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Posted: April 21, 2005

Spousal Caregiving

Where Have All My Friends Gone?

Bill Andrew

Sadly, caregiving sometimes carries with it the byproduct of our losing our friends. I wrote about this often-haunting fact in a recent question-and-answer column, and I'm back today with more on the topic, thanks in part to a friend who is a clinical psychologist and recently shared his views on losing friends at a recent Alzheimer's support group.

Kevin M. Kindelan, PhD (kinderlanassociates@tampabay.rr.com), recently gave a stirring presentation on how caregivers can best deal with the loss of their friends because of the demands of caregiving or the discomfort friends feel with the situation. Kindelan emphasized the importance of maintaining current friendships and forming new ones to provide support for you as the spousal caregiver for your loved one. His presentation references and sources are abstracted and described below:

From The 36-Hour Day (Mace and Rabins, The Johns Hopkins University Press, page 228): "Friends are often marvelously comforting, supportive, and helpful. The support of good friends will do much to keep you going through the hardest times. Remember that it is important for you to continue to have friends and social contacts. Try not to feel guilty about maintaining or establishing friendships on your own." "Sometimes friends and neighbors find it hard to accept that a person is ill when he looks fine. Sometimes, too, people shy away from 'mental' illnesses. Many people do not know how to act around a person who is forgetful or whose behavior changes." (page 229): "What can you do if you find yourself becoming isolated? It takes energy and effort to make new friends at a time when you may be feeling tired and discouraged. But this is so important that you must make the necessary effort. Start by finding one small resource for yourself. Little things will give you the guidance and energy to find others." "Join a support group or get one going yourself." "New friends are most easily made when you are involved in activities you have in common with other people."

Nancy Mace and Peter Rabins, authors of this third edition "bible" for caregivers for loved ones with Alzheimer's disease, provide excellent information and guidance regarding the disease process and the impact upon caregivers. Their primary message in the above passages is to maintain friendships despite the many obstacles in your way -- even if you have to be the one to go out of your way to maintain those friendships.

From The Loss of Self (Cohen, PhD and Eisdorfer, PhD, MD, Penguin Books, page 169): "The nature of the relationship with people outside the family is altered. Friendships wither from lack of time given to maintaining them and often disappear. These losses are among the most difficult for the patient and caring family to accept." (page 84): Friends or confidants are probably among the best aids to help you measure off the distance between you and your relative (spouse). Friendships are stabilizing forces. Sharing feelings and experiences with someone you trust may simply make you feel better. Talking about your frustrations often helps you see the world a little more objectively. A trusted friend may also be a helpful critic who is able to compliment your stamina and courage and simultaneously urge you to be a little selfish and think of your own needs some of the time." "This seemingly simple advice may be difficult to follow. Many people are afraid to let their friends know that a husband, wife, or family member has dementia."

While the advice of Drs. Donna Cohen and Carl Eisdorfer is primarily directed as a family resource for the care of Alzheimer's disease and related disorders, it applies to all situations in which you and I are involved as spousal caregivers. Their primary message in the passages above is that friendships are vital to your well-being as a spousal caregiver. You need to "grab the bull by the horns" and maintain old friendships as well as cultivate new friendships if you are to survive your spouse. That means going out of your way to do so -- much as what I am doing (refer to the March 24, 2005, Spousal Caregiving column).

From Taking Charge (Pollin, Random House Value Publishing, page 180): "Abandonment may be one of our greatest fears -- sometimes it's even more powerful than the fear of death. It is a primitive and terrifying emotion, harking

back to infancy, when a mother's withdrawal literally jeopardizes a baby's survival." (page 230): "You might find it helpful to air your feelings and solicit your friends' perceptions in order to maintain valued old relationships." (page 231): "Old friends may pull away because they feel distressed and helpless about your condition or they may be uninformed as to how to include you."

Irene Pollin focuses in on "fear of abandonment" which is a primordial emotion that all of us have experienced at some point in our lives. Her primary message in the passages above is that you, as a spousal caregiver, must be "proactive" in maintaining current, and cultivating new, friendships. As above, you must literally "go out of your way" to do so.

To put the above into perspective, consider the following from The Forgetting: Alzheimer's: Portrait of an Epidemic (Shenk, Doubleday, a Division of Random House, page 116): "Ronald Reagan was also slipping well past the early stages." "Friends and family watched his memory lapses become the rule rather than the exception. There was, for example, the day that former Secretary of State George Shultz visited his old boss. In the midst of a casual discussion about politics, Reagan briefly left the room with a nurse. When he returned a few moments later, he took the nurse aside and pointed to Shultz. 'Who is that man sitting with Nancy on the couch?' he asked quietly. 'I know him. He is a very famous man." "Incidents like these drove him into further isolation. Partly out of simple courtesy to Reagan and partly due to their own personal discomfort, many of his friends stopped visiting when he started having trouble recognizing them."

In these passages, David Shenk focuses on the potential for both caregivers and their loved ones to become isolated from their friends -- as a result of which their friends stopped visiting them. And this was a former President of the United States of America! If it could happen to Ronald and Nancy Reagan, it could happen to you and your spouse.

From my perspective as a spousal caregiver, I find four key concepts emerging from these references:

  • Do not allow yourself and your spouse to become isolated from family, friends, neighbors, etc.,

     

  • Maintain current friendships by reaching out to those friends who appear to be most understanding of your caregiver predicament,

     

  • Develop new friendships to replace those that you may have lost or to reinforce your new role in life as a spousal caregiver, and

     

  • Reach out for support from these friends and from support groups.

I hope and pray that the above will help you in dealing with your concerns about your friends -- and where they have gone. May God bless you with good and true friends as you travel this "journey" as a spousal caregiver.

If you would like to share your concerns about the loss of friends and friendships, drop me a line at ASKBill@caregivershome.com.

WORDS TO CARE BY...

"My brethren have withdrawn from me,
And my friends are wholly estranged.
My kinsfolk and companions neglect me,
and my guests have forgotten me."

(Job 19: 13-14)


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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