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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 look on the left side of this page for all of the resources offered by this website. Then CLICK HERE for an introduction, information, and help on learning about, and coping with, Alzheimer's Disease.

ATTENTION WEBSITE MEMBERS - ALERT TO CHANGES IN WEBSITE

As of Tuesday, August 16, 2016, this website will have a completely new look. When you log on, if the site looks the same as it always has, please use the "refresh" buttion, and the new format should come up. The changes reflect the advances in technology and the changes in my own life since the inception of the site in 2007. Please read the January 31, 2016 blog below for more details on what to expect. Please be patient with us as we roll out the new format. The message boards will remain the same, however, they will be DOWN for a few hours on Monday night, August 15, 2016 as the technical team moves them. Do not panic. They will return to operation as soon as they have been transferred. My email will remain the same (joan@thealzheimerspouse.com) , but DO NOT use it until Tuesday night, August 16, 2016, as it is also being moved. If you need to contact me, do so through the message boards or at joang4848@gmail.com.

You can help me out by passing on the word about the new format.

Thank you for your support.

Joan

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JOAN'S BLOG - JUNE 15, 2016 - IN LOVING MEMORY - ONE YEAR SINCE SID LEFT US:

June 15, 2015 - June 15, 2016

It does not seem possible that an entire year has passed since Alzheimer's Disease took Sid's life. This past year has been one grueling struggle after another for me as I have tried to rebuild my life without the other half of my heart. I want to thank the countless friends, relatives, and website members who have been by my side, listening to me, holding my hand, talking to me, giving me words of encouragement, making me laugh, letting me cry. Without your patience, kindness, visits ( some of those visits required airplane rides), phone calls, and love, I would not have made it through this year. Of all the counseling advice I have received from a parade of grief therapists, one statement stands out. "You will never get over it. You will just learn to live with it." As this year ends, I have come to understand the wisdom of those words. The truth is that I will never get over losing Sid, but I am learning to live with the loss. It has become, and will always be, part of me, as I navigate the world alone. Sid and I loved each other with a depth and passion that not many people get to experience. We were luck y to have had that, and I will carry that memory and love in my heart forever.

When you think of Sid, and the wonderful man he was, please think of these words that I chose for his memorial card:

"I'd like the memory of me to be a

Happy one. I'd like to leave

An afterglow of smile when life is done. I'd like to leave an echo whispering

Softly down the ways, of happy

Times and laughing times and bright

And sunny days. I'd like the tears of

Those who grieve, to dry before the sun

Of happy memories that I leave

When life is done."

Rest in peace, my love.

MESSAGE BOARDS: One Year Since Sid Left Us

JOAN’S BLOG – January 31, 2016 – IMPORTANT NEWS, NEWS, NEWS, AND UPDATES

My sincerest thanks to all of you who have been so patient with me this last most difficult year. When my husband’s physical health started to decline, and my own depression worsened, I was unable to motivate myself to get out of bed, except to visit Sid in the nursing home, never mind put any effort into working on the website. As I have told you before, after 12 years of living with Alzheimer’s Disease, and watching that dreadful disease dismantle my beloved husband, best friend, lover, and cheerleader piece by piece, I thought I had grieved until I could grieve no more. I thought his death would bring me some peace and relief. Wrong on all accounts. After his death in June, I completely fell apart emotionally. Never in my life have I known such paralyzing despair, mental and emotional pain, and devastation. Honestly, unless one has been through this “widow thing”, there is no way to truly understand the anguish. My next blog will delve deeply into the emotional experiences of “widowhood”, and the incident that I believe has allowed me to turn a corner.

But for now, I need to update you on my plans for the website. For the last 8 ½ years, along with informational resources (left side of website), and emotional support (message boards), I have chronicled my own journey through my husband’s Alzheimer’s Disease through my blogs. Through my raw honesty in sharing incidents and emotions that previously had never been discussed, Alzheimer Spouses around the globe discovered that their innermost unexpressed thoughts were universal. Nowhere before this website was launched, had there ever been discussions regarding the changing nature of the marriage when Alzheimer’s Disease invades it. Never had spouses been able to discuss with others in their situation, the resentment, anger, and fear they felt in the utter exhaustion of caregiving. I am proud to have initiated the conversation, which is now written about in many more magazine and newspaper articles.

