Tag Archives: hospice and dementia

Bearing Witness as a Caregiver

Bearing witness as a caregiver can be painful. As the new year begins, and my role in Mom’s care continues to shift, I’m paying careful attention to changes in her condition. Unfortunately, most changes are signs of decline. When I was the primary caregiver, I had too many responsibilities and no time to think. Though I have more time for reflection now, my thoughts are steeped in sadness.

Bearing Witness as a Caregiver

My mother’s shift to full-time, skilled nursing care coincided with the end of the year. During most years, I use these dark winter months to consider where life has brought me and decide where I want to end up next December. Usually I go to a book store and leaf through a dozen magazines in search of inspiration. Then I buy a few and cut out pictures to make a vision board. Last year’s board is sitting upstairs with the pictures falling off. I never really completed it because I was always too busy. Even though I have more time now, I’m not as motivated to do a board for 2018. Grief is catching up with me.

When you’re a day-to-day #caregiver, your tears have no path to the surface. You can’t cry while lifting a sick person. You can’t weep while feeding them. Maybe you can sniffle in the grocery store, but your face better be dry before you walk into the cold night air. I can cry in the car at times, but that never lasts long. Grief gets interrupted when someone cuts you off on the highway.

A dozen professionals now deliver my mother’s care. With more moments for reflection, I notice that her ten year fight with #dementia is like a filmed auto accident stretched out by special effects to last a decade. Unlike a movie on DVD, you can’t hit the stop button to avoid watching the accident. And it’s impossible to push fast forward to eliminate years of suspense. Dementia just plods along, stealing things you love until it finally takes possession of everything.

Bearing Witness as a Caregiver

Though we may be tempted to turn away, bearing witness might be our most important act at the end of the disease. Even if someone else takes on the daily toil of cleaning and feeding our loved ones, we remain powerful advocates because we know them so well. The most informed doctor can’t decipher what a double blink means once speech disappears. A nurse can’t know when grinding teeth signify, “Blankets, please!”

It’s difficult to accept Mom’s decline and know I can’t do anything to stop it. But I want — no, I need — to be brave and watch with care. Time can move fast or slow, but it’s always passing and I can’t afford to miss a thing in 2018.

Hospice Can Help Caregivers

Hospice can help caregivers well before our loved ones reach the end. In many cases hospice organizations can provide supplies and in-home aid that we struggle to obtain on our own. Despite the value of this support there is some stigma around the term hospice. Many #caregivers hesitate to say the word.

Hospice can help caregivers

The past few months have been so difficult at our house. We suffered through the winter snow and ice storms. A member of my weekly support team injured her wrist and couldn’t help us. Another person couldn’t get here because of serious car problems. At the same time, I was struggling to get mom’s tax records together, do my own taxes, and finish the renovation of her old home. All these issues swirled together to create a funnel of chaos in my life. My work suffered. Some times I couldn’t sleep. I felt like I was collapsing into a swamp of pain each night. Sore back, aching shoulders, worried mind.

Somewhere in the midst of this tempest, one of our helpers told me about a hospice group that helped her grandmother. She raised the subject gently and with tact. She said, “I don’t want you to get the wrong idea. I just think they might be able to help. They supported my grandma for nearly two years before she passed.”

As she explained it, the word hospice sounded less like a betrayal. I’ve always felt that I should keep my thoughts about Mom’s mortality to myself. My mother can’t speak. Maybe she does think about death, but I feel it’s unfair for me to share my fears when she can’t voice hers. This might be completely misguided thinking. I just haven’t been sure how to broach the topic in her presence.

Some Benefits of Hospice Care

The hospice group — which is named Compassionate Care — came to our house within hours of my first phone call. They sent a nurse to assess Mom’s health that night. The nurse approved services right away. Within 48 hours, I heard from another nurse, two chaplains, and a social worker. My work schedule was very busy so I felt a bit overwhelmed by the sudden flood of attention. But since they started working with our family, the hospice team has provided tremendous help.

Now UPS delivers basic supplies like chucks, gloves, and wipes to our door. That means I don’t have to drive to CVS or Rite Aid every few days. They’ve assigned an aide to help out at our house four days a week. I also learned that they arrange #respite care for family #caregivers. I never really wanted to discuss my fears about mom’s decline, especially not with strangers. Yet I’ve already engaged in several two-hour conversations that involved a lot of soggy tissues. Seems like there may be more of these talks in my future.

I’m not saying hospice is the right choice for everyone. But I’m sure I would have put this off longer if someone hadn’t suggested it to me. By waiting, I’d still be missing out on valuable help. We had my mom evaluated for hospice once before. At that time, they said she was a borderline case. This time the nurses had no doubts. The only one with doubts was yours truly. By erasing these doubts, I realize that seeing things more clearly is a great blessing.