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You have come to a place of truth, support, and solutions to the distinctive issues and challenges faced by the spouses of Alzheimer patients. Please CLICK HERE for an introduction to this website and all of its resources.

Scroll down for Joan's Thurs/Friday Blog - I Delivered Your Message to Capitol Hill

Scroll down for Tracy Mobley's March Guest Blog - "I Miss You" - How Dementia Changes a Marriage - from the perspective of the person with dementia.

Scroll down for a link to fun pictures from the Caribbean Caregiver Cruise.

Karen Henley and her teens take their story of husband and father's Early Onset Alzheimer's Disease to Capitol Hill

President Obama commends SSA commissioner, and Alzheimer's Association

Neurologists Going to Capitol Hill to Push for Health Care Reform

CLICK HERE for pictures of our members on the Caregiver Cruise to the Caribbean. My sources tell me that a great time was had by all.

NEWS ARCHIVES

JOAN’S BLOG – THURS/FRI.- MARCH 11/12, 2010 – I DELIVERED YOUR MESSAGE TO CAPITOL HILL

Here I am back from my DC Advocacy Forum adventure and a good night’s sleep in my own bed. The experience was exhilarating and exhausting; serious and funny; intense and lighthearted; inspiring and sobering; and one not to be missed if you ever get the chance to participate.

Do not worry – I will not bore you with the legislation details and statistics. I will provide links for those of you who wish to read the nitty gritty facts and figures.

The bottom line is that real people living with Alzheimer’s Disease and their caregivers – close to 600 delegates from almost every State, descended upon Capitol Hill to take OUR message to the Senators and Legislators that we need HELP and we need it NOW. Let me assure you that either I, personally, or someone else from your State delivered your messages with clarity, brutal honesty, and compassion. The delegation consisted of young children, teenagers, young adults, spouses, parents, grandparents, and those living with Alzheimer’s Disease. Young and old, Republican, Democrat, Independent, Unaffiliated, conservative, liberal, moderate, Southerners, Northerners, Easterners, Westerners – a completely diverse, NON PARTISAN group came together for one cause – Alzheimer’s Disease.

The pace in Washington DC can wear out the heartiest, most athletic soul. This was my third year, so I knew what to expect, but the first timers were obvious to spot. They were the ones with the “deer in the headlights” look, who exclaimed in shock, “You’ve GOT to be KIDDING!”, every time they realized they had 15 minutes to walk miles, map in hand, to get to the next appointment. Being just a bit more savvy this year, although no less worn out, I knew I could grab a bite to eat between my noon and 1:30 appointment, because there is a corridor connecting the two different buildings in which the appointments were scheduled. A very LOOOONG corridor, with a lot of equally long corridors at the end of turns, but at least I did not have to go outside and go through security again.

As I have mentioned before, the National Alzheimer’s Association makes the decision as to which legislation the delegates are lobbying for. However, we are allowed and encouraged to present our personal stories and how the passage of the legislation will affect us. So here is what we said on your behalf:

Alzheimer’s Breakthrough Act (S.1492) (H.R. 3286) – Click the link to read the bill, but cutting through the pages of legalese, it simply means that we are asking for $2 billion for Alzheimer’s Disease research at the NIH. Sound like a lot of money? Hardly. Currently, out of every $25,000 spent on CARE for an Alzheimer’s patient, $100, that is ONE HUNDRED DOLLARS, is spent on research. There is a direct correlation between research money and deaths from diseases. Between 2000 and 2006, deaths from heart disease decreased 11.1% because of the research; deaths from HIV decreased 16.3%, and deaths from Alzheimer’s Disease INCREASED 46.1%.

