Hello maine, and thanks for sharing about you and your husband.
Living with the knowledge that you are dying is such a balancing act. A balance of how much you focus on your illness and how much you focus on living. A balance of how much physical and emotional energy it takes to get through the day. And a balance of how much you focus on the future and how much you focus on the present moment. A balance of how much you talk about your illness and wishes and how much you try to focus on going to work and maintaining a semblance of normalcy. And it can be difficult to live fully in the present, knowing that further decline from an illness is ahead.
In my clinical practise as a nurse, it is fascinating to see how different patients and families live while knowing the illness and path that is ahead. And I observe caregivers/partners who struggle as they want to plan and prepare. They want to know all the details that are ahead. They desire to talk about the ill person’s wishes for what to do in the future. What treatments might he want to pursue, where does he want care to place when he can no longer get to the bathroom? What are his values as the illness progresses? And these are important questions that you may want answers to…. But it seems like your husband is simply not ready to talk about these things.
The time may come when he is ready, and hopefully you can talk about things then. And hopefully these discussions will happen in a timeframe that makes sense alongside the changes that are taking place as your husband declines in his physical health. Sometimes these discussions take place before they need to or when they should, and sometimes they just don’t happen… and you may not know that until you are in the moment or look back and think about things further.
It seems like the recent discussion at the doctor’s office was really tough for your husband. And as a result it has left you with regret for wanting to talk about his wishes. You have realized he was not ready for the discussions about a living will. And if that is the result of him not being ready, then you know that you may have to leave those discussions for a while and help him focus on living as normally as possible.
If you are finding that you have questions and the need for support as a caregiver to your husband, there are likely many resources that you could access to help you as you in this caregiving role. Often hospice or palliative care programs have social workers, caregiver groups, or volunteers who can be available to you. This may be a good outlet where you find the support that you need as you have questions that arise.
Know that there is also a community that supports you here on the discussion forums as well, as you continue this journey with your husband.
Simone (CVH Moderator)