“You’d think I only had a few days to live,” my mom quipped. After I shared online that my dad and I enlisted the help of hospice for my mom’s care, Mom’s Facebook feed flooded with well-wishes, her doorbell rang several times per day with visitors, and the refrigerator stayed stocked with food for a week. The outpouring of love graced us beyond measure.
At the time, Mom was not on her death-bed. Though homebound, she was still able to do most things herself.
The Benefits of Calling “Early”
We quickly realized by the immediate outpouring of support that hospice is often viewed as a service only used in a person’s final days of life. My mom thought this as well. I found out later that she had apologetically told her hospice nurse, NaKosha, “I know we called you early.”
But from what I had researched, calling hospice “early” is encouraged. I had emailed my friend Deborah — a hospice nurse, author of Sunsets: Reflections for Life’s Final Journey, and editor of both my books — asking her about a cream for a wound for my mom. I told her we were waiting to be referred to hospice by Mom’s oncologist, and until we got a nurse I wanted her suggestion. She replied right away that if my mom was no longer seeking curative treatment for her cancer, she was a candidate for in-home hospice care now.
After speaking privately with my dad about what services hospice offered, Dad brought it up to Mom’s oncologist on her last visit after we found out no further treatment would be advisable. He highly recommended we utilize hospice for Mom’s final weeks.
Accepting Hospice Care
The first meeting when a hospice nurse came to the house was the hardest. Even though we knew Mom wasn’t taking any other cancer medications, “giving up” hope for her to get better was a hard pill to swallow. I think that’s the most difficult part of “calling in hospice.” On a mind-level, you know it’s the best, but on a heart-level, it feels like giving up.
Still, I saw in that first meeting what Mom would gain, in both health care and peace of mind.
Benefits of In-Home Hospice Care
The initial benefits of hospice care were immediate. Symptoms we didn’t understand could be addressed from home, instead of traveling to a doctor’s office, which was becoming impossible for Mom. During her care for those six weeks, she received antibiotics for possible pneumonia, medication for her cough, water pills for swelling, and drugs to help her sleep better, among other treatments to make her more comfortable. If she hadn’t had hospice care, her options would have been to simply deal with these painful symptoms or have Dad almost carry her to the clinic. In her weakening state, I have a feeling she would have stayed at home, miserable, symptoms untreated.
She also received supplies to help make her more comfortable — a wheelchair to get to the bathroom, a stool to make bathing easier, a pad to make sitting more comfortable, cream for a bedsore, and the list goes on. Whatever Mom needed to help her be as comfortable as she could be, it was provided. She was offered a myriad of options to help with her comfort, but nothing was ever forced on her. What supplies she used and what medications she took was always hers and Dad’s decision to make.
Consistent, Convenient Care
For the first few weeks, NaKosha visited weekly, answering any questions and meeting any needs that had arisen. She also came when Dad called with something that couldn’t wait until the next week. On nights and weekends, on-call nurses came when situations Dad couldn’t handle on his own arose. On the Sunday before Mom’s passing, a hospice worker delivered a hospital bed at our request. The hospital bed was always available and offered, but never given until we asked.
NaKosha worked directly with the hospice physician, who also happened to be Mom’s primary care doctor. When NaKosha felt Mom needed a prescription, she would talk with the physician, who would call in the prescription to our pharmacy. Having her do all of this on our behalf relieved a burden off us. Mom received all the care and medications she needed without leaving her home.
The Final Days
In the final days, NaKosha visited daily. She arranged bathing care since Mom couldn’t get to the bathroom on her own any longer. She took note of Mom’s pain and discomfort and administered pain medications and taught Dad how to do it after she left. She explained everything that was happening so we were prepared, such as early signs of Mom’s body shutting down. She gently shared that if Mom didn’t want to eat or drink, it was okay and normal. We didn’t need to force her to eat or drink and she compassionately explained why.
NaKosha also, after having gotten to know my mom in the previous weeks, knew that Mom didn’t want to be medicated unless absolutely necessary, so even when Mom was uncommunicative, NaKosha only gave medications when she felt it was needed for Mom’s comfort.
In the final hours, NaKosha kept us up to speed on Mom’s condition. She encouraged us to talk to Mom even to the end. She prepared us for the final minutes. And when Mom took her last breath, NaKosha needed just as many tissues as we did. She had become part of the family in those 41 days and grieved with us.
Calling in hospice to assist my dad for Mom’s in-home care during those final weeks was the best decision we made. Hospice isn’t a death sentence. In my opinion, it’s the most life-giving thing you can do for a loved one in their last days, weeks, or months.
For the 41 days Mom was under hospice care, I found many misconceptions surrounding in-home hospice care. Below is my brief compilation of those misconceptions, and what I’ve found to be true.
Misconceptions about Hospice
Hospice is a death sentence.
I know when people think of hospice, they think of death. And that’s partly the sad truth. However, for a person who is terminally ill, death will come with or without hospice. Hospice care seeks to make the last days, weeks, months (and in rare cases, years) more comfortable and bearable.
Hospice doesn’t administer medications except for pain control.
I’m not sure about inpatient facilities, but the only medications Mom couldn’t take were ones to treat her primary condition, which was cancer. As mentioned above, she was given anything that would help make her comfortable, including antibiotics.
Hospice is only an inpatient facility
In our town, we have a Hospice House for inpatient care when caregivers can’t provide round-the-clock care that a family member needs. But for those in situations like ours, where Dad was able to care for Mom until the end, hospice nurses assisted Dad and enabled Mom to stay at home. Should Mom’s condition have worsened to the point that he couldn’t care for her, the Hospice House was available for either a temporary or permanent stay.
Hospice is unaffordable
I’m sure every area is different, but in my area, Medicare paid for everything, including most medications. My family was out almost nothing in Mom’s 41 days of care. Before assuming in-home hospice care is unaffordable, check with your local chapter.
Hospice is only necessary in the final stages of life
While hospice nurses are glad to care for patients in their very last days, they enjoy caring for their patients early in their journeys. They get to know the patient and the family. Not only is that rewarding for them and comforting for the family to have a partner in these hard days, it also enables the nurses to administer the best care based on what they know the patient’s preferences are.
What I have written above are my experiences as the daughter of a hospice patient. Everyone’s situations are different. But my purpose in sharing this is to encourage anyone who is in the sad situation my mom was in, to consider hospice care.
Very informative and well written post. I am so sorry for the loss of your mother. I help care for husband’s elderly grandmother. With her dementia she has started declining more in the last month and I feel we will sadly be needing the help of Hospice soon. Your article has really put that in a positive light for me. Thank you for that and for sharing your story.
I’m sorry to hear about your husband’s grandmother. Such a hard time, and hard decisions ahead. I have no doubt should you call Hospice you will find them a significant help. Thank you for sharing.
I’m so sorry for the loss of your mother. I applaud you for such a wonderful post. It is so heartfelt AND informative. We are wanting to start the process early for my husband’s grandmother, but everyone thinks that it is too early. I will be sharing your post with them. Thank you so very very much.
Hi Rachel, I’m sorry to hear about your husband’s grandmother. From what I was told, the only criteria for hospice care is no longer seeking a curative treatment for a terminal diagnosis. Depending on the individual hospice requirements, a physician may have to sign something stating that the patient likely has less than 6 months to live. You might check with your hospice chapter and/or your husband’s grandmother’s doctor on that. But as I mentioned, there’s so much good to early care. It gave us all a peace of mind in the early weeks before she started going downhill rapidly. Prayers for you as you prepare to make these big decisions.