Alzheimer’s Detection, Diagnosis, Care, and Planning Act (ADDCAP)– will increase detection and diagnosis of Alzheimer’s Disease and other dementias, and provide, access, information, and support for newly diagnosed patients and their families. This is not even a bill yet. We are looking for co-sponsors to present it as a bill. I wanted to speak up about this one. It is important to note that we spoke with senior aides to our representatives and senators. “Senior” means “experience”. It does not refer to age. Most of these people are 25 years old. So I went to work on educating them:

AD is misunderstood by the public, patients, caregivers, and most of all – DOCTORS, particularly Primary Doctors
Because of this misunderstanding, it is dismissed, ignored, and misdiagnosed, causing the afflicted and their families undue stress, financial setbacks, and precious loss of treatment when it could be beneficial and increase quality of life.
It is NOT NORMAL AGING – My 92 year old father is as cognitively sharp as a 40 year old.
It is NOT exclusive to the elderly – 52 year old Jay Jones, who was diagnosed at age 46, was sitting right in front of them. Tony Pesare told them about his wife who was diagnosed at 39, and died at 43. I told about my husband who started showing signs at 59.

Since legislators are all about $$$$$$$$, I explained the monetary value of early detection and treatment. If my husband had been PROPERLY diagnosed early enough, and stabilized with the appropriate medication, he possibly could have worked a year or two longer. Multiply that by the hundreds of thousands of EOAD afflicted who have to leave the work force early, and you have millions of dollars in SSDI payments saved.

Laura Jones emphasized how much money she and her husband paid INTO the system when Jay was head of a million dollar business, and how they are now what she called a “drain on the system”, because they collect money from the government rather than contribute.

There was Diane, who told how she and her husband had met at age 14, and had been together for over 60 years, and what AD has done to them emotionally. There was Roni, who told of the pain of caring for a mother with Alzheimer’s Disease. We were 13 from the Florida delegation. Stories like ours and yours were repeated by every delegate from every state to each Senator and Representative and/or their senior aides. We emphasized the need for caregiver help IN THE HOME. Your voices were heard.

National Alzheimer’s Project Act (NAPA) (S. 3036) ( H.R. 4689) – will establish a National Alzheimer’s Project Office and inter-agency Advisory Council responsible for creating a national plan to overcome the Alzheimer’s Disease Crisis. This is a direct recommendation to come from the Alzheimer’s Study Group that gave its report in a Senate Hearing last year. It was a totally BI-PARTISAN commission – members included Newt Gingrich(R) and former Senator Bob Kerrey(D), as well as former Supreme Court Justice Sandra Day O’Connor.

For those of you who are into facts, figures, and graphs, you can find them in the 2010 Alzheimer’s Disease Facts and Figures.

It wasn’t all serious business. We had fun, laughs, and enjoyed meeting up with old friends and making new ones. The cafeterias in the House Office buildings are jam packed, and you find a seat wherever you can, which means sitting with people you do not know. It provides an opportunity to educate and inform about Alzheimer’s Disease. One of the men with whom I was sitting, had an elderly next door neighbor with AD. He was surprised to learn from me that his 80ish neighbor shares the disease with 40 and 50 year olds.

I shared a shuttle to the airport with four women – two were African American, and we discussed the problem of reaching the African American community with AD information, resources, and services. Another of the women was a speech/language therapist as I had been.

I have one little amusing story for you, and then some pictures below. The senior Aide to my congressman (Rooney – 16th District Florida) told me that she was familiar with Alzheimer’s Disease and the devastation it brought to patients and caregivers because she did an internship during college at an Alzheimer’s Facility. She was the average aide age of about 24 or 25. Maybe she was older, but they all looked 12 to me. Anyway, I told her that I bet the people she worked with were quite elderly – in their 80’s – to which she concurred. I took the opportunity to tell her about EOAD, and mentioned my own husband, who was barely 60 when his symptoms first occurred. I thought I did a fine job.

When my long day on Capitol Hill was over, I was discussing this incident with our Advocacy and Public Policy Coordinator, who is in her early 50’s, I think. She said to me, “Joan, did it ever occur to you that from her perspective, YOU are elderly?” Hmmm, well, now if she put it that way……………..I guess to a 20 something, 61 is ELDERLY.

600 of us did our part. If you would like to help, you can look up the bills mentioned above, and write to your congressmen/women and senators asking for their support. If you know who your delegates to the Forum were, mention that you are following up on their visit. If you do not know who they are, mention this website, and that you are following up on my visit. And tell your OWN stories.

My thanks to everyone who e-mailed me with their stories and concerns. I tried to do justice to them.

I have mentioned only a few of the highlights of the Forum. For a slide show of pictures and information, click this link.

