This excellent blog post from the Care Givers website reflects upon support caregivers need up to and including a vigil with their loved one. In this context the discussion describes limitations of hospice in certain caregiving settings.
Some pertinent quotes and thoughts from a caregiver's perspective about hospice and being supported as a caregiver vigiling. This came from the caregivers.com website blog by Care Givers blogger and author Martha Stettinius. Please visit the website using the link below to read the entire article, which is quite informative.
In this post I explore a difficult, and perhaps controversial, question: Do hospice services support us adequately as family caregivers when our loved ones are actively dying?
I’m not talking about the months or years leading up to death—a period during which hospice usually provides excellent physical, emotional and spiritual comfort—but rather the final days of a person’s life. Even if we have hospice nurses on call, family caregivers often find ourselves alone with our loved ones as they actively die.
If your loved one lives in an elder care facility, or at home, it’s important to know ahead of time that the hospice team (which includes nurses, social workers, home health aides, volunteers, chaplains, and bereavement counselors) will visit you and your loved one only a few hours a day or week. Only in a stand-alone hospice care residence (an “inpatient” hospice facility) will your loved one receive around-the-clock care, and you around-the-clock emotional support.
Hospice works differently in different settings (and states have different regulations). Hospice care outside of a hospice care residence may not always provide the level of support that we need as caregivers to lessen our fear and anxiety. When we sit vigil at a loved one’s bedside, and witness the active dying process over days or weeks, we need the highest level of support possible.
Let me explain what I mean by sharing my experience with hospice when my mother died. I can’t generalize about everyone’s experience with hospice based on my experience, but I do think that my story illustrates the limitations of hospice in certain situations.
The limitations of hospice become most apparent in two scenarios, I believe:
1) when a loved one declines rapidly, without warning, and has not already qualified for hospice; and
2) when a loved one dies at home, in assisted living, or a nursing home, rather than in a hospice care residence.
Recognizing what is normal
My husband and I did not know what was normal in the dying process...All of this felt traumatic, and I grieve to this day for the unnecessary pain that Mom endured.
Consider a hospice residence
In 2012, 27% of hospice patients received hospice care in a hospice care (“inpatient”) residence...consider moving your loved one into such a residence, where your loved one will receive attentive care around-the-clock, and you, as their caregiver, will be less likely to feel panicked if something happens that you don’t expect, or to fear that your loved one is not receiving enough pain relief.
Find Support for Yourself
I encourage you to plan ahead as best you can for hospice services that will support you as a caregiver as well as your loved one. Know, however, that sometimes the best-laid plans go awry...As caregivers we do the best we can to protect our loved ones and be there for them, but it’s helpful to recognize our own need for support as we face the unknown.
Click here for a link to the blog with the full article...well worth the read.
Greg Schneider
Founder & President, HVA
HCF Creator
Replies
In general, person-centered care was needed at all levels. Hopefully, continued nursing home reform will provide that.