Hi Everyone. I posted here a couple months ago after my husband's death. I have not responded to any of your kind comments as I have not been able to return to this forum to read them.
I am in the midst of a serious mental health crisis due to the stress of five years of my husband's illness and the trauma of his death--I have all the symptoms of PTSD. I am taking care of myself as best I can: I have supportive friends, a good therapist, and have begun medication for depression, but every day is a struggle with despair and heartbreak. Some days I live hour-to-hour, asking God to give me the strength to go on. I feel as if every circuit in my body and brain is fried to a crisp.
This is harder than I could ever have imagined. I understand why caregivers disappear from this forum--it is just too much. It's more than grief--it feels like it's the end of your life when you lose your life partner, especially after having watched him slowly die over years.
I am talking to my therapist about starting a support group for caregivers in my small community. I think it will help my healing to help others. I also want to return to this forum to see if I can offer my experiences, but I'm not ready yet--it's all too fresh and raw.
The fact is that unless a person has a LOT of money OR a very close and supportive family, there is pretty much zero support for at-home caregivers. It's extremely isolating and traumatic. It shouldn't be this way, but it is.
Sending love and prayers to all who are feeling alone and overwhelmed in their struggle to care for their loved one. 🙏💖🌟
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WildRose6
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So sorry that this disease did this to you and your husband. Must seem very unfair and I can imagine the difficulty of returning and in a way reliving it over and over again. I do agree your experience could help others so please don't isolate. Your input and posts will always be welcome here and if you can get something together in your community to help in your healing and others what a wonderful thing that could be. Please stay in touch we are all rooting for you to find peace and improved mental health.
Thank you for sharing your experience. I remember how devastated my mother was after caring for my sick father for so many years. There is a forum now for caregivers if you are interested:
Tall_Allen I took a look at that forum--it's not very active.
I have noticed over the years that a lot of people posting here are spouses/children/grandchildren of the person with PCa. Personally I came here for info on treatments, managing SEs, etc--I had not one iota of extra energy to join another forum. If I could have seen more posts on the topic of caregiving right here that would have been really helpful.
We're partners in this disease. I don't think that walling us off in a separate forum is the answer. A big part of caregiving--maybe the biggest--is the sense that my life is on hold. It's very difficult to talk about the burdens of caregiving with the person who we are caring for, so it's far too easy to just shut down and bear it.
This creates a wall that I feel we need to breach. I think our loved ones would benefit from understanding more of what happens on "the other side," and I suspect that it would make it easier for the men to share their own challenges and fears instead of feeling like they need to "Stay Strong" at every moment.
I would like to see a topic on Caregiving integrated into this forum. We caregivers need to feel more included, not more isolated.
You’re right-my life feels like it’s on hold sometimes. It can be very isolating and not everyone understands how difficult it can be. And I know the hardest days are ahead of us. Take comfort in the fact that you you provided such good care for your husband when he needed you most.
Dear sweet Wildrose6…. I live in Prescott Az with my sweet wife . We have over six years in fighting this pc together .. you speak so much direct truth . I appreciate it . I can only speak for myself as a guy that got married for the first time at 53 with tubes and a foley under my suit . She said yes . Without here there would be no me . You loved and cared for him as he declined and perished . The same will happen to each married man here also . I am pulling for you to retrieve happiness in life and recover from a brutal battle .. I do not want my pc life to ruin my wife’s future hope of happiness . If I do that . It would be my greatest sin . Bad emotions ptsd of this disease is real every day for many of us.. But . You must forgive yourself . You loved and did all that you could . NOW you’re still here . Your life and happiness are important . But you are not alone .. every one of us that must leave our loved ones to live their lives after we perish feel your pain . IMO this cite is as much for the sons and daughters but especially the spouses or partners of the afflicted . You all must deal with this brutal disease . Ive been here on this cite for over three years . You are correct ..it’s a lot to take in on a regular basis ..many here are just here for medical advice . I’m here to try to consol you .. Our door is open to you . Jump in your car or catch a plane to us. We can rehab you . Feed you fresh organic food .walk in nature daily . No cult like activity here . A place to come for a a few weeks to prop you back up to face and chase the darkness away .. you can find happiness again . It is essential that you and all wifes live on in harmony . I’m serious with this offer . Private chat me up if you want? Just to talk? And if not? Stay strong . A light will shine on you . Be open to it when it comes . God bless you 🙏. Scott & Sherry ,spectacular weather here right now . But the offer is always open . Every one needs someone to talk to in times like these . ❤️❤️❤️🕊🕊.
Wow, Lulu, what a compassionate and loving offer! I am sticking close to home for now but I am thinking of traveling some next year. Need to clear my head... I may just call you
Thank you .. Anytime! Open offer . She does reiki healing ,spiritually on track . I’ll give you my number on Private chat . I don’t want you suffering alone . That is baloney! ❤️❤️❤️❤️❤️
Your compassion and generosity, and that of Sherry, is so beautiful and inspiring, Scott. Thank you for being who you are. Much love and admiration. Paul
Very kind , Thank you . Next time that you kids pass through ,please hang out here to enjoy our view? I enjoyed your post of gold filled cracked vessels formed into optimism for the broken . Profound !
Dear wildrose...please reach out here whenever you need! I've been following your posts and your heartbreaking journey. I know how hard it must be to open up this site but please know that whenever you can, we are all here to listen and comfort and understand. I also belong to the caregiver site and agree with you and wish it were more active. I believe that there is a great need. I'm not sure if this would be of interest to you, but there's a Facebook group - Women Affected by Stage 4 Cancer. It's a womans only group. There are women there that are struggling with caregiving at all levels, along with those who are struggling with the loss of their love and partner.
