Help for Healing

Bitter & Sweet, living daily with grief


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From Neurosis to Psychosis

Part two.

I left off on my last blog when I arrived at the hospital at 1:00 am. Spencer (Emily’s hubby) had told me on the phone earlier that it was like someone had possessed his wife’s body. I was about to see firsthand what he meant. Emily recognized me. She knew my name. But there was no response to seeing me like she understood I had just flown in and I don’t usually get to see her this time of year. The interesting thing, was that she used names of actual people from her life, but just didn’t associate them with correct reality-like details.

One of her favorite repetitive phrases at this time was, “You gotta go,” accompanied with a wave of her finger. One hospital staff would come in and she would tell them they were much too fat and they had to go. (They were not necessarily overweight in reality.) She also complained repeatedly about the filth she was seeing in the room, and there many filthy people who “had to go” as well. She would point to the floor and say, “Don’t you see that? Don’t you see that?” Only there was nothing there to see.

She knew her four-year-old Aubry’s name and age, and she knew her eight-year-old Parker’s name and age. But then she would explain to me that it was crucial that I understood that each of her children were in actuality herself and Spencer. Again she would ask me, “Do you understand what I’m trying to tell you?” And of course, I couldn’t understand. I had known from training that you don’t ever support a delusion or hallucination. The right thing was not to agree. But at the same time, it seemed equally insane to argue with a person about reality when they were clearly not in touch with it. So I mostly just listened, didn’t correct her, but admitted I didn’t understand when she asked me directly.

One of the saddest moments of all for me, also serves to best explain the level of her confusion. Eventually we will all chuckle about it, but at the moment it was purely gut wrenching. I was watching my daughter suffer emotionally because of what she believed was happening. She was weeping and telling me about Henry. “Darcy, you just wouldn’t believe what they are doing with Henry. They are treating him like a dog. Like a dog. Like a damn sheep dog. It’s horrible and we have to help him.” And she was so distraught because of the injustice to Henry and was genuinely sobbing for him. The problem? Well, Henry is her sheep dog. He really is a sheep dog.

When the ambulance came to take her to the treatment facility, at first she was not going to cooperate. I asked them what would happen if she didn’t go voluntarily. I was told they were not allowed to touch her. If she didn’t go with them, she would have to be police escorted. They would handcuff her and the whole affair would probably be extremely traumatic for all of us. Thank God we were able to reason enough with Emily that she eventually got up and moved to the stretcher without incident. We said goodbye to her in the parking lot and went back to our car. The hospital she was going to was an hour and a half away from where they lived. We were told we would not be able to see her until the next day, so there was no point in following the ambulance. They did however, say they would do their best to get the hospital staff to call us when they had her checked in. They couldn’t guarantee they would, but they would try.

So we went home, disturbed, worried and scared for the woman we love so dearly. Of course, the treatment facility never called me. Unfortunately, that would turn out to be the least of the disappointments we were about to be encountered with. I had looked at their website on the way home and told Spencer I was really happy with where they were sending her. It was a real treatment facility, not just a stabilizing place. She would have an impressive treatment team with several different professionals helping her, and most importantly family involvement was a key part of their protocol.

I don’t think I’ve ever seen a facility so totally and completely false in the representation of themselves. But more to come in part three.


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A Day in My Life…

On Monday, I noticed an odd spot on my breast. Looked like a bruise, but then not quite. I went to my friend’s house who is a breast cancer survivor and asked if I could show her. (I can’t imagine men being comfortable showing each other a concern- ha ha!) She thought it was strange but was more concerned whether there was a lump. We were both unhappy to discover there was a very distinct lump. She told me a few reasons why it probably wasn’t anything serious, but I definitely should call the doctor in the morning. The rest of the day it was in the back of my mind (of course), but I managed to keep it at bay knowing it was probably not serious.

Tuesday morning, I called the doctor first thing. They fit me in early afternoon. I had my usual full day ahead of me so the first couple of hours I just pushed along. Then I went in the hot tub to try to relax a bit before my clients started coming. I started to get that panicky feeling and my breathing was getting choppy. I talked to dear Summer, knowing she would give me a rational smack in the head and I would be fine. Instead, the flood gates opened. I was scared. Really, really scared. She offered to go to the appointment with me. In between sobs, I told her that wasn’t necessary and I knew she was as busy as I was. But of course she came and of course I needed her.