My thanks to the Alzheimer's Association for providing me with a scholarship that made the trip possible.

Joan and Tony Pesare – the new beard is the result of losing a Super Bowl bet with his sons.

Harry Johns, President and CEO of the Alzheimer’s Association, presenting the Humanitarian Award to SS Commissioner Michael Astrue “in recognition of his exceptional leadership in creating the Compassionate Allowances Initiative and the decision to include early-onset Alzheimer's disease and other dementias in that initiative.”

Florida Delegation

Florida Delegation on their way to Capitol Hill appointments

Tony Pesare in front of the Capitol

Please give your opinions and ideas on the bills on the MESSAGE BOARD TOPIC: I Delivered Your Message to Capitol Hill

Feedback to joan@thealzheimerspouse.com

©Copyright 2010 Joan Gershman
The Alzheimer Spouse LLC
2010 All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

JOAN’S BLOG – MARCH 4-7, 2010 – BRINGING YOUR MESSAGE TO WASHINGTON DC

For the third year in a row, I have the privilege of attending the Alzheimer’s Advocacy Forum in Washington, DC from Sunday, March 7 – Tuesday, March 10th. You can read about the Forum, its purpose, and the schedule by clicking this link, but once again, I am asking for your input.

Although The Alzheimer’s Association makes the decisions as to what bills on which they want us to focus our lobbying efforts, our personal stories make the most impact with the legislators. I can attest to this from first hand experience. We are usually paired up in two’s, and have specific appointments with legislators and/or their aides to discuss the legislation we would like passed and why. The “why” is where you and I come in.

Last year, my partner discussed the legislative agenda, while I gave the personal, emotional side of the story. I talked about how Alzheimer’s Disease impacted my husband, myself, and our relationship. I emphasized the devastating effects of the disease as a “brain destruction” force, rather than a simple “memory loss” problem. And I told some of your heartfelt stories of emotional and financial loss.

I can tell you that the stories of Early Onset Alzheimer’s Disease made the most impact. It jolted them practically out of their seats. Many of the aides are straight out of college, and have not yet seen the other side of 25 years old. They are familiar with their grandparents’ Alzheimer’s Disease, but when they were told over and over again about the 40-55 year-olds who were afflicted with the disease, they were stunned and disturbed. It also had quite an impact on the legislators who are in their 40’s. They realized that they were at risk, not just their parents.

You may be skeptical that politicians pay any attention to a word we say, but the recent Social Security victory in which Alzheimer’s Disease was added to the compassionate allowance list, is proof that they do listen. If not for the efforts of advocates like Jay and Laura Jones, who testified, wrote letters, made phone calls, and were obstinately persistent, I doubt we would have achieved that success.

So I am asking you to tell me what YOU would say to a legislator if you were sitting across from them in their office, as I will be. I can promise you that I will relay some of your stories. You have the opportunity to be a “virtual” lobbyist through me. What would you tell them? What do you want them to know about how Alzheimer’s Disease has affected your life and the life of your spouse?

MESSAGE BOARD TOPIC – Joan is bringing your message to Washington DC.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – WED/THUR, MARCH 3/4, 2010 – ANOTHER GLIMPSE INTO THE FUTURE

When I was in Rhode Island last weekend attending to family business, I had a frightening glimpse into the possible future with my AD husband.

My father remarried 6 years after my mother died at the age of 49 from lung cancer. I was 28 years old, married, and the mother of a 2 year old, at the time of the wedding. He married a woman who, rather than try to replace the mother I lost, became the friend I needed. She came with a son the same age as my sister, so she gave us the gift of a brother we had always wanted. For 3 decades, we were friends and confidantes. She was always there when I needed a helping hand, a museum trolling buddy, a book swapper, and much to my father’s dismay, a QVC shopping partner.

I saw her this past August, and in November she had a massive stroke. My sister, who lives in Chicago, flew to RI in November, but this weekend was the first time I had seen my stepmother since before the stroke. When I walked into the hospital room (she is battling pneumonia), she lifted one arm, and her eyes acknowledged my sister, who also flew in for the weekend. She looked right through me as if I were a stranger. There was no recognition on her face. I was not prepared for the pain I felt. It was irrational on my part, I know, but I was deeply hurt. I felt as if I did not exist. As if our history had been obliterated. And then I was hit with a double whammy. If I was that hurt by her lack of recognition, how devastated will I be if Alzheimer’s Disease erases my husband’s memory of me?

