My last post was March 27, 2024. "Live in your Light even when there is darkness"......
Today I would like to share my ambiguous grief------grieving someone who is still alive-----my husband. If it's not too much to ask, would you help me by sharing your words and thoughts with me about grief? Kubler-Ross models the five stages of grief as: denial, anger, bargaining depression and acceptance. Wikipedia postulates grief as any physical, emotional, social, spiritual and cognitive loss--not always death----but may be any life--altering loss. For me its heavy intimidating and hurts.
My husband and I used to go the Gulf of Mexico and Sanibel each year. Since we live in Florida it was only a 2 1/2 hour drive. Now with his PC which gas spread to his bones, lungs and lymph nodes, He doesn't have the energy or desire to go anywhere. For me, I don't choose to go alone without him, so I have started walking and dancing in our house (as it is too hot to be outside even in the morning. It was 94 yesterday at 7 am)., but winter is wonderful here. I also do yoga and practice mindfulness. Thank you for letting me express my grief,
"Grief is like the ocean; it comes in waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim" by Vicki Harrison
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Lrv44221
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I know exactly how you feel. Same for me . It's an up down roller coaster ride. For me I pray a lot and just try to take it one day at a time. And be gratefull for each day . Support from members here goes a long way .
Ty i have been praying and looking for a church. The one i used to go to became all about money and not helping people but im sure I will find a new church
i see in your bio the you love animals. Please go to animal shelter and rescue a poor doggy that is locked up for life unless rescued. They provide so much love and appreciation. Plus they exchange oxytocin pheromones with our brains which is a feel good bonding hormone.
we have had three rescue dogs and one cat all rescued our last rescue died last year and for us at our age and health, we don’t think we will do any met animals they were our fur babies but I m glad you too love animals
I am a 71 year old that was diagnosed with prostate cancer 3 years ago. It was high grade (G8) and intially thought to be confined to the prostate after RP. Not to be. Found out I had a met to my T spine and a positive node in my pelvis. So, stage 4 cancer. Hard to type it. Hard to accept it. I have had aggressive therapy by excellent MO at Johns Hopkins and currently have undetectable PSA off all meds including ADT.
I had a wonderful sex life for years with my wife. No more. Complete ED and penile shrinkage due to surgery and ADT. Future uncertain after working my entire life and just retired. Fatigue easily. Depression treated with medication. But life goes on.
I have gone through the stages and I believe I am at acceptance. I have had a good life but not ready to pack it in. It realize God is a personal belief but I have found solace in believing in God. There is more to me than a physical body. Being a scientist and studying the Universe and life I come to no other conclusion but that it was designed by an infinite intelligence.
I wish you and your husband happiness and joy in whatever time you have together.
It’s so hard for me grieving and when people like yourself reply it helps me. I understand exactly about going through stages. For me I am grateful for so many things and i try to b journal most days and it actually helps me lol
Ty again for your thoughts. It really helps to share our disappointments with others in here. The warriors and caregivers in here have been so supportive and kind like yourself 💜💜💜
Lrv44221 wrote -- " ... We live in Florida and it’s very hot 🥵 now I'm healing Lrv "
96°F is our lanai temp. right now here in *It's soooo gooood in Englewood, Fl.* We have the house AC set at a cool 82°F and just chilling out.
When others are not directly across from us to talk to, communication via cyberspace can be very comforting.
Lrv44221 wrote -- " ...now I'm healing ... " >> I am hoping you realize that there are many here and elsewhere willing to help you on your journey. Be well.
like you, I’ve experienced anticipatory grief. We ‘be been on this journey now for 11years. It’s been a roller coaster of ups and downs, joys and pain, blessings and grief. My doctor says this situation is harder on the caretaker than the patient. It has definitely taken a toll on me. My previously active, athletic husband really doesn’t want to do anything. I still have a sense of adventure and am fortunate that he is well enough to care for himself and that I have good friends to walk with and take short trips. Joining a yoga studio and a caregiver group have helped me. My heart goes out to all the caregivers here as well as the men who are in this fight.
My husband doesn’t want to do anything either . I walk alone as the others have died or moved. There’s a yoga studio about 30 minutes from here but i take out my mat and do it here at home. I’m trying to find a caregiver group but so far one is not available
I have found Careblazers, an online caregiving group run by gerontologist, to be a very useful resource. Dr. Natali offers much free advice and while it is focused on dementia (also an issue in my husband's case) it is very useful to all caregivers. She has a group that you can join for money, but I haven't done that.
