Sunday, 28 October 2012

In This Together

Almost every day someone asks me how Mike is doing. When I’m at the gym, or grabbing some groceries or doing some banking, someone I know asks me how Mike is doing. I usually stare at the person and smile, while I think about what I am going to say. It’s such a hard question to answer because physically Mike isn’t that well, but emotionally, spiritually and mentally, he is very well. Sometimes I say he is great, sometimes good, sometimes okay…it’s like what do I say?

So here’s the deal, Mike can’t really walk (he walks a little bit with his walker - really slow and shaky). He can’t lift his arms or move his hands and fingers on his own. He is hard to understand…his speech is really impaired and he has swallowing issues as well. He can’t scratch an itch or wipe his nose or feed himself or dress himself or shave or shower. Even so, Mike is still the most positive person I know. The only thing that frustrates him is not being able to verbally communicate the way he would like to. And yet, he laughs a lot at himself and at me. He’ll say, “Scratch my eye brow,” and I’ll say, “You want some pie now?” “We don’t have any pie.” He looks at me like what are you talking about, and then we laugh.
I am Mike’s primary caregiver and to be honest I feel honoured to do the job, but it’s a lot of work. It’s completely exhausting at times and back breaking at times as well. It’s tested my patience like nothing else. Sometimes I get frustrated but I try not to let it show. I try to be nice all the time but find that a challenge once in a while.

Taking care of a grown man leaves little room for anything else; needless to say, my life has changed dramatically. It’s just the way it is. I’m not mad or resentful or sad. If I think for a second how I’d like my life back, I shake my head and remind myself that Mike is the one with ALS. I always tell him, “We’re in this together,” but he is the one with the debilitating illness and has a good reason to be mad or resentful or sad…but he is not. He is very content and I am humbled, again and again.
Shortly after Mike was diagnosed, our dear friend Pamela gave us a very wonderful gift; a donation of four hours of home care a week. We didn’t need it right away and even when we could have used it, Mike wasn’t ready. I finally told Mike that I was ready and in August, we started getting help once a week. Voltaire is Mike’s home care nurse and is at Mike’s beck and call on Wednesdays from 10 to 2. He gives Mike his breakfast and a shave and a shower and brushes his teeth. Voltaire gives a perfect shave. He reclines Mike in his chair, lathers on the shave cream and slowly removes every hair on his face, running back and forth to the sink in the washroom to rinse his razor. Mike says Voltaire gives the best shave, and I give him the best shower. Well, that’s no surprise, when I give him a shower he calls it, “Wet t-shirt time” (I usually end up as wet as him). He also really enjoys the long head massage I give him when I shampoo his hair…I know he loves it. I scrub him from head to toe and when I’m done he always says the same thing; “I feel like a million bucks!”

Mike’s sister, Pat came out for a couple of weeks in September (right after his sister, Aileen was here to help us move Madison). Pat’s timing was perfect; she took care of Mike everyday while I packed up our house in preparation for our move. I would get Mike ready in the morning and then take him to her motel, where she spoiled him with the meals and snacks he really likes and gave him back massages. They did cross words and went for walks and watched whatever Mike wanted to watch on TV. My sister Elanna and I would walk up in the evenings and pick him up and walk him home. Elanna was also helping us out at home (and still does). She would offer to give Mike his breakfast (or dinner sometimes) so I could have a shower or make something to eat for myself. She would fold my laundry or do my dishes as well (still does). I thought to myself, with the help of three women plus Voltaire; Mike is well cared for.
Anyway, it’s come to that time for more regular home care support (probably a little overdue). The community nurse and occupational therapists have been in a few times to prepare for more home care support starting tomorrow. I must say, this is one of the hardest things we have had to do so far. I want to be there for Mike all the time, but I know it’s important for both of us to get more home care help. It’s another adjustment we have to make and I’m sure we will be fine.

                                Mike says he has a problem - two spoonfuls and only one mouth

Friday, 19 October 2012

Just One Word of Advice

While eating a piece of toast all smeared with honey the other day (and butter), I was reminded of a childhood memory. When I visited my grandparents, I would climb up on their kitchen counter and help myself to their soda crackers and cover them with honey and eat them. Sometimes I would eat them right there while sitting on the counter and sometimes I would fill a plate and take them somewhere else to eat them and then go back for more when I was done. I love honey and I loved my grandparents and on that gray, rainy day while sitting with Mike eating my toast, I got a little choked up and with one of those smiles you can’t contain, I told him about my memories of soda crackers and honey on my grandma’s kitchen counter.

This fond memory filled my heart with joy and brought a sense of thankfulness. Joy and thankfulness go hand in hand and I had to wonder if I was really experiencing those things very much lately. Sure, I thank the Lord every day for a big long list of things. I raddle that list off and quickly move on to my bigger list of requests; I have it down to a science.

