In this issue:

Guilt, Grief, Caregiving - What you can do
Summer Camp For Kids - Oops! Changes!
A Book Of Love and Honor 
Guilt, Loss, Grief and Caregiving
Dear Dr. Neimeyer,
     I lost my mother to a terminal disease last year--a horrible disease, and she was in horrible shape when she passed. My mother could not do one single thing for herself, not even speak. The stress of caring for her got to me sometimes, and although I gave her everything she needed, sometimes it was not always done with a loving heart. 

"Although I gave her was
not always done with a loving heart."

   So I have horrible guilt and grief combined--grief over losing her; grief for the condition she came to be in. Throw in regret for not spending enough quality time with her along with the guilt, and I am a wreck still.

     I cry all the time. I feel like I should be further along in the grief process. I have good days sometimes, and I guess I have adjusted to her being gone, but then I have absolute tailspin days (like today) and just miss her so much that I think I could cry forever. Any help would be appreciated. I know I probably need to take some type of medication, but I don't want to stifle the feelings. I feel I need to let them flow, but I am an absolute wreck.
Thank You,
Photo by Sandy Godwin
Dear Karen,

     The disease you refer to is devastating--one that diminishes not only the life of the patient but that of family members as well. In many respects, like other degenerative neurological conditions, it is a "living loss," one that elicits grief for all the accumulating losses of ability and communication long before death itself occurs.

"...sometimes our frustration, helplessness,
and exhaustion lead us to be
less than fully compassionate..."

   The result has been referred to as "chronic sorrow" for surviving caregivers like yourself who are powerless to stop the inexorable advance of the disease, despite their best efforts. And of course, just as you describe, sometimes our frustration, helplessness, and exhaustion lead us to be less than fully compassionate with our loved ones as months stretch into years and their condition continues to deteriorate. The result is aptly summed up in your self-assessment: guilt plus grief, essentially two daunting consequences for the price of one.

"One useful practice is to 'reclaim' that [positive] history
[with your mother]. ...perhaps
watching videos of...younger years, swapping stories
or letters with others who knew and loved your mother...
positive memories rather than memories
saturated with only guilt and pain."
     One way to understand this situation is that much of what was good and loving in a lifetime of relating to your mother has gotten eclipsed by the dominant story of the illness and its real effects on you both. The result is a tragically selective image of your mother as wasted by the illness, and yourself as exhausted and perhaps at times petty and angry in response to her incessant needs. But this is a dramatically inaccurate depiction of your decades of a presumably loving relationship, one marked by pride, appreciation, and support that flowed lovingly in both directions across many turning points in your lives together. 

     One useful practice is to "reclaim" that history, combing through photo albums of better times, perhaps watching videos of the family in younger years, swapping stories or letters with others who knew and loved your mother--all means of "thickening the plot" of the fuller story of her life as it was woven together with yours. Pushing back against the dominance of the illness-saturated story can be a conscious strategy, essentially winning back, with the help of others, the makings of positive memories rather than memories saturated with only guilt and pain.

     You also raise the question of medication, which might indeed be appropriate for you given the complicated grief you describe. When effective, the right antidepressant should not so much stifle your feelings as free you a bit to have a broader range of feelings beyond sadness and anguish alone. However, medication, while sometimes helpful, rarely is a sufficient response to grief. It sounds like you have important "conversations" that need to take place with your mother, in which compassion and forgiveness needs to be extended on both sides. An AfterTalk correspondence, perhaps facilitated with your counselor, might represent a step in this direction.  --Dr. Neimeyer

       Robert A. Neimeyer, Ph.D., is Professor in the Department of Psychology, University of Memphis, where he also maintains an active clinical practice. Neimeyer also serves as Director of the Portland Institute for Loss and Transition, which offers training and certification in grief therapy.  
       Dr. Neimeyer has published 30 books and authored nearly 500 articles and book chapters. He has served as President of the Association for Death Education and Counseling (ADEC), and Chair of the International Work Group for Death, Dying & Bereavement. In recognition of his  contributions, he has been granted the Eminent Faculty Award by the University of Memphis, made a Fellow of the Clinical Psychology Division of the American Psychological Association, and given Lifetime Achievement Awards by both the Association for Death Education and Counseling and the International Network on Personal Meaning.
Thanks to  After Talk  for sharing Dr. Neimeyer's Q&A segments.

