Setbacks

[LindaKate]

This is my 4th month of grief and a major setback..more raw pain and sadness than ever. I hope it is OK to tell my grief story here in hopes that you could share how you got through.

I wonder if any of you lost your entire dreams for retirement and how you dealt with it? My husband Bill and I met our dream of owning a small retirement condo in the western state we love 4 years ago. 11 months later Bill was diagnosed with pancreatic cancer and the nightmare...’Hope is given..Hope is taken away’ roller coaster began. We fought most of cancer battles in the west..far away from our home state and family house of 30 years. Treatment was much better and there were promising clinical trials. For 3 years I wrapped my life around Bill’s. I joined the pancreatic cancer action network and became his relentless medical and quality-of-life advocate every minute of every day as Bill endured surgery, then chemo, radiation, more chemo with more adverse effects. Thanks to our outstanding cancer team I kept my promise to Bill that his symptoms and pain would be well controlled. To celebrate his first ‘cancer free’ report we bought a new truck and traveled the beautiful back roads day trips. 3 years later in the midst of a promising clinical trial he became very ill and a cat scan confirmed the cancer was “everywhere”. Thank you forever to HOV I kept my second promise to Bill..he passed in my arms in our condo. Now 4 months later I am back in MI trying to take care of our house. For memorial day I went to the cemetery and fell to my knees sobbing seeing his gravestone for the first time. I’ve been back 4 times this week. I weep as I flash back over the past 3 years. I hope putting my story in words will stop the mental replays. Am I going crazy? How did any of you this? Thank you. Lindakate

[mfh]

Dear LindaKate, First, I am so sorry for your loss. It is the most gut wrenching thing I have ever experience and I have wept at Bill's grave many times in three years. We get through it by doing one day at a time. If I look ahead too far, it does not work. I get up, put my feet on the floor and do the day. I grieved and am grieving this loss and always will but though I never thought I would believe it, I have better days now and believe they will get easier in time. I have wailed and wept and journaled and wailed and wept some more.

Your story sounds similar to mine. I am 73 years old and Bill was buried the day before my 70th birthday. We retired from clinical practices (psychology) in 2000 and hit the road in a lovely RV. In 2002 the stock market crash led to a large loss of our retirement funds so we came off the road and returned to Wisconsin to go back to work for a while. But in 2003 Bill became symptomatic with Alzheimer symptoms. He never saw clients again but I did while he managed the house. By 2005 he was becoming less capable of doing that so I moved my office to a home office and continued a small practice as I took care of Bill and published a small local magazine that he and I thought would be fun to do together. I took care of Bill and he died in my arms on March 27, 2010. Our dreams were to go to Alaska in that RV and do the west and then travel some more mostly to European countries that we had not yet seen as well as mostly enjoying the love we shared so deeply. It felt like we both waited years for each other and that our dreams were cut short. I have come to know that in spite of his premature death (in my books) we had something rare that most never have. His death tore me apart...shredded me and it is a long journey through the grief, one that I am still on. I started seeing a couple of clients again last fall, sold the magazine and am now trying to take care of myself and recover from the caregiving exhaustion and the exhaustion of keeping too busy these past three years. I thought because I am a psychotherapist I could do this grief journey perfectly. But I never really knew grief until this loss in spite of many losses of significant people and in spite of walking through grief with many clients over 40 years. When the loss is this close...it is a whole new ball game....and I struck out initially but am with the help of so many people here and friends around me at home...I AM doing this. You will also.

