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Posted: September 15, 2006

Spousal Caregiving

Education 101 -- Defining Your Caregiving Role

Bill Andrew

How do you know whether you are a "family" or "spousal" caregiver? What are the criteria that define this role that many of us have undertaken, often by default. What is "caregiving" as opposed to "care taking?" Many spouses and families provide care for a loved one but don't really consider themselves as "caregivers" -- I am sure that you know such people as I do. 
If you ask someone if they consider themselves a caregiver, what kind of replies do you receive? For example, I recently asked a friend if she considered herself a family caregiver. After some thought, she responded "yes" -- but only because she knew where I was coming from. You see, she "takes care" of her two elderly sisters -- and she is elderly herself (I consider anyone over the age of 65 as being elderly).
But many elderly folks provide care for someone they love without thinking about being a caregiver. In their eyes, they only provide the care because that is what we do for our loved ones when they need help. They don’t think they have a label or belong to a group or class -- but they do.
In a way, writing this column is ironic at this stage of my caregiving journey with Carol, my wife of 55 years who has late stage Alzheimer's disease. It is also ironic that this is my 89th column and I am just now defining caregiving – a role we all accepted without a second thought. 
Whether we are a family caregiver or a spousal caregiver is a moot point -- what is important is that we "give" care and that we do not "take" care! It is also important to note that all spousal caregivers are also family caregivers since our spouses are "family." So, if you read about family caregiving, and you are a spousal caregiver, then what you are reading is all about you.
We spousal caregivers "give" care to our loved ones, our spouses, because we love them. While we "take" care of them, we do so by "giving" to them what is needed. I have a saying -- nay, a mantra: "Loving is giving . . . giving is loving." Because I love Carol, I give to her. Because I give to her, that is the ultimate expression of my love for her. 
Let's attempt to define family caregiving in the context of spousal caregiving. Then we can identify who is and is not a family caregiver. It is important to note that not every caregiver is a family caregiver -- doctors, nurses, home health aides, clergy, etc. are caregivers in some respects but we don't consider them to be family caregivers. It is also important to note that not all family caregivers provide care for a loved one in the loved one's home. As you read the following paragraph, substitute "spousal" for "family" if it helps you to understand what I am saying.
According to the National Family Caregivers Association (NFCA), "Family caregiving is the act of assisting someone you care about, who is chronically ill or disabled and unable to care for him/herself." Generally, family caregiving can be defined as that care provided in the home of the loved one by a family member. Recent statistics indicate that more than 80% of all home care services are provided by a family member. These services are conservatively estimated to be worth over $260 billion a year! That is twice as much as is spent on paid home care and skilled nursing facility services combined. 
Of course, you could still consider yourself a family caregiver if you provide assistance to a loved one in a skilled nursing facility. In addition, there are the many professional caregivers who assist family members in the paid home care and skilled nursing facility environments. However, for purposes of this column, a family caregiver provides care in the home of the loved one and is typically a family member. This family member may be a spouse, a parent, adult child, siblings, lovers, partners -- even friends and neighbors. The above definition would also apply if the loved one's care is provided in the home of the family member. 
In summary, you are a family caregiver if you provide family caregiving for someone you love or care about as they face chronic illness or disability in their own home. You provide essential but unpaid services to keep the loved one as comfortable, healthy, and safe as possible. You may supplement these services with outside support in order to provide respite for yourself as needed to relieve the stress and strain of being a family caregiver. 
If the above applies to you, you are a family caregiver! If you are giving care to a spouse, then you are a spousal caregiver
Perhaps it would helpful if we further defined the two parts of the term "family caregiver."   Once again, we refer to the NFCA website: "The two parts of the term (family caregiver) are equally important. 'Family' denotes a special personal relationship with the care-recipient; one based on birth, adoption, marriage, or declared commitment. 'Caregiver' is the job description, which may include providing personal care, carrying out medical procedures, managing a household, and interacting with the formal health care and social service systems on another's behalf. Caregivers are more than the sum of their responsibilities; they are real people with complex and often conflicted responses to the situations they face." 
Written by a family caregiver, the distinction above between the word "family" as the definer of the caring relationship -- and the word "caregiver" as the description of the job -- is an important one. Putting the two words together as a single defining term is what distinguishes you and me from others who provide care -- doctors, nurses, home health aides, clergy -- all of whom are also caregivers for our loved ones but can not be considered family caregivers as defined above. 
As family caregivers, we share a common bond with each other despite the fact that some of us care for our spouses (as I do) while others care for parents, children, siblings, lovers, or partners. This common bond exists despite the fact that we deal with a wide array of medical conditions and diagnoses. 
I hope that the above provides you with some food for thought as you reflect on your job as a spousal caregiver. If you would like to respond to the above from your own personal experiences, drop me a line or two at God bless you and yours.
"Loving is giving . . . giving is loving."
Author Unknown

Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at

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