Successful Aging: Difficult decision over care optionsPosted on December 30, 2013 by ElderCare Resources Phoenix in Blog, Caregiver Education, Education, Geriatric Care Management, Home Care Non-Medical, Home Health Care Medical, Hospice & Palliative Care, Long Term Care Information, Respite Care
Q: After a long chronic illness, my husband — the love of my life — recently suffered a serious stroke and is in the hospital. He is now stable and we are faced with the difficult decision as to what’s next. I’m not sure how long he will live and fear he will just wilt and possibly die in a rehabilitation center or nursing home. If he comes home he will require 24-hour care, which is very expensive. The rehab center will likely provide more physical therapy than what he will get at home. I just don’t know what the future holds — hospice, getting better or just staying the same. I am stressed and exhausted. Any words of wisdom? Many thanks. — B.E.
A: The situation you face is emotional, complex as well as potentially expensive. Throw in fatigue, uncertainty and love, and your exhaustion is understandable. Let’s begin with a few practical thoughts.
Consider having a serious conversation with his physician. What is the outlook for your husband, his recovery and needs? Ask a most difficult question — “Is hospice warranted?” Generally a six-month life expectancy is a rule of thumb.
On a lighter note, while in hospice, the late columnist Art Buchwald was given two to three weeks to live. He defied the odds and lived for 11 months and has been quoted as saying, “I never knew how many perks were involved with dying.”
During his 11 months, Buchwald held court in a beautiful living room with a constant flow of visitors such as former Sen. John Glenn, Jack Valenti, Ethel Kennedy and more. He marveled that there was no diet and could order out McDonald’s hamburgers and milkshakes. During that time, Buchwald wrote “Too Soon to Say Goodbye” (Random House, 2006) and canceled his own funeral.
One moral of this story is that none of us know when our final exit will occur, despite medical predictions.
Now let’s return to your question. Consider speaking with your husband about his preferences. Assuming a stay in a rehabilitation facility is appropriate, the frequency of having more physical therapy may lead to faster and perhaps better recovery — a possible selling point. If that’s the decision, consider giving him a guaranteed exit if he is unhappy there. For example, “Dear, if you are not comfortable at the facility, call me immediately and I promise you that I’ll pick you up in 24 hours and take you home.” Offer him as much control as possible and reasonable over his destiny.
Although this is no consolation, you are not alone. According to the National Family Caregivers Association, each year more than 50 million people provide some caregiving services. Eighty percent to 90 percent is provided by family members.
Here are some additional facts that give us a picture of caregiving in the U.S.:
• In 2007, the estimated annual value of caregiving was $375 billion. That amount is comparable to Wal-Mart’s total sales in the same year. Although this information is somewhat dated, today’s cost would not be less.
• Almost one-third of family caregivers for older adults are 65 and older.
• Family caregivers who experience a high level of stress can age prematurely, shortening the life of a family caregiver as much as 10 years.
• Those providing elder-care services have yearly out-of-pocket expenses, on average, of $5,531.
• California, the state with the highest number of people 65 and older, also has the largest number of family caregivers in the U.S., almost 3.5 million. The state with the next largest number of comparable caregivers is Texas with just over 2 million.
A big challenge is “managing it all.” Here are just a few tips to consider:
• Take some time off from caregiving responsibilities. Perhaps another family member or friend can fill in to provide some respite for you.
• Take care of yourself. Remember the importance of exercise, nutrition, sleep and managing stress. In a quiet moment, write down all of the healthy things you are doing. Then write the changes you want to make and the resources that can support you. Then, in the Nike tradition, “Just do it.”
• Identify what brings joy into your life. Incorporate at least one “joy item” into your daily schedule. It could be a walk at the beach or coffee with a friend.
• Consider contacting a caregiver support group in your area. For up-to-date information and support, contact USC’s Los Angeles Caregiver Resource Center at 800-540-4442.
B.E., best wishes for your husband’s recovery. And best wishes to you for health and resilience during this difficult time.