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Posted: October 12, 2006

Spousal Caregiving

How Caregiving Changes the Roles of Sex and Intimacy

Bill Andrew

Did you know that there is a hidden cost to spousal caregiving that you might not be aware of? This cost is not a financial expense -- although it may be costing you a lot more than you might recognize. It is an emotional expense and no insurance policy is going to cover this cost. What is it? It is the price you pay when illness or disability deprives you of the intimacy you once enjoyed. That intimacy with your spouse is a casualty of caregiving.

Intimacy means many things depending upon the context in which it is used. Dictionaries define intimacy as the state of being intimate. We will use the following definitions of intimacy for purposes of this discussion: 1. a close, familiar, and usually affectionate or loving personal relationship with another person; 2. sexual relations; 3. very private, closely personal.

Intimacy is important in any healthy relationship. Families and friends share multiple levels of intimacy. Between spouses, it typically has a sexual dimension. Among the rest of the family, intimacy becomes tangible in the caring and understanding acts that reassure family members and friends that a safe and loving place exists for them. Caregiving changes roles, alters expectations, and brings unexpected responsibilities. After a while, even the most resilient individuals find that the burdens of caregiving have transformed their closest relationships in ways that leave them feeling frustrated and unhappy.

The delicate balance of intimacy between spouses -- often difficult to achieve in the best of circumstances -- suffers when expectations are changed by illness or disability. While it is normal to become angry when the usual spousal relationship changes drastically, society and our faith tell us that we can not be angry toward someone who is impaired -- after all, it is typically not their fault that things have changed. Spousal caregivers are expected to pitch in and do what ever has to be done. The impaired spouse gets the support and sympathy. Talking about the loss of intimacy is just not done; instead, it goes with the territory.

In my world, intimacy implies love! That love has been nurtured since the first time you and your spouse met -- perhaps, like me, with love at first sight. That love, that intimacy, is often not just sexual but is reflected in everything you do for your spouse. That includes the emotional support that comes from holding hands, hugging, touching, and kissing. It is nourished by being a gentleman or lady in every day activities with your spouse. Of course, the ultimate expression of that love is an intimate sexual relationship.

However, sexual intimacy often suffers in many spousal caregiving situations and depends upon the illness or disability of the care-recipient. It can also be traced to caregiver fatigue from providing the activities of daily living for the spouse. While intimacy typically conjures up the image of the sexual antics of when we were young, many spousal caregivers feel the exact opposite. They are exhausted, generally out of shape, and have put sex on the back burner. Perhaps the presence of a new person in the home may change the chemistry -- respite care, homemaking, nursing assistance -- between the spouses. It is difficult to feel sexy when you are burned out.

Experts agree that sexual intimacy is one of the most difficult aspects of caregiving. But intimacy means much more that just sex -- it can live well beyond the bedroom.

In your caregiver role, your spouse’s illness or disability does not necessarily mean that intimacy is over. For example, human touch is proven to be the key to intimacy. While you may feel that you spend a lot of time touching your spouse by bathing, toileting, feeding, and moving him/her about, why not set aside some time for different kinds of touch. Holding hands while toileting, while feeding, while sitting together, while lying in bed, while walking together, or by stroking their face or hair -- these are all examples of touch that can lead to a better connection between spouses.

The "power of touch" can not be over-emphasized. Touching does not necessarily have to be done in a sexual way; do it in a caring and loving way.

There are other non-traditional ways to connect with and satisfy your spouse -- and yourself. Try hugs, holding hands, giving back-rubs, making eye contact, talking or singing, looking at old pictures from your courtship days, dancing together (if possible), using humor, being silly -- anything that gets a positive reaction from the spouse (and makes you feel good).

You had to work to find time for other basic needs of life. So, too, you will have to work to reclaim or rediscover your sexual self and your connection with your spouse. Do not lose your sexual side -- intimacy is a vital part of your personal well-being. Our health and well-being is influenced by our feelings of connectiveness.

There are few things as stressful as feeling alone in the world -- and if intimacy dies, people can feel alone even if they are living together. Helping to support healthy relationships, in both their physical and emotional senses, helps keep alive a fundamental part of a person's well-being.

Intimacy is important in any normal relationship. It is critical in a relationship affected by caregiving, especially spousal caregiving. Intimacy is greatly impacted and strained by the limitations imposed by the illness or disability of the spouse and the ability of the spousal caregiver to provide the level of care required. You can love someone and never be intimate or sexual with him/her. You can also have sex with someone and never have intimacy with, or love for, the other person. You can love someone and have great intimacy without having physical sex.

Whatever works for you is fine. If none of it works for you, or only in a limited way, you may need to ask yourself: "is it the illness or disability? Is it the relationship? Is it blind acceptance of the status quo and the anger of not being able to do anything about it?" Whatever the reason, the subject of intimacy is at the core of many of the issues that spousal caregivers face. It is inescapable for those of us dealing with a chronic illness.

The bottom line is that we spousal caregivers must recognize that the intimacy we experienced early in our marriages has changed due to the illness or disability affecting our spouses. We must adapt to the current situation -- while sexual intimacy worked in the early days, human touch intimacy may be the order of the day in these latter days.

I know. My spouse, Carol, and I have been married for over 55 years. Our sexual intimacy for most of those years was outstanding. However, due to the onslaught of Alzheimer's disease over these past 12 years, that has changed significantly. Touch intimacy, done in a caring and loving way, is the current protocol for Carol and me -- sexual intimacy is history. As Blessed Mother Teresa once said, "We can do no great things; only small things with great love."

I do many small things every day for Carol with great love. I believe the intimacy of our spousal relationship has grown since her illness took her away from me; after all, love is the seed that keeps growing and growing. Touch intimacy is the nurturing agent that facilitates this growth.

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 . . .

"We can do no great things;

only small things with great love."

Blessed Mother Teresa (1910-97)

(EDITOR'S NOTE: to read feedback Bill received on this column, click here.)


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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