JOAN’S BLOG, MON/TUE, MARCH 16/17, 2009 – A MESSAGE TO OUR NEWEST MEMBERS- (Veteran members, too!)

In a testament to how desperately Alzheimer spouses need support related to their unique issues, this website’s membership is growing in leaps and bounds. Although there is a “Welcome New Members” thread on the Message Boards, and a separate section on the left side of this homepage with resources and information for new members, I felt it was important at this time of website expansion to write a blog that addresses the fears and uncertainties of new members (and a reminder to veteran members also).  In a bit of a departure from my usual writing style, I am going to do it as a list:

1.Our issues ARE unique – This is the reason I started this website. Although caregiving problems are similar for everyone ( bathing, feeding, handling temper tantrums, incontinence, etc.), the EMOTIONAL issues for a spouse are completely different from those involved in caring for a parent or grandparent with Alzheimer’s Disease. Generally, spouses have no one who understands the loss of partnership, lover, intimacy, sex, companionship, conversation, and the emotional bond that comes with marriage. We understand it here. Not only do we understand it, we discuss it in my blogs and on the message boards - openly, honestly, non-judgmentally, and with respect, as you have never heard it discussed before.

2.Shock and confusion – The diagnosis of Alzheimer’s Disease almost always brings both. Shock that this is happening to you and your spouse, and confusion as to what to expect, what to do about it, and where to turn for information, resources, and support. The left side of this website may not have it all, but it comes very close to giving you as many of the resources of information that you could possibly need.

3.Experience – Alzheimer’s Disease is a long, treacherous journey with many pitfalls. . We learn from every step we take on this journey. When someone joins this website, they can be in an emotional upheaval over an Alzheimer’s induced incident; desperate to vent to someone who understands; full of medical questions; alarmed at their spouse’s personality change; distressed at the unexpected Alzheimer rages. Whatever it is that brings a spouse to the Alzheimer Spouse website, they will find someone who has “been there”, “done that”, and can offer advice and support on the message boards or validation in my blogs. If I were asked to choose the #1 benefit of the this website, besides the warm support and resources, I would choose the knowledge that we are not alone in our thoughts and feelings, as evidenced by the message board posts and my blogs. I launched the website by writing blogs, and continue to do so, about my own emotions of loss, anger, loneliness, and living with a stranger who bore little resemblance to the husband I had loved for decades. E-mails poured in thanking me for writing what others felt, but had been afraid to express, due to guilt and fear of being the only spouse who felt those emotions.

4.One Day at a Time – To everyone who is new, and everyone who is a veteran of this disease, I cannot emphasize enough that “One Day at a Time” has to be our mantra. It is prudent to be prepared. – check the “Financial Section” on the left side, but if we spend all of our time worrying about what tomorrow, next month, next year, will bring, we will sap our physical, emotional, and mental energy, which we need for dealing with the challenges Alzheimer’s disease brings us TODAY. 

5. Young Members – You are not alone, either. We have many members whose spouses have EOAD – Early Onset Alzheimer’s Disease, defined as being diagnosed under the age of 65. But we have many in their 40’s and 50’s with young children at home, which brings its own set of problems. Please click the topic on the side, titled EOAD for more information. I urge everyone with younger children at home to click the section under EOAD, titled AFA Teens. It is a website like this one, except instead of spousal support and information, it is by teens for teens of parents with Alzheimer’s Disease.

5. Home Page Updates – Although many of you log onto the message boards first, I urge everyone to check in on this homepage a few times every day, as there are always daily news and information updates.  At the urging of my caring members who are worried about me dropping from exhaustion, blogs are written and kept at the top for two days, instead of one. That turned out to be a good idea, because it takes a couple of days for everyone to log on and read and respond to the most current blog.  (See, I DO listen to you and take your advice!)

6. Website Stores – Please be sure to click on the  Marketplace (all products designed by little old me or you can design your own);  Book Corner ; marketplace (on the left side of the website), and the Zazzle and Amazon links on the right side of the website. A purchase from any of those stores gives me a tiny bit of help with the expense of running the website. Website membership payments are voluntary, and if anyone is able to send a payment to help keep the website free and accessible to all who need it, click here.

7. I try to welcome each of you individually, but because of the huge increase in membership and the multitude of message board posts, I do not always see new member posts. For this reason, I am going to put this blog  as a “Welcome from Joan”, and make it a “sticky” at the top of the Message Boards (at the end of this week). I want to make sure every new member is aware of every resource and support system we have available here.

Feedback to joan@thealzheimerspouse.com

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

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