Whenever someone mentioned the word ‘hospice’, I could feel a wall immediately go up inside me. As if I could somehow push away death from knocking on the door. I hated that word. To me, hospice meant gathering the family around to say their goodbyes, preparing to write an obituary and making sure your loved one has the right clothes for burial. It meant grief hitting you like a Mack truck and trying to prepare yourself for the inevitable.
Hospice does mean all those things. But it means so much more!! It isn’t just for the final moments in a person’s life. Medically speaking, hospice is for anyone who has an illness or disease from which they will never recover.
Two years ago, I was at my wit’s end. I was at the end of my rope, holding onto a knot I’d tied onto a knot I’d tied before. As my Father lost more of his independence and ability to bathe, toilet and feed himself, my caregiver plate grew so full that I knew something had to give. So I sought advice from a friend who was also a caregiver to her Father before he passed away.
“Have you thought about hospice?” she asked, after I told my tale of woe.
From the puzzled and angst-ridden look on my face, she knew an explanation was needed. She told me about her Father’s last days and how she learned – too late – that she could have called hospice months earlier to ease the caregiving burden.
I was so desperate, I was willing to try anything. I called the hospice company she recommended and before I knew it, one of their associates was sitting at our kitchen table, going over detailed information of what they would provide should my Father qualify.
They would send hygiene supplies, such as disposable underwear, mattress pads, premoistened towels, gloves, shampoo, conditioner, lotion and razors. Based on my Dad’s ambulatory stage, they would provide a cane, walker or rollator, as well as a transport chair, which is a lightweight wheelchair. They would also provide a wheelchair if our home was set up for it, but it wasn’t. They would provide bedrails, a bed alarm and a hospital bed if we wanted one.
Dad’s medications were provided and delivered to our front door, day or night. Once a week, a hospice nurse would come to visit. An aide came twice a week to bathe and shave my Father and a chaplain came once a month. We also had volunteers to sit with my Dad for an hour or two so I could run errands and a social worker to support our family with outside resources we didn’t know existed. Everything was covered by Medicare so there was no cost to us.
The first step was to ask my Dad’s primary care physician to send a ‘Request to Evaluate for Hospice Care form to the hospice company. Once that was done, a hospice nurse would come to our home, evaluate my Dad and decide on the health issue for which he would qualify. Although he’d been diagnosed with prostate cancer, we wanted him evaluated based on the Alzheimer’s he’d had since 2005. The hospice nurse would then make her recommendation to the hospice doctor, who would make the final decision to grant or deny hospice.
From start to finish, the whole process took one week. I was amazed. And humbled. And grateful. For the next two years, our front door felt like a revolving one, but everyone who came was there to lift the burden off us.
Hospice was there for us 24/7. If Dad fell, day or night, we could call and have a nurse come to the house to check him out. They charted the Alzheimer’s, educating us on what stage Dad was in and changed his medications accordingly. They listened to our frustrations, answered our questions and offered suggestions and recommendations as the disease progressed.
I used to think that if I tried to get hospice for my Dad, I was somehow signing my Father’s death warrant. But that was a ridiculous misconception. Hospice is a Godsend. It’s really an expertly skilled expansion of your care team. It’s a company of fresh troops to reinforce your fatigued foot soldiers.
If you are a caregiver and your loved one requires more care than you can give, research hospice companies in your area, get recommendations and make some calls. It doesn’t make you less of a caregiver to bring in hospice. It makes you smarter to let other people provide care so you can take time for yourself and spend more quality time with your loved one.