How to work with siblings in caregiving

Healings in Motion Founder, Mary Nicholson and Caregiver Companion Author, Carolyn A Brent, Discuss New Technologies Available to Assist Caregivers, Sibling Rivalry, End-of-Life Issues and Other Caring Tips

Carolyn_Headshot_Feb_10_2013Today I have the great pleasure of being the host on Day 9 of the Virtual Blog Tour of author Carolyn A. Brent whose book The Caregiver’s Companion: Caring for Your Loved One Medically, Financially and Emotionally While Caring for Yourself is celebrating its big Amazon launch NOW!!!

Carolyn A. Brent is a nationally acclaimed author, speaker and caregiver advocate. She has dedicated her life to preparing caregivers and their loved ones to face end-of-life issues. Carolyn is the founder of Caregiver Story, a non-profit organization that provides free medical, legal and wellness resources to the public.

Yesterday, Carolyn visited Erica Pooler at http://bit.ly/1C06fqV, where Erica interviewed Carolyn on the subject of caregiving not just for the elderly, dealing with family disagreements and abuse.

Today, I’d like to share with you a recent interview I had with Carolyn when I got to speak with her on the subject of caregiving relating to technology, spirituality and avoiding sibling rivalry and surrendering your loved one’s care. I hope you enjoy it.

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Mary Nicholson:  Health care and Caregiving services have taken a big leap with the use of telehealth and telemedicine.  What are some of the products, resources or tools used that can assist working family Caregivers and give them more time for self-care?  Example:  onKol -monitoring loved one and helping to maintain a family connection, neurometrix (wearable pain relief, Caregivers can start crockpots from their Smartphones, etc.)

Carolyn A. Brent: Yes, modern technology in telehealth and telemedicine has and will continue to evolve—meeting the needs of our aging population. When I was a caregiver, I created a huge binder, which contained all of my dad’s medical records from five medical professionals, and three different healthcare institutions. I carried this binder with me to all of my dad’s doctor appointments keeping each physician updated with dad’s medical history.

Now, telehealth and telemedicine offer various benefits as an alternative to traditional in-person medical care that allows a physician easier access to both medical records and get expert opinions from doctors in other locations. Telemedicine allows physicians to evaluate, diagnose and treat patients remotely using the latest telecommunications and robotics technology. In many circumstances, telemedicine offers various benefits as an alternative to traditional in-person medical care, especially in areas where there is limited access to medical care.   A few examples are:

  • When patients are unable to travel to receive traditional care.
  • Reduce the costs associated with regular office visits by the use of video conferencing, and other resources.
  • Popular way to administer preventive medicine and manage chronic conditions.
  • Telemedicine allows hospitals to create networks to provide consistent care, reduce medical errors and monitor a patient’s vitals and much more.

As a caregiver one of the major concerns is having a “peace of mind” knowing that your loved one is safe, and being cared for properly. Today’s technology offers the “peace of mind” you are looking for.  In addition to the new onKol monitoring system, other options are:

  • Have regular check-ins or conferences.
  • Use a free computer-based phone system, such as Skype, for conference calls, or just hop on a phone bridge line, such as FreeConferenceCall.com.

Mary Nicholson:  Discussing end of life issues is challenging for both the Caregiver and for those having to face issues related to that part of living called death, especially when there is denial on either side.  How and when do you gently tackle this important issue to overcome barriers and make the necessary plans when needed that are in line with the desires of your loved one?  How does the Caregiver find peace with decisions expressed that are not congruent with the Caregiver’s spiritual journey?

Carolyn A. Brent: Are you willing to have a conversation with your loved one about his or her wishes for end-of-life care? I suggest families to start having these types of conversations early—before there is a sudden and unexpected life-threatening emergency, which may force you to make an abrupt or hasty end of life decision. Here are five issues that your loved one should address in writing (in a legal document) to ensure your loved one’s comfort and well-being when he or she can no longer make decisions for himself or herself.

These five issues comprise the national advance medical directive known as Five Wishes™, which is the creation of the nonprofit organization.