However, due to a year’s neglect on my part, advanced technology, and updates in design, the website is dated and has many unworkable links. It is in need of a complete technological overhaul. My computer expert ( who was an 18 year old college student, working part time in a computer repair shop, when I met him 9 years ago), now owns his own web design company. He wrote up a proposal for me that includes redesigning the website to bring it into the 21st century, updating and fixing all of the links, hosting, training me in new web design software, and technical support. I am very excited to get started on this project.

One of the changes will be in the blogs, which have been the story of my journey through Alzheimer’s Disease as an Alzheimer Spouse. I am no longer an Alzheimer Spouse. I am an Alzheimer widow. My “widow” story is not relevant to most of my readers, so it will be spun off in a link to a different page for widows and widowers who are traveling this road with me. (And anyone else who is interested, of course) For my newer members, and those veterans who are still caregiving, I will reference blogs, information, and educational resources that are up to date and relevant to your current situation.

The heart of the website is the Message Board, and that will remain the same. All of the previous discussions will still be available for you to access as references to every subject related to dementia and caregiving of a spouse.

I thank all of you once again for your support, patience, and understanding. It has a been a long, winding road of despair from which I have not yet recovered, but I am at least able to function now to the degree that I am able to return to website work.

As you can imagine, this is quite a costly proposition, so if anyone is able to help with the expenses of this new venture, it would be most appreciated. Click here to access the address. Thank you.

MESSAGE BOARD: Joan’s Blog – News, News, News, and Updates.

Feedback to joan@thealzheimerspouse.com
©Copyright 2016 Joan Gershman
The Alzheimer Spouse LLC
2016All 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 2016 NEW YEAR'S MESSAGE

It has been a tumultuous year here at the Alzheimer Spouse Website. Those of you who follow my story, are aware that my beloved of husband of 45 years succumbed to the ravages of Alzheimer Disease on June 15, 2015. Having lived with the destruction of the disease for 12 years, I thought I would be prepared for his death. I was not. It hit me harder than a brick in the face. Six and a half months later, I am still grieving and struggling.

Although I have made many strides in building a new life for myself – selling all of my furniture, moving to a new furnished condo in an active semi-retirement community until I am able to make a decision about a permanent move, going out to social functions even when I don’t feel like it, going alone to concerts I want to see, I still feel adrift, lonely, and unbearably sad.

Unfortunately, my stunning grief debilitated me to a standstill when it came to working on the website. I just have not been able to muster up the ambition or ability to write blogs, post information, or keep up with the daily goings on. I have so many plans for updating the site to make it more modern and functional, but they have been put on hold until I feel well enough to tackle them. Thank you for your patience in that matter.

I understand how difficult it is for those of you in the depths of caregiving and those of us who have lost our spouses to respond well to the Happy New Year greeting, but I do so hope that we are able to find a positive in our situations and make 2016 a better year for all of us.

It is my tradition every year to remember those who have been released from Alzheimer Hell. We honor the lives of those lost in 2015:

Denny – husband – 1/2/15
Jules- husband – 1/6/15
AuntB – husband Tim – 1/16/15
Christine08- husband Patrick – 2/14/15
Wolf – wife Dianne – 2/18/15
Jennyf – husband Norman – 3/16/15
Joni1957 – husband – 3/30/15
Keely – husband – 4/6/15
Marsh – wife Marge – 4/11/15
Dazed – husband – 4/20/15
Apple,table,penny – husband – 4/20/15
Isa – husband – 4/27/15
CO2 – husband – 5/3/15
Nbgirl – husband Herb – 5/19/15
Lorrie – husband – 5/24/15
Joan – husband Sid – 6/15/15
Marg78 – husband Rene – 7/8/15
Nikki – husband Lynn – 9/20/15
Jackiem29 – husband Rod – 9/28/15
Mother – husband – 10/25/15
Bak – husband Paul – 11/20/15
Dorie IMI – husband – 11/23/15
Texasmom – husband Tom – 12/7/15

If I have omitted anyone, please email me at joan@thealzheimerspouse.com or post on the message boards under Joan Needs Help with In Memoriam.

POST COMMENTS TO THIS MESSAGE ON THE MESSAGE BOARDS UNDER JOAN'S NEW YEAR MESSAGE.

Feedback to joan@thealzheimerspouse.com
©Copyright 2016 Joan Gershman
The Alzheimer Spouse LLC
2015All 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.

December 25, 2015

CHRISTMAS NOTICE FROM JOAN:

I wish all of you the best possible holiday this season, in spite of the trials Alzheimer's Disease presents in your lives.

