It doesn't happen over night. Just when I think we might be getting the hang of it, we have a terrible day that feels like taking 10 steps backward.
That may not be true, but it feels that way.
Mark and I are both doing our very best to take things in stride. We can problem solve -- how he will get to and from dialysis or having grab bars strategically installed -- but there are many feelings that come with the physical challenges.
You can't really problem solve feelings. Except maybe to express them, get them off your chest.
Sometimes, though, someone's feelings hurt your feelings.
My husband and I each have our separate struggles with his chronic illness. Some are the same.
What he feels:
- Left out - like everyone is buzzing around him while he sits on the couch, that he's watching life happen around him.
- A burden - I once wrote about something my dad said about this that I thought was kind of wise and made sense, but it actually still really bothers Mark.
- False - like he has to lie about how he really feels because he has been OK for so long and that's what people are used to
- Afraid - of being honest and scaring people away, of not being heard and of dying.
- Lonely - he desperately wants people to spend time with him that doesn't involve medical appointments or necessities, but because he/we need help with those things, he feels like it's asking too much.
- Angry - because his body won't work right, because he feels that no one is listening to him and because he knows he won't live as long he'd like.
- Inadequate - like I'm not good at being someone's caregiver because if I were doing a better job, he wouldn't feel some of the things he feels. And because I was so focused on Mark's needs and the transition to hands-on caregiving that I let my parenting slide for months.
- Stressed - taking care of and coordinating Mark's needs, mothering and everything that entails, managing the household (even more than I already did) and trying to remember myself in there somewhere.
- Lonely - this seems to be a pretty unique position for someone my age to be in, not to mention the issue of how spousal caregivers don't seem to count, and I haven't had the time to find an online support group.
- Half-widowed - I've already lost my husband in many ways.
- Stuck - whether it be here at home because I don't have a way to get somewhere (and don't want to ask) or because I feel like I can't leave, or in my own head, or when it comes to writing.
- Sad - for all the reasons above.
- Diconnected - from each other. All of the changes mean we do not have the marriage we used to. There is often so much in the way of simply giving each other a little affection.
- Bitter - we are both feeling more negativity than we ever have before, because circumstances have reached a point where we can no longer see a light at the end of the tunnel. Before, Mark would have a crisis, but recover (for the most part). Now, his body is just utterly betraying him.
- Grateful - on the other hand, we know we still (and always) have much to be thankful for.
- Loved - because we still love each other deeply, and we know others love us too.
I feel like I need a flow chart of feelings. It's just so complicated.
Unfortunately, we sometimes hurt each other with our various feelings and how we express them. It sucks how much we both cry.
We don't want to be doing any of this. But we have no choice. There is no alternative.
My hope is that Mark and I will keep moving forward as a team, being gently honest with each other.