Help for Healing

Bitter & Sweet, living daily with grief


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More Stories

A couple weeks ago I was at a fundraiser and offered to sell 50/50 tickets. In the process, I met a gentleman who Brigette and I ended up having a meeting with. He is the epitome of the Bitter and Sweet message. Turns out, 14 years ago he lost his 17 year old son to cancer. During that time, they had a fundraiser and had extra money left over after paying what they needed to. They decided to create a foundation and have been raising money ever since. They average about $80,000 every year! They help families that have children with cancer. He said they help 40-50 families a year. Can you imagine?

If you go to babycooppublishing.com, you can see a link to his site. It’s called The Matthew Foster Foundation. Inspiring guy. Inspiring family. Talk about taking tragedy and doing something good with it. Thanks for your example Burt!

This week, I spoke with someone who had read my book. I love hearing stories about how it has touched people. Each one has its own nuance, just a little different twist. I asked if I could share her reflections because it was a new thought that I loved hearing.

She is a cancer survivor. A young woman, maybe not even thirty yet. She had breast cancer and it was quite a story. After she had mentioned some of the things in the book she could identify with, she articulated the gift that was in the reading for her. She has an amazing support system around her- family, friends, significant other. They took care of her during her illness but she said in the back of her mind, she always thought it must have sucked for them to have to give up their time and energy for her. Bitter and Sweet seemed to release her from that. She realized when she read from a caretaker’s perspective, that people resent the disease, but never the person who suffers from it.

We were able to talk some more about that. I don’t know why I never thought to put this in my book, but I often say when I am speaking, that I love what I do for a living. Being a counselor is very rewarding. I am proud of the fact that I help people keep their families together, resolve grief and conflict, etc. I feel good about that when I hit the pillow every night.

BUT THERE IS NOTHING MORE SACRED THAN HAVING THE PRIVILEGE OF HELPING SOMEONE DIE WELL. I’ve never done anything more important with my life. I probably never will. Yes, it was hard. But this not a cliche- it was an honor to care for Tim and be on the journey with him.

So thanks for sharing your stories with me. And I hope this particular woman breathes a little easier these days, knowing it was ok to let the people that love her take care of her. Yea for humanity!


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You Just Never Know

So when I thought about writing Bitter and Sweet, Brigitte had me start reading books on writing books. There seemed to be an assumption in them that authors will write more than one book. I would explain to Brigitte that I wasn’t an author by profession and I would only be writing one book. She would just plant a seed with something like “Well, you never know.”

Then I started writing Bitter and Sweet, and I kept fighting myself. I did not WANT to write more than one book, but it was becoming very clear to me that my story was really two totally different topics. Bitter and Sweet became a book about facing a terminal illness, being a caretaker, a patient advocate. That really is different from the grief you deal with afterwards. In spite of my best efforts, I had to admit I had two books in me.

In the meantime, Brigitte keeps planting seeds about the next book after that and I keep reminding her there are only two books. She finally said that she already knows what the third book is- a book about all the stories that come to me because of the book I’ve already written. Damn her! That’s actually a good idea. And she was smart enough to say it to me the day after I heard this story.

The gentleman gave me permission to blog about this provided I took the usual care to change names. He was a contact I met through marketing bookstores. Some stores want to read the book before they will agree to try and sell it and he was one of those people. I called back to follow-up with him and ended up having a lengthy conversation with him.

He had only read about 90 pages of Bitter and Sweet but his first comment was that the title was perfect. He was weepy throughout his tale. Turns out he lost a son in an accident, and then his wife the year before Tim died. It happens almost every time I talk to someone about my book- they have a story to share. Who hasn’t been touched by cancer/death in some way?

He said the book was going to take him a while to finish. Generally, people either say they couldn’t put the book down and finished it very quickly, or they say it touches very close to home and it will take them a while to slowly digest it. He said the book was causing him to think about things that he has pushed down for awhile and that he believes God will use the book to help people heal. Wow. That would make my heart soar.