   Hellen Pollizi has been an attentive caregiver to her mother for over 28 years. After her mom had a stroke, Pollizi and her two young daughters moved across the country to take care of her. When her husband's Army duty required another move, the dutiful daughter and only child drove two hours each way to visit her mom on weekends.

   Last year, the  Kansas City human relations specialist realized her 90-year-old mother needed more care; she's now in assisted living nearby. Pollizi, now a widow, visits six nights a week. "I don't do what I do out of love, but out of guilt," she says.  Her mother has accused her of wanting to "put her away" and more. "She has hurled so many hurtful comments at me. I am always in the giving mode and never in the receiving mode," says Pollizi.  Over the years, Pollizi has felt  torn between her own family's needs and her mother's. When her daughters were young and would ask to do something fun with her on weekends, Pollizi would tell them "no" because of caregiving needs:
"Society tell us to 'do more, do better, push your feelings down.'
Yet research [says] the more we reject our pain, the more pain we
feel. So let's not fight guilt."

   Most family caregivers know those pangs. You think you don't do enough for your parent or you don't do it well enough; you don't want to do it or doing it keeps you from something else. You regret how you've handled a situation, you can't fix your parent or the issue, or, a source of great angst, you wish caregiving would just be over.

   Patricia Farrell, the author of " How to Be Your Own Therapist" and a New Jersey clinical psychologist, says, "Guilt is normal. The thing to do is to understand where your guilt is coming from and if it is justified." But she also advises family caregivers, "Be brutally honest with yourself." Perhaps you need to talk with your parent or sibling to explain your side of the issue. Perhaps you need to change the way you are doing something.  Evelyn Goldstein, a  Silver Spring, Maryland, social worker, believes guilt can be valuable. Goldstein says, "The real question is, what can I learn from my feelings? You have to come to accept them, determine what you are able to control, and not take on more than you can handle."
How to Get a Grip On Guilt

   Guilt may be inevitable, at least for most caregivers, but  this emotion does not need to consume you. Here are some ways to mitigate or make peace with these thoughts:

   1. Be kind to yourself.

       "Society tells us to 'do more, do better, push your feelings down,'" says Jennifer Diamond,  Oakland, California, family and marriage therapist. "Yet psychology research tells a different story. The more we reject our pain, the more pain we feel. So let's not fight guilt. Let it be a signal to take a moment to breathe, to feel self-compassion. Can we allow ourselves to feel the heartbreak of this role reversal?" Learn relaxation breathing to help when you are stressed. There are videos on YouTube that will tell you how to do it. Kristin Neff, clinical psychologist and University of Texas at Austin professor, has meditation exercises gleaned from her research to help foster self-compassion.
   2. Nurture a support system.

       It's important to talk about and validate your feeling of guilt. It might be a  caregiver support group, a close friend or fellow churchgoers. Other caregivers wrestle with these same thoughts, and they might also have resources and strategies to share.

       One family member often gets the brunt of the job. If you have siblings who can help but don't, it's time to change that dynamic. Perhaps they can handle finances long-distance and be actively involved in other ways to ease your load. Insist they pick up the slack!

"Did you fail to do something because you were being selfish
or was it a request you couldn't fulfill because of circumstances
beyond your control?"
   3. Take a break.

