JOAN’S BLOG – MONDAY, JANUARY 21, 2013 – LET’S GET THE HELP WE NEED

In my last blog (see below) I told of the plight of my neighbor, who was overwhelmed without any resources, information, or help, in caring for her disabled husband. We discussed a bit on the message boards as to how new caregivers, especially Alzheimer caregivers, could get the education and information they needed in the beginning, before they were overwhelmed. Today’s blog delves deeper into my ideas on how to deliver information and assistance to Alzheimer caregivers at the beginning of their journey.

Let’s suppose for a minute that you lived your entire life in a land locked state such as Kansas. You did not travel, so had never set foot in the ocean. You knew of acquaintances who had joined pools and learned to swim, but it was not something that interested you, and you really saw no need to learn.

One day, with no warning, and having no knowledge of how you got there, you find yourself on a boat in the middle of the ocean in a raging storm. You are thrown overboard with no life vest, no water skills, and no swimming ability. You scream for help, feel the water filling your lungs, gasp for air, and know that you are about to die.

This is what happens to Alzheimer caregivers. Most have never been involved in caregiving, thus, see no reason or need to learn about it. Then one day, they are given the news that their loved one has Alzheimer’s Disease. They are most likely given prescriptions for Aricept and Namenda, and told to make another appointment with the neurologist in 6 months. They are, literally, thrown into the raging waters of Alzheimer caregiving with no life vest, no skills, no coping abilities, and before the next neurology visit, find themselves gasping for air, knowing they are going to die if they do not get help soon.

When I joined my support group, it was an ongoing twice monthly open ended discussion on particular issues each person was facing. Newcomers were given a packet of brochures and information. It was packed with information, but in my opinion, too overwhelming for a new caregiver.

What to do about it? Before it evolved and changed (long before I first attended), my support group was set up as a 6 week seminar for newly diagnosed Alzheimer patients and caregivers. Different topics were taught every week, covering everything from a primer on the stages of Alzheimer’s Disease to what to expect and how to handle rages, irrationality, lack of judgment, reasoning, and driving. There was information on finances, legal documents, and Medicaid. Although not included, I would certainly have made sure the emotional upheaval and changes in a marriage were covered. I have something similar in written form on the left side of this website titled – New Member/ Newly Diagnosed.

It is my opinion that when a loved one is diagnosed with Alzheimer’s Disease, a 6 week seminar similar to what I have described, should be available to them immediately. It should be the diagnosing doctor’s responsibility to inform them that Alzheimer’s Disease is a long, tough road, and they need to attend the seminar in order to be able to cope. If the diagnosis is early enough, the patient should also attend.

The next question is……………who is going to design and present these seminars? You know what I always advocate – If you want something done……………do it yourself. It is how this website came about. I needed emotional spousal support, and it was not available, so I made it available. Imagine if one person in every county in every State gathered the information needed and volunteered to present the seminar. Mission accomplished.

Of course, it’s not as easy as that. Most caregivers do not have the time or energy for such a monumental task. There may be some who have “graduated”, either by the death or placement of their spouses, who may want to take on the challenge. Now that things have settled down here at my house for the time being, and I am no longer caregiver to two people, AND my husband attends Day Care 3 days a week, I am thinking about writing the seminar and making it available to those who would like to give it a try.

Whatever we decide to do, something must be done. Caregivers need HELP. They need INFORMATION. And they need it BEFORE they have a mental breakdown.

If anyone had any other ideas, I would love to hear them. Post them on the message boards.

MESSAGE BOARD: Joan’s Blog – 1/21/13 – LET’S GET THE HELP WE NEED.

Feedback to joan@thealzheimerspouse.com
©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2010 All Rights Reserved
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RECENT BLOGS:

AD Patient - To Vote or Not to Vote - - At what point do you no longer allow your AD spouse to vote? - October 12-14, 2012

The OMG! Award - How a friend and I handle the never ending crises with humor - October 18/19, 2012

Alzheimer's Disease is Destroying My Life - November 6/7, 2012

Finding Joan - After a week's respite at my sister's house for Thanksgiving, I found out that I still exist outside of Alzheimer's Disease - November 26/27, 2012

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The Alzheimer Spouse LLC 2010 All Rights Reserved