After struggling to give her mother a bath for 45 minutes, Rene’s patience was spent. Her mother’s Alzheimer’s caused her to resist the bath, and Rene had to deflect her flailing arms and verbal assaults. With no time to take a bath herself for the last three days, she now sat down, exhausted and angry. Looking up with tears in her eyes, she whispered, “Why doesn’t she just die already?” She quickly censored her statement and declared, “What a horrid daughter I am to wish that!”
In progressive illness, the focus is necessarily on the care receiver. Yet the greatest suffering may be that of the caregiver, who can be emotionally, physically and even financially depleted. Perhaps you have put work or family life on hold to tend to an ailing family member. And after weeks and months, the strain is increasingly difficult to endure.
Quality of life issues impact both care receiver and caregiver. However, the needs of the ill person often take priority, while your own basic needs may go unmet. Over time, those unmet needs can create resentment. Yet when you imagine the scenes you see in movies that show endlessly loving and patient caregivers, you may feel a sense of guilt, selfishness and inadequacy.
Your neighbor talks about how honored she is to care for her husband 24/7. Is she telling the truth, you wonder, or is she also hiding behind a mask of hearts and flowers to hide her fatigue and frustration? Does she sometimes think, “I wish this was over?” You question reality. You want to slap her and find out.
Does this sound harsh or familiar?
Sometimes your suffering is compounded by the fact that your loved one has already had an existential death due to dementia. This is not the person you grew up with or married. There is no more meaningful conversation or shared laughter — no gratitude for the work you are doing. You are working for someone who may no longer recognize you, or who may even fight you as you attempt to provide care.
Prolonged caregiving of the dying can precipitate a troubling burden. You may entertain thoughts like, “I wish this was over!” and feel guilty for thinking them. Does this mean you do not love that person? Of course not. Does it make you a poor or heartless caregiver? No! It means you are human. You share these unspoken truths with many other caregivers. But because everyone censors their true feelings, you feel alone.
Give your suffering a voice and tell someone you can trust, someone who can understand and not judge you.
Attend a caregiver support group. Let off steam by exercising, journaling, painting or even breaking something you will not miss. If your loved one is in hospice, confide in the social worker. Talk about managing triggers and balancing your own needs with those of the person you are caring for. Talk with the chaplain to seek comfort, forgiveness and meaning. Use volunteer support or a respite stay on an inpatient unit so you can take time out.
Caregiving can be both an honor and a burden due to the many ups and downs. Forgive your loved one for “taking too long to die.” Forgive yourself for wishing it was over. Put down the mask and share your truths and find the support you deserve.
Part 2 will focus on dying too soon, forgiveness and complicated caregiving.
Tani Bahti, RN, CT, CHPN, offers practical guidance to demystify the dying process. A RN since 1976, Tani has been working to empower families and healthcare professionals to enable the best end-of-life experience possible through education and the development of helpful tools and resources. The current Director of Pathways, Tani is also the author of “Dying to Know, Straight Talk About Death and Dying,” a book that SevenPonds considers one of the most helpful books on the subject available today. Founder Suzette Sherman says, “This is the book I will have at the bedside of my dying parents some day, hopefully a very long time from now.”