I wrote in my blog post Mike’s Glass is Half Full, how Mike had said one night shortly after his diagnosis that he was thankful for everything, even the things he didn’t want. That has stuck with me and has caused me to check my own attitude. Mike wasn’t thankful for something he didn’t want, like ALS because he was going to lose the use of his arms and legs and because his speech was going to be greatly impaired and because swallowing was going to become a huge issue…of course not! What he went on to say, was that he was thankful because ALS was going to cause him to rely more on God. Mike was wise and right; here we are a year and a half later and ALS has caused us to rely more on God.

1 Thessalonians 5:16 – 18 says: Be joyful always, pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus. Having ALS is a real bummer, and there are a lot of people whose circumstances are way worse. It’s like, “really?” “I have to give thanks in all circumstances?”  “And, I have to be joyful too?” “Wow, that’s a tall order.” I’m pretty sure that’s why the ‘pray continually’ is in there becasue we couldn't do it on our own, not without the help of the Lord.

When our son, Nathan first started playing hockey, Mike and I would give him advice before every game. “Keep your head up.” “Stay close to your man.” “Pass the puck.” “Encourage your team mates,” and so on. Eventually, there was nothing we could say, he did all of those things and more….better than we could expect.  So, this was the advice I started giving him, “Every time you step out on that ice, give thanks to the Lord.” Then it just became, “Give thanks”. After a while, all I had to say was; “just one word of advice Nathan” and he would say “yes mom”.  Later, I used the same “Just one word of advice” with Madison before every hockey game and I still do. An attitude of gratitude was something we taught our children would serve them well in life…in sports, in work, in relationships - in the good times and the really tough times.

The other day shortly after I finished my delicious toast and after I finished reminiscing about my grandparent’s place and the crackers and honey I ate on their kitchen counter, I checked my Facebook page and found a message from Madison. This was her message:
           She said - My tape job this weekend (a picture of her in her dressing room getting her stick ready before her game)

Friday, 5 October 2012

Rocky Mountain High

The Golden Ears Mountains are what make the town of Maple Ridge, where we live, so beautiful. I can’t imagine this place without them. When I used to drive my children to school when we lived on the other side of town, we turned off our street and headed north on Cottonwood towards Dewdney Trunk Road where we got a perfect view of the Ears. I would tell my children ”just look at those mountains!” and I would use words like, breathtaking, spectacular, amazing, gorgeous, etc. My kids would say things like, “Yah, sure mom”, or “Are you okay mom?” I think they even told me to “gear down” a few times. But turning the corner and facing them straight on really did take my breath away.

Today I got a good long look at the Golden Ears. There is no snow on them right now, but it’s only a matter of time. For ten months out of the year, there is snow on those mountains and after a fresh dusting, it’s like “Wow, did you get a look at those Ears this morning?” Without snow, they look naked…all chiselled and really strong looking. It’s like “where do you work out?” That sounds silly, but it’s true.
I have only climbed the Ears once; with Mike, Peter, friends Colleen and Chris and our niece Jenny from Toronto. (When any family members come to visit, Mike assumes they want to climb the mountain…only some have taken him up on his challenge of adventurous fun…and pain). Mike has climbed the Ears a bunch of times, including one time with our three kids and a couple of their friends. Reaching the top gets you super high in more ways than one. You’re on top of the world and it’s incredibly inspiring, to say the least.

This past weekend, Mike and I and my mom and dad drove to Calgary to visit Madison at university and watch a couple of her hockey games. It’s a really long drive; about twelve hours, but the views are spectacular. It’s mountains and valleys all the way across B.C. and a little ways into Alberta; the Rockies spit you out just before Calgary and then it starts getting flat.
I can become very emotionally charged when I am surrounded by mountains. They remind me how small I am and how great God is. They also make me think about the highs and lows of life…the mountain top experiences and the times spent in the deep valleys.

Anyway, our reading from My Utmost for His Highest in the morning on Oct 1, the day we drove home, was very fitting. This is what Oswald Chambers said:                                                                   “We have all experienced times of exaltation on the mountain, when we have seen things from God’s perspective and have wanted to stay there. But God will never allow us to stay there. The true test of our spiritual life is in exhibiting the power to descend from the mountain. If we only have the power to go up, something is wrong. It is a wonderful thing to be on the mountain with God, but a person only gets there so that he may later go down and lift up the people in the valley. We are not made for the mountains, for sunrises, or for the other beautiful attractions in life – those are simply intended to be moments of inspiration. We are made for the valley and the ordinary things of life, and this is where we have to prove our stamina and strength.”
I dedicate this blog post to our friends, Neil and Donna (who I have blogged about before). Neil had PLS for six years and was recently diagnosed with ALS. Our hearts go out to you, with love and prayers.

“In the world you will have trouble, but take courage, I have overcome the world.” John 16:33
Mike and Nathan - Golden Ears climb, Summer '09
Erin and Madison
Erin and Amanda