY OF US. It isn’t published yet but it will be in 2013.

Q: Do you think there is an audience for such a book?
A: I think there is an audience for almost any book, but especially one about a real couple going through an extraordinary experience. My book is an emotionally honest and very compelling portrayal of two young people who were thrown into a “tsunami” of challenges before they had even moved in together, and end up making the ultimate commitment. I think many people will relate to it, both young and old, sick and healthy, because ultimately it’s a great (and tragic) love story.

As I mentioned, I think Niva and I have a lot in common. Check out her blog!