Then here’s the kicker. He was reading the section of the book where I described how Tim and I bought an adjustable bed. It was a big deal at the time because after he was diagnosed, we weren’t really able to sleep in the same room anymore. Tim had to sleep more upright and had great difficulty. So it was a day for celebration when we got the new bed and could lay side by side again.

The night that this man read that section, he had a dream about his wife. It was a very vivid dream and he felt her laying next to him. When he woke in the morning, he was heartbroken to discover that she was indeed still gone. But he had a beautiful night with her. Double wow.

That one story alone makes all the months of writing the book worthwhile. What a gift to him. What a bigger gift to me. Please let me know your story!


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Not Again….

So those of you that have read Bitter and Sweet, will remember that while Tim was sick, our cat Oreo was diagnosed with cancer. Afer a great month or so on steroids, we had to put him down. Digging Oreo’s grave was one of the last physical jobs that Tim was able to do.

In September of that year (2010), Colin brought home Louie as a surprise. I was a bit overwhelmed with everything else going on the house, but Louie climbed out of the cat carrier and into my lap and started purring immediately. I knew he was just what we needed to brighten our lives.

Last summer, I thought that Louie had diabetes because of some symptoms he was exhibiting. After running tests, they discovered he had kidney disease. It was one of those things that would shorten his life but we had no idea what that meant. Could be years. So we had to start altering his food and eventually went solely to prescription food.

Mid-December, he had another check up and the doc was thrilled. He looked great and had even gained weight. Yeah!!! Last weekend, I noticed he spent an entire day on the bed- morning, noon and night. Never got up. By Monday morning, Colin came to me and said he thought Louie wasn’t doing well. I looked at him and thought “Geeze! How did this happen overnight? He looks thin and like he can’t even sit right.”

Unfortunately, I knew what this could mean. Immediately change all plans for the morning. Brigette happened to stop over and she immediately changed all of her plans as well. I felt sick driving to the vet’s. Was he dying? What would they say?

Our normal vet wasn’t available but everyone there is pretty excellent. He had lost two pounds, which is a 20% reduction in overall weight in just a couple of months. But the blood test results wouldn’t be in until 3 PM. We decided to give him an IV push and try the medicated canned food. I went home on pins and needles. I asked Colin if he thought he would be able to handle giving him IVs every day if that was needed. He wasn’t sure he could handle that.

So I sat by the phone and waited. I walked our dog Taffy and the vet called. She said Louie’s numbers had changed drastically. From 60 to 250, from .2 to 7 or something like that. Bad news, but she had seen worse. I started to ask questions but my stupid phone died. I had to wait another two hours before I could talk to her again.

She gave me information but I felt lost. Was it time to put Louie down? What did it mean? Our regular vet called about 7 PM and I finally felt some peace. She knows our family well and she said key phrases that I can understand all too well. Louie had weeks left, but we were talking about palliative care. I get that term. The fluids could help him tremendously. The key factor was that Louie scarfed down the canned food. Appetite and nutrition intake indicated he had a little time left. The plan was that I would go in the morning and purchase more of the food and the IV bags. I would have to be instructed regarding needles and such. I dreaded it but I knew I would just have to pull it together because it wasn’t about me. Louie was dying and he needed me to help him home.

That night I got up to go to bed and discovered that Louie had vomited all the food plus then some. He looked awful. So at 7 AM I started the calls again. Finally about 9:30 AM I talked to the vet. Was this new symptom a game changer? She said she thought from my conversation yesterday that I wasn’t ready to let Louie go. I told her that was not the case at all. We could face that. But I did not want to live with the guilt of having put him down too early because I was too traumatized to provide him with IVs. That just wasn’t an option for me. Once that clarification was made, the communication was clear. It was time for Louie, no guilt should be felt, and yes, if it were her cat, that was the decision she would make.

