This is the first time I am dealing with the death and dying process as a caregiver. And it is much more trying than I imagined. As a caregiver, I have to make heart wrenching health and financial decisions all while being very emotional.
One thing I am learning is that death can take a long time. We were told by doctors that my aunt, whom I help care for and am the financial guardian, was close to death numerous times. She was moved to Hospice which takes patients who are expected to die within two weeks. She has been there almost a month.
This past month, my aunt was hospitalized for a gravely low blood count for the second time. She wasn’t eating or speaking. She was in a deep sleep that she couldn’t wake from. It was terribly frightening to see her like this.
After a few days at the hospital and blood transfusions, she wasn’t recovering. She was approved to move to Hospice. When I visit her, I pray for her to respond in some way. 99 percent of the time she doesn’t, but I rejoice for that 1 percent.
Her condition changes almost daily. One day she won’t wake up or eat. The next day, she’ll eat, but her breathing is labored. It’s a constant unknown and a merry-go-round of emotions. Hospice is paid for by Medicare and must abide by their rules. If a patient’s condition doesn’t worsen, she cannot stay. So this makes it even harder to cope.
I don’t want my aunt to return to the nursing home because I feel they won’t give her the care she needs and deserves, especially during the death and dying process. In Hospice, the patient to nurse ratio is much lower than in an SNF. The facility itself is much more inviting. There are no smells of urine. No patients crying out.
Therein lies the dilemma. I don’t want my aunt to get worse because that means she is closer to death. But, I don’t want her to leave the Hospice facility. How do I wrap my mind around this? How do I deal with the sorrow and the reality?
Hospice offers counseling to family. I have spent a lot of time speaking with their social worker and the nurses. The doctor understands how hard it is to grapple with all of this. I’ve cried and laughed with them. I am humbled by their ability to give loving care and to let go. They also allow a Hospice nurse and aide to visit patients in SNF’s so that eases my mind a bit.
I am grateful for the AARP Caregiving Resource Center which provides information and resources about Hospice and death and dying. I am thankful that my aunt made her wishes known via a Living Will while she still could. I am blessed to have online friends who support me during this difficult time.
In the end, her death will be filled with grief. But knowing that I fought for her to die with dignity will lessen the pain.
I am part of AARP’s kitchen cabinet on caregiving. All opinions are my own. This is a series of posts on the topic of caregiving. This post and my social media involvement are compensated.