I had to pull it together to keep working until my appointment, but between clients I was bombarded with thoughts and fears. To be fair, they really weren’t irrational. I know better than most that a simple, small thing can alter your life forever. My first thought was Frankie. This just couldn’t possibly be anything because that 11-year-old kid couldn’t possibly be asked to have no parents at all. Even if I could be treated and beat it, that poor boy does not need to endure watching the process all over again. Treatments, vomiting, schedules being thrown out the window. Watching someone visibly change who is supposed to be your tower of strength. He just can’t be asked to do that again, right?

Then I started thinking about my life in the last couple of weeks. I have been re-evaluating my life very intently because I have been working too hard. I have been burning the candle at both ends. I have been exhausted at the end of every night and know I can’t keep it up. I have been trying to make changes, but have struggled with what changes to even make. And then I really panicked. Holy shit! What if the universe/God has been on my case about it because I need to make room for treatment? Is that what this has really been about? Summer and I were just talking this weekend about how with all the interactions we have with people, if we ever got cancer, we wouldn’t go to Roswell (our local cancer hospital). That would mean regular trips to PA or Ohio. Overwhelming thought. Breathing is getting tough again.

I take a shower before I go to the doctor. While I am in there, another related thought crosses my mind. I absolutely know what it takes to fight cancer. I know the stamina you need. I know that a positive attitude is mandatory for success. I know that I have to muster up the strength that I know I possess and I will have to figure out how to access it. And then I found myself sitting in the shower seat sobbing, just like the day I found Tim in there when his daughter came to surprise him for Father’s Day. Because I knew that I just couldn’t do it. I’m too depleted. I will end up dying because I’m not the woman I was before taking care of my terminal husband. Even though it has been three years, I’ve not recovered.

I know my friends will shore me up. I know it. But Christ, Frankie won’t even have a step-father who loves him after I’m gone. Tim’s kids had me and I don’t love them any less since he has been gone. I know that Tim had peace about that. I failed Frankie in that respect. Utterly failed.

Brigette was home with a sick child, but she kept in touch with texts. She told me she didn’t remember the last time she prayed as hard as she was praying for me.

We arrived at the doc’s. I love Dr. Grace. Tell her everything, trust her implicitly. She looks at my mark and looks puzzled. She hasn’t ever really seen anything like it before. (Why does that always happen to me? I’m always like a freak show for doctors!) BUT… she knows it definitely does NOT look like cancer. I love her because I never have to explain anything to her because she remembers every detail of my life. She thanks me for not waiting and says she is grateful she can trust that I won’t mess around with anything medically. And without being told, she knows it is because I can’t possibly take risks because Frankie needs me. She is glad I get that all on my own and she doesn’t have to pound it into my head. Even though I feel better after seeing her, she promises me by the end of business day I will have answers. She works her magic and I am able to leave her office and go directly to the radiology center.

Off we go. First the mammogram. You know the drill, ladies. First set of pictures and then you sit in the waiting room. As suspected, I get called back for more. Now they see something in the other breast they are also concerned about. Great. She has to smoosh them further for the second set. Then they ask you to hold your breath while they take the image. I try until I finally gasp because the pain is too much. She tells me ever so nicely that she hopes she doesn’t have to retake them because I yelled out.

I go back in the waiting room and tell Summer I can’t believe with all our modern medicine we haven’t figured out anything better than putting our delicate breasts into a vice grip. She laughs and tells me if men had boobs, there would have been an answer years ago. I laugh at that. (Yes, Gary, I admit that is a sexist comment, but cut me some slack!)

Next the sonogram. She tells me she thinks it is a cyst. Doesn’t know why or how it would get there, but possibly it was pinched somehow. Phew.

I tell my step-son Colin about my day. He just looks at me. I told him that I didn’t think our family could go through it again. I told him I didn’t think we would be able to pull off the great job we did with his dad this time. He just nodded his head.

