There is no crystal ball on what is the right answer when there are no good choices.

There is so much responsibility when it comes to caregiving for someone who is so sick. Remembering every pill, time taken, dosage and what is it for. Remembering doctors appointments, procedures, and names of every specialist. Keeping track of records from the multiple different hospitals my husband had to visit for specialized surgeries and transplant programs, all bringing him hope that they would have an answer the other place didn’t.

The pain of all the bad news, repeatedly. The times we had to be separated from our daughter while we were at a hospital in a different state. Or when she was with us at that hospital in his ICU room witnessing death all around us. The struggle as a mom of who “needs me most?” My daughter, who was 13, or my husband, who was in the ICU with decisions needing to be made.

There is no crystal ball. I just always had to think on my feet and make decisions with the information I had. I tried not to second guess myself, but I constantly lived with the mom guilt that my daughter didn’t have the attention she needed or deserved. I am so thankful we have amazing friends around us, but it was still so incredibly difficult. My psychiatrist told me that the mom guilt I still feel in “picking” being at the hospital with my husband and not at home with my daughter is completely normal, but that I was with the person who needed me most at that time and that is the best I could do. And that now is the time I get to focus on my daughter. In the process my daughter learned empathy, patience and compassion because of the heartache we all experienced in decisions where there is no right answer.

I wish I could say that I don’t look back and wish I had made some decisions differently, but I do and I will always have to live with that. I wish my husband was a little less selfish and encouraged me to be with our daughter more while he was being cared for in the hospital and was a grown adult. I hate using the word selfish in this situation. My therapist told me that often times dying people are selfish people though and that makes total sense to me though. I know he was hurting and scared, but we also had a young daughter who was basically couch surfing at friends’ houses. I wish I would’ve done more self care for myself instead of sleeping on the vinyl couch in his hospital room every night because it is what he wanted. The lack of sleep, stress and mom guilt almost killed me. I was very close to breaking and then I would’ve been useless to all of them. People always preach about self-care and when you are in that moment of literally life and death with a family member it is very hard to take care of yourself. Sometimes it might just be taking a walk, grabbing a coffee or calling a friend to cry to.

I can see this all now, but when you are in the moment and things are changing daily, you just have to keep making decisions quickly. I know I am not alone in this feeling and if you are feeling this way, know you are not alone and you are not a bad person for feeling angry or wanting to walk away.

I never want to sugarcoat it. Like many marriages mine was far from perfect, but when it came down to it, he was the father or my daughter and someone I had spent almost 20 years with. There was a lot of hurt and I struggled with being angry that this was the place I was now in. I can say that I am proud of what I put aside and that helped him until the end, but that also caused a lot of feelings I am still working through in therapy.

When your spouse is terminally ill there is so much that crosses your mind. I remember I thought multiple times that I would definitely never marry again and that I probably wouldn’t even want a serious relationship. That I would maybe date casually, but I would never want to be in the position I was in with the level of care I had to provide and hurt I had to endure. Now as time passes I can see that having companionship and love in your life is rewarding, and depriving yourself of that because you are afraid of having to take care of someone again might not be the answer. To be frank, I thought this same thing after I had to put my dog down, but here I am with another dog that I am crazy attached to that will inevitably end up in heartache for me, but I don’t regret it.

When life presents you with situations that have no GOOD answers, there is no crystal ball and you just have to go with your gut and try to pick the less horrible option. It’s normal to second guess. I just kept telling myself that this can’t last forever. At some point something will be better.

After the passing of my husband my therapist encouraged me to write to help get out some of my anger and to “name” the trauma I experienced while caregiving. I encourage you to do the same. I’m at a place now where I am pulling back the curtain a little and sharing in hopes it can help someone even just a little.

It definitely makes you appreciate the little joys in life a whole lot more.

A small part of my big story as a 45 year old widow

Sometimes it’s hard to remember the good through all the bad.