As someone who is fully immersed in the world of disability, I’m all too familiar with the loneliness and isolation that comes with being a caregiver. I’ve repeatedly witnessed and personally experienced the gaps in service, the detriment of being in a caregiving crisis, and lacking services and supports to keep going for just one more day.

I am both a full-time disability advocate at The Arc of Spokane as well as a full-time caregiver for my father.

I spend more than 80 hours each week caring for and advocating on behalf of people with disabilities. I wear many hats as a direct support professional: daughter, advocate, social worker, friend, therapist, family member. But it’s really hard work. It’s difficult to listen to the painful experiences day in and day out. It’s difficult constantly having to offer emotional support, resources, an solutions to clients, and then leave work to do those same things (and more) for a parent. Scheduling appointments. Housekeeping. Errands. Shopping. Personal hygiene.

But I move forward because it is my passion, purpose, and duty to work on behalf of and alongside people with disabilities.

DAD’S DIAGNOSIS

My father has a rare form of neuropathy called multifocal acquired demyelinating sensory and motor neuropathy (MADSAM), in conjunction with multifocal motor neuropathy (MMN). His doctors aren’t sure they’ve ever seen a patient with both diagnoses concurring. MADSAM is often misdiagnosed for ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), as it results in the progressive loss of motor neuros that control muscles. MADSAM also involves stiff muscles, muscle twitches, and gradual increasing weakness and muscle wasting. His conditions are characterized by motor and sensory loss, paralysis of the muscles, extensive nerve damage, limb deformity, and muscle contractures. He was diagnosed with MADSAM more than 13 years ago and was told that if he lives long enough, he will eventually be paralyzed from his shoulders down. There is no known cause or cure.

All I’ve ever wanted for him is to continue to have autonomy over his life, to stay in his home for as long as possible, for him to have voice and choice, and to remain in the driver’s seat of his life. But these diseases that have robbed my dad in many aspects have been nothing short of overwhelming, confusing, and unpredictable for both of us. They have brought feelings of hopelessness, insecurity, and doom. He has been through millions of dollars’ worth of treatments (i.e. chemotherapy, weekly infusions, steroid treatments), none of which has stopped or even slowed down the progression of the diseases.

DAD’S CAREGIVER

Both paid and unpaid, I have been the sole caregiver and financial provider of my father for more than five years. I do not have respite, I don’t know anyone on my dad’s side of the family; I have been carrying the burden of his wellbeing and quality of life by myself. And as his neuropathy has progressed over the years, my responsibilities in caring for him have progressed as well.

In December 2022, my father fell ill and his health began to rapidly decline. Within two weeks, he went from spending his days moseying around the house, watching TV, doing light housework, showering independently, making a bowl of cereal each morning, etc. to being entirely wheelchair bound, unable to put any weight on his legs or use his arms, and essentially experiencing quadriplegia. I realized we were in big trouble one day when he fell in the living room and I spent 20 minutes picking up and dropping 200 pounds of his weight repeatedly, plummeting into a total panic knowing I wasn’t able to get him off the floor by myself.

I tried to get through this health crisis without asking for much help. I began staying at his house for 18+ hours at a time, rotating shifts with my mom (his ex-wife) so he had 24/7 care. My mother and I took turns sleeping on his living room floor. I was transferring him by myself 20_ times a day, setting up appointments with his case managers, taking him to multiple doctors trying to get answers, looking for affordable medical equipment, posting ads looking for additional help, all on top of my regular caregiving duties like housekeeping, meal preparation, and grocery shopping. I had missed more than two weeks at The Arc and wasn’t sure what was going to happen to my career. There was no end in sight.

COMMUNITY SUPPORT

At one point, I reached out to The Arc’s Director of Thrift Operations, Rose Williamson, to see if the Thrift Store had received any medical equipment donations that I could borrow or buy at a discounted rate. Rose quickly sent me photos of what they had and told me to come pick up whatever I wanted. Two generous staff members, Jenny Eaton and Heidi Franks, listened to my story, helped me identify and load up the equipment, and even consoled me as I fell apart in front of them.