I'm glad that you're reaching out. Please keep doing that. We're here for you. Realize that there will be days that your biggest accomplishment will be getting out of bed. And that's ok. Be patient with yourself and acknowledge the wonderful gift you gave your husband by being there so completely for him. I'm sure the void you feel is huge. Try to fill it as best you can with doing something nice for yourself. I know that some day I'm going to need to hear this same stuff. I'm dreading that day. I know it will be hard. And isolating and traumatic. I will be reaching out to you.
You will be in my prayers for strength and comfort. Take really good care of yourself.
Your heartbreaking post makes me feel such anguish for the way I failed my poor wife when she was sick (and died) from cancer years ago. I allowed myself to take refuge in that old stereotype of men not being caretakers. I wonder how many men are on the breast cancer forums desperately searching for information on their wives' disease. Yet we don't hesitate to assume our wives will care for us and tiptoe around our wounded masculinity.
You went through this as much as your husband, and what a strong and loving person you are. I think you need to accept that you were hurt severely, and it is going to take time for you to heal. Try to get outdoors in nature every day, even for a few minutes. It is very healing. Nourish yourself with good food and music to reawaken your senses, which have likely closed down to anything pleasant. Be patient. It takes time to heal. It is enough for now to simple get through the day - that is success. Have confidence that your body and mind will heal. I wish you the best - you deserve it.
There is a great need for support of caregivers as you will note in the dedicated forum listed in HealthUnlocked. Also for grieving support groups. My church offers several.
Try exercise. It will be hard to begin but do begin. Even walking can help. Get out the house. Get your heart beating and lungs working. There is nothing easy about a significant loss.
I am so glad that you posted. You are and will always be a loved member here. Post as often as you need to.
It sounds as if you are have made some good contacts. Be careful of the meds. Don't let them become permanent.
The care and support you gave your husband was indeed heroic. Heroes and heroines need time to recover and restore themselves too.
If you are on Facebook, the founder of our group "Woman Affected by Stage 4 Prostate Cancer" formed a widow's group when her husband passed away. Here's the link: facebook.com/groups/5073963...
I applaud you, your words and for letting out every iota of feelings that I too have felt and gone through. It’s been 2.5 years since my husband passed add on the 1.5 years before with caregiving and I’m still recovering from the loss of everything and caregiver trauma. Exhausted is all I feel.
Thank you for feeling you could reach out to this group, it was part of all of us and was my “only family” then and now.
Thank you for your post. I'm sorry you're struggling so much. It's so hard and so exhausting and lonely. I've been supporting my husband in this PC battle for 20 years. The last 3 years I feel exactly like you said: my life is on hold. He doesn't understand and asks me Why are you so tired? The less he's able to do, the more I take on. All the treatments have now failed and I know the worst is still to come. God bless you for wanting to help others. We surely need it!
I lost my first wife to Mesothelioma after a prolonged battle. I to had a battle with grief for a while. We all handle these things differently but the pain and suffering of the care giver is every bit as real as the one with the disease. I think you are on the right track in your quest to assist others. There is a great need. I also known personally that the good lord above and time can heal most of the hurt and leave the good memories in your heart.
I am now the one battling the disease but my dear mate ( second wife) is there every step. May god in heaven bless the care givers! There value is beyond words.
I pray gods healing hand will continue with you and that he will bless your efforts.
First of all I want to offer my condolences on the passing of dear husband "Stephen ErnestAdams, on July 6, 2021.
I think it's a good idea to chill and post here as often as you wish. We also need caregivers to give us care, especially a wonderful one like you. Laugh as much as you can.... Take care and...... we shall be your caretaker.
Thank you all for your kind words and loving prayers. People who haven't lived through something like what we live with every day have a hard time understanding. The utter, grinding fatigue that never really goes away... the thoughts we can never really banish from our minds.
I will carry your love with me this evening and I know it will help me find peace.
Your PTSD, your grief and your suffering is a testament to your loving heart and the care you so selflessly gave. It is to be honored even as it is to be healed, but not forgotten nor denied. To that I bow. May your healing of that brokenness be sealed with gold, not hidden but honored. 🙏💞
Just want to mention that it was you, WildRose6, that inspired me to write my post on "Healing our own brokenness with gold".healthunlocked.com/advanced...
I discovered today sisterhoodofwidows.com with “grief to healing” resources section and site has free electronic access to the book of same name. There’s a blog and a section on widow stories. Not specific to the caregiver or pca scenarios but may be a helpful tool in recovery process someday for some of the widows whose spouses had been members of this group.
Sending all my love and prayers to you WildRose6. While we all go through the same disease and various levels of caregiving, all of our experiences are truly unique. You spent so long taking care of your husband, whom you loved very deeply, that it only makes sense to be going through so much PTSD. Be kind to yourself and don't rush yourself. You are doing all the right things to take care of yourself now and I pray that with time you will heal. Your previous posts and experience helped me greatly in looking into the right medications and palliative care routine for my dad. It may be hard to use this forum now, but please reach out if you need anything.
Struggle is right WildRose. No one can get through care giving especially a spouse without painful experiences . Each partner ,wife and caregiver knows you speak the truth. This is a brutal disease to all loved ones . Maybe more so than the guys inflicted is the harsh path of suffering for you all. We have this you don’t. But you suffer it all . This truly is the highest love.. IMO Thanks for speaking the truth. Be kind to self always. You’ve been through hell . Now healing must come. Best wishes ..Scott ❤️😩
Caregiver here 2x - Husband has advanced PC and my younger sister just passed away from Pancreatic cancer at the age of 52. Not how we thought we would spend our lives for sure. It's horrible not being able to live the way we thought we would. We decided to live in the moment and be thankful for for what we have and right now, it's each other. ♥️♥️
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