JOAN’S BLOG – WEDNESDAY/THURSDAY, AUGUST 27/28, 2008 – THE IMPORTANCE OF OF EARLY STAGE EDUCATION FOR NEW SPOUSAL CAREGIVERS
Note: This information is applicable to all caregivers, but since this website focuses on spousal issues, I am staying with that emphasis.
The most prominent source of frustration I hear from new spousal caregivers is the confusion and despair in how their spouse’s personality change has affected their ability to communicate, compromise, and solve problems together as a couple. The cries of “What is WRONG with him/her? Why won’t they listen to REASON? Why can’t we discuss a problem in a calm, reasonable manner? Why are they screaming at me, slamming doors, pouting like a baby?” are almost universal. That frustration and confusion is leading to monumental stress for the caregiver spouse, who is completely clueless as to what has happened to their once loving, solid relationship. I have heard many stories of objects being thrown by both spouses who never would have reached that level of anger before. If they have not yet made the connection that it may be a problem that requires a medical diagnosis, these early stage difficulties often lead to divorce, as discussed in a previous blog. After all, who would suspect Alzheimer’s Disease, which is a MEMORY DISORDER, right? Who would ever connect Alzheimer’s Disease with all this screaming and irrational behavior, even if there were memory problems?

But let us assume that medical intervention has occurred and a diagnosis of Alzheimer’s Disease has been reached. What now? Most often, the patient is sent home with prescriptions for Aricept and Namenda, and the spousal caregiver feels like they have been hit by a fast moving truck,  left lying on the road to fend for themselves. In my case, the neurologist handed me a copy of The 36-Hour Day, and told me to contact the Alzheimer’s Association. I stood there, book in hand, stunned.

As you know, I did call the Alzheimer’s Association; we did join a support group that has been a lifeline for both of us. HOWEVER, it has been a long, slow, torturous journey to learn that the early behaviors are “normal” for AD; how to handle them; how to change my perception of our relationship; how to accept the change in the relationship; and how to react to my husband’s altered personality.

The original model of my particular support group (long since abandoned by the time we joined) is one that I think should be followed in every county in every state all over this and other countries around the world for the newly diagnosed. It was designed as a 6 week Introductory Seminar on Early Stage Alzheimer’s Disease. Each week a different topic was covered. It was educational and informative based, rather than support based. (Transition to an actual “support” group occurred at the completion of the seminar.) How different would our early days of this disease have been, if, while we were crying in confusion at the personality and behavior changes in our spouses, we were given specific answers to the questions posed above – “What is WRONG with him/her? Why is he/she behaving like an irrational child?”

I do not have the syllabus for the original Introductory Seminar, but an example should be:

1.Behavior and personality changes in Early Stage Alzheimer’s Disease – that they are to be expected, and how to respond to them
2. Relationship changes – what to expect and how to handle them
2. Comprehension difficulties – how to compensate for them
3. Communication difficulties – how to make communication easier
I am a very organized person. I like information presented in a straightforward, sequential, structured manner. If this had been given to me in the beginning, I honestly believe our road would not have been as bumpy. (Bumpy? Who am I kidding –more like potholes and sinkholes than bumps.)

The help and support I have been given through my support group has been invaluable, BUT it came in bits and pieces, starts and stops, intermingled with late stage caregiver tips. How much better off both of us would have been if we KNEW what was happening to my husband, to our relationship, and given information right at the beginning as to how to handle it. Sid has told me that while he was “flying off the handle”  and being irrational in the very beginning, before the diagnosis, he recognized that he could not control it, and was as confused as I was as to what was happening. Even after the diagnosis, we did not realize that AD had such an effect on behavior. Knowing Alzheimer’s Disease was doing it to him would not have changed his behavior, but it certainly would have helped me understand and learn more about how to cope with it.

I am sure many of you are thinking – “My spouse would never attend such a seminar. They are in denial about their problem. They think I am the one with the problem.” I fully understand that, but would YOU attend such a seminar? I would hope so. I will never stop believing that “Knowledge is Power.” The more we learn about what we are forced to deal with, the better we will be able to handle the burden placed upon us.

I am in the process of writing the workshops for my public presentations, and Early Stage Behavior Changes will be one of the topics.

Feedback to joan@thealzheimerspouse.com

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