Waited for a call and found out we could go at noon on Tuesday. Colin agreed to go with me as he had with Oreo. I held Louie in my arms and our doc blessed him on his journey home after telling him what a special cat he was and how loved he was by his family. I felt him relax in my arms and I knew he was gone. Colin and I bawled like babies.

We brought him home in a box. Goofy to say, but he looked beautiful. Now we had to face Frankie. Frankie sobbed just like us but let me hold him for awhile while he grieved. Then the boys went to the backyard and dug a grave together. The work seemed to calm them and give them closure.

Sad days for us, but we truly are doing ok. Personally, I handled the death much better than I did the hours of not knowing. I can do full-on sad. I am familiar with that and while I obviously don’t enjoy it, I know what to do with it. Just feel it. But making life and death decisions, weeding through medical information… it felt like Post Traumatic Stress Disorder. Hated every minute of it.

Colin and I talked about it on the way home. What’s the alternative? Never get a pet again? We both decided without a doubt that it is still worth it. The love and companionship and connection you feel is worth knowing some day you will have to part. Good life lesson for humans too.


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FEEDBACK

Now that the book has been launched, one of the best things has been getting people’s responses after reading it. I am posting one today that just had to be shared. It brought on a big grief cry, which I haven’t had in a while. It was cleansing and heart breaking all at the same time. (Is that another bitter-sweet thing)?

“So far, I find I’m unable to really read the book. I’m not sure I will be able to. I can skim it, I can read a passage here or there, but I just can’t go further than that. I can’t say I knew Tim fabulously well, but you and Frankie yes, and that cuts the reading a little close to the bone.

There is ‘more to the story’ that I’m not sure I shared with you when I took Frankie to the Sabres game when Tim was sick. Ready? No you’re not. Since when were you ready for any of this? Pull out your tissue box for a trip down anti-memory lane.

I got tickets to a Sabres game from a guy I work with. A few people were aware that I knew a boy my daughter’s age who was going through the ordeal of watching his dad slip away. When one of those people offered me tickets, I told him who I was going to take. Frankie hopped in the back seat of my car. From that point on, he never stopped talking, except to breathe now and then. Come up for air! He was excited about that game and he wanted to tell me everything. Hockey cards, players, Wii hockey, other players in the league (many of which I had never heard of but was compelled to pretend to know more than I did), what signed pucks he had, etc. I think he was going to start playing hockey himself that fall. I mean, it just went on and on. And it was great.

Our seats were in the 300 level. The game is going on. He’s telling me ‘He shouldn’t have done that. He should have passed it to Smith, and then Jones would have been able to come around and it would have been right there.’ I’m getting this all night. During play. During stoppages. Between periods. Insightful comments too.

I started thinking he must be driving the people around us nuts. He was driving me a little batty after a while, because I suddenly realized it had been like two hours, and the chirping hadn’t subsided even for a second. I kept thinking ‘How long can he keep this up?’ Pretty long it turns out. More commentary, more insight. Earlier in the game, I had been pretty engaging with it. ‘Well, I dunno Frankie, if he passes it to that guy, then he risks the pass being intercepted and…’. By the third period, I was growing less responsive. Tired. He’d make a comment and follow it up with ‘Right? Right? Right?’ You couldn’t just hear it, you had to acknowledge it. What an intense kid. ‘Right, Frankie.’ He wore me out. But it was great. We had such a wonderful time.

I made it a point to keep our conversation stayed on the happy side, and while Frankie was able to get away from what was going on at home for a while, he couldn’t just shelve it. It was his dad for goodness sake. I’m pretty sure that doesn’t leave the mind for very long. At some point, out of the clear, blue sky, he asked me ‘How old are you?’ I read into the question a little, and said ‘I’m 45. I think your dad is just a couple years older than me.’ He didn’t say much to that. The subject passed. It was one little question, but there was so much in it. There’s thinking of my family, of his own circumstances. There’s a question about how normal is it that he could be losing his dad now. And when I answered the question, the wheels were turning inside his head. Grinding. I’m sitting there next to this boy, and wondering what is racing through his head in that moment. My dad is still living. I haven’t gone down the path he is going down. It is so hard to get a feel for it, and so hard to feel anything but pity for this young man, who is much closer to devastation and the finality and permanency of it than he probably realizes. And we’re sitting there watching a hockey game.