I am happy to answer questions if you have any. Do keep coming here. It is an incredibly helpful group. Mary

[LindaKate]

Oh Mary

Your story deeply touched me. And I'm so sorry for your loss of your Bill. Thank you so much for your post and sharing your story. Yes how many similarities. I'm a clinical nurse specialist with a MSN in psych nursing, certified in end-of-life care. My primary work was in advanced dementia units so I know how exhausting your caregiver role was. We worried alot about our patients family caregivers and tried to ease their CG load. So long and often lonely. Please Please continue to take extra good care of yourself. I thought my education and experience would help me in the grief journey and like you I found nothing could prepare me for the excruciating--the words you used gut wrenching and shredded are the best description. I literally landed in ICU 2 months after my Bill's death..with an extensive GI bleed. It took days in ICU and 7 units of blood to get me stabilized. I'm still feeling the effects. Thank you for the reminder of one day to get through..that is a big problem for me. Your post comforted me more than you can know. Coming back to the forum is too often a lapse for me. I'm trying hard to change that instead of isolating myself. Thank you for giving me hope. Lindakate

[mfh]

Oh Mary

Your story deeply touched me. And I'm so sorry for your loss of your Bill. Thank you so much for your post and sharing your story. Yes how many similarities. I'm a clinical nurse specialist with a MSN in psych nursing, certified in end-of-life care. My primary work was in advanced dementia units so I know how exhausting your caregiver role was. We worried alot about our patients family caregivers and tried to ease their CG load. So long and often lonely. Please Please continue to take extra good care of yourself. I thought my education and experience would help me in the grief journey and like you I found nothing could prepare me for the excruciating--the words you used gut wrenching and shredded are the best description. I literally landed in ICU 2 months after my Bill's death..with an extensive GI bleed. It took days in ICU and 7 units of blood to get me stabilized. I'm still feeling the effects. Thank you for the reminder of one day to get through..that is a big problem for me. Your post comforted me more than you can know. Coming back to the forum is too often a lapse for me. I'm trying hard to change that instead of isolating myself. Thank you for giving me hope. Lindakate

Wow, Lindakate, our stories do parallel quite a bit. Thank yo for your kind words. I am now taking care of myself. I journaled this a few days ago as I was looking at my exhaustion.

"The day after Bill died, my publication had to be picked up at the printer and 3000 copies had to be distributed to 130 sites in 8 towns. A job Bill and I did together. Friends jumped in and did it but I had to prepare for that with lists etc. Every month until last September (i.e. 2.5 years) I put a 20-24 page magazine together, interviewed featured people, sold ads, did the layout, and with help from friends distributed 3,000 copies. Toss that in with my fear of being left out of everyone's life...and it was 3 years of escape, distractions, and more in addition to reading about 40 books on grief, hundreds of articles, crying daily sometimes for hours, journaling etc. Little did I sit and watch the grass grow as Bill and I so loved to do and which over the 5 years of caregiving got lost also. I also had pneumonia twice for 6 weeks each at least, fell and broke two fingers in a cast for 8 weeks on my left hand (I am left handed), tore my rotator cuff and was in PT and pain for months, had the flu three times...on and on it went. Hence my desperate need to STOP, heal, and find myself again NOW. A lot of my grief work has been delayed...not all for I have worked hard but I am attempting here to describe how pathological these 3 years have been...of my own making, of course. Couple that with a lifetime of being on the go....even living on the road in an RV. Now up until Bill got sick, we had a LOT of "just being" in our days...we walked the beach daily for hours sometimes, hiked, meditated, prayed, watched the grass grow, wrote poetry, listened to Mahler in each other's arms...so we had a nice blend but once he got sick all the relaxing things got lost....as I went into caregiver mode, published a magazine, saw clients each week in Madison and at home and ran the house." Ask me if I was nuts?