In one short moment, I understood the anguish you have written about when your spouse no longer recognizes you. It is a sorrow no one could understand unless they have experienced it. I admonished myself for ever thinking I could empathize with your emotions when eyes you have known and loved for years stare through you with blankness.

My stepmother does not have Alzheimer’s Disease. Her comprehension of what is being said to her is mostly intact, although she is unable to answer coherently. And her recollection of me returned as soon as I hugged and kissed her. Tears flowed freely from both of us.

But my husband? Once he loses his memory of me, will it ever return? Will it come and go as many of his abilities do now? It is not something I ever looked forward to, but after my glimpse into the future last weekend, it is an occurrence I now truly dread.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG, MON/TUE MARCH 1/2, 2010 – GUEST BLOG BY TRACY MOBLEY – “I MISS YOU”

This month, Tracy Mobley writes about a subject closest to our hearts – how Alzheimer’s Disease/dementia, has changed our marriages. For those of you who are not familiar with Tracy, she is a 45 year old married mother of a 15 year old son, Austin. Her husband, Allen, has stood by her, and struggled with her Early Onset Dementia (Frontal Lobe) for 7 years. Tracy is the author of Young Hope/The Broken Road, and founder of Camp Building Bridges, a respite camp for youngsters who parents have Dementia.

I am honored to present Tracy’s March Blog – “I Miss You” – from the perspective of the spouse with the dementia:

I MISS YOU!- By Tracy Mobley

Since my diagnosis my relationship with my husband has changed. In the beginning it was small subtle changes like me forgetting to leave little love notes around for him or write notes on our dry erase board letting him know that I still love him. But since my progression, he tells me that he “misses me” and I tell him that “I am right here”. He says that it isn't the same. He says that he misses the affection and happy person that I once was. I know that I am not the same but I don't see the major changes that he does so it is hard for me to understand. I often catch him staring at me and I know that he is wishing that things were the way they used to be. That is one of the memories that I have lost, I don't remember who I used to be or what I was like.

Trust is a very big issue with me. I don't trust him when it comes to legal issues with me. I have no real reason not to, but I don't. I know this is when I should trust him most. There was a time when he tried to force me to let him have guardianship of me so when the time comes there is no court battle or anything, and I think that is where that feeling of lack of trust comes from. By force, I mean that he hounded me for several days about signing the papers and I was afraid that if I did and he got tired of me, he would drop me off in a nursing home and forget about me. You have to remember that my thoughts are coming from a person with frontal temporal lobe dementia, so my reasoning and logic I am sure were clouded at best. He finally gave up and I have yet to sign those papers.

I know that in my own mixed up mind that we are not as close and affectionate as we used to be. I tell him that I don't think of closeness, I don't think of hugs and kisses, so if he wants that he needs to let me know. He has gotten better about telling me that he needs a hug in which I so very willingly give. All of those things that used to be taken for granted in a marriage were stolen from us by a dark stranger in the night known as frontal lobe dementia. When we go places we still hold hands and he rubs my back. Things that should come so easy, I have to really think about because my fore thoughts aren't as free as they used to be. When he tells me that he misses me, sometimes I can feel myself blush as a school girl at times. I don't understand his feelings, as they are only words that I no longer understand or comprehend. I do tell him that I love him and I am sure that somewhere deep inside my mind, I miss him too!
©Copyright 2010 Tracy Mobley

Once again, I thank Tracy for this insightful, heartfelt blog, that gives us, the caregiving spouses, a deeper understanding of the emotions of our husbands and wives with Alzheimer’s Disease/Dementia. Her contribution to this website is invaluable.

Message Board Topic: Tracy Mobley’s Blog – I Miss You.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – THURS/FRI, FEBRUARY 25/26, 2010 – THE OLYMPIAN CAREGIVER

If sleep is not important to you, or you have a DVR, you have probably been watching at least some of the Olympic coverage these past two weeks. As I heard the stories of athletes triumphing over injuries , defeat in spite of their best efforts, extensive, grueling, painful training for almost as many years as they have been alive, emotional, financial, and mental strain, I thought about us – the spousal caregivers of Alzheimer patients.

