Help for Healing

Bitter & Sweet, living daily with grief


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Blue Thanksgiving?

This week I was cleaning out my closet to continue my efforts to purge and minimize where possible. It brought me to my two memory boxes of Tim. Every once in a while as I go through them, time passes and I notice that some things that seemed important to keep at first, don’t seem that important later. I think that is a natural part of the passing of time.

This time, I found myself looking with the perspective of having tried to become as paper-free as possible over the last year. This led to a boatload of scanning. I had over 80 scans by the time I was done, the largest one being 25 pages. (Thanks Stef for showing me how to top-load documents!)

Overall, as the days passed, I knew I was melancholy and sober. It wasn’t just reliving my husband’s death, it was reliving the loss of my church family as well. But the deepest wound by far, was finding one of Tim’s treasures he had saved. He had a couple of Christmas tags in Mom’s handwriting that said, “To Tim, From Mom and Dad.” A wave came over me as I said in a whisper, “My God, all three of them are gone, completely gone.”

Today I had to go to the Hospice campus for something. They have done lots of remodeling. Their already nice facility is even more beautiful and more convenience-friendly. But I didn’t even make it back to my car without calling Michelle back and dumping a whole bunch of tears on her.

She asked how I am overall. Lost. I feel lost and orphaned. Both parents gone, a spouse gone. Geeze, I know lots of people are in the same boat, but I’m super in touch with my own grief right now. It’s mine, and it’s intense. Why does this stuff always happen around the holidays? That familiar stomach ache. That familiar hollow feeling I know so well. Only it is carved even deeper now. That feeling like this death aged me another ten years ahead of my time. 

I laugh when I job hunt and I hear dumb things like I don’t have experience with some of this stuff. The hell I don’t. I have gobs of it. Not as much as some, but more than a lot of people. I’m not feeling a pity-party at the moment. Just letting folks out there know that if you are in grief, don’t let anyone tell you there is a time limit to it. You’re allowed the rest of your life. It’s okay if the holidays are bittersweet at best. That about sums up life in general anyhow. Let yourself show the courage to taste both ends of the spectrum.

It can still be a Happy Thanksgiving, even when you’re shedding some tears.


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When end-of-life care magnifies the pain

I’m cheating this week. I am going to post an article in the Buffalo News that I wrote and was published yesterday. I love the title the paper came up with. Care is supposed to diminish the pain, such irony. The response to the article has been amazing. I have gotten emails from people telling their own stories, asking for assistance in guiding their journeys with their loved ones. I am especially excited about one from a geriatric doctor who I will be meeting with to discuss how to attempt to make positive changes in the system. I think it’s worth posting it here for those who aren’t local or don’t read the paper. Please feel free to share your own stories and experiences!

“After losing Mom and my husband, writing books about it, and becoming credentialed as an Aging Life Care Manager, I assumed approaching Dad’s death was going to be the best death I had the privilege to be part of. I know that sounds strange, but I had become educated and knew when Dad switched to palliative care, when his time came, he would not suffer. I promised him that.

I had absolutely no idea what I was talking about.

Over the last decade, I became increasingly involved in his care. He had Parkinson’s and we began the journey of educating ourselves the hard way. After treating swallowing issues and bladder disorders for years, we were finally informed they were symptoms of Parkinson’s. Itchy skin. Blood pressure. Is there anything this thing doesn’t touch? It’s a slow progressing disease that makes life miserable but doesn’t have the courtesy of actually killing you. At least not for years and years.

My family and I helped him “get his affairs in order” over time. He slowly made changes financially and legally to put him in a good position. He sold his house and eventually landed in Assisted Living, just down the street. While it seemed crazy expensive, finding out about a VA benefit made it almost affordable. He would have three meals a day, have his apartment cleaned, and his laundry washed.

We made sure his medical papers were ready. We had lots of discussions about his wishes so I could be a good Health Care Proxy if need be. By the time he turned 85, he had lived a good life and was ready for the next and a reunion with his wife.

In July, Dad starting experiencing pain. Spoiler alert: Two of the last three weeks of his life he lived with increasing pain. I knew our medical system was broken, I just didn’t realize how badly. Medicine has become a for-profit business, which usually means money is more important than patient care. No matter how much I advocated, I couldn’t beat the facility or the medical persons they contracted with. It became crystal clear they didn’t understand palliative care or that palliative and hospice were no longer interchangeable. More importantly, they didn’t want to. Professionals should inform patients of treatment options and expected outcomes. The decision to treat (or not) should be the patient’s, not the doctor’s.

I could not get the administrators to see what was happening. The staff would often shudder at what they witnessed but were powerless. His primary would not prescribe enough pain medication and refused to order a catheter in spite of his fall risks. There was blatant refusal to accept his MOLST (Medical Orders for Life Sustaining Treatment). It finally culminated in them blocking Hospice from treating him. Yes, you read that right. Eventually they were cited by the Department of Health for failure to comply or I can’t imagine how bad Dad’s suffering would have gotten.

