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Posted: October 26, 2006

Spousal Caregiving

On Surviving Spousal Caregiving's Cascade

Bill Andrew

More than 50 million people in the United States provide care for a chronically ill, disabled, or aged family member or friend during any given year. According to the National Family Caregivers Association, which keeps these stats, older spousal caregivers with a history of chronic illness themselves and who are experiencing caregiving-related stress, have a 63% higher mortality rate than their non-caregiving peers. Bluntly, they die sooner!

In addition, the stress of providing care for a person with dementia has been shown to impact a person's immune system for up to three years after their caregiving role ends, thus increasing their chances of developing chronic illness themselves. The above applies to spousal caregivers and family caregivers (typically adult children) alike.

Family caregivers who provide 36 or more hours of care each week are more likely than non-caregivers to experience symptoms of depression or anxiety. The rate for spousal caregivers is stunningly six (6) times higher, while the rate for those caring for an elderly parent is twice as high! In addition, family caregivers and spousal caregivers who provide a high level of care have a 51% incidence of sleeplessness and a 41% incidence of back pain. Clearly, it’s not a pretty picture.

By the year 2030, an estimated 150 million Americans will have some type of chronic illness -- a 50% increase since 1995! More than 40% of all family caregivers provide some type of "nursing care" for their loved ones, such as giving medications, changing bandages, managing various devices, and monitoring vital signs -- all for which they often do not receive any formal instructions.

It is important to note that among all family elder-caregivers, who acknowledge and accept their roles as caregivers, are much more proactive in reaching out for assistance and resources and talking with their loved one's doctor, than family caregivers who don’t self-identify as a "caregiver."

Obviously, it behooves you, as a spousal caregiver, to take care of yourself so you will be there to provide care for your loved one as needed. Unless you have been a caregiver yourself, it is difficult to really understand the meaning of caregiving, especially as a 24/7 spousal caregiver. Few of us are prepared for the many challenges that face the spousal caregiver; we become a spousal caregiver by default because of some illness or disability afflicting our loved one, and we do what we have to do because we love them. We didn't ask to become spousal caregivers, but we are who we are and we do what we have to do.

Recent statistics indicate that more than 80% of all home care services are provide by a family caregiver, often a spousal caregiver. These services are conservatively estimated to be worth over $260 billion a year -- twice as much as spent on paid home care and skilled nursing facility services combined! That’s a lot of care provided by non-professional caregivers who are at great risk to their physical, emotional, and spiritual health.

Therefore, in the face of this cascade of alarming information, it behooves all family caregivers to develop a "caregiver survival plan." With a focus on spousal caregiving, this plan should be developed with input from both your doctor and your loved one's doctor in order to address both the short-term and long-term physical, emotional, and spiritual effects of spousal caregiving.

Often, the impact of being a spousal caregiver is as individual as the spousal caregivers who survive the event. Typically, a spousal caregiver marshals all of the physical, emotional, and spiritual defenses at their disposal to get through the caregiving journey. When the journey is over, the spousal caregiver's defenses are typically loosened, and intense and conflicting emotions may result. These may include:

 

 

Fear and anxiety. After months, and perhaps years, of caregiving dedication and commitment, spousal caregivers may find themselves abruptly severed from their daily routine or providing for their loved one when their spouse dies. This can be disconcerting, to say the least, since this daily routine has sustained both the caregiver and the loved one during the journey.

Grief. Obviously, the spousal caregiver will grieve the loss of their loved one, more so because of the caregiver/care-recipient relationship that will have developed over years. We all love our spouses; however, I can tell you that my personal 12-year spousal caregiver journey with my wife, Carol, has developed my love for her into something that I could not have imagined. Perhaps, it’s much like a mother's love for her offspring; I have an all-consuming love with only one focus: to provide the best possible care that I can.

Erosion of self-image. The physical, emotional, and spiritual effects of being a spousal caregiver are reminders of one's own vulnerability. We may find that as a result of "being out of the loop" in terms of our family, friends, and neighbors, we now find ourselves struggling with diminished vitality.

Changes in intimate relationships. It goes without saying that a spousal caregiver's sex life is typically affected by the illness or disability of their loved one. We wrote about that in a previous column How Caregiving Changes the Roles of Sex and Intimacy. Illness and disability are notorious thieves of libido for both the loved one and their caregiver.

Effects on the family. Spousal caregiving can, and should, be a family affair. Family members are likely to want to get the household back to normal after the loved one has passed on. They may not be patient with the spousal caregiver who may need more time to recover.

So, how can the spousal caregiver survivor address these potential issues? These steps may help you to develop a "spousal caregiver survival plan" to maximize your physical, emotional, and spiritual health:

 

Work closely both with your doctor and your loved one's doctor. It is important -- nay, critical -- to make sure your clinician has the "complete story" on both you and your loved one. After your loved one has passed on, the statistics mentioned above may start to "kick in" with you personally.

Join a support group. As I have said many times before, a support group can be the "lifeline" for your personal survival -- both during the spousal caregiving journey and thereafter. It is often very therapeutic to talk with others who have "walked in your shoes." Refer to Can a Support Group Make You a Better Caregiver? and My Personal Support Group Experience.

Stabilize your relationships. If spousal caregiving has put a strain on your personal relationships with family, friends, and neighbors -- or perhaps unearthed problems that took root earlier -- you may want to seek professional advice. Sometimes, it helps to discuss the situation with the pastor of your church, since the problems may be more spiritual than physical or emotional. In either case, you will want to seek out those you may have offended or ignored and get back into the mainstream with them.

Treat yourself. Take some time off for yourself. Respite time is critical to your survival, and there are various programs available to provide caregiver coverage while you take some time off from your spousal caregiving responsibilities and duties.

Invest in the future. Planning for the future is one of the best ways to overcome the fear that the future won't be there after your loved one passes on. Start now with what you would like to do when that time comes. Perhaps you already have such plans, but if not, start to think about it. As the song says, "Que Sera, Sera. Whatever will be, will be. The future's not ours, to see. Que Sera, Sera. What will be, will be." But if we start planning for the future, "what will be" will be what we have planned and not a series of random events.

These are just some thoughts that I wanted to share with you. All of our spousal caregiving journeys will come to an end at some point. Hopefully, the above will help you to develop your own personal "spousal caregiver survival plan."

If you would like to share your thoughts regarding the above with other readers of this column, drop me a line at ASKBill@caregivershome.com.

WORDS TO CARE BY . . .

"A man's dying is more the survivor's affair than his own."

Thomas Mann (1875-1955)

 


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 ASKBill@caregivershome.com.

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© 2006 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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