August 19, 2015

A Spousal Caregiver's Battle Cry

You know how last week I said I don't want to talk about it? 'It' being chronic illness and caregiving.

Looking back, at least three other posts I've written since May have shown my struggle with this, both the actual circumstances and talking about them.
  1. I Don't Think I'm Doing it Right
  2. I Can't Blog...I Haz the Life
  3. An Awful, Negative and Ranty Post
After reading last week's lame attempt at expressing myself, another spousal caregiver felt compelled to write to me on his own blog. In his letter, Paul was able to put into words ALL THE THINGS I have been mostly blocked from spilling myself.

I sat at the kitchen table, phone in my hand, slack-jawed, as I read Paul's letter. Tears sprang to my eyes as each and every sentence echoed and validated my own thoughts and feelings.

I've never felt more heard, more understood. I immediately thanked Paul and boldly asked if I could share his words here. He said yes.

Dear Jen,

     I hope this letter finds you and yours well, It's been quite a while since we had any contact with each other. I had a chance to catch up with you via your writing this evening. As much as I wish you were not struggling with the situation you are in, I was so relieved to read your words. It feels so good not to be alone. I can empathize with almost every line.

     When this started, I naively thought I knew how tough this would be. I thought because we cared for each other, we could get through anything. Time has proven just how wrong I was.

     I've always thought of myself as being fairly strong in mind, body and spirit. I was not ready for how thoroughly that would be tested.

    The person who was my confidante and best friend has been replaced by someone I hardly recognize some days. Depression, anxiety, medication and illness have taken my "devil may care" partner in crime and replaced him with this yawning abyss of need. There is no room for me there and I grieve for the loss.

     It's hard to put into words. How do you describe what's going on inside when everything around you feels like chaos? Where do you start? Do you want to take the lid off that particular box? How do you make other people understand? Do you even understand yourself?

    Watching someone leave you by inches, your heart breaks over and over and over. Going from being angry he's late because of an extra hour at the gym, to praising him for being able to support his own weight for a few seconds is soul crushing. But you smile and nod and make all the appropriate noises, "That's great. Do you want to try one more time?", because that's what they need. Tears are for later. Sadness is for later. Taking care of you is for later.

     It's lonely here.

     Well meaning friends and family offer support and advice. Tell you how important it is to look after yourself as well. The demands of care make it hard to maintain any kind of outside contact. Plans get changed, rescheduled, canceled. Your world slowly shrinks into the next doctor, the next appointment, the next agency to contact, the next visit. Conversations start and end about care and illness, how they're doing, how you're holding up. Things start to feel a bit one-dimensional. But you smile and nod and make the appropriate noises, "We're holding up, things are fine", because that's what they need to hear.

     But things aren't fine, I know.

     Wanting to take just a  few minutes. To lay this down, catch your breath and regroup. But there's never time. Everything should have been done yesterday. The clock feels a bit like an enemy, counting down the hours.

     It's hard not to envy other couples. There are times I can't be around it. The comfort they take in each other, the inside jokes, their closeness. The physical expression of caring for someone. The desire to have that for myself can be overwhelming. I miss him, I miss us. I was completely unprepared for the hit my self-esteem took when the look of desire in my other half's eyes was replaced with need. It's difficult feeling alone while still being part of a couple. It's hard not to feel bitter, cheated.

     Guilt and worry become constant companions. Questioning decisions. Trying so hard to get things "right", Never feeling like you've succeeded. Beating yourself up for not being the ideal caregiver, housekeeper, breadwinner and spouse all rolled into one. Feeling bad for getting frustrated, thinking you should be better at coping. It's exhausting, demoralizing.

     There are never enough hours in the day. I passed exhausted two years ago. I have no idea what fuels me these days. People feel obliged to comment on how exhausted, haggard, old or worn out I look. It warms my heart to know they care,

    So there it is. This is not the life I had planned. I'm picking up my marbles and going home.

     That's not really an option though, is it?

     We care. As thankless as it can be at times, we care. So, we do what we can and agonize over what we can't. People looking in must think we're insane.

     I had someone ask me if I wished I had never met my partner given how things had turned out. I replied, "The last three years haven't been the most fun but the fourteen before that I was loved, adored even. That's more than some people ever experience in their lifetime. How can I regret that?". I'm pretty sure your answer would have been similar.

     And that's my answer. I pray for the strength to make it though another day. I try and focus on how happy I am we were in each other's lives rather than feel cheated we won't have all the time I hoped for. Try and remember the fun we had rather than be overwhelmed with his need now. Be happy with this rather one-dimensional life because home is where he is, not the building I live in.  I want our life together to continue in whatever form that takes. This isn't just about him needing me; I still need him too. And every once and a while, he's there again. He'll smile or laugh. We'll share a  moment or an hour, sometimes a whole day. That gives me strength.

     Even though he would bite off his own tongue before saying "thank you", I'm here because I choose to be. Not because it's my duty, or my responsibility but because I can't imagine being anywhere else.

     Our story will end. It's important to me to know for myself that I did everything I could for him. A lot of people don't understand that. It's not about thank yous or acknowledgement, I need to know I tried my best. That has to be enough. I think the only thing I would regret when everything is said and done is not having tried.

     We haven't been given an easy road to travel. Often it feels like the choices we have are bad or equally bad. That just sucks. I think it's valid to have days where life just sucks. I don't feel the need to put too much of a face on things. Denying things are not great, faking it 'til you make it doesn't work well for me. I find it too much effort. I need days to be mopey, or quiet or weepy to try and process everything that is happening. I'm not great at sparing other people a bit of awkwardness or feeling guilty because they don't know how to comfort me. I'm not asking them to. I'm not going to pretend everything is roses and sunshine when it isn't. Try me again tomorrow.

     We are in different circumstances. We will make different choices. The route we travel will not be the same. But we share a commitment to the people we love. Ultimately, we have to trust ourselves that we will do the best we can for them. That's easier said than done.

     I can't offer advice. I can't offer much of anything other than understanding. Hopefully you will find some comfort and strength in my words as I did in yours.


I haven't a clue how Paul found comfort or strength in any of my words. His words are where it -- the meat of it - is at. He nailed it, utterly and completely.

This is what we need everyone to know. This is the truth, from the bottom of our hearts.

Thank you for letting me share this here, Paul.

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