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More insight into truth about hospice care

By: Julie Ann Soukoulis
April 7, 2017
Spotlight on Seniors

To conclude our discussion on the truths surrounding hospice care, I want to share some insights on the family caregiver’s role and the role that home care can provide along with Hospice.

All of these together are key to making sure a loved one’s final days are as comfortable and organized as possible. My hope is that the three-part dialogue will get you some of the information you need to help you make smart decisions you can feel good about. 

Among the most difficult aspects of hospice care are the pre-conceived ideas about end of life. There are many myths surrounding hospice and death in general. There’s much fear for the general population associated with this final phase of life.  

Facing the truth head on and taking action could be the best course for you and your family.  


The family caregiver

As we’ve discussed previously, the family caregiver plays an integral role in hospice and often serves as the primary caretaker for a family member or loved one. Having to care for a parent or family member during this time can be physically and emotionally exhausting. The dying process can bring intense emotions that require exceptional coping skills. These emotions can change daily and even hourly as the end nears. Take time to adjust so you are comfortable in this new role. Some people never become fully comfortable and feel guilty when they cannot do it. Hospice is typically set up for you and your family to be the primary caregivers, so if this role is overwhelming or you don’t have enough support, there is help.

It’s also a good time to pull the family together and determine everyone’s roles. Hold regular family conferences and make sure to keep the lines of communication open.

Here are some key roles and challenges of the family caregiver:


Hands-on caregiving: Taking care of the physical needs of a loved one will be a big part of the job of a family caregiver. You could be called on to help your family member or friend maintain hygiene habits and proper nutrition, alleviate or resolve sleeping issues and provide pain control. Nursing staffs can help teach a family caregiver common caregiving techniques based on their ability. 


Decision-making: Caregivers may be called on to take over daily decisions for their loved ones. This could become more difficult if a family member or friend becomes mentally impaired or has dementia. If that’s the case, try to put yourself in your loved one’s shoes before the illness and think about what that individual would want.


Withstanding the ups and downs: Caregiving for a loved one in hospice creates emotional upheavals. Anger is a normal and common reaction to such a situation. 

There is always room for hope. For their loved ones, caregivers can hope for a life without pain and discomfort or a meaningful time with family and friends. 


Maintaining balance: A family caregiver’s well-being is crucial. Make a point of getting out of the house periodically. 


Striving for quality: Make sure your loved one is treated with dignity and respect, and strive for quality and independence. A set routine can help both of you. 


Communicating: Create an atmosphere of give and take. Include your loved one in choices about his or her medical treatment. Be sure to include other family members as well, understanding the role they will play. Try to convey to other family members what you need. 


Getting extra support: Remember, you can’t be an effective family caregiver if you don’t have the help you need. Look to other family and friends who could help, or seek respite assistance through a home care company. Don’t feel guilty about asking for help and for going through varied emotions that can be part of the end-of-life process.


The role of home care

It’s easy for a family caregiver to become overwhelmed. While hospice care can provide much-needed support to the hospice patient, the life of a family caregiver many times includes providing personal care and everyday tasks such as meal preparation, housekeeping and errands. These duties may add more stress to the lives of family caregivers. That’s where a professional caregiving company could help. While professional caregiving support is typically funded by private pay, just a few hours a day or week could mean so much to hospice patients and their families. Professional caregivers can pick up where the hospice team and other medical services end by providing personal care, light housekeeping, meal preparation, medication reminders and errands. Make sure that the company you’re working with is trained in hospice support. One important role that a caregiving company can play is that of companionship. It may be difficult to be with a loved one all of the time. That’s where a caregiver companion can step in, providing valuable support and comfort to both a family member as well as an individual on hospice.

Professional and trained caregivers can help educate families, provide a consistent familiar face, relay information, build trust and provide daily updates. Wherever you or a loved one may be on life’s journey, take comfort that others have traveled this road and are there to help. If you are looking for more in depth navigation with hospice, please phone my office at (707) 586-1516 and we can discuss what’s available and the options you have.


In closing, I’d like to quote Barbara Karnes, RN, an award-winning end of life educator, award-winning hospice nurse and the International Humanitarian Woman of the Year in 2015, “When hospice care enters a family’s experience, that family is no longer alone. There is support during one of the biggest challenges in life.”

Remember you are not alone; we are here to help you navigate- call me!


Julie Ann Soukoulis is the owner of Home Instead Senior care office in Rohnert Park, mother of two and passionate about healthy living at all ages. Having cared for her parents, she understands your struggles and aims, through her website, to educate and encourage seniors and caregivers. Have a caregiving or aging concern? She’d love to hear from you at (707) 586-1516 anytime.