A letter to a friend

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    The person who was my confidante and best friend has been replaced by someone I hardly recognize some days.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, cancelled. 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 your 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 by 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 what ever 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 think 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. 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.

Sincerely,

Paul     

   

Failure?

     It seems like a life time ago my other half was diagnosed with ALS. At the time, I was fully prepared to blog my way through our journey. Documenting how we surmounted every obstacle, united, together until the end. I wanted to be open and honest, much like Jennifer talking very frankly abut her husband. Then reality came crashing in, the posting stopped, our voice fell silent.

     There are a few reasons why.

     The most obvious is time. Being a caregiver is time consuming. Strangely enough, I'd be lying if I said this was the main reason. 

     The next would be being overwhelmed. True, but again not the main reason.

     If I'm honest, and I will try to be because I think this is important, the main reason I stopped was a complete and total sense of having failed.

     He's still dying. I couldn't keep him at home. We didn't beat this thing. We didn't manage to climb Everest despite the challenges.

     The Internet is littered with these great, inspirational stories of triumph against the odds and I wanted ours to be one of them.They're are great stories and I wish everyone who is one of them only the best. 

     The problem is, they only represent one side of things. The reality for many of us is very different. We don't talk about that. There is a very real sense of somehow failing in our duty as caregivers if our stories aren't motivational enough, that we have to justify or qualify why.

     For most of the last three years, I've lived with that vague feeling of shame. For not living up to the standard of what the world wants to hear. And for many, it is what they want to hear.

     People don't want to know it's a physical, emotional and financial train wreck. They don't want to hear you're struggling. It seems like everybody assumes there is a quick fix and if not that then at least have the decency to stay quiet. Because they are your problems, you figure it out. There's an app for that, isn't there?

     Let's face it, no matter what the topic, we're inundated with how we should be. Be the best Mom, the best employee, best husband, have the best body, be the best friend. If only you do this you will succeed. Live the fairy tale.

     And it is a fairy tale. Life is messy. There is no one size fits all solution to any problem. I'd say this is especially true if you're a caregiver. Whether you're a SAHM, caring for an elderly parent, or a terminally ill loved one, it seems like there is always someone ready and willing to tell you how got it wrong.

     It's demoralizing and I'm calling bullshit. The only way to fail is not to try.

     For us, it was a lose - lose situation right from the get go; a progressive, degenerative, terminal diagnosis, no treatment options. There is no winning in this scenario. There is no award for best death.

   Our only option was to do the best we could, and we did and continue to do so. If that's not success, I don't know what is.