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Posted: September 27, 2007

Spousal Caregiving

The Caregiver's Challenge of Intimacy & Sexuality

Bill Andrew

The August 23 issue of the New England Journal of Medicine reported on the results of a federally funded study done by respected scientists that found many seniors were having sex into their 70s and 80s and were not shy about talking about it. This comes from what is described as the most comprehensive sex survey ever done among 57-85 year olds in the United States and overturns some stereotypical notions that physical pleasure is just a young person's game.

The lead author of the study, a gynecologist, said, "This subject has been taboo for so long that many older people haven't even talked to their own spouses about their sexual problems."

A geriatric specialist, who had no role in the study, said, "Doctors are often embarrassed to bring up the subject -- and some may not know how to treat sexual dysfunction. Even among geriatricians, there can be age bias that this is not as big a deal as some of the other things that they come to us for -- like heart problems or dementia." Thus, many seniors do not have the same opportunity to enjoy sex as those in the above referenced study did.

When a spouse is afflicted with Alzheimer's disease, a related dementia, or other illness or impairment, then we have a different "ball game." Intimacy is an important component of any normal relationship. Families and friends share multiple levels of intimacy.

Between spouses -- the primary focus of this article -- 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 persons 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 tells 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 whatever has to be done. The impaired spouse gets the support and sympathy. Talking about the loss of intimacy -- the loss of sexuality -- is just not done. "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, it was "love at first sight!" That love, that intimacy, is often not expressed just sexually but is reflected in everything that 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 spousal 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 of that. 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 -- respite care, homemaking, nursing assistance -- may change the chemistry between spouses. It is difficult to feel sexy when you are burned out. Also, the spousal caregiver may not want to "take advantage" of the impaired care-recipient -- nor should they do so.

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

Intimacy means many things depending upon the context in which it is used. Dictionaries define intimacy as "the state of being intimate," which can further be defined as 1) a close, familiar, and usually affectionate or loving personal relationship with another person, 2) sexual relations, or 3) very private, closely personal. In your caregiver role for your spouse, his/her illness or disability does not necessarily mean that intimacy is over.

For example, human touch has been proven to be the key to intimacy -- sexual or otherwise. While you may feel that you spend a lot of time touching your spouse by bathing, toileting, feeding, dressing, 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 your spouse 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, singing, looking at old pictures from your courtship days, dancing together (if possible), using humor, being silly -- anything that gets a positive reaction from your spouse.

You had to work hard to find time for other basic needs of life -- so too, you will have to work hard to reclaim or rediscover your sexual self as a spousal caregiver and your connection with your spouse. Do not lose your sexual side -- intimacy is a vital part of your personal well-being. Our personal health and well-being is influenced by our feelings of connectedness. There are few things in life as stressful as feeling alone in the world -- and if intimacy dies, people can feel alone even if they are living together or are in a crowded room. Helping to support healthy relationships, in both their physical and emotional senses, is helping to keep alive a fundamental part of a person's well-being.

As was said above, intimacy is an important component of any normal relationship. It is a critical component 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, 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 such as Alzheimer's disease.

The bottom line is that we, who are 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 this from personal experience. My spouse, Carol, and I have been married for over 56 years. Our sexual intimacy was outstanding for most of those years. However, due to the onslaught of Alzheimer's disease that Carol has experienced for over 13 years, that has changed significantly. Touch intimacy, done in a caring and loving way, is the current protocol for us; sexual intimacy is history!

As Blessed Mother Teresa of Calcutta once said, "We can do no great things; only small things with great love." I do many small things each and every day for Carol with great love. I firmly believe that the intimacy of our spousal relationship has grown since her illness "took her away from me" -- love is the seed that keeps growing and maturing. Touch intimacy is the nurturing agent that facilitates that growth and maturity.

Hopefully, you, the readers of this column, can relate to how I feel. I would like to hear your personal stories of intimacy and sexuality as you travel your own personal difficult long journeys with your spouses. If you would like to share those stories with other readers, please e-mail me at ASKBill@caregivershome.com. I will include your stories in a future column to provide inspiration to other spousal caregivers. Please provide your full name and address. In that column, I will only use your first name and the last initial of your last name as well as your city and state. Thank you.

WORDS TO CARE BY . . .

"Passion is the quickest to develop . . .

and the quickest to fade.

Intimacy develops more slowly . . .

and commitment more gradually still."

Robert J. Sternberg, PhD (1949- )


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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© 2007 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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