My sincere apologies for being absent from the website, but I am still stumbling through grief, and do not know when I will be able to return to working on the site.

Best holiday wishes to all!

Joan

JOAN’S BLOG –SEPTEMBER 20, 2015 – IMPORTANT INFORMATION OF WEBSITE CHANGES
To all of my loyal website members and those who are new to the support we have to offer, I have some very important news to share with you.

As you know, I have been absent from the day to day operations of the website quite a bit lately, first due to my overwhelming, all consuming grief over the death of my beloved husband in June from this scourge of the 21st century – Alzheimer’s Disease. Then, as the most recent blog below explains, my time has been taken up by the moving preparation. Aarrrgggh! Yikes! Everything related to the move happened so fast that I had to clean out garage clutter that has followed me through 4 moves in the last 9 years, sell all of my furniture because my new condo is fully furnished, shred 17 years of paperwork, chuck, chuck, chuck clutter, and pack, pack, pack. All of this was accomplished by myself in about 3 weeks, until the last week, when I folded and hired a handywoman to help.

As many of you are also aware, there has been a problem with the website, as Google has designated it as having been hacked. They will not remove that designation until every single page of the site is checked and authenticated as “safe”. My computer expert has been working on it in his spare time for a month now.

So that brings me to the changes in store for the site. At the end of next week, Magic Matt, my computer expert, will hopefully have me set up with a new computer and new, more modern, easier to work web design software. Learning all of this will take time, and none of it will be implemented until the “this website may have been hacked” notice is finally removed from Google. I ask for your patience as we work out all of these bugs. What will emerge will be a modern, streamlined version of the website.

This has been an unbearably emotionally devastating year for me, and my time has been spent trying to cope with Sid’s death and trying to heal as much as possible. It is slow, painstaking work, and I am fully aware that it has taken me away from the website.

Know that I am extremely proud of what this site has accomplished over these last 8 years, and I hope to continue to have an impact on the education, awareness building, and support of Alzheimer Spouses everywhere. But as I have been emphasizing, it will take time on my part and patience on yours. First, because my emotional state is so fragile, secondly because it will take a lot of work on Matt’s part, and thirdly because I will need the time to learn how to use the new software to redesign the site. I expect it to take at least the rest of this year, and into the next.

For the above reasons, my blog writing will be limited, but there is not a topic that has not been covered in the last 8 years, so please be free with using the “search” feature on the home page under “previous blogs” to look up topics that pertain to your stage of the Alzheimer journey.

I also will be taking baby steps to join the activities and meet new people in the clubhouse at my new development. Since this move has worn me out to the point of barely being able to put one foot in front of the other, my intention is to “vacation” at my new pool for the week after I move in before I return to web work. I can only imagine what it will be like, after 12 long years, to have no caregiver stress, no financial stress, and no stress of watching Sid die, as I alternate between lying in the sun and swimming.

I know from all of my grief counseling that I will never get over the death of the man with whom I have lived, laughed, cried, shared all of life’s trials and triumphs, and will always love beyond his last breath until I take mine. However, as I have been taught, I will learn to live with it, cope with it, and maybe build a decent life for myself.

Please continue to ask questions, debate subjects, and support one another on the message boards. I will check in as often as possible, but know that I will be in the background learning and designing a new, improved streamlined Alzheimer Spouse website.

Thank you for your unwavering support and patience.

MESSAGE BOARD: Joan's Blog - Important Changes to the Website

Feedback to joan@thealzheimerspouse.com
©Copyright 2015 Joan Gershman
The Alzheimer Spouse LLC
2015All 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 –MONDAY, AUGUST 31, 2015 – MOVIN’ ON

Each person’s life circumstances and experiences, as well as their emotional status’ are different, so each must do what they feel is best for them in regard to the way they choose to live their life as an Alzheimer Spouse.

With that as my premise, what I am about to discuss is my story alone; my decision alone. I can only hope that sharing my decision making process with you will help you with whatever dilemmas you may be facing.

“Don’t make any major decisions for at least the first year after your spouse dies” is the conventional advice. Widows/widowers are in shock, disoriented, confused, and in deep grief for many months after a spouse dies. It certainly is no time to make any life altering decisions. Being overwhelmed with grief, as I have been since Sid’s death in June, I fully understand the wisdom in that advice. However, I have made the decision to move, and moving I am! Below are the reasons, emotional and practical, that led me to this choice, in what may seem as too a short time after Sid’s death.