       Ever heard of respite care? Have someone else stay or visit Dad--a professional, relative, sibling, close friend--or take him to a place equipped for short stays. If that's not feasible, slotting time for yourself to do whatever relaxes you, such as going for a walk or reading a magazine, let's say. "You need to  get some distance between you and the guilt, to recharge your batteries and gain perspective as to what might truly be going on," says Farrell. "Is your parent using guilt as a weapon? Are you a pushover? Time to change that pronto! If you burn yourself out, it will not be helpful to your parents and will create resentment."

   4. Practice the word "no."

       Set boundaries so that your parent's expectations are reasonable.  As Goldstein suggests, "L earn how to set limits and to tolerate those guilty feelings. Manage those emotions and you won't deplete yourself."
   5. Reframe the problem.

       Do you feel guilty that you don't spend enough time with your parent or they're asking to see you more and you can't? Instead of focusing on the guilt and "shoulds," think about it this way: You only have limited time, so how can you make it quality time? How can you make it as good an experience as it can be?

       Iris Castro's mother passed away at age 74 after 14 years of early-onset Alzheimer's. "My mother was my best friend. I wish I could have cared for her at home until the end, but I didn't have the financial resources and needed to work to support us," says Castro, a 40-year-old social worker from  Springfield, Massachusetts. "My conscience nags at me at night when I am trying to sleep. Guilt was always there and still is." Farrell suggests caregivers ask themselves, "Did you fail to do something because you were being selfish or was it a request you couldn't fulfill because of circumstances beyond your control?"  
   6. Think ahead.

       Consider how you will feel when your parents are gone. What do you need to do to be at peace with yourself? Then  let that be your guide.
Marlo, Tanner and Casey
Marlo Gottfurcht Longstreet Pens Book After Losing Son to Cancer
Marlo Gottfurcht Longstreet's life changed overnight when her 10-year-old son Tanner was diagnosed with brain cancer. After countless tests and seeing a specialist who saw what no one else did, she was told that, apart from the glioblastoma brain tumor, Tanner carried a hereditary cancer gene known as the mutant p53. Longstreet's daughter Casey was found to also carry the gene and has an over 90 percent chance of developing cancer. 

When Tanner passed away at age 11, Longstreet, a Palisadian writer, turned her attention to making sure her daughter stayed healthy (as Longstreet says, "I lost one child and will not lose another."), while also self-publishing her book "Rainbow Around the Son," detailing the grueling process of losing her son to the deadly disease.

"[Writing] was a very therapeutic way for me to get through everything, but also to document and remember every day," Longstreet said in an interview with the Palisadian-Post. "The big things, the little things....very simple things that a parent whose child is dying wants to remember." 

It took Longstreet three years to complete her book that holds no punches. Giving a vivid and raw account of what she went through, she said "When it was hard to write, I stopped." "Sometimes I'd take a month off, sometimes two months. Sometimes I'd work for a week straight. I listened to my emotions and my body and my feelings, and I did what was best to get me through it and to tell the best story."

In addition to her book, Longstreet and her father started the Tanner Project Foundation, in the name of her son--an organization focused on monitoring individuals for very early signs of predisposed hereditary diseases. But unlike most nonprofits, Longstreet said they are not interested in fundraisers. "My dad and I do all our work together, and it's important to help as many people as I can by sharing my story."
Longstreet has spoken at countless galas, cancer foundation events, and made appearances on popular talk shows. "Everything was great in our family, and what happened to us could happen to anyone," Longstreet said.

Casey, Longstreet's daughter, thankfully remains healthy and is very happy in her second year of college. In May, it will be six years since Tanner passed away. As a parent who has lost a child and is now an empty nester when she wasn't supposed to be, Longstreet continues to take it one day at a time. "Whether we like it or not, life goes on. You do your best to adjust to what will always be the 'new normal.'  We allow ourselves to grieve and cry, yet we also know it's okay to laugh and smile. Tanner made an impact on so many--in life and in death--and his memory will live on always."

  "Rainbow Around The Son" is available online at Amazon and other book retailers.

Calling All Children,
Teens  and Families!
Oh no! What happened
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