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Maggie Strong wrote in her marvellous book, "Mainstay":

" To be married to someone ill and to watch a man or woman you love suffer means you mourn. You mourn...the suffering of the mate and your lost self- the one who could feel dependent, who could ask to be indulged, the light-hearted you, and often with chronic illness you mourn a lost or reduced sexuality."

Anita Tejedat, the wife of someone with chronic pain, wrote:

"What about the person who is not the one with the illness? Yes, how about me? How am I doing? No one ever seems to ask. A selfish thought when I'm not the one who has the disease...my pain...is the pain of sharing my life, my love, my hopes, my dreams, my future, with someone whose life seems to be shattered and all those things stolen from him...I'm scared because my own life... and future are so connected to my love's that I wonder what will become of me."

A research study in America, looking at spinal cord injury survivors and their caregiving partners, found that caregiver spouses deal with substantially greater stress, depression and other negative symptoms than those not providing care.

Another study, looking at spouses of spinal cord injury patients found that they tend to be proud of what they do and generally content in doing it, deriving pleasure from the ?extra' help they gave their sick partner.

Whilst a few admitted that this work was a burden and tiring, almost all did not want people from outside the family to help their loved one.

Family members of people with chronic illness do tend to be vulnerable to exhaustion, stress and illness.

Richard Holicky has written a helpful article available online, titled "A Labor of Love: Beating Stress in Long-Term Caregiving" ([1])

He has researched caregiving for six years and talked to various family members involved in caregiving.

He reports that many find that caregiving gives their lives meaning and purpose. Some say that it has made their lives worse and "their worlds smaller."

Holicky divides the negative consequences of caregiving into 4 areas:

Stress and emotional challenges: including anger at the unfairness of life (often directed at medical professionals); loss of trust in the future; fear that things will get worse; worry about who will look after the caregiver if he/she falls ill; resentment over lost dreams, plans, altered lifestyle; guilt for feeling any emotion other than compassion; frustration, sadness, anxiety, sense of isolation, loss of personal time>>depression
Burnout/role overload: family caregivers, typically women, perform many chores: Swiss Army Wives! Volume of work and variety of roles may result in loss of personal time (and identity), loss of sense of control; loss of free time equates with increased stress. Fatigue may be cumulative and lead to functional decline, health complications. Women tend to internalise stress more and may be involved in more intimate care.
Family relationships: "Disability is often a third partner in a marriage," (Holicky); as we have seen, illness skews relationships; caregivers may tend to protect the ill partner from emotional upset or even ignore destructive behaviour such as excessive drinking or using higher than prescribed doses of medication; studies report decline in sexual intimacy between caregivers and disabled spouses.
Caregiver health: long-term caregivers are likely to report more pain, more doctor visits, poorer health and more rapidly declining health than those who don't provide care; back injury, chronic fatigue, sleep deprivation, headaches, poor nutrition, gastric upset. Caregivers may ignore their physical, emotional, social, spiritual and intellectual health needs

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