A Personal Perspective on Caregiving
Directors Message July-August 2009: A Personal Perspective on Caregiving
Many of you have asked me how my in-laws are doing, and told me that you were touched by my message a year ago when I was caring for them. The journey continues.
Sometimes it is hard to know when caregiving begins. It is often easy to miss the first signs that help is needed, especially when visits are infrequent. Parents deny and children don’t want to see diminished capacity. It is challenging to navigate the path in a way that addresses concerns, reduces dangers and preserves dignity and self-determination. There was the year of the car crash when we thought they should stop driving (she did, he didn’t). Then the years of medication errors, health crises and turning over bill-paying, then our taking the keys, making the appointments, doing the shopping, cleaning and cooking, and this year adding personal care, as frailty and confusion have grown. Somewhere along the way, the roles changed.
My sister-in-law (L) has been committed to keeping her parents at home (in Oregon), as they wished. About four years ago she moved them back home from the continuing care community when the staff started encouraging them to consider assisted living. At first, the four children visited during the summer and holidays (all from significant distance), but the emergency trips for health crises increased and it became clear that they could not manage independently. Attempts to find a suitable caregiver and a move to a retirement community failed after a significant health event, and L. found herself staying for longer stretches. Last summer we tag-teamed turns, and L. took over on Labor Day. In November she took them home with her to Hawaii after caregiving took a toll on her mental and physical health and we all encouraged her to go home.
Until this year, my in-laws insisted that they live in their home community and that they could manage on their own. Our presence was viewed as “visiting” not caregiving. Offers to live with daughters or other retirement communities were rejected. The children respected this as long as they could. When we visited in March, we helped L. explain that they could not return home in the Spring.
Caregiving on this journey has not been without challenges. All four siblings live at a distance, and three are teachers and parents. One is a pragmatic westerner in her treatment approach, while another has an eastern orientation to life. Ancient forgotten parent and sibling issues and resentments have resurfaced. These issues become more prominent as the years go by and the care needs grow. Last summer I was able to leave the house to shop or walk on the beach. Now someone must be present 24/7, so siblings are taking turns again this summer helping L and making plans for the fall. April is there now and my husband just arrived for his turn.
- Even when you deal with caregiving issues professionally, sometimes there are no clear “right” answers.
- Paid caregivers rarely give the same level of care as family members, but are invaluable help.
- Residential care is not a panacea. It helps to have a family advocate nearby.
- Not all communities are blessed with abundant services and helping organizations.
- At some point safety, health and nutrition have to trump self-determination.
- The day may come when the parent cannot competently make decisions, pass along the family history, or convey their end-of-life wishes so don’t postpone opportunities.
- It is increasingly difficult to provide care from a distance, and to balance it with work and family.
- A successful family care plan requires accommodations from all sides throughout the journey.
- Good communication is essential throughout the journey.
- Build a care network of family, friends, faith community, neighbors and professionals.
- Attend caregiver support groups. Having all family members read the same caregiving book, such as How to Care for Aging Parents can provide a common knowledge base and “portable” support group. Don’t try to go it alone.
- It is a blessing to have family and friends who care deeply and keep trying to do the very best.
Many of you may relate to these reflections—or have your own--from your personal experience. I am grateful for the things I have learned from all of you that I apply to my family, and to the things I have learned from them that I apply to my work. How can we all use our caregiving experience to inform how we become good care recipients?
Susan W. Hoskins, LCSW
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