Empty Words

     I like words.

      We're hard wired to use our words to label things, to compartmentalize, organize them. It's part of how we distinguish friend from foe, recognize danger and know when to kick into " fight or flight" mode. We can't help ourselves.

     In my role as a caregiver, I'm very careful. No empty promises, no pleasant platitudes, no,"Everything will be okay". I've become very conscious of the words I use. It can get tricky, a little like navigating a verbal mine field. I've also become more aware of the words of others.

     I am an informal, same-sex, interracial, spousal caregiver: providing care to a person with a terminal, degenerative, neuromuscular disease. These are currently MY words.

     That doesn't sound so, so bad. Informal. I can wear jeans?

    I'm an unpaid, untrained, Caucasian guy trying to take care of my male Pinoy partner. He's dying. His disease will shut down his body, bit by bit, until it kills him.

     That doesn't have quite the same polish now does it? Strange how different informal reads as opposed to unpaid and untrained, terminal versus dying. It's less tidy, less palatable.

     But it's the same thing.

     We use our words to dress things up. Avoid things. Sterilize situations with clinical descriptions. Throw enough adjectives into the mix and things don't sound so bad. Get out the thesaurus. He's not dying, he's terminal, needs hospice, palliative care. It's easy to gloss over things we don't want to acknowledge. To be less Jen-uine.

     I've spent a lot of time online looking for peer support. I can cry and type, I can't cry and talk. And I can do it at 2 in the morning when I can't sleep.

     In my searches, I kept coming across things like,  "it was my honour", "it was my privilege". "Fighting the good fight". "Extreme caregiver". " If you love them enough".

     I couldn't relate to what I was reading. At first I thought there must be something wrong with me, with our situation. I stayed very quiet because any comments to the contrary got trounced.

     Eventually I did find a forum dedicated to ALS, their CALS (caregivers) and PALS (people with), It was such a relief. Finally a group of people who I understood, who supported me and were supported by me in return. No grand statements, no judgement, no playing to the masses. Just help.

     Friends and family say things like, "he's lucky to have you", " I'm glad he has you", "I don't know how you do it". I've been called extraordinary and special. A generous spirit. My mom keeps telling me how proud her and my father are of  me.Then of course there is my personal WTF did you just say to me, " you don't know/understand how hard it is for me to see him like this".

     Here is my truth.

     Being a caregiver ranks as one of the worst experiences I've ever had.  Intense stress and pressure. Draining physically, mentally and financially. A road filled with more sorrow and heartbreak than I could have ever thought possible.  I can't imagine ever looking back fondly on this. I wouldn't wish this on anyone.

     I don't feel honoured or privileged to be his caregiver. I didn't get picked because of my awesome skills, He didn't have a choice, I was all he had. He's stuck with me, like it or not.

     We're not fighting anything. It's not a battleground or a contest. There is no winning or losing. There is only trying to live each day as best we can.

     There is no extreme caregiver. It's not a sport. You don't get a medal or a trophy. There is no independent review by your peers to establish a rank. You either are one or you're not.

     "If you love them enough". "If " statements are absolute rubbish. I'd liken it to telling an expectant mother if she loves her child enough, labour won't hurt. It's a bit silly really, but people feel obliged to trot them out anytime things are difficult.

     Loving is the easy part. It's why I'm here. It's what gets me out of bed when I'm so tired I can barely think. It's why I'm by his side for as long as he'll have me. It's why I willingly accepted this burden and it is a heavy load to bear. I'd do it all over again in a heartbeat. No questions asked. No need to quantify my feelings, they're enough.

     Unfortunately, love doesn't pay the bills, add extra hours to the day or make me two people.  Telling me if I love my partner enough that everything will be okay is useless. It's a trite, empty platitude. ALS doesn't care how I feel about my partner, nor does the bank or my employer.

