tag:blogger.com,1999:blog-694544587099662654.post9159988071519202435..comments2022-12-30T00:06:31.929-08:00Comments on Caregiver Wellness Workshops: Chronic Sorrow I: What it Is & Who is Affected ...Jan Spilman, MEd, RCC Compassion Fatigue Specialisthttp://www.blogger.com/profile/10993602062514617161noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-694544587099662654.post-15128082932869337872012-10-28T06:45:09.652-07:002012-10-28T06:45:09.652-07:00Thank you for putting a name on what lives at the ...Thank you for putting a name on what lives at the core of my being. My 40 year old son is schizophrenic, he has lived with me much of the time sometimes hospitalized (over 75 times), like now sometimes in a board and care home. Mental health care is minimal at best here in San Diego Ca, He has often been at risk - and i fear the police who are quick here to shoot unarmed mentally ill people, more than i fear criminals. Part of the time my son thinks i am an evil alien who stole his mother's body. He visits 1-2 weeks a month and mostly after repeated bouts of paranoia, he doesn't like me very much, quick to tell people i am not his real mother, and disturbed as he can be social workers and others involved in his care plainly chose to believe it and are reluctant to involve me in his care.<br />Few people understand how his lifelong continuing disability and unhappiness effect a person who loves a child deeply through it all.With all the medicine he doesn't get better. Thanks for speaking about the sadness that permeates celebrations, the grief for lost possibilities, the envy for people who have "normal" family times even if not perfect, lives that aren't so very limited. When a child is mentally disturbed there is a tendency to think the mother in some way failed, caused the condition or is somehow crazy too.<br />Thank you from Momma Bear aka squeaky wheelMISS FORTUNEhttps://www.blogger.com/profile/02295565346138455156noreply@blogger.comtag:blogger.com,1999:blog-694544587099662654.post-32356478801364075182012-01-21T16:50:22.007-08:002012-01-21T16:50:22.007-08:00Hi Karen, I'm sorry things are so hard right n...Hi Karen, I'm sorry things are so hard right now. The loss of your old relationship is a profoundly painful one. It sounds as though you're doing an amazing job supporting your husband but perhaps could use some support for yourself. We humans need support in order to grieve well. A grief /trauma therapist might be helpful. (I would ask him or her to read Susan Roos' book, Chronic Sorrow: A Living Loss.) Another good source of support for TBI spouses is Barbara Stadhura's website, Journal After Brain Injury. She's lived the journey you're walking and is a wise and compassionate mentor. Warm good wishes to you both as you learn to live this new life together, JanJan Spilman, MEd, RCC Compassion Fatigue Specialisthttps://www.blogger.com/profile/10993602062514617161noreply@blogger.comtag:blogger.com,1999:blog-694544587099662654.post-18871440025419676722012-01-21T11:52:58.431-08:002012-01-21T11:52:58.431-08:00My husband suffered a mTBI and has severe and pers...My husband suffered a mTBI and has severe and persistent PTSD from explosions in Afghanistan. Even though I've learned to talk more slowly, stop talking when there is too much noise (many times daily), not put pressure or stress on him, remind him of every little task of daily living, help him organize his thoughts/projects/space, the list goes on and on and on (he needs to have care 24/7)there are many times that I feel so alone. The man who was my partner, friend, and lover is not here. I don't really know yet how to have a new marriage. I am pretty much constantly fighting depressive behaviors as a way of coping with my loneliness.Karenhttps://www.blogger.com/profile/05475298110578487131noreply@blogger.comtag:blogger.com,1999:blog-694544587099662654.post-64100577428487273242012-01-19T10:31:47.097-08:002012-01-19T10:31:47.097-08:00Dear Lisa, Thank you for your honesty about an ext...Dear Lisa, Thank you for your honesty about an extraordinarily painful time. I think there is a difference between expecting ourselves to "accept" the totality of our circumstances and accepting the person of our loved one. We have a lifetime to do the former and most of us will continue to feel some pain and sadness from time to time throughout that lifetime. Every blessing to you and your family as you journey together, JanJan Spilman, MEd, RCC Compassion Fatigue Specialisthttps://www.blogger.com/profile/10993602062514617161noreply@blogger.comtag:blogger.com,1999:blog-694544587099662654.post-17397389741655751432012-01-19T07:35:39.837-08:002012-01-19T07:35:39.837-08:00Thank you so much for sharing this article. I know...Thank you so much for sharing this article. I know many hospice workers, home health nurses,children taking care of aging parents, and unfortunately more then I care to admit parents taking care of children that live with this daily sorrow. I will be sharing this with many friends, family, and workers.Sparkleshttps://www.blogger.com/profile/15965938467435857043noreply@blogger.comtag:blogger.com,1999:blog-694544587099662654.post-2352017075832369882012-01-18T20:29:01.937-08:002012-01-18T20:29:01.937-08:00A link to your article was posted on our (Military...A link to your article was posted on our (Military)Polytraumatic Injury Family Support Facebook page. I found myself devouring your words. Sometimes I feel so guilty that I can't just accept my son's "new normal" after his TBI, but it's just so hard. When he struggles, I struggle. I've been told that I should "just be grateful that we have him." Well of course I'm grateful for that! But it's nice to have permission to admit that sometimes it just HURTS. He can't remember if he ate an hour ago but he surely remembers being able to live on his own, to drive, to date, and to dream of a future with a wife and children. He's losing hope for that future and watching him bravely try to accept that is a bitter pill indeed. We laugh, we joke, and we have fun, but oh, how my heart aches. Thank you for helping me feel better about myself.Lisahttps://www.blogger.com/profile/17014041447642096831noreply@blogger.comtag:blogger.com,1999:blog-694544587099662654.post-61244825657513950142012-01-18T13:44:48.307-08:002012-01-18T13:44:48.307-08:00Hi Toni, Thanks for commenting. I hope that seeing...Hi Toni, Thanks for commenting. I hope that seeing yourself here will help you and your loved ones to understand this part of your emotional experience. Warm regards, JanJan Spilman, MEd, RCC Compassion Fatigue Specialisthttps://www.blogger.com/profile/10993602062514617161noreply@blogger.comtag:blogger.com,1999:blog-694544587099662654.post-32004478774557903542012-01-18T09:47:51.891-08:002012-01-18T09:47:51.891-08:00omg.....you just described me...my adult son has a...omg.....you just described me...my adult son has a severe tbitonihttps://www.blogger.com/profile/18107232129112318687noreply@blogger.com