Plan B: “What’s Next?”

Our plan was in place. After 40 years of hard work, we retired, sold our house and moved to the desert. We were living our dream.

Then at our annual wellness checkup, my husband received the news – mild cognitive impairment – which two years later was diagnosed as vascular dementia. I had been in health care as a nurse for 40 years. I knew what our journey was going to be as I would watch the man I loved slip away one day at a time. I became the caregiver.

After anger and sadness, I needed a plan to move forward. Thank goodness we were people of faith; otherwise I do not think we would have made it. I started a journal and would like to share notes hoping to assist others and save them some pain and guilt.

You cannot do this alone. Reach out to family, friends, support groups, Alzheimer’s groups and your medical team .
Have your affairs in order. Ensure that all legal matters, advanced directives, trust/will and financial matters are in place; schedule an appointment with a trusted attorney.
Do your homework. What resources are you going to need in the future: in-home care, a day program, assisted living, respite care, etc.? What are the costs? Does Medicare cover any of this? Meet with your accountant or financial advisor.
Safety is the primary goal. In creating a safe living environment, home is normally everyone’s first choice; however this may change over time.
Routine is key. Maintaining a regular routine of daily habits helps your loved one adapt. As the caregiver you will become the educator to others.
Taking care of yourself is essential. Statistics show that 30% of those caring for another with a terminal illness will pass away before those with the disease.¹

What I found most challenging was selecting others to assist in care. I learned the hard way that using an agency is the best means of ensuring competent, licensed, insured individuals to help. An agency freed me from the burden of background checks, bonding, drug testing and training, but I still had to communicate my expectations and requirements to the agency. If you hire assistance, it is important to let the individual alone to bond with your loved one; otherwise you’ll be tempted to assist.

The other challenge on this journey is accepting that change is constantly occurring and our role is to adapt, which is easier said than done. This is why it is mandatory that we carve out time to rejuvenate.

I never dreamed my life would take this turn but it did. Because I could no longer provide my husband the level of care and safety that he needed, I finally had to place him in a residential home. He passed away in hospice surrounded by myself and caring staff. I now believe I provided the best care I could and that included dignity and loving care until the end.

This is not the story most of us wish to think about as we age. However, we need to at least have a Plan B so that we are not in crisis should we or our loved ones develop dementia; it’s our insurance policy in case we need it. I share this in hopes that it serves as a gift to you and your family.

Alzheimers Coachella Valley is a community resource for dementia support and education. For more information, call (760) 776.3100 or visit www.cvalzheimers.org.

Reference: 1) https://www.agingcare.com/discussions/thirty-percent-of-caregivers-die-before-the-people-they-care-for-do-97626.htm.