I bought him a pennant and we planned on going out back to see if any players would sign autographs for him. After the game, we went out back. After a game is a challenging time to get autographs. I knew some players would stop, but probably not many. It is late, and they want to get home. We ended up getting five players. We specifically waited for Ryan Miller. He is always one of the last guys out so by the time he got out, what crowd there was had largely dissipated.

After one or two players had signed and gone on their way, Frankie said something to me about ‘after my dad dies’, Timmy was going to be taking him to some games (as opposed to Tim I surmised). He phrased it as a ‘when’ rather than an ‘if.’ I figured Frankie knew exactly what was going on intellectually, but emotionally, I couldn’t be sure of where he was in processing everything. I let just a couple of seconds pass, because it was a somewhat shocking statement to me, and I wanted to hear it again in my head to make sure I heard it right. I had. I half-anticipated we might get into a conversation on that subject during the night, but only if Frankie wanted to bring it up. I knew that if the opportunity presented itself, I wanted to let him know I wasn’t going to let him free fall if I could help it. Here was the opportunity to let him know that an adult male of the same generation as his dad, who wasn’t a family member, gave a damn. I think I put an arm on his back and said ‘Frankie, if that time comes, I’ll be around to help you out.’ I felt silly saying ‘if.’ It wasn’t that I wanted to be Mr. Hopeful in the face of what was at that point a pretty fair certainty, it was that I did not want to be Mr. Gloom, just in case he was holding onto something inside, even though I didn’t think he was. His statement was definitive. The way it came across made me feel like he was trying to get used to the idea, and somehow in his mind, his dad was already a dead man. I don’t mean to make it sound like Frankie was writing off his dad, but he may have been writing off the idea that there was a future for him that involved his dad. Testing it. How did the words feel when spoken? In some respects, it was kind of admirable to hear. He gets it. He’s (being forced to be) brave. He acknowledges it to the extent he’s able at this age. But it was so sad. What can you say to that? I certainly couldn’t give him the big reassuring ‘Ahhh, it’ll be ok. Don’t you worry about a thing’ statement. He knew. I knew. He would have called bullshit on me in a split second and rightly so. It wasn’t a thing to play around with. And his statement was subtle, like the age question. It wasn’t just idle chit-chat about who would take him to hockey games. He was making the deeper statement. My response had to acknowledge it. It was a wet eye moment for me which I concealed from Frankie.

And there we stood by the gate at the player parking lot. Ryan Miller got in his car, drove toward the gate, and everybody there was kind of holding their breath – will he stop?….YES! I sent Frankie in front of me with the pennant, and Ryan Miller signed for him. I sent Frankie to another car, because a second player had stopped. While Ryan was signing the ticket stub and Frankie was out of earshot, I couldn’t help myself. I don’t know exactly what I said, but it was something like this. ‘That blond boy you just signed for… he’s going to lose his dad in a couple of months from cancer and you just made his night.’ Ryan Miller said two words, which I think put the whole thing into proper perspective. ‘That sucks.’ Truer words were never spoken.

We headed for the car. And still, Frankie is talking to me, and our conversation continues. Our four hour conversation continues. About anything, mostly hockey. It was great. He was on top of the world. It was a big world, and he was sitting atop of it. It felt great to give him a bright spot during a long, horrible period of time. Chirp, chirp, chirp all the way back home. He was so happy. An inexhaustible supply of topics, questions, and observations. There is nothing wrong with that kids’ brain, I can tell you that much. That is one high-functioning instrument right there. Neurons are constantly firing. Sharp kid. You couldn’t put anything past him. And he never gets tired. Ever.