As mentioned in my Mon/Tue blog, I am currently going through a difficult emotional period in response to my husband’s latest downslide on the Alzheimer’s scale. There are days that I feel so discouraged and sad that we are living in this Alzheimer’s Hell, that I wonder if I will make it through. As he is slowing down physically and mentally, I am speeding up, picking up the slack, handling more and more of the home, work, medical, and financial tasks. Alone.

Then I thought about the Olympic athletes. The same qualities that mold a person of raw talent into a world class Olympian athlete are those that turn ordinary human beings into Olympian caregivers. Courage, tenacity, determination, persistence, and the ability to keep on going no matter how many times they are injured physically and emotionally.

That is us – you and me and every spouse caring for an Alzheimer husband or wife. No matter how often Alzheimer’s Disease discourages us; defeats us; knocks us down; wounds us emotionally, we pick ourselves up and keep going.

More emotionally difficult than falling on the ice, a ski slope, or a snow board course after years of training, in front of a billion people, is watching the love of your life lose their personality, mental and physical abilities, memories of your life together, and essence of being. And knowing there is nothing you can do about it, except get up, hold your emotions in check, and keep on caregiving. If that is not worthy of a Gold Medal in Caregiving Olympics, I do not know what is.

So to all of us Alzheimer Spouse Caregivers – I award each and every one of us a GOLD MEDAL. We have earned it!

MESSAGE BOARD: The Olympian Caregivers

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – MON/TUE., FEBRUARY 22/23, 2010 – HELP – MY POSITIVE ATTITUDE GOT LOST

My positive attitude needs a tune up. I find myself unable to keep up with the emotional strain of my husband’s declining abilities. I am being whirled around in a never-ending vortex .

He is increasingly forgetful about important matters, such as locking the front door, eating, shaving, taking showers. If I mention any of this to him, his first reaction is to deny it (of course), then say he does not remember it, then become depressed because he can neither remember what he is supposed to do, nor remember that he did not do it. Around and around we go .

I do realize that I should not be saying anything to him about what he forgets. The standard advice in these situations is to lock the door, give him his supper at a certain time, tell him he needs to shave and shower, and not waste my breath reminding him about any of it.

But these newest declines are doing more than just making me dizzy. They are speeding up that transition from wife to caregiver. When that shift is complete, the tenuous hold I have on our ever-fraying spousal bond will break, and I will be forced to live no longer as a wife, but as a caregiver to an adult sized child. Each time one of these new emotional phases occurs, it is more difficult than the last.

I am lonely, and I am tired. I am lonely because I miss my husband, and it is so difficult, if not impossible, to carry on an intellectually stimulating conversation with the man who inhabits my husband’s body. I am tired because I work, take care of him, and do every single thing related to keeping the household running smoothly. I drive everywhere, and take him to at least 2 doctor appointments or tests a week.

I had an odd experience last week, which made me realize just how much I and all of us caregivers have on our shoulders. My cousin is my accountant, and he is handling my business checking account for me. He called to tell me that he had contacted the bank, saved me a service charge from last month, changed it to free checking, and to remind me to transfer money into the checking account before I write a check. I was overcome with such a feeling of relief that something had been “taken care of” FOR ME instead of BY ME. I had actually forgotten that there used to be someone – my husband- who helped me out and shared the responsibilities when I needed it.

This is not news to any of you. I know that you do as much and more than I do. I am the one who usually encourages you to keep up a positive attitude – to focus on what is good. Well, my positive attitude must have gone on the Caregiver Cruise and stayed there, because I cannot find it around here. Hopefully, it will sail in again soon, but right now I am exhausted, sad, and not at all in a positive mood.

What do you do to bring yourself back to positive thinking?

Stay tuned for Wednesday's Blog - The Olympian Caregiver

Feedback to joan@thealzheimerspouse.com

Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.

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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Advocates in Action - Joan is going to DC again to advocate for Alzheimer's Causes - You can help. - February 19/21,2010

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