Thank you for this topic and sharing what works for you. I learned a new phrase “anticipatory grief “ on this journey with my husband. I grieve the loss of the life we had, while anticipating the losses that will come. I hate seeing him suffer the effects of the surgery and medications. I miss our sex life. I hate that our calendar is full of doctor appointments. Then I remind myself we could get hit by a bus tomorrow , and it is best to work to stay in this 24 hours. Life has no guarantees, but I have learned we can “learn to swim” in choppy waters. Acceptance, gratitude for what is, and leaning into the pain allows me to float with the currents. I find solace in nature, practice good self care, walking, puttering with plants and in the gardens, watching our animals, prayer and meditation, being with family and friends as we are able, reading this column. We start our day on the front porch with our coffee looking at the mountains. Little things have become more precious. I believe we are eternal spirits having a human experience, and more will be revealed. Peace and grace for us all today as we journey along together.
We are in southwest New Mexico in the Big Burro Mountains in the Gila National forest. We used to live in Fort Myers and were 15 mins from Sanibel/Captiva causeway. I love those little islands! Just a magical place. Still have a daughter in Fort Myers, and my mom and sister in Jacksonville, so will visit Florida as we can.
I also have and continue to suffer anticipatory grief - I found out that this overwhelming grief has a name just a few days ago. I also find some solace in knowing that it is a rather normal response. And like you I grieve the energetic, loving man I married. I also have found ways to combat it - walking each morning, gardening, meditation and yoga and tai chi.
I really feel for you and realise the challenges and possible losses in being a relative and/or caregiver. I can also see and feel the vicious cirkle of "not wanting to do anything" as a possible sign of depression but also a depression driver. Being passive drives depression. So how hard it might be, I think staying active as far as possible is so important for the man and for everyone around. Keep doing things (exercise is mandatory). Easy said, I know. But I think this about mood and depression and activity as a countermeasure is a life lesson for me. But everyone is different and I am not an expert of anything. It really is hard sometimes.
I've had a few "grief events" since we started this journey in 2014 - initial diagnosis and surgery ("can it wait until summer?" "No."), almost a year later discovering the surgery and radiation didn't contain it, primary and secondary ADT failure 18 months ago. Each of those triggered a heart process of coming to terms with a new reality. I'm grateful for an awareness of God's presense in all of it, and a hope that outlasts us. I find that those initial shocks were hard and painful, but the sting of it lessened with time and with processing it with caring people. There are more to come, but we will be able to endure those as well.
i am in the same boat with my fathers PC. It's difficult on the body to handle such prolonged grief/stress ...now my health is taking a dip, after a few years of this awful rollercoaster
Lvr, check with your oncology group-they may have a caregiver /support group. Ours is run by the palliative care nurse. I found an online group with a very sharp and compassionate social worker who works through our local hospital. I wasn’t sure if like the online format, but I’ve found it to be helpful. We have met in person several times. A lot depends on the facilitator.. i believe you’ll find something if you keep looking. It has helped me.
My first inclination when faced with my diagnosis was anger, angry at the urologist who had proclaimed that I had BPH and was unconcerned for 2years while the cancer metastasized.
I felt that due to his neglect, that in essence he killed me.
Coinciding with anger was the strong urge to survive.
Metastasized to local lymph’s and one para aortic node.
Treatment was RAPL, ADT + Abiraterone followed by 38 RT (curative) sessions.
Currently, no diagnostically measurable cancer.
At 61, wife and I were very sexual active, loss of the prostate was akin to losing part of my soul.
Even before ADT, I would cry for hours, I was inconsolable… then, after 2 months post surgery, I started sexual rehabilitation, first with daily low dose cialis and pump… then with tri-mix after consult with Dr Mulhall at MSK.
Being able to participate in a possible positive outcome in this darkest of times gave me hope and a path to what is somewhat normal.
This took the edge off of my grief and moved me towards acceptance.
I am not afraid of dying, dying is easy… lived with that spector most of my life.
Being madly in love with my wife since HS, my biggest fear when I learned of my situation was my wedding vows… “until death do us part”
This kept coming up in my thoughts and was unacceptable to me, that, our commitment to each other would pass once one of us was “no longer”
After about 2 days, I talked with my wife…
Listen, I can’t die in peace knowing your love for me is released after my death… she was horrified when I explained my conundrum… and she stopped that quickly, she said our love was eternal and will always be. This put me at ease as I felt the same.
In all of this, my grief has been set aside with the understanding that
Cancer can only destroy our bodies.
It cannot destroy the love we give or, recieve.
It cannot erase what we achieved/accomplished in life.
And although I may perish, my family and legacy will live on.
Solace in having lived a full and complete life remaining grateful for what I have as others have had much, much less.
Mindfulness didn’t help me, physical activity is a must… I force myself out and hike 4-6 miles daily.
Lifting weights to keep tone.
Inertia must be overcome to offset lethargy
It was a force of my will to feel better that enabled this. This gives a positive feeling in that you are participating actively in feeling better.
Not just physically but psychologically as well.
Hope this helps a bit.
Occasionally, the grief comes back, but is diminished.
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