I later discovered that about four years ago, regulations were drastically changed. Dying is not enough to gain Hospice care. You have to have a terminal illness to qualify. How do I keep heralding the advantages of palliative care if there is no one to help folks when they get to that point? Hospice can’t be happy about this either.

I will never, ever forget the look in Dad’s eyes when he was hurting and I could do nothing for him. The several individuals who refused to do proper research and care for him appropriately should not be practicing. You only get to die once. Why should a decorated Korean War veteran, after working his entire life in an American factory, and was a volunteer firefighter for 60 years, have to suffer at the end of his life? If you can answer that, please tell me. I would do anything to make sense of it.”


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Hanging On

I’ve been doing a lot of reflecting the last couple of weeks as I’ve attempted (with my family) to help Dad navigate the beginning of a different life – the next life. A life without Parkinson’s and all the other malarkey here.

As I write, he is hanging on. He’s been hanging on for several days. He’s given me a lesson in humility as I keep realizing that no matter how much education or experience I have, no amount of prediction is full proof. After my fourth or fifth “this is it” was completely wrong, I stopped trying to guess.

My doctor asked  me today if I was ready for this to happen. I told her that he and I have been talking about this for well over a year. I want this for him, because he has wanted it so much. What I was not prepared for, was how difficult this has been. Dad did all of this “right.” He filled out his forms, got all his ducks in a row and his affairs in order. I told him the beauty of palliative care is that it would be painless when the time came.

Boy was I wrong. I already knew that palliative care that is apart from Hospice is a new concept. I knew that accepting mortality is a tough idea for people to grapple with. I just didn’t anticipate how ginormous the gap actually is. At one point, I had his primary doctor tell me that medicine is not practiced “that way” in America. He truly thinks I have some wacky idea that doesn’t even exist.

The place where he lives is also way out of tune. I approached them back in January and warned them this would be coming. Of course, they ignored that conversation over the last eight months. The result has been devastating.

I pointed out that Dad is only the beginning for them. As this idea catches on, there will be more and more people. Someone finally asked why amazing, compassionate health care is only found at the end of life. Someone finally realized that patients should be driving their own treatment, not medical staff. Now the movement has begun but it is even more difficult than I could have imagined.

That has been the hard part for me. If Dad has to go, I wanted to help him have it on his own terms. A hard-working war veteran should have the right to end his life the way he wants. And he definitely should not have to suffer because of that decision.

We finally have Hospice, but it was the battle of all battles to get it for him. There is no do-over, no second chances with end of life stuff. I just have to hope he knows how hard I fought for him. We eventually succeeded, but he suffered longer than he should have before he got “comfortable.” Damn it to hell!

Please pray for him. He is tired and ready. He seems to have a hard time letting go. I want so much for him to be able to relax into what lies ahead for him. It’s almost over, Dad. You just have to let yourself embrace it. You so deserve the rest and healing that is waiting for you.

dave (1).JPG


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Is It Me???

As I continue the drama of finding Dad the care he needs/wants, I have been astounded at the majority of medical professionals we are dealing with. I say I know these things, but when I am actually interacting in reality with it vs. speaking theoretically, I can’t believe things are as backwards as they are.

While most people wouldn’t say they believe this, in practice they betray they do. I am realizing that even medical peeps hold to the idea that every person wants to live as long as possible. If they don’t, then there is a mental illness (like severe depression) or they are “not of sound mind.”

Dad has literally been badgered repeatedly even though he has been crystal clear and actually has it in writing on every kind of medical and legal form possible.

Are you sure you don’t want an antibiotic?

Do you understand you may die from infection without an antibiotic?

Over and over and over again. This week’s appointment resorted to actual bullying and attempted manipulation. Dad stood his ground and I eventually exploded at them. The doc responded with:

“This is not medical care in America. American medical care does not work like this.”

I know palliative care is relatively new outside of hospice, but I can’t believe he was serious. He is even young. Uneducated, uninformed and therefore treating patients unethically.

Caring for a loved one with a debilitating disease, eventually losing them, etc. is so unbelievably exhausting and heartbreaking. But dealing with this nonsense repeatedly is beyond maddening. I literally shake with anger and frustration. No idea how to fix the mountain of an issue. How can we change facilities when the doctors don’t get it? And how do we change doctors when they are trained to believe death is failure?

Systemic issues aside, I have my father to care for. Please keep him and my exhausted family in your prayers as we attempt to navigate an incredibly complicated set of diagnoses with treatment options that are Catch-22’s at best, in a system that is utterly broken and unsupportive. What a sentence that was.

