Caregiving and Hospice Care with Compassion: A Personal Experience
By Andrew Wilson
I retired early four and a half years ago to become a full-time caregiver for my wife, Linda. She had been diagnosed with dementia in 2010, but it progressed slowly, and she was able to take care of her regular daily needs more or less by herself until 2020.
Routine is critical for a person with dementia. Disrupt that routine, and they often don’t know how to respond. As long as she was able to stick to a routine, Linda could function at home. It was a familiar environment, and she knew how to remove her lunch from the refrigerator, heat it in the microwave, and eat it when the news came on the TV at noon.
Most days passed without a problem, although I would occasionally come home to a mess that had to be cleaned up, like the dry cat food being all over the kitchen floor because she noticed our cat’s bowl was empty and attempted to fill it up.
I worked for a local university, and when COVID caused the world to shut down in March of 2020, I began working from home. That’s when I realized I wouldn’t be able to return to the office because Linda’s dementia had progressed to the point where she couldn’t handle her daily care by herself any longer.
That’s the thing about dementia. It’s insidious. It’s steals pieces of your loved one a little at a time, slowly turning the person you love into someone who would be unrecognizable if you hadn’t observed the transformation firsthand.
Complicating matters was that Linda was a type 1 diabetic. As I said, routine is important to someone with dementia, and the fact that Linda had been living with her diabetes for more than 30 years before she was diagnosed with dementia actually helped her handle her dementia. The whole procedure of testing her blood sugar, giving herself an insulin injection, and then eating her meal was so ingrained that she was able to remember that she had to follow that protocol long after she had begun forgetting other things. In fact, long after her handwriting became illegible, she insisted on writing down her blood sugar in a logbook to track her blood sugars – even though the meter stored those readings in its memory.
Questions to Ask When Choosing Hospice Care
For my wife’s end of life care, I chose Bridges Hospice, which I highly recommend, but there are numerous hospice organizations that provide great care. Here are some questions to ask when deciding which agency to choose:
Ask about the hospice’s accreditation and certifications.
Ask about insurance and/or Medicare coverage, if the loved one is covered by Medicare, to ensure that the family isn’t stuck with unexpected expenses.
Ask about staff expertise in palliative care. Also, will they know how to deal with the specific condition that your loved one is dealing with? (Cancer, dementia, Alzheimer’s, diabetes, etc.)
Ask about services, availability, flexibility in coverage. Will someone be accessible 24/7 in case the family caregiver encounters a situation that is new to them?
Do they offer family caregiver support such as training in how to provide care as well as respite care options, which allow the family caregiver to have a break once in a while.
Some patients in hospice improve to the point where they stop needing hospice care – at least for a time – but for most people, entering hospice care means that the inevitable is close at hand. One question to ask is about grieving support. Does the agency provide spiritual and emotional support during hospice care and especially after the loved one’s passing?
As a caregiver, I was challenged by her condition daily, particularly in the last two to three years when she became immobile and incontinent. There was always work to do, and, particularly with the incontinence, it could be messy and gross.
Friends and family would always ask if they could help, but Linda’s multiple medical conditions made me wary about asking a novice caregiver, no matter how well-meaning, to sit with her for a few hours, let alone for a couple days to allow me to go to a niece’s wedding out of town. Could they test her blood and give her insulin? Would they know how to deal with an exceptionally high or low blood sugar? And would changing her diaper be asking too much of a novice? But with the amount of stress I was feeling with each passing month, I knew I needed help.
Last September, with my wife’s primary care physician’s agreement, I made the decision to call hospice to provide that extra help. It turned out to be the best decision I could make. My stress and anxiety went way down. Linda was still at home, but a nurse would visit her two or three times a week to check on her and provide medical care if needed. An aide visited her Monday through Friday to clean her, change her, and – depending on the time of day – give her lunch. Social workers and pastoral counselors would stop at least once a month to check on Linda and my emotional and spiritual well-being. Best of all, I had someone to call for guidance if a situation arose that I hadn’t seen before.
Memorial Day weekend, the nurse advised me that the end was near. Linda was what they called “transitioning,” meaning her body was shutting down. They put her on oxygen to help her breathe, gave her medication for her pain, and told me that she would likely not regain consciousness so there was no need to feed her or test her blood sugar any longer. The end came peacefully on Sunday evening. I sat near her bed watching her breathe, but my attention was drawn to something else – I can’t remember what. When I looked back at her a couple minutes later, the color had left her face, and she wasn’t breathing. She looked like she had fallen asleep. Her passing couldn’t have been more peaceful, and I have the hospice nurses and aides who cared for her to thank for that.
Andrew Wilson is a contributing writer to Western Pennsylvania Guide to Good Health. He can be reached via email at Andrew.wilson33@verizon.net