I share this in hopes you will not replicate my journey...and instead take really really good care of yourself now. Your ICU trip and the bleeding incident are red flags, of course. You know that. You and I as women are natural caregivers. As therapist and nurse, we also are professional caregivers. And we caregivers are notorious for caring for everyone else. IT is your turn now and sadly you are the caregiver for yourself but do let us walk with you. I urge you to look at self care seriously. Do not repeat what i did. I hope to see you here again. Peace to your heart in these sad and difficult days, Mary

[kayc]

LindaKate,

Honestly, I don't know how any of us have survived this...gut wrenching aptly describes it. So does excruciating. If anyone would have told me eight years ago I'd survive this, I wouldn't have believed it possible. One hour turned into a day, a day into months, then years...just putting one foot in front of another and doing what I had to do at the moment. Experiencing the pain, crying the tears, missing him. Sometimes I didn't know what to do, how to handle it, but that doesn't stop our having to live it. I learned I can't circumvent it, there is no way to do grief but go straight through it, head on. It does get more bearable with time as we learn to adjust and cope. Being here has made all the difference in the world to me. When I have had hard places to go through, it has intensified my missing George...losing a job, going through my mom's Dementia, any heartbreak of any kind, losing an animal...they all have made me feel all the more keenly my loss of George, as it was him that bolstered me in life. I've learned to reach inside for him, for his words of comfort, his encouragement, his strength, and thus I continue to carry him with me.

[ShanN]

I'm so sorry

[LindaKate]

KayC, Mary Shan

Thank you for your posts and wise words. Being back at our family home alone for the first time I think I'm feeling what KayC described as suddenly everything is a worse loss. Bill is not here and is never going to drive down this driveway or walk in from the barn again. I will never see him again in this lifetime and it just hurts so much. Every time I try to a chore or anything around the house its so much more difficult or many not even physically possible. And Mary thanks for the reminder about warning signs I've got an appt with my doctor here this week. Did any of you go through a time when you were just so tired and yet couldn't sleep very well? I'm taking this whole week to slow down to rest and yet am so restless at night. I think the physical part of grief is as bad as the emotional pain. Thanks Mary, KayC and ShanN. I'm going to more reading here to remind myself that I am not alone and many others of you have gone thru this loss and survived. Lindakate

[MartyT]

You may find something here to help with that restlessness at night, LindaKate: Tips for Coping with Sleeplessness in Grief

♥

[mfh]

"Did any of you go through a time when you were just so tired and yet couldn't sleep very well? I'm taking this whole week to slow down to rest and yet am so restless at night. I think the physical part of grief is as bad as the emotional pain."

Dear LindaKate, About fatigue. First of all, grieving is exhausting. Our heads and hearts are at battle. We cry which is exhausting as it also heals. Our minds don't work so everything we do takes more energy. On and on and on....it is just depleting. I had many many nights when I could not sleep and of course that coupled with other things i was doing wrong, led to total exhaustion and illness. Your job is self care...that is your only job really. You will grieve...you just will. But your need to listen to your body is huge. If you can't sleep at night, take naps as often as you can. Read the article Marty posted. Yes, the physical drain is horrible. People do not understand that well. We all do. I hope you get some sleep...Do you meditate...I also use an iPod at night. I started using it when the tinnitus in my ears kept me awake. But then I started putting NPR programs on it and recently I put meditations and soft music on it to help relax me and the meditations distract me and off to la la land I go. You might consider that. Keep in touch. Mary

[Wifflesnook]

I'm still struggling with the tiredness. Even though I sleep fairly well I wake up tired. Partly it seems like a lack of motivation as well as a physical tiredness. I am almost 72 as well I suppose. I'm wondering if I will ever get back that liveliness I used to have. Or am I kidding myself that I had it in the first place? I know I was running on adrenalin when I was going back and fro to the hospital (over an hour driving each way) for five months) then caring for Pete at home, then after he died being with our daughter and new born and toddler and helping out. I think maybe I'm still, even now, suffering from that? I can rest when I'm not with daughter and I do, but I have to accept the new me maybe? The me who just has to keep still and rest a lot?

[kayc]

I'm sure you have a lot of resting up to do...maybe try some of the meditations Mary and Marty and Anne have posted on this site, it's good to be still and quiet and let your soul rest, when we are most depleted, you find it refreshing, then after a time, you come to feel you need/look forward to it.