The Truth About End-of-Life Care

Many of us will face a time when we will need to take on the emotional and challenging task of caring for our parents at the end of their lives. If you find yourself in this position, it’s important to know what to expect. Here’s our best advice from three individuals who cared for their parents during their final transition. 

  1. Maintain your perspective. Declining health usually means a constant state of change, making it difficult to find stasis as a caregiver. It’s crucial to remember that this phase will not last forever, even if it feels insurmountable when you’re in the throes of it. Knowing this can help you maintain a more positive attitude and avoid feeling overwhelmed.
  2. Know your parents’ wishes. It is critical to have this hard conversation––or multiple conversations––with your parents when they’re still mentally able to express their preferences. Make sure you’re added to their financial accounts as a co-trustee. Complete essential legal documents such as a Will, Power of Attorney, Do Not Resuscitate (DNR) and Physician’s Order for Life Sustaining Treatment (POLST), which outlines your parents’ medical treatment preferences in case they are unable to communicate themselves. 
  3. Understand it’s a full-time job. Setting up doctor’s appointments, managing finances, maintaining a household, and researching healthcare options is a full-time job. Look squarely at the 24-hour period and understand who is going to be with them to provide the day-to-day custodial care. Even if you have additional help, the main caregiver still puts in extraordinary effort. It’s important to recognize the hard work and dedication involved in the caregiving process. And you can consider compensating yourself, at the same rate as hired help, through the estate. 
  4. Get professional advice. Consider working with a Geriatric Care Specialist who can provide invaluable advice on options and help you plan ahead. A more cost-effective option is to reach out to hospice sooner rather than later as it’s free of charge through Medicare. Hospice can evaluate the situation and help plan for what will be needed. Build that connection with them in advance so when they’re needed, you know who to call.  
  5. Coordinate care with family. If you have siblings, discuss how you will share the caretaking responsibilities. Be mindful that the siblings who live closer to the ailing parent may take on a greater burden, and according to AARP, daughters often end up taking on more responsibility than sons. Also, some siblings may not be interested in helping at all. Regardless of the circumstance, it’s important to keep communication lines open. Providing a written weekly update can be helpful. Be aware that resentment and frustration can build up quickly, leading to bickering and hard feelings. So, go easy on everyone. Be grateful for the help you do get. It can come from the most unexpected places.
  6. Don’t treat it like it’s a medical condition, it’s life. It’s hard and painful to accept that your parent is dying, and you should consider whether taking long-term preventative care measures really makes sense. If you are constantly chasing the medical solution, you’ll be at the doctor’s office all the time and your parent(s) will be spending time in the hospital, which adds undue stress and effort. Pare down the care to the basic minimum, and focus on keeping them happy and comfortable. 
  7. Savor the time together. Although this time is difficult, it’s an invaluable gift. Take the opportunity to create meaningful moments by looking at old pictures and videos, and reminiscing about past memories and experiences. Cook the food that your parent(s) loved and play their favorite music from the past. Consider involving their religious community by inviting people to come read or sing. These small moments of connection can be powerful. It’s an opportunity to heal aspects of your family that you didn’t address before. 
  8. Create a caregiver log. The log should include details of medications, dosages, and schedules; track vital signs such as blood pressure and heart rate, and record any changes in mood or behavior. Additionally, keeping a record of visitors and activities can help you monitor your parent’s social interactions. This log can serve as a valuable resource for doctors and other healthcare professionals, as well as for family members who may need to provide care in your absence.
  9. Secure respite care for the main caregiver. Being a primary caregiver for an ailing parent is a challenging role and it’s essential for caregivers to prioritize their own health and well-being. Find a therapist or counselor who can provide emotional support and guidance. Build a support network of friends and family members who you can lean on when needed. Don’t overlook the benefits of adult day-care centers, which can be more affordable than in-home care and provide a place for the parent to socialize and make friends. If possible, taking regular breaks from caregiving can help prevent burnout and allow you to be more present and effective in your role as a caregiver.

If you are not yet in this situation and your parents are still self-sufficient, know that at some point you may be faced with taking on the role of caregiver. It’s important to plan ahead and avoid making short-term decisions with limited options. Before your parents’ health declines:

  • Get long-term care insurance (See Big Retired Life’s post Long-Term Care: What to Know and How to Pay For It). 
  • begin discussions about moving into an independent living community or making modifications to their home so that they can age in place. (See Big Retired Life’s post Aging in Place vs Retirement Communities). 
  • If they choose to age in place, help them sort through all the stuff in their house, so it’s not left for you alone to do. 

By taking these steps, you can help ensure that your parents receive the best possible care as they age, and reduce the responsibilities placed on you and your family.

Throughout the “Sandwich Years” section of this blog, we will provide you support for launching children into adulthood while caring for aging parents.

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