I wrote the following in the summer of 2014 for the newsletter of the ALS Association of Oregon and SW Washington, a segment called “Caregiver’s Voice”.
My partner Mary DeWitt and I met in the fall of 1996 in an AOL chat room, where we quickly became friends. We chatted off and on via email and the phone, then lost contact for several years. In 2003, Mary tracked me down, we started talking again, and finally realized that our paths were meant to be intertwined in a deeper way. She moved to Long Beach, California where I was living, and my three nearly-grown kids soon adopted her as “SuperMom”. In November of 2007 a job opportunity opened up for me in the Portland area and we made the move. Mary was thrilled to be back in the Pacific Northwest where she had been raised, and we both loved living close to a nature center, where we could walk together in the woods. In July 2012, we were able to find a rural home on two acres and started to work on our plans to turn it into our dream place when things came to a screeching halt.
Mary had been diagnosed with fibromyalgia in 1997, and with rheumatoid arthritis in 2005. When she started developing more fatigue, muscle weakness and joint pain, we attributed the symptoms to those diseases. Then other symptoms started to crop up that didn’t fit with either of those diagnoses: increased memory fog, shortness of breath, muscle spasms, and large numb patches on her back. Her brother had just been diagnosed with MS, and since she had always thought her mother had died from MS complications (in 1969), she was referred to a neurologist for testing. It was nearly a year before MS was ruled out, and by then her headaches, weight loss, shortness of breath and leg/arm weakness were much more pronounced. She was diagnosed with Motor Neuron Disease/ALS in December 2013. Even though we both had known that was a possibility, the diagnosis was devastating. We tried to keep a positive outlook, and admittedly Mary has done a much better job of that than I have. In the last ten months, Mary has gone from walking with a cane to being unable to bear any weight on her legs. She uses an AVAPS 24/7, spends her days in a power wheelchair, and gets the majority of her nutritional needs met via a feeding tube; now we are looking at communication options as she begins to lose strength in her voice.
Having no family or friends nearby has been challenging; everyone is in another state. We have been fortunate that family members and some friends have been able to come and visit over the last six months, helping out where they can and providing emotional support and comic relief.
For Mary, these last 10 months have meant an incredible amount of change, forcing her to develop trust in the midst of vulnerability, of literally putting her life in the hands of agency caregivers every day so that I can continue to work and keep our home. For me, it has been a constant fight to keep myself together while I go head to head with bureaucrats, ignorance and arrogance to get her the services and support she needs. We have been through quite a few caregivers and home health nurses who could not keep up with the changes or who thought they knew what was best without listening to Mary and observing her changing needs.
I have found the monthly Caregivers’ Support Group to be an incredible source of strength and knowledge for me. It was hard to walk in the first time, but I was immediately welcomed and learned so much that I attend as often as possible. All of our PALS progress at different rates and patterns, and have different needs; sometimes you are asking questions, and sometimes you find you are the one with the answers. If you are a caregiver, and you haven’t yet been able to attend a Caregivers’ Support Group meeting, I strongly encourage you to attend at least two or three times before deciding if it is the right place for you. On a more daily basis, I have found my support in a Facebook group for caregivers where we ask questions, vent frustrations, gain tools to advocate for our PALS and share the joys.
The staff of the ALS Association of Oregon and Southwest Washington have been amazing to us as well. The emotional support and advocacy available by email and phone are incredibly helpful, and the equipment loan closet has been critical as Mary’s equipment requests make their way through weeks or months of bureaucracy. And we can’t say enough about the staff at the Providence ALS Center who are guiding us through this journey and supporting whatever needs arise. Our families and friends took on the Ice Bucket Challenge and made their donations to the Oregon/SW Washington chapter, knowing that they were helping us and others in our community even though they can’t be physically here to support us as we all wish they could.
I am trying to walk this journey one day at a time, and although I am not always successful, I continue to strive for what balance I can find. I am trying to find ways to take care of myself in the midst of constant change. I am trying to trust that something bigger than myself is supporting me, and will continue to support me as we walk this journey together.