One moving, profound (to me) bright spot. Frankie turned 16 this week and asked me a ton of questions to try to understand what is happening with his grandfather. He absorbed the horrible information and asked for clarification that indicated that he indeed understands the depth of the problems and their significance.

He asked if Grace, his and my doctor, would be able to help Grandpa. I said that she is an excellent doctor and would respect his wishes but is unable to take on any new clients. He thought for a moment and said, “Mom, why don’t you and I give her up so she has room for him?”

I cried later in my room. I love that kid. He tries to pretend he’s selfish and uncaring because he’s a teenager. He’s not fooling me. He has an amazing heart.

Give yourself some time to think about these issues for yourself.


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“Lovely”

You’ve heard me say about a million times that I have an exceptionally supportive family and friend network. Today I want to focus on just one of my sisters. When Summer got very close to my family while Tim was sick, she gave my sister Janet a nickname- Lovely. And it has stuck.

Janet is eight years older than me. When I say I’m the baby in the family, I mean I’m really the baby. Janet is my closet sibling. My brother is ten years older, and my other sister is 18 years older. In many ways, I grew up like an only child because of the age difference.

If you have ever attended one of my lectures, my family almost always comes up. When I speak of Janet, I say she is one of the nicest people I have ever met. Nice may be a generic word, but it is truly fitting for her. She just doesn’t have a mean bone in her body. As we’ve gotten older, she will often tell me she isn’t nice anymore. She has gotten older and less pleasant. But Janet’s less pleasant, is still much nicer than most people are on their best day.

I learned that life wasn’t fair many times in my life. Probably the single most unfair episode our family ever experienced, was when Janet lost her oldest daughter. She was only ten years old and was killed in a car accident. She was the sweetest thing ever. She was feminine and loved wearing curls and frilly dresses. She loved to show affection. I have read many, many times about the loss of a child and the strain it puts on a family, especially a marriage. Statistics are very high for couples divorcing after such a loss. Not my sister. She and her husband are high school sweethearts. She isn’t just nice, she is a very, very strong woman.

When my mom was sick, the hospice staff told us that I was the voice in the family and Janet was the hands. I will never understand how she didn’t pass her nursing boards because Janet is an absolute natural. She would change Mom’s bandages and bathe her with such kindness and gentleness. One time she wasn’t available and I had to get Mom ready for the day. We both laughed hard because I was an utter failure. I had her nightgown twisted around her IV’s so badly we had to ask for help. Mom and I both knew that no one could replace Janet. Not even close.

Janet and her hubby are getting ready to make a huge, massive life-changing move. They are going to Tennessee to be with their beautiful grandson.

Lisa, Carson Patrick

Lisa, Carson Patrick

Can you blame her? I certainly can’t. We all knew someday they would go south to be with their daughter, but someday came sooner than anyone expected, including them. They know better than anyone that life is short and fleeting. Why miss out of that sweet boy’s most precious years?

I know it was a hard decision for her. After all, she is thoughtful. I know she worries about me. And she worries about Dad. She doesn’t have the capacity to be selfish. I’ve done my best to reassure her we will all be fine. What I love is that I know if I asked her to stay, she would. I mean, she actually truly would. That blows my mind. It’s not like she is retiring and moving to Florida. She and her husband will still have to work full-time and they will help care for their grandson too. But she would give up where her heart aches to be if she thought it was what was best for everyone else.

I can’t imagine the void I will feel in less than two weeks. I know that we didn’t see each other as much as we would like over the last decade. The hour and 20 minute drive got the best of both of us much too often. We will do our best to stay close, but we both know things won’t be the same.

So Lovely, my deepest best wishes for the new chapter in your life. You will be missed more than you can possibly know. You have been an outstanding example for me my entire life. Your kindness, thoughtfulness, integrity, gentleness and much, much more are something I will never stop aspiring to achieve. I love you! You truly embody your nickname.


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Women

Admittedly, I am more of a glass half-empty person that I am a half-full. I think most people err on one side or the other. If you’ve ever been to one of my lectures, you know my philosophy is that the key to healthy living is to balance both truths.

I have a few half-full folks in my life. They enjoy my blogs and Facebook quotes that are more upbeat and positive. The thing is, I’m a professional writer whose specialty is the topic of death/dying and grief/loss. In my practice, my specialty is relationship counseling, but you can’t talk about any of that without a healthy amount of focus on grief/loss. So my half-full friends, you will just have to be patient with my emphasis on being in touch with the pain in people’s’ lives. It happens to be what I am good at.

Sometimes there is so much happening around me, it’s hard to decide what to write about. (As opposed to those weeks when my mind is blank.) Last week I wrote about some great men. This week I”m going to focus on a couple of women that I know that have amazing strength.