     Whenever I hear,"he's lucky to have you" . " I'm glad he has you" or "I don't know how you do it", I often think to myself, I bet you are/don't. Not to worry, I've got this. Go back to being just as supportive as you've been these last few years.  See, not so special, or extraordinary or so generous. Just me.

     As for my mom, she makes me laugh. I'm not sure what she's so proud of. They taught me to take care of the people in your life, They led by example so I blame them. It's their fault for making me this way. I'm still not making my bed though, there are limits.

    I think the next time someone says," you don't know/understand how hard it is for me to see him like this" I'm just going to stare at them, blinking. Give them some time to digest what they've just said to me. Trust me, I understand.

     How about we stop trying to shove this pig into a silk dress? No matter how you dress it up, it's still a pig. Bad things happen. Death and dying are an inevitable part of life.

     Embrace and accept the bad. Welcome it in and sit it at your table. When it's time, send it on it's way. It's okay to be sad, to cry, to mourn, to feel overwhelmed. Happy isn't our only state of being.

     Denying or avoiding the unpleasant parts of life and let's face it, my current situation is no one's idea of a good time, means you ultimately miss out on some of it's joys. Yes, we have had moments of joy on this road. Lots of them. Made all the more precious because of the situation that surrounds them. I will be present for those.

     When you see me, let's just skip the pleasantries, those empty words. Don't ask how we're doing unless you really want to know. Tell me a joke, make me laugh, be the arms that hold me for a second, be the shoulder to cry on, the ear to listen if I need to talk. Some times the best use of our words is to let them remain unsaid.

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.

Pissing in the Ice Bucket

     This could also be called, "Why do people have to make it so hard to do good."

     Like so many others of us, my Facebook feed has been inundated with the ALS Ice Bucket Challenge. An initiative to raise money and awareness surrounding the neuromuscular disease. It has succeeded beyond anyone's wildest hopes.

     This cause is near and dear to me, the person I live with was diagnosed with the ALS almost 2 years ago. I've watched him go from gym rat to being barely able to cross a room in a walker. It is a devastating disease. The median survival rate is 39 months, only 20% survive 5 years. To add insult to injury, his is probably familial. He lost his mother to ALS so knows what is in store for him before the end.

     And what is in store. Losing the ability to walk, talk, swallow or breathe on your own. Unable to care for yourself. Dependent on someone else. Locked inside a failing body.

     With almost no treatment options, maybe you can imagine how excited and grateful I was to see the outpouring of support flooding across social media. I'm not sure people can understand how truly thankful I am to everyone who took the time to accept the challenge, pass it forward and donate.

     The ALS Society has been a God sent. They provide equipment and support to thousands of people living with the disease and their caregivers. We couldn't afford to buy all the equipment they have provided to keep him as functional and comfortable as possible. The caseworkers have helped navigating the medical and social assistance worlds that can be confusing and overwhelming.

     Despite all the good, there just have to be "those" people.

     To all the people bitching about wasting water I really don't have any words so here is a picture.

     Yes, I understand potable water is a problem. Myself, I try not to waste water in my day to day life. I don't, and I bet if you talked to any ALS sufferer or their caregivers, consider one drop used in this campaign to be wasted. If it makes you feel any better, dumping my bucket of water was the closest I got to a shower that day and probably the day after. I'm pretty sure my fellow caregivers have missed enough showers to cover all the challengers and then some.

     Pamela Anderson came out very publicly criticizing the organization for animal cruelty in their research. I understand and even support her stance. If PETA's stats are even remotely correct with a 92% fail rate in testing from animals moved to human trials, there has to be a better way. But, the cause is not the organization. The organisation in question doesn't just use the money for research. Finally, you can earmark what your donation is used for with in either the ALS Society or the ALS Organisation. If none of that assuages your conscience, donate to an organization like Lotsa Helping Hands. They provide support to care givers of all types, ALS being one.

