Difficult Conversations

I highly recommend that you have difficult conversations about what you want to happen at the end of your life early in any relationship that you have, or even with close family and friends. It’s not a pleasant conversation, but a very needed one as it helps to prepare those that love you for a time when they might have to support a decision that is hard to make in the moment.

Dave and I had this conversation many years ago after his grandfather passed away, by choice. We had supported the decision, his grandfather was in his late 80s or early 90s and had lived a good life, experienced and influenced much. Others however, didn’t support his decision. He made the decision after needing to be hospitalized after a fall that resulted in a bleed in his brain, resulting in a severe concussion.

While hard for family to hear this as we don’t ever want our loved ones to leave or to suffer it was his decision to make. From what I gather he felt it would be too hard to recover to where he was and didn’t want to be taken care of in a nursing home, which I completely understand. His wife had been moved to a higher care home before this and I also believe that he was lonely and didn’t want to be without her, even though she didn’t remember all the time who he was.

There were some in the family who thought that giving up was cowardly, and that he should have tried harder. However, at either a certain age or in a certain condition it just isn’t enough, might be too hard, or won’t do a damned thing to make things better. Recognizing this and respecting the decision of the person who is in that condition is important. Knowing what your loved ones want in those situations is key to being able to handle the high emotions of that type of decision and ensuring that our loved ones feel supported in deciding when it’s time to go, especially in medical situations where hope is minimal or we are being told that the progression of illness only leads to death.

While a hard conversation, it is about how you want to be supported should the worst happen. I am exceptionally glad that Dave and I were able to have this conversation both prior to his surgery and long before we were even faced with the situation we now find ourselves in.

As I type this I realize that we have talked about this issue multiple times during our relationship. Both of our children were born via C-section, which is a major surgery. With the youngest I also required a blood transfusion due to blood loss during delivery. Surgery of this type scared the crap out of me, as with any surgery there is risk. This type of surgery also requires an epideral, in most cases, which also scared the crap out of me as there is risk of paralisis during that procedure.

We had to talk about what I was willing to live with and what I wasn’t based on this. We also talked about our children and what we would be comfortable supporting related to disabilities should one of our children be indicated as having a major disability and if we would carry the pregnancy to term.

Yep, we had all of these conversations within our relationship and always came to common ground even if we didn’t always agree with the other’s point of view. Luckily we never had to make hard decisions about our health at that time, but it prepared us for this time as we know what eachother wants and how far we would like care and supports to go before we say goodbye.

No one wants to focus on how our lives will end. I am not saying that you need to do that, but have the conversation about the what ifs. It’s also okay to say you just don’t know what you would want in certain cases, as each one might be very different.

For Dave and I, we don’t want to have to live on machines. Oxygen is okay, but if I have to be fed by a tube or on a machine that breaths for me – no thanks. If it’s temporary so that I can recover from an injury – okay, but not something that is a must to sustain my life. HOWEVER, if I am able to continue to participate in my life, with family and friends, and generally be self sufficient, then maybe and at that time I can make the decision for myself, and please respect whatever I decide.

In Dave’s situation we will not be pursuing a feeding tube when he is no longer able to properly swallow. The hope of a miracle recovery is still there, but the practical nature of his cancer is that it’s very unlikely. To put in a feeding tube only prolongs his staying alive while he isn’t able to fully participate in life. He is bed ridden, has challenges communicating, and generally isn’t able to participate in our lives. All a feeding tube does is maintain his body with us. It does nothing to allow him to recover, as there is nothing to recover from.

Over this past weekend we had some of the abilities he lost return, talking specifically where he has been able to provide clearer answers to questions and try to tell us what he wants or would like. He still sleeps a lot, but when awake is present and responsive, most of the time. This is positive and we will enjoy the moments while we can as we are seeing less of these moments as things progress.

As hard as it is to have these conversations with your loved ones, I have to advise you to have them early. At least know what your partner would like in general. It makes dealing with health challenges easier, for the most part. It’s still exceptionally hard to watch your partner, spouce, lover, and friend slowly slip away knowing that they aren’t enjoying life the same. It feels like they are suffering without pain, which I believe that he is and it makes it harder when others don’t accept that he wouldn’t want to continue to live this way.

My hope currently is that he slips to sleep and dies during that sleep. It sounds selfish, but I know that he wouldn’t want to stay this way for years. He never wanted to be a burden to anyone in any way and this would certainly feel like that. We are not yet saying goodbye, but we are preparing for that eventuality.

I never wanted to do this at this point in my life, we don’t expect to see our children die before us, and we all hope to live to old age. Some of us don’t get that and go tragically. Some choose that end. Some slowly go that way due to some failing of the body. We are never fully prepared for this, but knowing what he wants makes it easier to deal with, or at least it does for me.

If we hadn’t had the conversations, I would be continually second guessing decisions and responses as I just wouldn’t really know. Likely decisions would be made that aren’t in alignment with what he really wants. I at least have a baseline to follow to make sure that we can support the decisions that Dave would have made, and likely is making even though he struggles to share them with us.