I've had a strange obsession with watching The Waltons the past few months. I find myself DVRing every episode on three different channels. I watch 4 episodes a day. For some reason, I've been oddly attracted to their TV-land multigenerational family living and the connection to my childhood (when The Waltons was in its prime.)
Now I know why.
Almost three years ago, I wrote about The Big Move when my parents decided to move to a senior living community. At the same time, I moved across the country from Washington, DC to the home they were moving out of in Phoenix so I could be nearby to be their caregiver. And so it has been for the past three years. I went through the very difficult transition of living in their home without them. They adjusted to living in a smaller home and a new community.
For two years we did pretty darn well. Mom and Dad had several health crises, but overall maintained a certain level of independence with my support and minimal paid caregivers. Dad's Alzheimer's disease progressed very slowly. All that changed suddenly when Mom had a bout with colitis, fell, and seriously fractured her spine.
Mom was hospitalized for a total of 40 days last summer and endured three months in skilled nursing rehab. During that time, Dad struggled to stay centered. The stress took its toll on all of us, and Dad's cognitive abilities began to decline more rapidly.
I had my hands full with Mom, so began paying for more assistance from caregivers to help Dad get going in the mornings. When Mom finally came home last September, I was told by the rehab nurses that she slept through the night. I planned to sleep at their apartment the first week or two to help with transition and ensure her safety. I don't know where those nurses had been for three months, because Mom was up every two hours to go to the bathroom, and not stable enough to go on her own.
After a few months of juggling work, their care, keeping our homes and finances going and sleep deprivation I was beyond depleted. I began paying caregivers to stay with them several nights a week and had others check in every 2 hours during the day. Then Dad got sick in December.
After 10 days in the hospital, Dad came home with a feeding tube and greatly reduced cognitive functioning, as often happens for those with dementia after an illness or hospitalization. At the same time, my beloved niece lost her life to suicide and our family was reeling. We were numb, really, and I needed more help.
Since January we've had family or paid caregivers with Mom and Dad 24/7. Mom's health and mobility have declined. Dad had throat surgery, got rid of the feeding tube and thankfully his cognitive functioning has improved greatly since January, but they continue to need help 24 hours a day.
Which brings us to this juncture in my parents' life and my caregiving journey. We cannot afford the cost of the community where they live as well as paid caregivers to supplement what family can provide. At $8,000 a month over budget, the savings are gone and it's time for a change.
I have done a great deal of scenario-planning, researching, budgeting, prioritizing and agonizing. I've considered moving my parents to the DC area or to Ohio near my sister who lives there. I have investigated assisted living, group homes and other options. I've looked into buying a bigger house more suitable for multigenerational living here in Phoenix. Finances, their health and safety and our quality of life have been my guiding factors.
In the end, the decision was made clear: Assisted living is, in reality, not 24 hour care and we would have had to pay for extra caregivers - even costlier than our current situation. Moving them out of state would have been very bad for Mom's health and Dad's neurologist confirmed that much change would jolt his fragile brain health - he would certainly dwindle away much faster. He also said we are lucky to have the option for Dad to go back to the home he lived in for 28 years that is still familiar to him.
So that's what we'll do. While I will have to modify the house, rent office space, lose privacy, put furniture in storage and deal with many other changes, it will also be easier in some ways - relieving a great deal of financial pressure, eliminating all my daily trips to their apartment, and integrating my caregiving with my life more easily.
The more things change, the more things stay the same...
I don't know how Waltonesque The Goyers will be, but one thing we have in common with them is our faith, our desire to look for the positives, and our love. And so ... goodnight John Boy!