JOAN’S BLOG – WEDNESDAY, MAY 7, 2008 – YOU ARE NOT ALONE!

It often happens to me that an idea for a Blog comes from many different places all on the same day. It’s as if an unknown force in the universe is whispering in my ear –  “This is what you will write about”. Yesterday was one of those days. From everyone I spoke with, to the Message Boards, to the e-mails, one theme stood out. “It is so comforting to know that I am not alone in my thoughts and emotions.”

This disease is difficult enough to deal with; it is even more difficult when the emotional ties of a marriage are involved. But what other disease makes the caregiver question if THEY are the ones with the problem because their spouse can act normal in front of others, and 15 minutes later, in the privacy of your home, of course, where no one but you can see,  be confused, angry,  and screaming obscenities?  What other disease places so many family members in DENIAL for years, so the caregiver feels overburdened and isolated? (Family members may not help when there is, for example, a spinal cord injury, but they’re not going to deny it exists, as they do with AD,) What other disease do family doctors deny? I have never heard of a primary care physician, after hearing from you that your spouse was diagnosed with cancer, saying, “He doesn’t have cancer. He looks and acts just fine.” But how many of you have experienced that with one or more doctors concerning your spouse’s AD?

The result is that you feel, not only alone, isolated, and depressed, but you begin to question your own judgment and sanity. That is one of the reasons for the existence of this website – to let you know that you are NOT ALONE; YOU ARE NOT CRAZY; AND YOUR JUDGMENT IS SOUND.

When you read my Blogs and affirm my thoughts and feelings on the Message Boards and in e-mails, I gain strength and comfort from that. When you read my Blogs and relate my emotions and struggles to your own; when you read on the Message Boards of other’s coping with the same, you gain a measure of peace from that. Almost a feeling of joy- “Hey, I’m not nuts. Others feel as I do! Other’s are trying to cope with the same AD behaviors and marital problems associated with them, as I am.”

Yes, I believe in raising the general public’s awareness about the destruction Alzheimer’s Disease reigns on caregivers as well as the patient, but my main mission is to bring awareness to YOU, the caregiver spouse, that you need not feel guilty if you are disliking the “raging bull” you are living with on a particular day; you need not feel guilty that your feelings of intense intimate love have changed to a parent/child type of love; you need not feel that you are the only one experiencing resentment; loneliness; anger; hurt. You need not question your judgment of your spouse’s condition. I do not want any AD spouse anywhere to ever feel as I did at the beginning of this journey – that my character was severely flawed because I felt fear, confusion, and guilt, rather than love, understanding, and acceptance. The latter comes with education, support, experience, and time, time, time, and more time. And maybe not even then. It is an ongoing process. So log on and know you are not alone.

Feedback to joan@thealzheimerspouse.com

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