Aging with Dignity:

  1. The person I want to make care decisions for me when I can’t
  2. The kind of medical treatment I want or don’t want
  3. How comfortable I want to be
  4. How I want people to treat me
  5. What I want my love ones to know

Do you feel safe talking to your family members about your emotions regarding your loved one’s terminal diagnosis? Write down why you are feeling the way you do. Be honest with yourself. If you and your family members feel uncomfortable emotionally and cannot handle your loved one’s diagnosis, it is time to have a third party, such as a mediator who specializes in end-of-life discussions, get involved and be part of the “Crucial Conversation” Unfortunately, not all family members may be on the same page as you are when it comes to grief. That is why you and other family members should review the five stages of grief identified by Dr. Elisabeth Kübler-Ross. Understanding the five stages of grief can help you to communicate better with your family. The five stages of grief are:

  1. Denial. When we first find out that we, or a loved one is dying, we typically deny the news or the imminent loss.
  2. Anger. We may become furious at ourselves, at our loved ones, at the doctors, at God or at the world at large for letting this take place—even though nothing could be done to prevent it. “Why me? It’s not fair.”
  3. Bargaining. In this stage, we negotiate with God or the universe. “If I do this, will you stop me from dying?” “If I do this, will you save my loved one?”
  4. Depression. In this stage we are numb. Although we may still have anger and sorrow, they are buried. Our energy is so low, we feel sluggish and unable to function normally. “I’m going to die, so why bother to do anything?”
  5. Acceptance. When the feelings of anger and sadness taper off, we ultimately accept reality. In this stage, a dying person becomes peaceful, and so do we if we are mourning. “It’s going to be okay.”

As the end of your loved one’s life nears, spiritual support can be incredibly important. Most hospitals and hospices have chaplains who can come and spend time with your loved one and you, offering your family solace and guidance in your time of need. You do not need to be a regular churchgoer or practice a specific religion to request spiritual support. Spirit is universal. Counselors and volunteers who work with the dying are trained to honor the unique spiritual needs of individuals.

Mary Nicholson:  Sibling Rivalry:  How do you handle a situation when every sibling is willing to step into the role of Caregiver, but the parent feels most comfortable receiving care from one specific sibling?  How do you keep others engaged and reduce feelings of alienation?

Carolyn A. Brent: Great question! When a parent feels most comfortable receiving care from one specific sibling, that sibling should be appointment as the “primary caregiver.”  Which simply allows that person to hold the legal decision-making authority for their loved one, and this role must ideally be established with legal documentation. It doesn’t mean others cannot contribute opinions; it means only that at the end of the day there is no confusion when your family is interacting with doctors.

I will forever say, “Make caregiving a family affair!” The best way to get started out is by dividing up the tasks—if everyone takes on different responsibilities, the workload is lightened. For example, one relative could handle the medical aspects of care. Another could handle the financial aspects of care. Yet another could handle the grocery shopping and/or meal preparation. Be sure everyone is kept informed about the current status in the others’ areas of responsibility, and mention changes you see in your loved one to each other.

Regarding potential sibling rivalry on the backend of caregiving, it is crucial for families to have legal conversations now! Do the paperwork, and then you, you’re loved one and your family members can go back to the routine of living your best lives, secure in the knowledge that all affairs are in order. The following are the four main legal documents you need to have prepared. Plus, there is a fifth document, which I call an add bonus.

  1. An advance medical directive, also known as an advance health care directive and a living will.
  2. A durable financial power of attorney.
  3. A durable health care power of attorney.
  4. A last will and testament.

Caregiver agreement—you, your family members and your loved one should also consider a fifth document, one that is relatively new. When siblings are not in full agreement about a loved one’s care, a mediator can help them create a caregiver agreement—which all parties sign and adhere to from then on. This document is a customized contract that can spell out everything from who promises to do what and how decisions about different tasks and responsibilities will be made in the future, to how a primary caregiver will be compensated for time expended and expenses, and how family members who do not wish to be involved are prohibited from interfering in caregiving. The caregiver agreement helps prevent conflicts from getting out of hand.

More details are in The Caregiver’s Companion: Chapter 5-Hospice Care for the End of Life—Chapter 9 – Crucial Legal Conversations

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I hope you enjoyed this interview with Carolyn A. Brent and that you’ll check out her book on Amazon tomorrow January 27, 2015:

The Caregiver’s Companion:

Caring for Your Loved One Medically,

Financially and Emotionally While Caring for Yourself

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Thanks for reading! Please share your comments and thoughts below. I love reading your feedback.

AND… be sure to follow Carolyn tomorrow when the next stop on the Virtual Blog Tour is Maria Dancing Heart Hoaglund, who will be interviewing Carolyn on the subject of spirituality and caregiving support. To visit that “stop” on the tour, go to http://exm.nr/1xusoIL

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