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Posted: March 24, 2005

Spousal Caregiving

Dealing With the Loss of Friendship While Caregiving

Bill Andrew

Alzheimer's disease is one of the most insidious conditions for the patient -- and the caregiver. I know this from experience, as 24/7 caregiver for my wife Carol. But what happens when our friends and neighbors start to shy away from us at a time we especially could use their help?

That's Arthur's dilemma. He wonders what he can do to change things with his once-close and supportive friends, to bring them close again. While overall estrangement like this can be especially acute in Alzheimer's cases, it is not unique at all to caregiving for this diagnosis -- it's a question that confronts many caregivers in many situations.

Let's dip into my "ASKBill" e-mailbag to read Arthur's story and see if my years of caregiving experience can lend some help.

_____

Dear Bill:

Since my wife was diagnosed with Alzheimer's disease several years ago, my life has been rather hectic -- to say the least. While I have been able to address most of her caregiving requirements, what bothers me the most is that many of our friends and neighbors seem to be avoiding us. I understand that this is not unique to Alzheimer's disease patients, but to other terminal diseases as well.

Do you have any suggestions as to how I can let them know that we miss them?

Arthur L., Hartford, Connecticut

Dear Arthur:

Yours is a common problem and I intend to write a column on that subject in the near future with the assistance of a psychologist friend of mine. The subject of that column -- perhaps two columns -- will be "Where Have All My Friends Gone?" In the meantime, let me try to address your present concerns.

It can be very confusing and frightening for your friends to see your wife losing her cognitive capabilities and memory to the onslaught of the Alzheimer's disease. Perhaps in the early stages, she can "fake" her way through a specific situation -- often called "clinical social facade." They don't really understand that Alzheimer's disease is not a mental disease but a physiological disease with mental manifestations.

Perhaps they worry that whatever your wife has is "catching." Or perhaps they cannot handle the fact that your once vital wife is no longer as she once was and they can not easily accept that fact. Sometimes, it is just easier for them to stay away and not have to think about what has happened to your wife and to you.

As you have indicated, this issue is not unique to Alzheimer's patients. It is a common denominator for most terminal diseases -- and Alzheimer's is a terminal disease that takes a longer time to reach the end than most other terminal diseases. My sister was diagnosed with small cell lung cancer about two years ago. Upon the initial diagnosis, every one of her friends and neighbors were very compassionate and concerned. However, as time went on and she seemed to be beating the cancer, these same friends and neighbors called or came to see her less often. She felt quite badly about that, and we discussed my situation to see if there was a common ground -- and there was! You will find that our respective situations -- yours and mine -- have a lot in common with other caregivers. My sister died last summer, and I am sure that she was still concerned and prayed for those friends and neighbors who did not find it in their hearts to continue to support her through the disease process.

I have three issues for you to consider.

How can I cope with losing our friends? It can be really hard to face up to the fact that the people you thought were your real friends do not have the "guts" to stand by you and your wife in your time of need. You can try to discuss your concerns directly with your friends and determine why they have stopped coming around. Perhaps they don't how to handle your wife's illness as discussed above. If this does not work, they are not the true friends you thought they were.

How can I value our real friends? It is much better to value the real friendships that you have. These are the ones who stick by your side during the difficult times as well as the easier times. It is important to tell them how you feel about your friendship with them. Ask them to help you and value their friendship by thanking them for their support.

How do I find new friends? You will find that there are other caregivers with similar problems. I would suggest that you join a support group, if you have not already done so. Cultivate the relationships that you develop and you will find that you have new friends who can relate to your situation. A future column will address the value of support groups.

From a personal point of view, I take the position that if our friends won't join Carol and me, then we will join them. We do this by "mainstreaming" Carol in everything that we do -- within reason, that is. Dinners with our friends on Friday nights, church on Sundays, shopping, running errands, meetings, support groups, special events -- these are just a few examples. If they cannot accept her as she is, then they will no longer be our friends. I also ask them to sit with Carol on various occasions, and their spending several hours of quality time alone with her is often very revealing. Some may find excuses for not sitting with her and I accept that for the reasons discussed above.

Arthur, I hope that the above helps you in dealing with your concerns about your friends. Watch for the future column "Where Have All My Friends Gone." God bless you for being a dedicated and concerned spousal caregiver. And may God bless you with good friends.

_____

If you would like to ask a question about your spousal caregiving "job", do not hesitate to send me an e-mail at ASKBill@caregivershome.com. Remember, I can only share my personal experiences with you and can not provide any advice that would require specific licensure.

WORDS TO CARE BY...

"Every friend will say, 'I too am a friend',

but some friends are friends only in name."

(Sirach 37: 1)


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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