May 22, 2024

Four years ago this last March, our DayBreak Caregiver Support Group came to be. Owing to the "Shelter in Place" mandate, caregivers were unable to continue attending our support services and day programs. How to reach out and lend support and guidance became a conundrum. Enter the advent of utilizing Zoom.  It now became possible to create a welcoming, accessible resource for caregivers to come together, to support, and be supported by fellow caregivers. It proved an accessible venue; one that allowed each caregiver an  ease to reach out from all corners of the county, the Bay Area,  from the convenience of their own homes.  

As a result, a warm, loving, inclusive community came into being. Over time, we have seen one another navigate through the good times, and the not-so-good.  We have learned valuable lessons from what works, what doesn't work and what might work better. Experience is the greatest teacher, and for many, each has moved well into their post-graduate thesis. New members are warmly received, some are charter members from the beginning. Seems nothing binds us together so much as a "knowing" birthed in shared experiences, while accepted unconditionally.

The unspoken awareness each caregiver shares is the knowledge that their loved one with cognitive/physical decline has a terminal illness. One could argue that that applies to all living creatures.  And yes, this is so.  However, caregivers are aware that the rapid trajectory for their loved one is much more predictable. Each day can be precious, each sign of decline, alarming. Each moment is an opportunity to treasure time together; to create new memories.

This past week, one of our dear, wise, and much loved caregivers "of long-standing" saw the passing of her beloved husband. Each caregiver felt a kinship with him, as well. The community moves to wrap our virtual arms around her and share our love and profound support. The depth of connection, the intimacy of members showing up, "warts and all", creates a bond rarely seen in "polite society." It continues to be a "come as you are '' connection, with unconditional support and acceptance as the cornerstones. When they triumph, we celebrate...while  in the depths of loss, we grieve, as well.

DECIDING TO CARE FOR A TERMINALLY ILL

FAMILY MEMBER AT HOME:

Some questions to ask yourself when deciding to undertake end-of-life care for a loved one at home:

• Has your loved one set forth their preferences for end-of-life care that include remaining at home?
• Is qualified, dependable support available to ensure 24 hour care?
• Will your home accommodate a hospital bed, wheelchair, and bedside commode?
• Are transportation services available to meet daily needs and emergencies?
• Are you able to lift, turn, and move your loved one?
• Can you meet your other family and work responsibilities as well as your loved one's needs?
• Are you emotionally prepared to care for your bed-ridden loved one?

PROVIDING COMFORT FOR COMMON SYMPTOMS:

• DROWSINESS: Plan visits and time together when your loved one is most alert
• BECOMING UNRESPONSIVE- Many loved ones are still able to hear after they are no longer able to speak...(hearing is the last faculty to function) Music, talking and reminiscing, reading out loud, even, can be of comfort and value.
• CONFUSION ABOUT TIME, PLACE, IDENTITY OF LOVED ONES: Speak calmly, gently remind them of time, date, people who are with them...avoid "correcting," or the dreaded, "don't you remember!?"
• LOSS OF APPETITE, DECREASED NEED FOR FLUIDS: Let your loved one choose when and if they wish to eat, drink...ice chips, water, or juice may be refreshing, if they can swallow, ice chips can be soothing.
• SKIN COOL TO THE TOUCH: Warm with blankets, regulate if too warm
• MANAGING PAIN AND DISCOMFORT: Requires daily monitoring and reassessment of your loved one's subtle nonverbal signals. Slight behavioral changes can indicate their needs aren't being met. 

Communicating such changes to your loved one's medical team will provide valuable clues about their level of pain. You can also ease your loved one's discomfort through touch, massage, music, fragrance, and the sound of your soothing voice. Experiment with different approaches while observing their reactions.

PROVIDING EMOTIONAL SUPPORT:

• KEEP THEM COMPANY: Talk to your loved one, read to them, watch movies together...even if they don't respond, or simply sit and hold their hand.
• DON'T BURDEN YOUR LOVED ONE: Avoid expressing your feelings of fear, sadness and loss. Instead, talk to an understanding friend or support group.
• ALLOW YOUR LOVED ONE TO EXPRESS THEIR FEARS OF DEATH: It can be difficult to hear someone you love talk about leaving family and friends behind, but communicating their fears can help them come to terms with what's happening. Try to listen without interrupting or arguing. A soothing, supportive presence speaks louder than words. If they express regrets, assure them that they did the best they could, at the time.
• ALLOW THEM TO REMINISCE: Talking about their lives and the past can be another way of gaining perspective on their life amid the process of letting go.
• HONOR THEIR WISHES: Reassure your loved one that you will honor their wishes, such as advance directives and living wills, even if you don't agree with them.
• RESPECT YOUR LOVED ONE'S NEED FOR PRIVACY: End-of-life care for many people often presents a battle to preserve their dignity and pride, and mindful attention in this regard is often necessary.

COPING WITH GRIEF AND LOSS AS A LATE-STAGE CAREGIVER:

While the death of a loved one is always painful, the extended journey of the disease such as Alzheimer's, or related terminal illnesses, can give you the gift of preparing for, and finding meaning in, your loved one's end of life. When death is slow and gradual, many caregivers are better able to prepare for the emotional and practical aspects of loss. While it won't limit your grief or sense of loss, there is the possibility of mindful attention, and intention, available that allows for the making of "new memories." The space for saying what needs to be said, sharing what needs to be shared. Finding time for meaningful exchanges, practicing patience when on your "last nerve". The opportunity to open to acceptance over resistance.

Many caregivers have shared that they were much stronger than they thought they were; more adaptable than seemed possible... "what doesn't kill us makes us stronger?" Ask a caregiver! Talking with family and friends, consulting hospice services, bereavement experts, and spiritual advisors can help you work through difficult feelings and be better equipped to focus on your loved one. Hospice and palliative care specialists and trained volunteers can assist not only the dying person, but also caregivers and family members, as well.

A few final words to our incredible caregivers: 

• "There will come a time when your loved one will be gone and you will find comfort in the fact that you were their caregiver." - Anonymous
• " We are crucial; we need support, we keep going… we are not alone, we are a force to be reckoned with!" - A Fellow Caregiver
• "My caregiving journey is challenging, but I do not journey alone, and my best is enough" - Caregiver Support Group Member
• "May I be gentle, remain mindful, and seek support when I need it, so that I might then say good bye with no regrets." - Anonymous



We cannot avoid the pain of loss, but try to remember that a healed bone is stronger at the point of the break; And so it is.

— Karen Kelleher, M.A.

DayBreak Family Caregiver Support Coordinator

With your support, we can continue to provide vital resources and assistance to elders and caregivers who need it most. Join us in making a meaningful impact.

DayBreak is dedicated to empowering elders and providing unwavering support to family caregivers. If you know an older adult in need of our comprehensive care and coordination services, or a caregiver seeking assistance, please encourage them to reach out to us at:

510-834-8314