Diary of a long distance caregiver: The final chapter

Published: June 13, 2012 

In my previous two articles, I covered some planning issues I dealt with as a long-distance caregiver when my mother was diagnosed with Alzheimer's disease five years ago. This is the conclusion of my story.

To view all three articles in full, go to www.srqwealth.com/Blog.

While my mother was still at the rehabilitation center to regain her strength after a three-week hospital stay, I realized that, when discharged, we weren't equipped to continue her recovery at home. My father couldn't fully care for her. What if medications were forgotten? What if she fell? What about her personal care needs? The rehab center's social worker offered to coordinate necessary services, but without seeing mom since her illness since she lived in Ohio and I'm in Florida, was this good enough?

On the National Association of Professional Geriatric Care Managers' website, (http://www.caremanager.org), I found a local care manager who understood my mother's needs. His job was to coordinate mom's home health services, and if not effective, make proactive changes in her care regimen. If she could no longer live independently, he would advise about that, too.

Such professional assistance is one solution

for long-distance caregivers. Costs run from $80 to $200/hour. While these services aren't currently covered by Medicare, some long-term care insurance might. Even if "out of pocket," this expense may still make sense, when considering a caregiver's time off work, travel costs to visit and not knowing how to work the senior care "system."

While I seriously considered hiring this care manager, it turned out to not be necessary. Ten hours after Mom's rehab center told me her release date, my brother called at 1 a.m. Mom was found unconscious in her bed and rushed to the ER to revive/stabilize her.

She survived a cardiac arrest, but remained in a coma. After two weeks of medical evaluations, we received a "no hope for recovery" diagnosis from her doctors.

While we'll never know exactly what happened that night, because her living will was current, we knew her wishes going forward, and my father followed them. Her transfer to a hospice facility went seamlessly, a great comfort to our family.

Hospice gave Mom excellent care and great support to my family. I cannot say enough good things about them. Hospice services can include nursing care, doctor services, personal care and counseling services, to name a few. They can administer medication for patient comfort only. Medicare Part A insurance covers Hospice care, provided a doctor certifies the patient is terminally ill. For a family about to lose a loved one, that's one less worry. I was able to spend five days with mom at hospice before she passed away -- a time I will always cherish. She never regained consciousness, but somehow I think she knew I was there.

I could never get my parents to talk about what arrangements they would want after they passed away. Traditional burial? Cremation? What about their remains? Faced with this now, we made decisions the best we could with the help of a local funeral home but a written list of Mom's wishes would have helped. Long-distance caregivers should encourage loved ones to document this well in advance. It's one "gift" they can give to the family they leave behind.

Our planning for the last years of my mother's life could have been better no question about it. Based on my experiences, here are some lessons I learned that may help others with a long-distance caregiver in their life:

n Have current estate documents in place -- especially health care powers of attorney and a living will. Review them for possible updates every five years.

n Evaluate your need for long-term care insurance. Know the risks you are assuming by not having it.

n Do what you can to stay healthy in retirement. Be careful about what you can control (e.g. diet, exercise, sleep, etc.). This is a financial planning tip because there's nothing worse than spending more retirement funds on medical bills than travel, golf and tennis or spoiling the grandkids!

n Have contingency plans for your care in case something should happen to you. Make sure your loved ones know what you want if your health fails, and that they have contact information for neighbors, friends and support people who could help in a crisis.

n Pre-plan your funeral and document your wishes. Don't make your family guess about this in their time of grief.

n Don't wait until a crisis hits to do any of the steps above. Then it may be too late. Have a financial planner proactively to review these topics with you.

Karin Grablin, a financial adviser with SRQ Wealth Management in Sarasota, can be reached at 941-556-9004.

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