Later, my doc’s office calls and say they agree it’s a cyst. They want me to put the hottest compresses I can stand on it, as many times a day as I can manage it. (Apparently they don’t know I am already burning the candle at both ends and don’t even make time to eat half the time!) If it doesn’t go away in a month, then I have to see a surgeon. Bottom line is, it may not be cancer, but it is still not right and not supposed to be there.

So I spent the night rejoicing. I spent the rest of the night being super grateful that I don’t have cancer.

Wrong.

I spent the night continuing to have a hard time breathing. Being the lucky woman I am, (no, that is NOT sarcasm) male and female friends called to check on me or just to say hello (because they didn’t know what was going on). And every time I said hello, I would burst into tears again. I wanted to be happy, but I felt like a wrung out dish rag.

Everyone got it. No one judged me. They all told me that my fear was perfectly logical, understand, reasonable, not irrational. My daughter Emily called me about 10 PM and we talked til after midnight. She told me that if I ever got diagnosed, she would move up here and help take care of me. She said she didn’t do that for her dad but she would do it this time. I read between the lines and thought she must have regrets about that with her dad. I made a mental note to talk to her in the near future because I don’t want her to be plagued with that.

I watched a movie recently. The girl looked at the guy and said something like, “You weren’t there when I needed you. In the end, that’s all relationships are. It’s being there for the big stuff.” I thought it was an excellent summation. I’m lucky enough to have people who ARE there. Summer left work to go with me because she got it. Anyone who happened to know I was worried about a lump would have done what they could to support me because they get it. If you lived through Tim’s cancer with us, or if you read the book afterward, you get it. If you love me, if you know how to feel compassion, you are there by my side.

Today is a new day. Now I am starting to feel that relief I thought I would feel last night. Today I am breathing easier and emotionally feel the gratefulness I understood intellectually yesterday. Again, thanks to my amazing support system. You know who you are. And for those of you who are reading and wondering why I didn’t tell you, don’t. It all happened fast so don’t be mad at me :).

I wonder what today will bring?


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Biopsies

It’s been stormy, cold and blustery in the Buffalo area. Frankie had almost three weeks off of school before he returned today. I was going stir crazy, but have to admit, it was nice to not have a schedule for a while.

Confession time. Rather than catching up on things, I have been absorbed on a client’s ipad. She is a teen and wanted me to watch Dr. Who. I can never tell her, but I am kind of hooked. This is exactly why I do not watch TV to begin with. I get hooked. I’ve watched all of season one, which was 13 episodes. I’m halfway through season two. I don’t think I can possibly watch all seven seasons. My businesses will go down the drain!

I wondered what I could blog about today because I have been in a cocoon all week, as has the rest of the area being snowed in. Then I remembered an interesting conversation I had with someone last month at an event I was selling my book at.

He was passing by and looking at the tables. When he got to my book, he started to tell me his story, which is what usually happens. He pointed to a woman standing an aisle over. “See her? That’s my wife. She’s been with me a long time.”

I don’t remember the exact details, but I do remember that he said he was a simple man. He repaired cars. He said he used common sense to save his wife’s life. When there is a nail in a tire, you don’t pull the nail out or you will blow the tire. Kinda like when you step on a board with nails, you don’t just pull it out of your heel right away. (Remember that blog?) You can do more damage that way.

He surprised me when he said he has made it his personal mission to tell the world that biopsies are hazardous to your health. It goes against what we are told all the time, but he believed it with his whole heart.

Several years ago, his wife had a tumor in one of her kidneys. The doctor wanted to do a biopsy. Pretty standard procedure. He refused and said they should just take the whole thing out. When the surgeon refused to comply, he kept looking until he found a doctor that would heed his wishes. Later, he said the surgeon told him that decision saved his wife’s life.

When they got the organ out, they went to look at the tumor. At the mere touch of an instrument, the tumor exploded, spreading its toxic cells everywhere. Had they done a biopsy while the organ was in his wife’s body, the cancer would have immediately spread everywhere and the disease would have been terminal.

