I posted this response for @Teddy74 who is dealing with anticipatory grief. I know many of you will also have important input to share that we can all use. This is just my two cents for the stage I am at currently. I recognize it will change as Steven’s health changes.
Let me share a little about my anticipatory grief journey. When we first found out that Steven was now palliative I was an absolute mess. I thought I had experienced sadness in the past, but I had never known such overwhelming grief. I didn’t have a name for it, I just knew that I was mourning what was to come.
I don’t often visit Dr. Google for cancer related information, as many note here the speed of new medical innovations, advice and treatments outweighs the outdated and not always factual information online. But I do utilize CancerConnection, Google and YouTube and Podcasts to help with the emotional side of cancer. So many are so raw and honest in sharing their good, bad and ugly and I see myself in many of their emotions. It helps to recognize that so many others are walking the exact same path and we are not alone in our grief. The site I find visited most often is whatsyourgrief.com.
This is my caregiver anticipatory grief path to date. I will leave Steven when he’s ready to talk about his journey and the support he has sought and is receiving.
I am being emotionally raw here and recognize that my path is still evolving and there will be many and up and down but here it is.
First and foremost I sat with myself in quiet to really think about all of the things that were causing me such sadness. All of the fears Steven was living and experiencing. The loss of the love of my life; being alone; the person who knows me better than I know myself won’t be here to cheer me on, push me to try, slow down and enjoy the moment, all the amazing qualities he brings to my life, I will be left feeling empty; abandoned. He won’t be able to hug me anymore, I will need to sleep and live alone. He is the one I go to in sadness and he won’t be there to comfort me. Will I ever want to hear music again? Steven plays guitar and I find it so soothing when he plays. Why all that worries me, I also recognized my biggest fear was pain for Steven. He has known so much incredible pain the past few years and that is what terrifies more than anything.
We have been so fortunate that Steven is now under the care of an amazing pain team. They have been so incredibly responsive, kind, engaged and helpful after his last major surgery. We have never know such empathy in a medical team. These Drs have brought me much solace that Steven will be very well cared for.
Steven and I have had and continue to have hours of open, honest and raw conversations about our feelings. It is after many of these conversations that we sought out grief counselling. We have an amazing therapist who is there if we need her. She was really happy with what we have put in place and told us we were on the right path but she will be there to support when we need her. The one big take away on this path was for Steven. He has always tried to fix things when I was sad, angry or anxious; all the feelings. He cannot “fix” my anticipatory grief. We talked a lot about how we just have to go through it and how he can support me emotionally as I’m supporting him. This was transformative for us and has eased this part of our process.
We ensure that those around us know how much they mean to us, how much we value their love and support. We tell people openly and honestly how much their care positively impacts out lives. It brings us joy and ensures they recognize they are making such a positive impact to our lives. To be honest, it’s been rather magical the amazing impact it has had on our relationships. I spoke privately with each of my nearest and dearest. Were they going to be available and prepared to support me and about how I wished to be supported. They have stepped up beyond my imagination.
I have spent the time educating myself about what is to come. I know where the grief groups meet in my area. I have spoke with other widows about their journeys in order to prepare myself. I have counseling.
We take the time to have wonderful conversations everyday. Watch movies we both love and enjoy. We reminisce about times gone by and adventures had. We make plans for future adventures and dinners with friends. We hug tight and often. We laugh, we sing, we cry and we share. We enjoy the dogs, our wood burning fireplace and the yard. Walks in the neighbourhood. The joy in simple every day moments. I know he doesn’t just love me, he adores me and I him. He’s not giving up and neither am I. We take the time to ensure he doesn’t always have to feel like a patient. Just Steven the man. We remain optimistic and continue to make plans and will deal with whatever happens as it comes.
So the one thing I would tell you is to share with your Mum. All of the love and the wonderful memories you have wrapped up in each other. Please know we are all here to care and support you in whatever way we can. I say it all the time but this amazing community provides so much invaluable support. Please let it be one of your safe space. Sending you a virtual hug, Nicky
Thank you for this amazing post @NickytheCanuck . And so for unselfishly sharing what will benefit so many members on the site going through this. Im so impressed by everything you are doing to prepare for what is to come. When I knew Dan was likely not going to make it , I buried my head in the sand and pretended it wasn't happening. My friends and family kept warning me, but I would become defensive and angry at them if they ‘dared’to say such a thing. I couldnt come to terms with reality at all. I love that you and Steve have such open and honest communication and conversations. No matter how hard it is, it is so important! Dan and I had none of thst. As soon as he was diagnosed, he shut down and wouldn't communicate with me. The ‘c’ word was off limits. I was not allowed to mention the ‘c’word. Cancer and counseling was a no no for him. I went to counseling myself but it would have been so beneficial if we both went. I also love how you opened up to your loved ones and know you will have that support and cushioning when the time comes. What a comfort that must bring. It's the worst feeling knowing what's coming and thinking you are going to be all alone in this. I did go to a grief group, but not until after . So I was left scrambling around to find support afterwards . It's so great how you are putting things in place now so you dont have to scramble around when the time comes. I commend you and admire you for all you and Steve are doing to prepare yourselves. Tbe scariest thing is thinking about rebuilding your life all over again. But you have done everything you possibly can with this horrible situation and I think you are so brave and amazing. Thanks again for sharing this. Hugs!!!