As family caregivers, the best support we can offer our loved ones usually occurs when we see ourselves as full and equal members of his or her professional care team. That certainly makes sense and is quite easy to say, but there are many differences to overcome between family and professional caregivers once we receive that metaphorical phone call in the middle of the night telling us that something is amiss with a loved one. One difference in particular is, of course, that the professional caregivers on your loved one’s team have many years of practical experience and education in their chosen field. We, on the other hand, get about a minute to collect our thoughts and start our new lives as family caregivers.  This means that we are destined to be playing catch-up as many new words become crucial elements of our new language of caregiving.  Unfortunately, many of the words and concepts can have unjustifiably negative connotations which they do not deserve.  For example:

Hospice:

Don’t feel too bad about not immediately understanding the value of hospice care since many professionals (including doctors) do not fully understand hospice either. The first thing to realize is that hospice is not a place, but a concept. Hospice care can take place in a stand-alone facility, in a nursing home, a hospital or even at home.  And contrary to any misinformation that is out there, investigating hospice care does not in any way mean that you or your medical team has “given up.” Some of the best and most supportive care I have witnessed for ill friends and family members, as well as their loved ones, has been with hospice care.

Support Groups:

Many of us would rather have a root canal performed than think of going to a support group meeting. That is quite understandable until you realize that a well-run support group can be a vital link in receiving the information and support you need as a family caregiver. Think of it as a board of directors meeting where you can openly discuss anything that concerns you as the CEO of Caring for My Loved One, Inc.  No matter what piece of the puzzle you are looking for with regard to your loved one’s care, most likely someone in the group has already found a solution for themselves that can work for you as well, and is more than willing to share it with you. It is also important to have a place to share those feelings that only other family caregivers can appreciate. One other thing about support groups—if appropriate, they can be a blessing for your loved ones as well.  After my dad’s diagnosis of bone marrow cancer in the early nineties, the last thing this proud Marine (once a Marine, always a Marine) would agree to would be joining a support group; so my surprise was justified when I saw him in a Tom Brokaw news piece on support groups.   Dad loved that group and they loved him.  In fact, every member of the group was front and center at his funeral six months later. It only made sense, as they had become important members of his extended family.   
And for that, I am eternally grateful.

 

Gary Barg
Editor-in-Chief
gary@caregiver.com