Now, I’m no doctor or surgeon, and have zero formal training. I can’t possibly agree or disagree with this guy with any sort of intelligent opinion. However, I can say that what he said made a lot of sense to me. And there was his wife standing there, and there he was still loving her years later.

I welcome your informed comments about this. I certainly will stop and think twice- and probably several times- if I ever need a biopsy for something. What do you guys think?


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Solving Problems in Bed

Did I get your attention with that title? I can’t wait to see what kind of followers I get this week- lol.

Those of you who have read Bitter and Sweet may remember the story about Tim and I purchasing an adjustable king-size bed. When he was sick, he couldn’t lay the same way so he slept for several weeks on the recliner in the living room. After a bunch of research, we purchased a new bed. We opted for a split bed so that each of us could move the bed up or down and not bother the other. We thought we were pretty smart.

We were so excited the first night to be able to sleep in the same room again. However, we learned almost immediately that the split bed was a bad idea. What it did is make for a very uncomfortable crack down the middle of the bed. You either had to sleep a mile away from each other, or both squeeze into a twin-size bed.

I did some research on line and of course there was actually a product for such problems. I spent about $80 for a fleece piece that you put over the center of the crack and then it straps around the mattresses. That created another problem. I had to find sheets on line that you could buy separately. We had extra long twin fitted sheets for the mattresses, then had a king top sheet. With the fleece down the middle, you couldn’t have separate fitted sheets so I had to buy king fitted sheets. What a pain in the butt.

And it didn’t work. The fleece wasn’t very wide and all that happened was it would get pushed down the crack in the middle. Then when Frankie started coming into bed, he purposely pushed the mattresses apart and made a cave for himself to sleep in. Problems.

After Tim died, I tried a couple of times to put the bed on Craig’s list. Never even got offers. Can’t trade them in cuz the stores won’t take em back. While it’s adjustable, it’s not a hospital bed as there are no rails. Can’t really donate them to Hospice or anything. So I just keep living with it.

Yesterday, I decided it was time to do something about it. Why yesterday did it become urgent? I have no idea but I just get that way sometimes. A friend told me about those foam mattresses you can put on top. I thought that was a brilliant idea. Off to Kohl’s I went. Brigitte met me there as she has the charge card and all the coupons. We found what we were looking for. For a cool $580, I could solve my bed problems.

I laughed out loud. Ain’t no way in hell I’m paying that. Could get a new bed for Peter’s sake!

Of course, you have probably gathered by now that Brigitte is the world’s best problem solver and need meeter around. She called her husband and he said he would come look at the bed. He could probably build something to keep the mattresses together. Then I would just have to special order a mattress pad cover and try to solve it that way. Sigh.

Then it hit me. Why don’t I just trade beds with Frankie?

When he got home from school I asked him and he could care less. He’s never in his room anyway. Both he and Colin sleep in the guest room. Go figure.

So Colin helped me drag that bed upstairs with all the mechanics attached. It took about an hour and I was dripping in sweat. And of course that started the next seven loads of laundry for all the bedding. And I wouldn’t want anyone to know what my floor looked like once the bed got moved. Yikes! So there was more cleaning…

My room looks so much bigger now. Frankie’s looks so much smaller. But I don’t have a crack down the middle of my bed. In the process of all this, somehow it became some kind of symbolic moment. Frankie hardly ever sleeps with me now. And it felt like Moving Forward. Putting the past to bed, so to speak.

Of course, I’ve almost fallen twice already. Once when I went to get up, and once when I sat down to put on my socks. It’s much lower and it’s obviously going to take me a long time to adjust my equilibrium.

Anyone know how to solve balance problems?


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Punctured Foundations

foot xray

So it’s Frankie’s birthay and I’m doing the yardwork to prepare and I step on a small but deadly piece of wood. Had to call 911 and then go to the emergency room. It was stuck in my foot for a couple of hours before they could remove it. I was like the local freak show. People kept stopping in to ask if they could look because it was so bizarre. Nails go in two inches all the time, I’m sure. The problem was that the wood was still attached, and as you can see by the x-ray, there were about 5 other rusty nails sticking out too. When they tried to do anything, they risked puncturing me again.