     In short, you can support the cause and stay true to your own moral compass. We, ALS suffers and their loved ones, don't have time for the medical profession to change it's ways, we need help in the here and now. Had she accepted the challenge she could have helped raise awareness of ALS and her cause by explaining the how and why she donated the way she did. Win, win, win. Instead, well ... am I alone in thinking smug, self righteous bitch? Even though I know that's not fair. She has done tons of charity work.

      Jim Riggs came out against the challenge based on religious reasons. God doesn't want us doing embryonic stem cell research. Again, I can understand your objections based on your beliefs but I must have missed that " turn a blind eye to suffering unless they believe exactly as you do," day in Sunday school. This is not the kind of Christian charity I was raised on. Jim, same advise for you as for Pamela. If you want to help, there is always a way that doesn't compromise who you are or what you believe in.

     If for some reason the point of this campaign still eludes you, let me spell it out. H.O.P.E. It's been over 70 years since Lou Gehrig died of this disease that bears his name in the public's memory. Were he alive today, his treatment options wouldn't be significantly different than they were then. Let us hope. Stop pissing in the Ice Bucket.    

I am a caregiver

     As I was catching up on my reading, I came across this post from Jennifer over at Dancing in the Rain. Jennifer is awesome in all kinds of ways but her posts on dealing with her husband's illness always speak loudest to me.

     I started to comment but as it grew to novel proportions, I decided a post was in order. After starting the post, realized one wouldn't cut it, so this will be the start of a few articles. Following up on a promise I made about posting how my other half and I are coping.

     It seems like a lifetime ago that my partner was diagnosed with ALS, more commonly known as Lou Gehrig's disease. It's a terminal, degenerative neuromuscular disease. About the time he was diagnosed, a friend of mine found out he had early onset Parkinson's. Between the two, I've had lots of exposure to life changing illness lately.

     Jennifer, my friend's wife and I all share one thing. We are caregivers. As I am finding out, kind of unsung heroes. People expect us to be in this role and that we'll somehow make everything work. Don't get me wrong, none of us would be anywhere else but there isn't a lot of support out there if you're taking care of your significant other. It's taken as a given.

     I'm lucky.
   
     The ALS Society has incredible resources that have been put at our disposal: equipment, PSW's, occupational and physiotherapists, a nurse practitioner. The ALS clinic has been wonderful as well; a battery of doctors have been there to help as much as possible. In talking with my friend, I know he hasn't received the same level of help. I'm enormously grateful for the combined efforts these people have made and continue to make on our behalf.

     Unfortunately the emphasis is on his physical state. There was a suggestion of counselling, but it isn't a required part of treatment and as such has limited coverage with our health plan. He refused it anyway so a bit of a moot point.There is also no coordination of treatment. The specialists treat the ALS, a GP for general health, a massage therapist, a physiotherapist, a neuropsychologist ... The list goes on. He is treated as his disease, bit by bit, not as a whole person.

     As it turns out, there is a very simple reason for this, liability. No one wants to be sued. Every decision is made by the patient. In fairness, everyone has been quite frank about it. The specialists only treat the symptoms of the disease, the GP flat out said he knew nothing about ALS, that was for the specialists. Honest but no less frustrating.

     For me, very important to keep a positive attitude around him. Important to keep him in a positive state of mind. It's "crucial" to his well being. Not a suggestion in the world as to how that was going to happen. I'm not a patient so don't require treatment, he isn't required to do anything to support his mental health. Except take these pills, and if they don't work we can add these ones and we can increase the dosage. More frustration.

     My health plan will cover 5 therapy sessions. Searching online, I found a support group that meets for caregivers of seniors with ALS, once a month, 2 hours away. I did find an online group that has been very supportive, especially in the early days. I also have an incredibly strong group of family, friends and co workers. I'm lucky.

     Being one of the lucky ones doesn't make me feel any less alone in this sometimes. Then I stumble across something like what Jennifer wrote and know some one out there knows exactly how I feel. That this thing we share hasn't got the best of us. It eases the bad days and the good ones are that much sweeter.

     I am a caregiver.