When Caregivers Are Alone: Why Written Guidance Matters Most

I was asked about a caregiver who was encouraging their special person to socialize with many visitors and to eat more. The hospice nurse’s teachings and suggestions about the dying process were either not heard, not understood, or perhaps being ignored.

Not understanding how people die, and knowing that food and activity keep our bodies functioning, this caregiver, like many others, continued to push both activity and food.

This approach works when a person can get better. It does not work when someone has entered the dying process. At that point, death will come, no matter how much food is eaten or how many friends visit.

Hospice’s job is to teach and guide the caregiver through this time. One of the challenges in teaching is that people under stress, and caregivers are certainly under stress, may not remember what they have been told.

That is where Gone From My Sight: The Dying Experience (the hospice blue book) and The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death come in. These booklets offer the information that may have been forgotten from in-person explanations.

They answer the 3AM questions: “What is happening?”, “What did the nurse tell me this morning?”, and even “What was it she said last week?”

Because most people do not understand how we die, and because hospice has limited time with patients and caregivers, written information left in the home or facility can offer direction and support.

Through these words, caregivers can track what is happening to their special person and know what to do as it unfolds.

Gone From My Sight and The Eleventh Hour do not belong in the initial, papers-filled packet. They belong directly in the hands of the caregiver and are most effective when read and explained together.

These little booklets become a “carry with me” resource, a “Mom is doing what this booklet says she should be doing” reassurance. They are the “This is normal, nothing pathological is happening” guide.

These booklets do not take the place of face-to-face, one-on-one instruction and guidance, but they fill the void when caregivers are left alone caring for someone who is in the dying process.

They become the “here is what is happening, here is what you can do, you are not alone” resource—supporting and guiding families when they need it most, when no professionals are there.

Something more...

If you’re caring for someone who is dying, be sure to have something to return to, something that reminds you about what is happening and what you can do.  Gone From My Sight: The Dying Experience and The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death are discounted in The End of Life Guideline Series bundle.