Eventually they got it out. I won’t even try to describe the pain. I missed about an hour of Frankie’s birthday party but my ya-yas had pulled everything together like they usually do. By the next night my foot was infected and I was back in the emergency room. A big fat shot in the butt later, I am on the mend. I had to include the picture because just saying I stepped on a nail doesn’t quite describe it.

The interesting thing, is that this event catapulted a whole bunch of dynamics in my life with different people. When I went to see Ellen, my spiritual director, I walked into the office already crying. Took me awhile to compose myself before I could even talk. It’s too hard to describe the process of spiritual direction so I won’t even try, but eventually I ended up in the treatment room.

She said the image she got related to my foot, which of course wasn’t surprising. She talked about how the foot is the foundation, and my foundation had literally been punctured. A puncture wound is harsh. It’s not like a sprain, but a bit more violent sounding and feeling. My foundation had been turned around, like the earth was in the sky and the sky was on the earth.

It was a tough conversation in many ways while I tried to get a grip on what she was talking about. I knew when I walked in that I felt like I was spilled all over the place and needed to be regrouped and put back together. One of the things that we finally came to was a conversation about who I am in the world. Who I want to be, my primary purpose. Bottom line? I want to be a positive force in the world, someone who is part of the solution and not the problem. As corny as it sounds, I want the world to be a better place because I’ve been in it. My starting place is in the home raising my family. Then the circles keep widening after that.

So I need to not lose that focus somehow. And I need to surround myself with people who understand my vision, support it, bring out the best in me. And all of that is grounded in the foundation of the understanding that ultimately it is about God’s love that breathes life into it. I’m still struggling, but I’m trying to flip the foundation back, slowing letting the wound heal.


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Progress

One of the things that happens with writing a personal book about terminal illness, is that people tell me their stories. Part of why I work so hard to “heal,” is so that I can be present for other people as they grieve.

There are so many stories to share and they effect me in so many different ways. One family in particular has been giving me quite an education about things I haven’t experienced or heard about before. And they challenge me to figure out how to help them grieve because their situation is so unique.

Their loved one died from a MRSA infection. I have heard of that, but have never known anyone who has personally dealt with it. You can’t imagine all the added horror that is heaped on top of the already tough job of losing a human being. Spending those last precious last days, hours, and finally minutes while you are scrubbed up and covered in all kinds of barriers to prevent infection, sure changes the atmosphere of that time together. I can’t even imagine. I crawled right into bed with Tim the whole time he was sick, in treatment, or in the last stages of the dying process. This family was robbed of that.

They were told after he died that all of his belongings, including medical equipment would need to be destroyed. Incinerated in fact. As an organizer who goes into people’s homes and tries to help them de-clutter, I know how hard of a time people have letting go of “things.” But try to get rid of things that belonged to a person who is deceased, and it is almost impossible. It is a very, very difficult thing to do. One of the things that helps immensely, is when you can adopt a “pay it forward” mindset. Knowing someone else (maybe even someone you know) can use things helps to let them go. I remember being excited when I found out about how the Lyon’s Club can use old eye glasses. I had found so many pairs of Tim’s around the house that I didn’t even know he had. Donating them made me feel great inside and I knew Tim was smiling about it too.

This family? Robbed again. They thought they had to burn everything. How the hell do you find the strength and energy to do that?

We decided to do some research. It appears that the information they were told may have been incorrect. One of the worst things about accepting our mortality is how powerless we are. It is rough on us Westerners to not have control over things. When I decided to jump into research today, I didn’t know how much time it would take. But boy, was I aware at how pumped I was when I actually made progress. I bounced around a whole bunch of places and websites til I finally hit the jackpot with someone in the Erie County Health Department. He was a wealth of information, was friendly and compassionate. I couldn’t send an email fast enough to that family.

Hopefully this information will help them get back some of those things about the grief process that can help us get through it. No, it won’t bring their loved one back. Nothing will do that. Their hearts will still be broken. But maybe now they can start to create some “sweets” from thier “bitter” situation. I call that progress 🙂


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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!