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.

   

Struggling

     It's been a while since I wrote anything about our dealing with ALS. Partly because the move and holidays have eaten up all kinds of time. Mostly because I'm struggling with it. Until I can figure things out, it's hard to put thoughts to words.

     I thought I would be facing depression, fear, tears and sadness. I wasn't prepared to be feeling so much frustration. Jaw clenching, teeth cracking, tongue swallowing, frustration. Not so much with the doctor or the medical community but with my partner.

     It took me a little by surprise how badly I took the confirmation we got from the specialist in December. I guess sub-consciously, I was really hoping it was a mistake. The doctor was quick to reassure us that it was in the very beginning stages, almost imperceptible nerve damage, presenting in it's least aggressive form.

     Knowing my partner the way I do, I asked what we could expect in the near future. What would this mean for our lives? No guarantees, but basically, not much change. He should go back to work, to the gym. Keep active, resume your life as much as possible. There is a predictable progression of symptoms. You won't go to bed having trouble walking and wake up unable to swallow. It just doesn't work that way. He even told us some of the symptoms my other half has been complaining about have nothing to do with his condition. As good as the news is going to be all things considered.

     As upset as I was with the confirmation, I was also encouraged by what he told us. There was time, life could go on. We could make plans, maybe not 10 year ones but you know what I mean. Doing Italy this September shouldn't be out of the question, we could plan at least that far ahead.

     What happened?

     Two weeks later he bought a cane to walk with and won't leave the house without it. Two half days a week at work, no gym. Most days in bed until after noon. Then sitting on the couch for the rest of the day. Taking sleeping pills to sleep, then staggering around the house higher than high. Complaining about the same things the specialist told him in no uncertain terms aren't symptoms, or happening yet. And that's the kicker, yet.

     We will face these things eventually. It is unbelievably frustrating to watch him doing exactly what the doctor told him not to do. I'm getting information in pieces. I was there for the specialist appointments, but not for his GP or ALS counsellor. He's taking what he wants to hear from each and creating something that just isn't so.

     I don't doubt for a minute that he believes himself the next best thing to helpless. Just because he believes it doesn't make it true, yet. But it will. And I don't know how to help.

     We don't talk, we argue. I don't know how he feels. I'm just being pushy, mean. But here's the thing. We've been down this road. An emergency room visit because he couldn't breathe. Even packed a bag prepared to stay. No, not ALS, an anxiety attack. Relax, go home, here's an appointment with our anxiety clinic. Cancelled. Don't need it.

     A present, my other half is his own worst enemy. I can't get through to him. He doesn't believe anxiety, depression and fear have real physical symptoms. And the clock is ticking. There will be a time when we are facing all of these things, it just shouldn't be yet. It's robbing us of enjoying or making the most of the time he has.

     That's the crux of it. Time is an issue. What if by being patient and allowing him to work through this on his own, I'm harming not helping? On top of everything, I feel guilty for pushing as much as I do, not being the sympathetic shoulder to lean on. There isn't an easy answer.

     I'm resigned to the role of stern parent, rather than partner. A shift in our relationship I'm not overly thrilled with either. Ultimately, I can't make his decisions for him. He either will or won't come to some kind of terms with this. Sometimes all you're left with is waiting, with teeth clenched, hoping for better days.



        

    

    

Kiss me, I'm Irish

     Yep, that's right. You'll be seeing that and a lot of shamrocks today, it's St. Patrick's Day. Hurray, a whole day to let my Irish blood run riot and drink my favourite beverage, beer.

     Now of course in Ireland, it is a much more sober religious holiday. Sober, get it. I'll just wish them well and join in the North American shenanigans. But wait, it gets better.

     I ran across this this morning in my perusal of all things on the interweb. I know, who knew there were health benefits? I'm down right giddy with excitement.

     If I was on top of things, I'd have a pot of Irish stew simmering away with dumplings or boxty, would have some soda bread baked but hey, it's Saturday. I haven't even figured out what I'm having for lunch and I skipped breakfast all together. Dinner is hours away. But there will be beer. Healthy, delicious beer. All I have to do is figure out what the hell they mean by "responsible" consumption.

    One thing is for sure, I'll be out and about. Shillelaugh in one hand and a pint in the other. I may even wear green. How ever you celebrate, have a Happy St. Patrick's Day.