— I’ve lost two wives and I know there can be a better end-of-life experience and a better grieving process
When I tell my “how I got here” story, the usual responses are sad looks and a weird sigh that most seem to think fits responding to loss. You know that experience, especially if your partner has died. It’s one the grievers I work with learn to loathe.
It’s confusing when you smile in response. You are supposed to be sad, perhaps a bit hopeless, and, very possibly, needy. You have a role to play. And while we may be sad at times, we need to smile and feel capable just like everyone else.
You can insist that you are treated as a couple, not a caregiver and patient.
After the losses I’ve experienced on the ‘bingo card’ of life, my take on how to do illness, dying and grief is a bit different.
Working in hospice as a social worker and administrator added to that shift, and quite possibly to my sense of humor in talking about it. Hospice staff have a bit of a twisted sense of humor simply to survive, but we don’t take it out to share in public. We should. Research shows that families experiencing terminal illness need humor in those around them. Remember the cemetery scene in the movie “Steel Magnolias?”
A Need to Take Control
They also need a sense of control. Dying is not like the movies; it takes work, but there can be some magic in the end. It needs to be actively managed, not something that takes control of your life: the couple should make the decisions, with education, great hospice care and setting boundaries to preserve their roles.
You can insist that you are treated as a couple, not a caregiver and patient. You should be allowed to use your anticipatory grief together to finish your relationship, and to say goodbye in a way that works for you.
Terminal illness can be sneaky. You cope with the disease process and adapt, over and over. And suddenly that ongoing disease is now going to be terminal.
My first wife, Linda, survived metastatic breast cancer — but died of pulmonary fibrosis a decade later from chemo. My second wife, Casper, (yes, she was named after a friendly ghost) died of Lewy Body Dementia. Think Robin Williams, but not the funny part. That started with a weird assortment of symptoms that were repeatedly misdiagnosed. Her final diagnosis was months before she died, and only after I asked if that was what we were dealing with.
It was managing their illnesses and symptoms that allowed control over some of the craziness that is today’s medical system. (That, and being an outspoken wife who is also a social worker, much to their dismay at times.) I am not alone in that experience.
Steps to Take to Manage a Loved One’s Illness
So how do we manage facing ongoing illnesses that have the potential for becoming life shortening?
- Document! I know, it takes time, and it feels unending. It’s hard to look at the words. Do it anyway. What are the symptoms throughout the day? What level is the pain? What works? What doesn’t? Who have you talked to? What have you been told? Take a medical notebook with you to every appointment.
- Write a summary for doctor’s visits. Use bullet points for easy reading. Write down what you need from the visit. Expect care that meets your needs and follow-up.
- Find an online community of caregivers/patients. They get it, where others will not. And they share survival humor.
- Get your advanced directives done. Get paperwork in order: A POLST (Physician’s Order Regarding Life Sustaining Treatment), trust or will, caregiving plan, end of life plan, memorial plans. Consider hiring a private end of life doula. There are some great books out now (“I’m Dead, Now What?” is popular). The National Funeral Directors Association has some helpful resources about having hard conversations. Unfinished plans and paperwork make things harder, and take away your control when others step in to do them for you.
What happens when the illness gets worse? It would be nice if doctors would tell us that our loved one is now considered terminally ill, but the reality is many will not. Many physicians do not tell families or patients when an illness is no longer treatable. Some will mention palliative care to open the conversation, but won’t say hospice.
The National Hospice and Palliative Care Organization offers information about hospice care; hospice can extend life because a good care team reduces stress, and the support provided allows the patient and family to use their energy on quality of life, not battling insurance companies, pharmacies and unrealistic expectations of one another.
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