The day Mike was diagnosed with ALS, he told us he didn’t want a tracheal tube to help him breath when the illness progressed to that point. A tracheal tube is invasive mechanical ventilation that requires a tracheostomy for placement of a tube into the windpipe to deliver air directly into the lungs. Every once in a while throughout this journey, I have asked Mike if he still feels the same way about this ‘thrach' topic and without hesitation, he responds yes. Its Mike’s life and as much as I want him to be with me for as long as possible, I would never try to talk him into a tracheal tube. He says it will just prolong the inevitable and he says he would rather be doing cartwheels in heaven than stuck here, completely paralyzed and breathing through a tube. I don’t blame him…I think I’d feel the same way.
Sometimes I watch Mike breath; at night mostly when he sleeps. I stare at his chest to see it rise and fall and I delight in the small movement and in the odd deep breath. Of course the inability to breath is what makes this illness fatal, so even though Mike is almost fully paralyzed, those deep breaths give me hope - there’s still time.
This summer Mike was listed as “palliative”. While anyone diagnosed with a terminal illness is considered palliative, when Mike was “listed” as palliative, I was left with a lump in my throat for days. When you hear “palliative” you think, “dying” and while Mike is dying of ALS, we’ve never really thought of it as dying of ALS, but instead, “living with ALS”.
Palliative care is specialized medical care for people with serious/incurable illness. The focus of palliative care is to keep the patient comfortable. Doctors and nurses work with the existing medical team to provide an extra layer of support. The goal is quality of life.
When Mike was listed as palliative, we were told that doctors and nurses would come to our house to see us and offer support as needed. We were also told that Mike would start getting his medication for free and perhaps even home care for free and other “perks”. We thought, “Wow, membership has its privileges.” Had we known these things, perhaps we would have signed up earlier.
Sure enough we have had visits from the community palliative nurses and someone from the Provincial Respritory Outreach Program who brought a non-invasive breathing machine called a bi-pap and a back-up suction machine. The palliative doctor came for a visit as well. She prescribed Mike with a liquid compound medication for his excessive secretions that goes in his tube. It has helped, but lately, I must say the faucet has been running again.
Even though Mike has recently been listed as palliative we are not discouraged and even though Mike has made a firm decision regarding invasive breathing apparatus, we as a family are not discouraged…we make the best of this life with ALS however long or short it is…we are at peace…we actually feel extremely blessed.
It’s a sorry state of affairs this world. ALS is just a drop in to bucket when it comes to trials and tribulation. So many people on this planet are experiencing far worse. I can’t watch the news very often, it’s just far too upsetting. Sometimes I say, “I should have watched that Seinfeld re-run again instead of the news.” And we drag ourselves to bed feeling terrible for others and grateful to be us.
Ah, life…no one warned it was going to be so unfair, but no one promised it was going to be wonderful either and isn’t it both? Don’t we need to take the bad with the good? Mike and I embrace both because without the one, we wouldn’t have the other.
When we take our beloved partner in marriage, we take them “for better or worse,” We accept their faults for our favourite things about them. It’s a package deal…kind of like life! We accept the faults and our favourite things about it, and like Mike would say, “It’s it good to be alive!”
Other news around here:
~ Teachers are no longer on strike here in BC, so Erin is back to work and happy to be back! And she continues to recover well from her hip replacement surgery.
~ Leah starts Kindergarden! Following in her dad’s footsteps (and aunts and cousins), she is going into French Immersion…tres bien!
~ I have gone back to school as well. Madison and I are taking the SETA (Special Education Teacher Assistant) course. I’ve been interested in this program for a long time and am so thrilled to be taking it now with Madison! This has been a big step for me because not only is it a challenge with my time, it also kind of breaks my heart to “move forward” when I just really want to stay “here” with Mike.
~ My dad continues to wait for a surgery date to remove his cancerous tumour and is upset because he says had he known he would have to wait this long, he would have followed through with his plans to go to Malawi. He has a building project going on there, plus, he has more wells to drill. He says he’s got to get back; theres a lot more work to do. I’m sure he’ll be back before we know it. The plan is Nathan will accompany him next time.
~ The Ice Bucket challenge has come and gone, but lingers on around here…just the other day we had a surprise video from Vinroy, Mike’s best buddy from Toronto who he hasn’t seen in years. Mike and I were both in tears watching the heart warming video. Just before Vinroy gets the freezing cold bucket of ice water dumped on his head, he says, “This one’s for you Mike. If it wasn’t for you, I wouldn’t be here…you know what I mean.” Mike saved Vinroy from drowning when they were teenagers. Mike has actually saved a few people from drowning.
~ Also, while the Bucket Challenge was going strong, Jerrica, a young women from our community started a fundraiser for us on Facebook. She said it was a way for people to donate directly to a family dealing with ALS. The fundraiser is still happening and Jerrica is determined to reach three times her goal…she’s almost there. I first met Jerrica when she organized a fundraiser for Project Wellness at her high school, a few years back. It was a huge success and she kept thanking me for speaking at the event. I had to laugh because she was doing us the favour, and I kept thanking her. Thank you Jerrica once again and thank you everyone for your very kind and encouraging words and generous Ice Bucket donations!
~ I am almost finished writing my book. In order for it to be on shelves in the spring, the manuscript is due next Friday. For weeks I’ve been saying, “It’s almost done!” But there’s still a ways to go in tying up lose ends. Everyone has been so patient with me as it’s been my primary focus for months. Thanks to Madison for all the salads, sandwiches, muffins and other meals!
Well, that list of news is a lot of good news. I’ll go to bed tonight with a happy heart and watch Mike’s chest rise and fall and delight in every breath. And I’ll give thanks to the Lord of course!
One final thing, we have lived here with Elanna and Peter and kids for over two years now (three summers) and they continue to stick by our side “for better or worse”. While Michaela and Luke are teenagers and would probably love to have their rec room space, we never hear a complaint. We never hear a complaint about anything from any of them. We are grateful beyond words for their help and support and we couldn’t do it without them!
Michaela, Elanna, Peter and Luke on ALS Walk day
Nathan and Leah breaking in new ball gloves
Leah catching fly balls and grounders...taking after grandma and granddad