Six years ago, as Sid’s mental and physical condition began to worsen, I knew that I was going to need help caring for him. With that goal in mind, although I was only 61 years old, I moved to an Independent Living Community that was part of an adjacent Assisted Living community. My services included in the rent are all utilities, outside AND inside maintenance, weekly cleaning, a delivered dinner meal, and wheelchair lift van service to doctor appointments. As it became increasingly difficult for me to take Sid and his wheelchair in and out of my car, the van service was invaluable. As my caregiving duties increased, and my energy decreased, all of the services were just as invaluable in helping me cope.

Although not a socially appropriate environment for me, as all of my neighbors were at least 20+ years older than me, and the limited activities offered were in the Assisted Living building, I was focused on what I needed for Sid’s care, not what I need for socialization. My plan was to live here until I no longer needed the services, and then to move to a more appropriate community.

In the two years Sid was in the nursing home, my blogs, particularly the ones of the last year, chronicled my stumbling attempts to develop a “single” life for myself. I spent two long years seeking new single friends, activities, and communities that suited my age and personality. Make no mistake about it – the process was messy, difficult, and depressing.

However, what I learned from my 2 years of fits and starts at attempts to build a single life, was that I needed to live in an “over 55” active development, where there are social clubs, activities, entertainment, games, sports, and peers my own age.

As the weeks have gone by since Sid’s death in June, my current living situation has exacerbated my deep grief and depression. I look out my window, and I see visiting nurses pushing people in wheelchairs. I have no activities and no peers, just sad memories of 6 years of caregiving for a once vibrant man; for a husband who deteriorated both mentally and physically year after year, until I could no longer care for him myself, and had to place him in a nursing home. Since that day, two years ago, I sleep alone, lonely and cold in the king size bed we used to share with love and warmth. I did not need any more time to decide – I needed to move as soon as possible. I also know that I am too emotionally raw and unsettled to make such a huge decision as to buying a house to make my permanent home. I know I need to rent for a year to give me time to heal my head and heart.

Here is where my story turns. After 12 years of constant bad news, as well as financial and emotional devastation, the clouds of my life suddenly parted, the sun shone through, and everything fell into place.

I called the realtor with whom we dealt when we first moved to Florida 9 years ago. At that time, he had found us a house to rent during the year our new home was being built. Everything went smoothly during that transaction. When I called him, he remembered the both of us, and I caught him up on everything that had transpired, including the truth about our financial mess, which destroyed our credit, thus making it difficult for me to be approved for a rental, even though I am now financially stable.

He told me that he would find the perfect place for me, not to worry about the financial part – he would be able to explain my situation in such a manner that I would be approved.
Two and a half weeks later, my new lease was signed for a beautiful, fully furnished, 3 bedroom, 2 bath, one floor condo in an exclusive retirement golf community with activities, clubs, entertainment, and classes, as well as a social club for widows and widowers. A huge plus in favor of this move is that it is in my neighborhood – two miles up the street. I will not have to learn a new location, change pharmacies, doctors, or travel to attend functions with the friends I have here.

I honestly believe that Sid is watching out for me. I can feel him in my heart, whispering in my ear, encouraging me that this is the right move for me. A major part of his life was devoted to making me happy, and I believe that he is continuing to gently push me toward happiness. Whether this is true or not, I believe it is, and that is all that really matters.

How will I feel about living somewhere for the first time in 45 years that Sid has not lived with me? How will I feel living with furniture that we did not pick out together, except for a couple of pieces that I am taking with me? Of course, I do not know, and as I said in the beginning, a decision like this one may not be appropriate for other new widows/widowers. But I feel in my heart that it is right for me. Only you will know what is right for you.

So there you have it. For better or worse, Joan is “movin on”. The lease is for one year. At the end of that year, I should be in a better emotional condition to make a decision as to buying a permanent home for myself. Myself, alone, single, no longer married, no longer half of a couple. Just me. <Sigh> This is not how I envisioned my life to be at 67 years old, but I did not get a choice, did I? Alzheimer’s Disease does not give one choices. It comes in, takes over, always wins, and we are left to deal with the destruction it leaves behind. We each have to deal with it as we feel is best for ourselves.

MESSAGE BOARDS: Joan’s Blog – Joan is “movin’ on".

