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The Vanishing Caregiver


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Pamela S. Combs, PhD, RN
VAD Clinical Manager
Seton Medical Center
Austin, Texas
pscomb01@mail.com




Missing in the darkness,
vanished without a trace,
with only the memories and photographs
to fill an empty place.

—The Great Eternal Silence, by Aquinas T. Duffy (1)

Due to a significant improvement in survival rates following implantation of ventricular assist devices (VADs), the number of patients with implanted VADs has increased considerably (2). With such technology now employed to sustain the life of the VAD recipient, patients are generally discharged home with a caregiver (3). Though very committed, the caregiver may experience negative psychological, behavioral and physiological responses while implementing the necessary care for the patient (4).

If the burden is too heavy, the caregiver may deem the designated responsibility as impossible to fulfill. Thus, the VAD team may notice the presence of the caregiver, as Mr. Duffy would say, vanishing. What steps can the VAD team take to prevent the caregivers from disappearing? The following are a few simple actions to reduce the potential of the caregiver vanishing away:

  1. Support groups hosted by the VAD team allow the caregiver to socialize with fellow caregivers and share stories. This not only allows a respite, of sorts, but increases knowledge of caregiving tasks. Many VAD teams offer VAD support group meetings in relaxing, non-medical atmospheres, such as restaurants or parks. Some VAD teams separate the caregivers and recipients to allow opportunities for frank conversations. These meetings have been known to foster a bond that produces long-lasting caregiver friendships. Furthermore, the caregivers and patients meet the social side of the VAD team; this may accomplish a goal of promoting a more positive view of the VAD experience.
  2. Encouraging the caregiver to take respite breaks may allow a time to re-energize. Many caregivers have stated that a simple stop to the grocery store, attending a church service or participating in yoga is enough to refresh a low energy level. During the VAD patient's assessment, VAD teams should incorporate questions that ask the caregiver the following: 1) "Do you have any feelings you would like to share about assuming the role of caregiver?" 2) "What actions do you take to assure you are taking care of yourself?" and 3) "What do you do to relax?"
  3. The dominant force of social networking may be impactful for the caregiver and allow for socialization without leaving the home. VAD caregivers become Facebook "friends" with fellow caregivers and converse via Facebook. This bond promotes a camaraderie that the caregiver views as "there is someone else out there going through what I am going through." Additionally, the internet site, MyLVAD.com, is frequently perused by caregivers as not only a venue for socialization but as a source of information that may enhance their caregiving. MyLVAD.com has become a popular source of unbiased information about LVADs (5). VAD teams share this site with VAD patients and their caregivers and encourage them to read the site's blogs, stories and videos.

In the end, the key is for the VAD team to incorporate the caregiver as a part of the VAD care team. By maintaining regular communication with the caregiver and asking open-ended questions, the VAD team encourages the caregiver to offer more information, including feelings, attitudes and understanding. The preceding discussion mentions only a few suggestions to prevent the vanishing of the caregiver. Many other actions may be applicable that enhance communication, decrease burden and promote positive outcomes for the patient AND the caregiver, an important part of the VAD patient's care.

Disclosure Statement: The author has no conflicts of interest to disclose.


References:

  1. Duffy, A. (2000). The great eternal silence. From the Internet site:
    http://www.missing.ws/_prayer/prayer.asp.
  2. Marcuccilli, L. & Casida, J. (2011). From insiders' perspectives: adjusting to caregiving for patients with left ventricular assist devices, Progress in Transplantation, 21(2).
  3. Slaughter MS, Aaronson K, Najjar S, et al. Results of the HeartWare ADVANCE bridge to transplant trial and CAP update. Presented at the EACTS conference in Lisbon 2011. Interact CardioVasc Thorac Surg 2011;13(suppl 2)
    http://icvts.oxfordjournals.org/content/13/Supplement_2/iii.full
  4. Petty, M. Translating bedside technology to home technology: Do we leave caregivers holding the (tool) bag? Presented at the ASAIO Conference in Chicago 2013.
  5. Christensen, D. Join the MyLVAD revolution. ISHLT Links 4(9):
    http://www.ishlt.org/ContentDocuments/2013JanLinks_MyLVAD.html.



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