So, we got home. I had the pennant and the ticket stub with me in the front seat, and when I stopped the car, I gave them to Frankie, telling him to get in there and show off his prize. He was so full of life. He was just busting. He dashed out of my car, and I followed, making sure I was far enough behind that he’d get a little moment in the sun all by himself. Unfortunately, that bright spot was about to come a grinding halt, and I didn’t realize how quickly that was going to happen.

I got into the house. The kitchen was dark, and so was the office. I snaked my way through and into the family room where everybody was. You had just finished watching a movie. Frankie was already in Timmy’s arms, snuggled on a couch, seeking comfort from a brother who was walking the same terrible walk as he. Tim was moving between chairs constantly, trying different, odd positions to sort-of sit. He couldn’t get comfortable. His breathing was audible and labored. His stomach was distended. He looked terrible. Terrible. Grey. The grey pallor of death was here, unmistakable to me. I expected to see Tim and you seated, with Frankie showing off his prizes. Instead, the prizes were nowhere to be seen. Discarded. Frankie was completely deflated. I mean like ppfpfpfffffffffft deflated. It was all gone. Everything of the prior five hours was gone. He walked right back into it, prizes in hand, joyful in the seconds before I got into the room. He went from a dark room to a lit room, saw his dad looking grey and terrible and in extreme discomfort, and boy, the imagery of going from darkness to light never had more meaning. Boom. Nothing had changed. The lights were on but the room was dark. The specter of death was in the room. I could feel it. Frankie had spent the past several months watching his father slowly die and boom, he’s right back in it. Oh yeah. Dad’s still dying, and this still sucks. This is still overwhelming, I’m still powerless, I’m still being swallowed alive, this is still a living nightmare that finds a way to get worse every day, and I’m still seven. I remember you expressing concern at times because Frankie didn’t really want to talk about it much. I get that. I got it right then. How does a kid talk about watching his dad perish a little bit more each day? He can’t. He just can’t.

The moment I entered that room is what I always flash to when I think about that whole period of time, and the reason why I just can’t read your book cover to cover.

Tim thanked me profusely for taking Frankie to the game. We spoke, but he was in such difficulty, it was a brief conversation. We shook hands while he was in a funky kind of semi-kneeling, semi-prone position on a chair near the hallway. He wanted to thank me – father to father. But where I felt comfortable with Frankie, I felt very much the opposite with Tim. He knew. I knew. What could we say to one another? Two fathers who understood one another and the circumstance, and all we needed was a glance at each other as we shook hands to pass an awful lot of unspoken fatherness and sentiment between us. There’s a connectivity between father and son that is generational, and cuts to the core of a man, and cannot be expressed verbally. In the brief eye contact and handshake, I got his expressions of gratitude on every level, and he got my acknowledgement, and we shared a total understanding of the entirety of the circumstances, and we did it all in a few seconds. We thoroughly understood one another. I cannot describe it. It is a man, husband, father thing. He knew it. I knew it. That’s all. Nothing needed to be said. Other conversations took up the slack, about the movie, a little about the game, but Frankie was disinterested in talking at that point.

I left that night, knowing Tim did not have an enormous amount of time left. I was glad to have had the opportunity to give Frankie a bright moment in the middle of one giant terrible, enduring moment, and I was sorry it couldn’t be more than it was, and that it ended so abruptly. How many millions of times has a child raced across a room seeking the comforting embrace of their mother, only to find themselves in the arms of someone equally devastated? What a terrible thing for a child to go through.” Written by D.B.

David, thank you for sharing this. My heart broke as I read about my son’s pain. I wonder what still goes on in his life that I am not even aware of as he has grown up in ways a kid should never have to. And thank you for being willing to talk about how the journey has affected YOU. You promised me at Tim’s funeral that you would try to step in. You promised me that when others faded from our lives, you would not.

You have kept that promise. I am so deeply grateful that you were the one that took Frankie out that night. Not everyone would have captured the significance in the way you did. Many would have blocked it out if they did. I am lucky. Frankie is lucky…


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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!