Monday, October 3, 2011

Respite Care

I believe there is often confusion about the meaning of respite care. It must be understood that respite care is relief provided to the caregiver.  There is a tendency even among caregivers and respite care providers to think that respite should consist of care provided directly to the patient.  This isn't necessarily so.  Respite care is any task that would provide the caregiver stress relief, including (according to my respite caregiver, Sandy) cleaning my kitchen floor.  Each week Sandy appears, visits for a few minutes with my mom, and bids me goodbye (even if I'm only going upstairs to work on writing assignments or to rest).  She then works her way around my home doing any housekeeping task she can see that would make my life easier.  Meanwhile, for that brief time she is here, I am completely free of responsibility to my mom.  During Sandy's work hours in our home , if Mom calls, Sandy answers; and meantime household chores that have gone undone are taken care of for me.  Respite indeed! 

We sometimes fail to take into account the fact that caregiving brings emotional burdens that many times--no, I'm going to say MOST times--outweigh the physical work involved in taking care of someone who is infirm.  Caring for someone who is dying is the most emotionally stressful form of caregiving. When we are involved with a disease such as Alzheimer's and the dying process is lengthened over a long period of time--it has been 7 years and counting for us--well, let's just say that respite is sorely needed.  

The most valuable services Sandy provides for us don't have to do with the time she spends with my mother, but with the thoughtful things she does to make my day-to-day life easier.  She recognizes that I am the one who carries the grief and burden of caring for my mom, and that her job is to lighten my load wherever she can.  We are blessed by her presence in our lives; thank you, Sandy. 

The following is a list of Sandy's stellar qualities, and can be used as a guide for understanding what constitutes good respite care:  
  • Prays for the caregiver and care recipient
  • Recognizes that the job of respite caregiving is to lighten the load for the primary caregiver and focuses on the caregiver's needs
  • Understands that the caregiver bears burdens that can't be seen and is accepting of grief and stress related behaviors (aka, grouchiness)
  • Empathizes with the terrible grief of seeing a loved one behave in aberrant ways and never makes jokes about the patient's disease related behaviors
  • Does not repeat stories--humorous or otherwise--about the patient or caregiver, and practices complete confidentiality 
  • Does not criticize the primary caregiver's caregiving decisions, recognizing that while the respite care provider spends just a few hours each week in the caregiving environment, the primary caregiver is there 24/7. 
  • Remembers that the patient's current condition not an accurate portrayal of the person he/she once was, and does not judge him/her for disease related behaviors.  
  • Is honest and trustworthy 
  • Treats the patient with kindness and empathy, aka, love
If you are the primary caregiver for someone who is infirm, please do be proactive to find time away.  Whether the respite care occurs in one's home or entails finding a nursing home or daycare provider that will take your loved one for a regular time away from the pressures of caregiving, respite care is a vital part of providing long term care to a loved one. 


    1. Linda, what a blessing that you have Sandy! Your perspective is so wonderful to read. I know that I myself have recently gotten more respite care, and it has taken me a while to really know what to do with it! At first I was worried about mom, then I felt guilty--now I think that I have realized that it helps make me a better caregiver when I am with her. I pray that all caregivers are given respite in this long journey. Fondly,

    2. Well Jill I think you said it better than I did..."I have realized that it (respite)helps make me a better caregiver when I am with her..." Praying with you that caregivers who have not yet found a respite care provider are led to the solution that's right for each of them as well as for their loved ones.

    3. Love this list, Linda. You are indeed fortunate to have found Sandy? Is she from your church or another place? Does Medicare or Medicare supplement pay for her? My husband is in stage one and we are not at that point yet, although I am getting worn out.


    4. Well, I'm pretty sure Sandy is an angel sent straight from Heaven! But, in more earthly terms, yes, she was a member of our church. No, Medicare hasn't paid for her, though perhaps I should read the fine print of the Medicare rules and regulations and see if that is a possibility.