JOAN’S BLOG – MON/TUE, JUNE 15/16, 2009 – MAKING A DIFFERENCE

Are you aware of how important you are in the fight against Alzheimer’s Disease? In the fight to raise awareness of the disease, increase funding for research, and in making a difference? If you think you have to spend hours going to committee meetings, help frame policy, and travel to Washington DC or your State Capital to meet with lawmakers, you are mistaken. You certainly can do all of those things if you choose to and have the time, but what caregiving spouse of an Alzheimer’s patient has that kind of time? Certainly not me, as I found out this weekend at my Advocacy Training. In between some amusing anecdotes from my weekend retreat, I am going to tell you what we CAN do to help without ever leaving our homes.  

Cutting through two days of intense education and training, here are the basics. It is most important to understand that there are two main avenues of advocacy – Following the guidelines of the Alzheimer’s Association is one; going it on your own as a private citizen caregiver is the second. If you choose to get involved in advocacy with the Alzheimer’s Association, you must understand that through intensively difficult, tedious, time consuming work, they set the goals and policy for what issues they are going to advocate. They recruit advocates – everyday folks like you and me who are dealing with the disease on a day to day basis, are veteran graduates of caregiving, or are just interested in the Alzheimer's cause for their own personal reasons – to volunteer to help them do the nitty gritty work of meeting with legislatures, making phone calls, making contacts who can get right to the state or federal legislator who can make things happen. If you choose this route, you are representing the Alzheimer’s Association, and must advocate for whatever legislation they have decided to back. (And believe me, they put a LOT of research and work into which bills they feel are important to the Alzheimer cause). If you are interested in becoming an active Alzheimer’s Association advocate, call your local Alzheimer’s Association office.

OR you can go it alone as a private citizen. My philosophy has always been that we are at our best doing what is comfortable for us. I am NOT comfortable soliciting for money – as evidenced by my dismal performance at our Publix fundraiser.  I am comfortable writing and educating, as evidenced by this website. Identify your cause – what is it you want people to know – what cause is most important to you - match it to your strength, and go with it. Before our friend and member Tony Pesare, became an Alzheimer’s board member, he took on the cause of raising awareness of EOAD (Early Onset Alzheimer’s Disease) himself. He is a businessman in his community, so he was comfortable speaking to reporters, community groups, business leaders, and through his business contacts, managed to get billboards about the disease made and displayed in his county. Our member Marsh, is a retired physician, who now knows that when he was practicing, he was not aware of the true stress and burden of caregiving. Now that he sees things from a caregiver's perspective, he speaks to doctor’s groups about the importance of listening to the caregiver and addressing their needs. Dr. Mary Newport uses her experience as a physician, researcher, and spousal caregiver, to educate caregivers about MCT and coconut oil’s benefit on memory.

You do not have to do public speaking or contact businesses to make difference. The number one most important thing you can do as a caregiver is raise awareness of what Alzheimer’s Disease is and does to the patient and caregiver alike by TELLING YOUR STORY. I have mentioned this before, but it bears repeating – Nothing makes more of an impact on everyone – legislators, reporters, doctors, business leaders, and ordinary people, than your own personal story. This sentiment was re-iterated by the Alzheimer’s Association training representatives this weekend. If each and every one of you told your story to ONE person, you would be making notable and worthy differences in raising awareness of Alzheimer’s Disease. The greater the awareness, the greater the chance of our pleas for caregiver assistance, respite, and funding will be acted upon. As I mentioned in the opening paragraph, you don’t even have to leave your house to accomplish this. Telephone, e-mail, letters. Check out this blog for information on what our members do to make a difference.

If you are a political junkie, you can find out what Alzheimer’s legislation is pending, and call and visit your legislators to advocate for its passage. At the end of the blog, I will list some legislation that you may want to investigate more thoroughly.

So here is what I learned this weekend:

*My comfort level and abilities lie in my capacity as an educator and writer. I will continue to inform everyone who reads my website on Alzheimer’s legislation; news; information; and how, when, and where you can help. I will continue to learn, write about, and speak on my passion, which is raising awareness of the true nature of Alzheimer’s Disease as a total brain destruction disease, and its effects on marriage.

*There are still some weird laws on the books in all of our 50 states. Did you know that a license is needed to ride a skateboard in Florida? That a woman can be fined for falling asleep under a hair dryer in Florida? That it is legal for a man to beat his wife on the steps of City Hall on Sunday in South Carolina? (obviously a very ancient law that was never taken off the books) That it is unlawful to wear women’s pumps with sharp, high heels in Alabama? That in Florida, if an elephant is left tied to a parking meter, the parking fee has to be paid just as it would for a vehicle? Now, if a group of legislators actually spent precious time thinking about, writing, and passing these laws, don’t you think they could spend as much time thinking about, writing, and passing laws related to Alzheimer’s Disease that would actually benefit someone in need?

*EVERYONE has the ability to make a difference by doing what is most comfortable for them.

*I cannot drink wine during a “working dinner” and think clearly at the same time.

*No matter how much weight training I have done to strengthen my thigh muscles, I will NEVER be able to get out of the lounges (that literally sit on the ground)  around the pool at Costa d’este resort. However, the resort is sleek, modern, beautiful, and is located right on the beach.

*I always meet interesting, passionate, exciting people at the events I attend, and this one was no different. Jean Robinson is just one of those people. She is an Alzheimer widow, retired dietician, advocate, and writer. I am in the process of reading her caregiving book, and will post a review and information on how to purchase it when I finish.

My gratitude to Peggy Connelly of Harbor Chase Retirement Communities for hosting our training at her lovely facility. The accommodations and food were excellent.

Legislative Bills related to Alzheimer’s Disease:

Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act – UAGPPJA – “The legislation establishes a uniform set of rules for determining jurisdiction, and thus, simplifies the process for determining jurisdiction between multiple states in adult guardianship cases. It also allows state court judges in different states to communicate with each other about adult guardianship cases.”

Physician Orders for Life-Sustaining Treatment – POLST – Translates end of life wishes into an enforceable medical order.

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