Having recently received an email notice from an online health related news service, I was drawn to and intrigued by two pieces about long term care and family care giving. Within seconds I found myself clicking on link after link to see what information and materials I could find that might be applicable to our family’s current situation. I read about additional efforts to provide resources to conduct research on end of life and care giving issues. And we found organizations offering help to family caregivers.

In retrospect many of the signs and symptoms had been there for weeks maybe even months. Fatigue and weakness, weight loss, loss of appetite. “Meryl”, he said, “I am just not feeling well.” But it was more than just being 81 years old and feeling tired. It was more than mourning the loss of his wife (my mom) who had died two years earlier. Dad had been recently diagnosed with stage 4 pancreatic cancer. As he says, “the news was ominous”. For us, the news was indeed emotionally difficult as we discussed and negotiated how to help dad through the weeks and months ahead.

So began a virtual journey as I traveled the equivalent of what must be thousands of Internet miles seeking as much information as I could from dozens of web sites about home health and personal care services, hospice, family care giving, home health care, and end of life care. There in front of me were pages and pages of sites with information. So, what do we do? Hundreds of questions with no right or wrong answers.

Immediate questions included:

- What is the prognosis? Do we get second opinions? Where and how?
- What if any are the treatment options?
- What options are there for hospice and palliative care? in home or in a facility—which facility.
- How can we find a home health care provider? What are the costs and will they be covered? Does your agency use employees or independent contractors? Are they insured, licensed and bonded?

These first set of questions are now overshadowed:

- Where is the air mattress that the doctored order a week ago?
- The wheelchair is too wide to fit through his doorway, is there one that is narrower?
- We need the manual for the glucometer, can you send it?
- We ran out of lancets to test his blood, can you send someone over as soon as possible?
- What size adult diapers are available? Do they have fasteners?
- Does the podiatrist make house calls?

So, I find myself once again caring for an elderly parent, who lives 1000’s of miles away and who is facing a terminal illness replete with many end of life decisions—- logistical issues are often overshadowed by numerous philosophical, spiritual and emotional considerations. Let alone having to balance the very well meaning intentions of many family members and friends.

As of now, Dad still knows who were are and he knows where he is and he knows who is running for president (and still has a rather strong opinion about it) and he can hold a conversation with anyone who wishes to engage him in discussion (in fact he can hold a conversation in several languages). And he can still balance his check book in his head.

BUT, I can tell you that at least from my perspective navigating the realities about end of life, terminal illness, and family care giving (from afar) is remarkably more emotionally draining, perplexing and challenging than researching about it.

Related posts:

1. Actively Dying Continued
2. Dying to Give Life
3. Signs and Symptoms

This entry was posted on Wednesday, October 22nd, 2008 at 10:01 am and is filed under Caregiving. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.