A few days later, I posted on a Facebook group asking if someone would be willing to plow my driveway as it had been impossible to keep up with the shoveling. Our Executive Director, Sima Thorpe, and our Manager of Representative Payee Services, Tracie Thompson, both saw my request and offered to help. Sima called me at 7:30 a.m. and offered to have our Facilities Manager, Duane Morrison, come out with the company truck to plow my driveway. She told me I should have been leaning on my family at The Arc and that I need to let people help me. Duane cleared my driveway within an hour of the call.

Director of Advocacy & Family Support, Jennifer Ranney, delivered hundreds of dollars’ worth of premade meals to my family so that we could stop worrying about how we were going to eat. My Advocacy & Family Support team held down the fort, taking on additional responsibilities and serving my program’s participants while I was out. Countless colleagues checked in, prayed for us, and cried with us.

RECOVERY

My dad was admitted to the hospital in late December, where he stayed for 17 days as he underwent plasmapheresis treatment. This was our last hope in my dad every walking again. He made a miraculous recovery and by the time he was discharged, he was crushing his OT/PT goals and walking up and down the hallway multiple times each day. Since this emergency in December, my dad has safely returned to his home. It was a special, full-circle experience to return the donated medical equipment back to the Thrift Store for the next person in need.

I’ve been reminded that there are different kinds of help, that there are people who want to make things just a little bit easier for me, and people who deeply respect the love and dedication I put into the work I do for those with disabilities. Maybe members of your support system can’t take over your personal hygiene, bathing, or medication management duties. But they can drop off a meal, shovel your sidewalk, or run an errand for the person you care for. It’s usually asking for help that is the hardest part.

WHAT DOES THE FUTURE ENTAIL?

While I am so grateful for his recovery, I know the fight is not over. It’s just a matter of time before things begin sliding downhill again. Our situation has not changed and I am still looking for additional caregivers. I still need respite. It’s still isolating and lonely being a caregiver. And the caregiving shortage is very real.

DIRECT CARE WORKFORCE CRISIS

Thousands of workers are unable to earn a living wage, and people with disabilities as well as older adults are struggling to find the care they need. And if they do have a caregiver, it is likely that the caregiver is burned out, lacking resources, and without respite.

According to The Arc of the US, “With an average annual turnover rate of 45 percent, an average wage of $10.72/hr, and an average vacancy rate of 9 percent, the needs of people with disabilities, their families, and the workers themselves are not being met.”

An alarming article published by The Journal of Business on February 17, 2023 read, “Industry coalition WA Safe + Healthy has released new results of a poll in which 49% of healthcare workers in Washington say they are likely to leave the profession in the next few years. 68% of respondents said lack of adequate staffing was one of their primary reasons for leaving, 79% reported being burned out, and 45% said they didn’t feel safe at their healthcare job.”

WORK TO DO

Recently, House Bill 1694 passed in Washington State, which directs the Department of Social and Health Services (DSHS) to design a pilot project to pay parents of persons with complex medical needs for providing care and to study the feasibility and cost of paying the parents of medically complex children under 18 years old. It also expands the list of family members who are exempt from having to become home care aides and reduces the training requirements for those caregivers. The Department of Health will be required to establish a database to track and understand long-term care workforce data trends in order to inform future decision-making and policy.

SHARE YOUR VOICE FOR LEGISLATIVE CHANGE

Our voices are being heard! If you would like to be part of continued change for both people with IDD and their caregivers, here’s how you can join The Arc of Spokane:

Sign up for The Arc’s regular e-newsletter, Community Connection.
Join the Spokane County Parent Coalition to be a voice for change.
Connect with others in The Arc of Spokane’s Inland Northwest Disability Action Bloc Facebook group.