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At THE POINT of the journey we all knew was coming but not ready .

Help. My wife, my love, my best friend is going to be taken from me. I am not ready. After nearly 4 years of watching her suffer, chemo after chemo, loss of hair, loss of energy, relationship issues, I am not ready. She is in a hospital room bed, the Dr said words that seemed muffled in my mind like in a cartoon ... her liver is causing her body to have an infection and if the anitbiotics don't help, well that's it not much more they can do. Then I tune in and say what ? i know this is not curable, and all that other preparing , but there has to be something that can be still looked at; a liver arterial injection of chemo or drug direct to the organ ? Buzzer by Dr.; how about second opinion reviews by other teams in toronto ? Buzzer by Dr; what about clinical trials, experimental options? BUZZZZ.. by Dr. I am not sure what to do, part of me wants to atleast look at other options but the Dr is so very difficult to talk to about options. So what do I do .. fight , advocate, or continue to go to the hospital room each day and watch her , talk to her, with precious minutes while nurses talk about how they are short staffed and did they try that new restaurant? I know many of you have been in my position, if you can please help me with your advice and thoughts, I am distraught and not sure what to do. I know she is scared and I am too. Why is it so hard to have a open dialogue with the Dr , instead of it being so adversarial.

10 Replies
Brighty
6271 Posts
Dear LANDSCAPERNF‍ I have been following your posts and I'm heartbroken for you. Yes,there are many others, myself included who have been there but thst does not diminish the anguish you are going through. It it terrifying, the prospect of losing the one you love. You never want to let go. You are in so much pain now. Please don't be alone. Do you have family members and friends to lean on? A councellor to express your feelings to? What are your wife's wishes now? I'm so sorry you are not comfortable with the doctor assigned to her. Can you get another one at thus point?
take this time to spend quality time with your wife. Reminisce about good times...play music she likes and look at old photo albums. Exchange recipes. ...tell funny stories together. Please take care of yourself too...eat sleep and exercise. You may want to journal your feelings, meditate or pray . But please don't be alone with your thoughts and feelings. Lean on others, lean on us...cry, scream..... hug your pet if you have one. I'm so sorry. You are not alone.. I promise. We are here. Big hugs.
Trillium
824 Posts
Dear LANDSCAPERNF‍ - I’m so sorry this is happening. Lean on your friends and family. We are here for you too.

Hugs
Trillium
K7698
32 Posts
Dear LANDSCAPERNF‍, I read some of your other posts, what a strong advocate and supporter you are for your wife!! My heart goes out to you, please look after yourself and continue to be strong. We are with you.
Kims1961
2002 Posts
LANDSCAPERNF‍ Your post is heartbreaking. When my mom died - we weren't ready either. The diagnosis came from an ER doctor, who had to rush off to another emergency. So detached...I wanted to shout - she's not just a patient - she's our mother.

In looking back, I wished we had spent more time with her, holding her hand, telling stories, sharing, rather than hopeful thinking that she was going to come home. But we weren't ready.

I wish we had spent more time talking to the palliative care team, than trying to hunt down that ER doctor, but we weren't ready.

Is your wife able to communicate to you? Do you have a sense what her wishes are? Some people want to do everything that is possible, others feel, they are tired. Maybe being able to ask her, even see if someone from the palliative team can help, in planning where you go from here. It does not mean, you give up hope, but rather, spend time while you have it, sharing with her. You are on a journey with her that is truly an honour. A chance to be at peace, together, surrounded in love.

Thank you for trusting us with your news. We are here. You are not alone. Kim
CentralAB
978 Posts
Hello LANDSCAPERNF‍ I am so sorry that you have reached this point in your caregiver journey of looking after your beloved wife. You have worked so hard, tirelessly to help her, to bless her, and your story has touched my heart. I have to confess to a few tears as some of your experience reminds me of my own. I looked after my wife for five years and right up until she died. The disagreement and frustration you expressed re hospital staff and doctors sounds all too familiar.

I found in my experience with my late wife, that the biggest source of satisfaction in such a terrible ordeal, that just being together was the only thing that really mattered.. I spent many hours at her bedside, just holding her hand, telling her I loved her, and recounting the many happy moments we had together. I talked about the really special times and thanked her for each thing I remembered. I also would use some lotion to giver her back rubs and skin care which they don't always do too often in hospital. It was a great comfort to her.

try to think of any little things you can do to help her find a little relief, and to still sense your love for her. When she could still talk, my wife told me near the end that she had never felt so loved. She thanked me, and apologized for not being able to stay and enjoy a few more years together. Dispense love, create memories. For these can be the light in your clouds. I wish you all the best, and that you can find the strength to carry on for as long as she needs you. Your loving labours for your wife are not un-noticed. Your example will help lead others through their loss and grief. Thank you for sharing this part of your journey with is. I really appreciate it. Please come back any time. We are here for you. - David
LANDSCAPERNF

That transported me back too. Kims1961‍ and CentralAB‍ have given some great advice. "Not ready" is a great description of the sense of the yawning chasm stretching in front of you. When the doctors told us that there was nothing more that they could do except make my wife comfortable, we had a few hard moments. I spoke to the doctor and got the prognosis - how things were going to go. She ahd a few things that she had wanted to happen before she died. She wanted to tell her mother herself. My brother in law made that happen. She wanted to see her estranged sister. I thought that wasn't going to happen but at the last minute it did.

Tears as I think of those moments and think of the challenges that you are facing. Our move to hospice was the best thing that happened. They knew how to talk to me, they knew how to manage her personal care, and though it was pre-pandemic they helped me manage all the people that wanted to visit. Different places have different rules but that was an important part of this last stage for us. In addition palliative care was able to give my wife back to me for a period. The pain killers had gotten out of control in the hospital leaving her in a drugged hallucinogenic state. Within hours they had switched it up and we actually had a few days that were drug free before the pain grew too great. Even then they managed it in such a way that I could spend time in memories with her. Precious time.

Thanks for allowing us to be here with you in these moments.

Angus
law
385 Posts
LANDSCAPERNF
After reading your most recent post, following reading your previous posts a while back, I have found a few words to express my feelings of support and courage for you. I have not been in your situation, nor have I been at the bedside of a spouse, but I am hurting and feel despair for you and her.
It is a relief to know you are supported by all the empathetic people on this site. They have felt your emotions and want to support you and your wife.
It must be frustrating and heartbreaking that life does not give you both endless opportunities; yet we all fight to survive nonetheless.
law
EVH
12 Posts
I’m on the receiving end of cancer, you just be with her and make sure she doesn’t hurt. Be strong, I’m crying right now as I write this. She needs to hear your voice saying not , “you’ll be alright, we will beat this”, no, let her know how much she means to you. On the cancer side we know what is going on and I don’t know if I can say this for everyone, but just let her know your love for her, I am so sorry my friend, this is not fair to either of you or anyone else that has to do this, just love this beautiful lady to pieces
EVH
12 Posts
I should also say, never stop fighting either, just show her your love, that’s all I want is to be loved by the ones closest to me, that’s all
elle29
165 Posts
How r u now ? It's been a while just finding this !I Hope someone directed you to Advocates in Cancer . I asked the Info tech through some umbrella organization and each hospital has a few to contact ?.
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