My dad is a 92-year-old Holocaust survivor. He has been strong and independent, but was recently diagnosed with a slow-growing cancer. Without upsetting him, I want to discuss what his wishes are if he loses his independence. I worry how it will be when he gets close to dying. What can I do? — J.F., Concord
This is a very challenging conversation to have with someone who witnessed death during his youth and managed to live through such a dark period of history. I would like to share my personal journey as the daughter of a survivor and what I learned in the midst of pain. I hope my personal experience can empower others who face similar issues. And from the lens of a geriatric social worker, I can attest to the fact that older adults who experienced trauma in their lifetime have a more difficult time with end-of-life planning.
I often thought of having “the conversation” with my mom, who was a Holocaust survivor. I tried several times, but it never quite happened. When my mother entered her eighth decade of life, I felt an urgency to get this done now or never. After all, 55 percent of adult children do talk to their parents about what to do if the parents can’t live independently. As a geriatric care manager, I have coached these conversations with family members numerous times. But every time I tried to talk to my own mother, she broke down, and I knew from her emotions and body language that if I continued, the consequences would forever haunt me. My professional skills didn’t work in this case.
How could they? At 19 years old, my mom walked through the gates of hell at Auschwitz and Bergen-Belsen. She fought valiantly to survive and helped others to do the same. In spite of starvation, forced labor with almost no clothes or shoes in the cold of winter, witnessing and experiencing atrocities, including those of Dr. Mengele, my mom survived.
How do you talk about planning for the end-of-life when someone went through the unspeakable to survive? My mom just couldn’t do it. And then a major stroke came suddenly and she lost capacity. Her speech was garbled and it was difficult to assess what she wanted. One thing I knew for sure — she was distressed and horrible images of her past were invading her remaining memories. We suffered together and I did everything I could think of to make her more comfortable. Most of all, I loved her more than ever, but I could not protect her from the inevitable.
Six months after the stroke, my mom died. My memories of those six months of her life have vividly stayed with me, as do the ongoing repercussions from the Holocaust. We know that although the Holocaust happened more than 70 years ago, the tragedy, loss and grief permeate lives and families of several generations. We also know that as survivors approach the end of life, memories of the past intrude, triggering again a survivor’s need to fight for survival and avoid death at all costs.
All of this makes it common, and in fact understandable, for some survivors to resist making formal arrangements about the final phases of their lives. But even without a formal plan in place, there are steps you can take to make this time period as stress-free and smooth as possible for your dad.
On a practical level, it is important to have advance health-care directives in place, assigning you as his agent. If your dad will allow you to accompany him to his doctor, try to facilitate a discussion about a Physician Orders for Life-Sustaining Treatment form (POLST, information at www.capolst.org). This is also the time to add your name to your dad’s checking account. Go to the local branch of his bank, introduce yourself, and find out from the banker what you need to do. Especially important is knowing where your dad’s important documents are kept. And I recommend finding out which types of Holocaust restitution he is receiving. These benefits require an annual signed and notarized certificate of life.
On an emotional level, there are a number of things you can do to soothe and comfort your dad. Because you can’t be with him all the time, you might consider hiring a companion or caregiver who is well trained in the area of trauma. Your local JFCS can help you locate and hire this type of skilled caregiver, who can be with your dad, comfort him, massage his hands, and reassure him of his safety.
It’s extremely important to educate all team members who are caring for your dad — such as facility workers, care providers and hospice/palliative care nurses — about what your dad lived through during the Holocaust. This will help them understand what may trigger your dad emotionally and take him back to his tragic moments. This triggering sometimes manifests itself as behaviors that are labeled as problematic by staff who are not familiar with treating Holocaust survivors and don’t understand their history. By identifying triggers, you can take steps to minimize them and alleviate complicated suffering. All of this will help keep the survivor calmer and safer.
And facing your dad’s final phase of life will of course also be stressful, difficult and painful for you. Be sure to reach out and find your support system. Many JFCS agencies have support groups for caregivers, or you can set up individual sessions with a therapist or social worker. If you are working with a hospice agency, it may have pre-bereavement counseling that you could use. And if you have family members who can be supportive and help in any way, this is a good time to call on them.
While we cannot change our Holocaust survivor’s past, we can offer respect, dignity and love and provide a compassionate support system as their years come to an end.
Rita Clancy, LCSW, is director of adult services at Jewish Family & Community Services East Bay. Her columns appear regularly in J.’s Seniors sections. Have questions about your aging parents? Email firstname.lastname@example.org or call (510) 558-7800 ext. 257.