My readers are already familiar with Summer. She was a rock for me while Tim was dying. She is a pillar in her church family and the community she lives in. It makes it hard to be her BFF sometimes because often we only get brief moments to chat every so often. That’s the life of someone who so many people depend upon. The year 2016 has been fraught with challenges for Summer that I can’t even begin to enumerate. I mean it’s stuff that tops the stress chart scales. Day after day after day. The last week she has been working with the hospice team to help usher her 93-year-old father-in-law to his final home. It brings memories of Tim flooding back. Listening to her exhaustion from the roller coaster of that daunting task is about all I can offer her. Her “dad-in-law” is one lucky man to end his life with the dignity that Summer and her family are gifting him with.

The second woman who has recently touched me is Ray. She is only 33-years-old, but I think her soul is much older and wiser. She is one of my students. We still chuckle when we talk about how we first met. She was being a bit overly assertive and feisty along with some of her peers. Our first class together started with my own assertion of myself as the graduate college professor- i.e. I was the one who called the shots, not the students. We laugh because we all have grown to deeply respect each other (and very quickly!) that it’s hard to imagine we had a rocky start.

Ray is a cancer survivor. I don’t know what the details are, but I know that she walked into my classroom already having learned so much about life, that some will never accomplish at twice her age. Ray was just told the cancer is back. Yep, cancer is such a beast. An unfair, vicious monster. This time, it is in her spine. It requires surgery, affording her a whopping 50-50 shot at walking again. Oh, by the way, Ray, did we mention we also discovered that you have MS?

We decided that we couldn’t possibly have our last class as scheduled, because it is the same day as Ray’s surgery. It just wouldn’t feel right. And it isn’t exactly appropriate for us to have class in the hospital. We all adore her, but I’m sure her family would like to take up the space around her. We are having our last get together at my house tomorrow night around a campfire. They are all of age so I told them they could bring their beverage of choice. And we are all praying Ray is feeling up to attending.

My first cohort of students I had for one semester. I still keep in touch with one student on occasion, and another student I talk to regularly, even after her move to North Carolina. This group of students I’ve had for an entire year. I feel the weight of grief and loss already. I try to give them my heart and soul and they fill me up with their appreciation. I’m sure we will stay in touch, but let’s face it. Things are never quite the same.

But I’m never away from the thought that the weight I carry from knowing I will miss the amazing women I have grown to admire over the last year, is nothing compared to the weight Ray carries. She is a rock star in every sense of the word. She has acquired strength and experience that a woman her age should never have to have earned the right to own.

My hat is off to you, Ray. And to Summer. And to countless others of the women I know who are towers of strength. When my life feels overwhelming, part of what brings me back is knowing some of you carry much greater burdens than I, and with such grace and love and power and inspiration. Know you are loved!


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Wise Words

Today I met with Tim’s doctor from Hospice. She has agreed to read my second book, “Life After Death on This Side of Heaven.” My hope is that she will write a blurb for the back of the book, or even better, write the foreword. She is an amazing doctor, her experience lies with helping to usher people into the next life, and she also has lost her husband.

I remember when we were facing some medical decision and I asked her my standard question when I am out of the realm of my knowledge. “What would you do if this were your husband?” Her response was, “This was my husband, three months ago.” And that is how I found out she was a new widow herself, and yet fully present with us on our journey.

It’s amazing to me that she even remembers me after three and a half years, but she absolutely does. She asked about how we are all doing and I asked her the same. Then she tossed out this little nugget: “A mother is only as happy as her saddest child.”

I don’t know if she made that up herself or if she read it somewhere, but I thought it was brilliant.

We talked a little bit about my dilemma. In my case, my kids seem to be adjusting much better than I am. Frankie is going to be 12 in a couple of weeks. He had a 95 average in his first year of middle school, played hockey, and had one of the leads in the school musical. He and his brother Colin hang out all the time like two bachelors living the dream.

The only problem is, I feel like I am living a life separate from them. When I try to bring us back to the middle, that is when the conflict starts. We don’t have much in common anymore. Some of that is totally natural, but some of it is because our family got radically changed in October of 2010. As the head of the household, it’s my job to figure out to recalibrate and renegotiate a new structure that works for us. I haven’t done such a great job with that.

I know all four of the kids still grieve and remember their dad in their own way. My oldest, Emily, struggles with depression and angst-type feelings at times like I do. Overall though, the kids are doing really well.

I have to figure out how to be as happy as my happiest child. Kids are resilient and mine are no exception. I’m a tough cookie as far as survival goes. I know that. But I live with this sense of feeling like things are just not right. It creates more of an anxiety thing vs. a depression thing, but it is there. I don’t know what to do with it, so for now I just live with it.

And I will keep trying to connect with my kids. In spite of their protests, I will keep trying to be a family, even though we don’t have a dad anymore. I may not have the answers, but I won’t give up.

My thanks to a very special doctor, who has made a mark on our lives that isn’t forgotten with time. I wish healing and peace for her on the journey she is on.