Monday, March 31, 2014

Movin' along

Monday morning, again.
Snoo.....  Holy crap, look what time it is.
Teeth brushed.
Pants on.
Car keys? Car keys? Car keys.

Maybe Monday isn't so bad after all.

Whats got you moving this morning?

I’m the Conductor on this Musical trip.  Co-conductors are my buds Callie of JAmerican Spice, Stacy of Stacy Uncorkedholy cow 092Cathy of  Curious as a Cathy, Naila Moon of Just the Stuff You Know and Honorary co-conductor this for the next few weeks is going to be Danielle of Royalegacy.   NOW LET’S ROCK THIS PLACE & get this TRAIN rollin’!

Wednesday, March 26, 2014

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.


Tuesday, March 25, 2014

How do you...?

     I'm on a roll, two posts in a week after months of hibernation. Maybe it's that balmy -20 degree spring weather we've been having. Maybe not? Anyway, time to chat, Coffee Chat with RoryBore.

    The prompt this week, What is the one question you would ask everyone you meet?

     That's an easy one. I'm a curious fellow. I'm constantly asking people, "How do you .....?
Rory has been barraged with questions about blogging, template design, finding the time to write. My uncles, cousins and father are my go to mechanics and home repair gurus. Mom, my grandmothers and anyone else who cooks have been hounded for recipes and techniques. I have a living, breathing search engine at my disposal. Who needs Google?

     There it is, short and sweet. What's your question?

Sunday, March 23, 2014

I knew ...

     It's been a long time since I last sat down at the keyboard to write for pleasure. I still read along when time permits. Lately I've been missing it more than usual. I looked at my last post, a different Listicle, and I just knew I did not want my final post to be about Miley and Robin. Funny how that works.

    Following Robin's prompt, nine more things I just knew.

1 There have been a few times I just knew it was time to go home. Work/school in the morning, but I was having so much fun, consequences be damned. Who needs sleep anyway?

2 When our eyes met, I knew it was all kinds of wrong but I just couldn't deny that spark. You all know what I mean.

3 When I moved to the city for school, I knew I would never go back home to live on my parents farm. It was time to make my own home.

4 There have been a few times I just knew things were broken beyond repair. Something I had done or had done to me that altered a relationship beyond saving.

5 Many times I just knew it was the wrong thing to say at exactly the wrong time. I have a horrible case of foot in mouth disease. I've perfected the art of the apology and learned to just stay quiet.

6 I knew it was time to end a poisonous friendship. Although we had hung out for years, I could only be the whipping boy for so long.

7 I knew it was the right time to do something for myself when I sold the house in Toronto and moved to the suburbs.

8 Dancing at a friend's wedding, I knew it was our last dance together. It took all night but I'm glad I was so persistent. The memory of dancing under a Tuscan moon with you was worth the effort.

9 In the 10 seconds it took for this to happen, I knew I was going to die.

I have no idea how the transport behind missed me but I've never been so grateful to be wrong.

     What did you " just know"?