It was painful for Tricia, as her father declined in his 80’s. “Dad and I shared such fun times together when I was young – he taught me how to ride a horse, shoot a BB gun, ice skate, stand on my head. He was always so active. Last year, I had to insist that he not drive anymore. Now, seeing him shuffle around just breaks my heart.”
It’s difficult to watch as your parents deteriorate. And they may complicate the situation by being in denial about their vulnerable condition. It’s up to you to acknowledge the true state of affairs and be straightforward in dealing with their increasing fragility. A number of issues must be discussed, uncomfortable as that is – health care directives in an emergency, long-term care options, the designated power of attorney, distribution of income and assets.
After evaluating the practical issues that need to be managed, you will feel more in control as you gather detailed information and make arrangements for the most immediate concerns. Like Tricia, you can recall the good times and use some of the following tips to help you plan and implement your caregiving:
1. Embrace the changes in your parents and respect their integrity. Accept them at whatever stage they are, even as they become less strong physically and mentally. Willa reminisced about her Father. “He has always been my hero. As a child, I felt safe with him because he was so powerful. Now I admire his courage and dignity, as he struggles with coming to terms with end of life issues.”
2. Spend time learning more about your parent’s illness. Educate yourself on what to expect and the resources available. Talk to friends who have gone through similar experiences in order to get realistic feedback and concrete advice.
3. Make sure that your parents are as involved in the decision-making process as they can be. Moving out of their own home may signify their loss of independence. This often creates anger, frustration, or feelings of depression. Understanding their pain and engaging a geriatric social worker or gerontologist at this time can be helpful for everyone in the family.
4. Don’t do it alone – secure help, even if it is over your parents’ objections, and have support systems in place. Reach out, create a network, hire someone to assist them as often as you think is necessary. Betty was frantic about making arrangements for her Dad after his stroke. “I was so relieved when I was introduced to the hospital discharge planner. Her expertise and kindness made the move to a rehabilitation center almost bearable.” Make good use of community interventions, respite care, support groups and adult caregiver resources.
5. Be forthright with your family. Engage your siblings in the problems and the solutions. Ask for practical help and delegate responsibilities. Have them set aside personal agendas and work together toward collective goals.
6. Some nonprofit organizations nationwide offer free services or financial grants for respite care for family members who provide most of the care to their chronically ill elders. The federal government, through the National Family Caregiver Support Program, provided funds for respite care to over 190,000 families in 2004. To learn if there is a program in your local community, go online to Eldercare.gov and look for the Eldercare Locator, or call 1-800-677-1116.
7. See the present challenge as a teachable moment and make the most of learning whatever you can. Apply these lessons to other areas of your life. What insight have you gained about dealing with your own aging process? How can you talk to your children about your wishes when you become older?
8. Look for the positives in these tough times. Gloria was learning a lot about herself as she cared for her Dad in the last months of his life. “I had never really been tested like this before. Sometimes caring for him seemed like more than I could endure, but I kept going. Now I know how strong I can be.” In the end, think less about what you’re losing and more about the chance you may be gaining. This could be the only time in your life that you have the opportunity to give back to your parents emotionally what they have given to you.
9. As you are discovering more about developing your own capacity for resiliency, you will find the way to nourish yourself. You may call on your faith, your spirituality, or your sense of humor. Rely on whatever sustains you during these most difficult moments.
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