JOAN’S BLOG – WEDNESDAY, AUGUST 19, 2015 – THE DETRIMENTAL EFFECTS OF DENIAL

As promised, today’s blog is not about my grief, but rather addresses an issue prevalent among many Alzheimer Spouses. DENIAL. (The idea for this blog on denial came to me when I sat in a grief group and listened to a woman in her 80's, whose husband had Alzheimer's Disease for 14 years, insist that he never changed, and she had no idea that he was going to die!) A little denial is to be expected when first hit with the diagnosis of Alzheimer’s Disease, but if continued long term, it can seriously hurt not only the caregiver’s well being and the marriage, but also the long term quality of life for the spouse with the disease.

Although there are many detrimental results of denial, for today’s discussion, I have chosen two that I have seen and dealt with most often.

The first is that since you are in denial that your spouse has Alzheimer’s Disease, you see no need to treat them, relate to them, or speak with them any differently than you always have. You believe there is nothing wrong with them. You steadfastly refuse to change the way you relate to your spouse. I know a little about this, as I fought my social worker daily on this one. Not that I was in denial; I definitely was not. I was just trying to preserve what had been a wonderful, loving relationship for 3 decades.

For the last 8 years, on the message boards, in private emails, in support groups, in private conversations, I have heard the same story repeatedly. Alzheimer Spouses continue to try to reason with, compromise with, discuss life events, and seek advice from their Alzheimer afflicted spouses as they had done throughout their married life. I do have to confess that I have pulled more than one hair out of my head when I continually hear, “ I left him the taxes to do, and he didn’t do them. Now we are late and owe penalties. I am very angry with him.” ????????????? He has ALZHEIMER’S DISEASE. He is not CAPABLE of doing the taxes anymore!

No one knows the heartache more than I do of watching a relationship disintegrate when you can no longer relate to your spouse as you did for decades of marriage. When they are no longer capable of solid reasoning and judgment, you MUST come out of denial, learn to do the heavy decision making yourself, and not make any cognitive or reasoning demands on them.

You both suffer needlessly when you insist on relating to them as if nothing had changed in their brain. You become more and more angry and frustrated at your spouses’ inability to help you make decisions, continue with their share of the financial responsibilities, and provide emotional support to you. One would think that the ill spouse’s continued inability to function as previously able, would shake the well spouse out of denial, but honestly, denial is an adhesive that sticks like glue, and I have seen it held onto for years. Your spouse suffers needlessly because of your unreasonable demands upon them. They become frustrated, angry, and sometimes violent because they cannot meet your expectations. The result is two angry people and a relationship in tatters.

The second is that since you are in denial that your spouse has Alzheimer’s Disease, you deny them a better quality of life that they may have while in the functional stages of AD by forcing them to socialize and keep up with the friends and activities you have always enjoyed. ( For more detailed information on this, click here for a blog on socialization)

It became obvious early on that Sid was uncomfortable with “normal” functioning peers. He was unable to follow their conversations, participate in their games, or keep up with their thinking and discussions, and he knew it. It was depressing him, and hurting me to watch his pain. He was happy and content when we joined the Alzheimer Support Group in which most of the men had the disease, and the women were the caregivers. These people became our social group, and Sid reveled in it. He always told me that he felt comfortable in their presence because he did not have to “pretend” to keep up; everyone was in the same situation as he; he could talk to them about it; and the wives were patient. We made sure that the men participated in regular activities on their level, whether it was a weekly domino game, a group movie, a dinner at a restaurant or someone’s house, or a chaperoned fishing, museum, or zoo trip.

I am personally familiar with women in deep denial whose husbands are in the early stages of Alzheimer’s Disease. Their denial is causing undue stress, anger, frustration, and emotional pain to both of them. If these women (and men who fit the profile also) would come out of denial, relate to their spouse as one with the brain disease they have, and provide appropriate activities and social partners for them, both spouses will be able to exist in a more peaceful, less stressful environment.

NOTE* - I understand that it is not always possible to provide Alzheimer peers for your spouse, but you can begin by searching for appropriate Alzheimer groups – Contact your local Alzheimer’s Association for information. And as you know, if all else fails, you can always start your own group!

MESSAGE BOARD: Joan's Blog - Detrimental Effects of Denial

Feedback to joan@thealzheimerspouse.com
©Copyright 2015 Joan Gershman
The Alzheimer Spouse LLC
2015All 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 – WEDNESDAY, AUGUST 12, 2015 – A CHANGE FOR THE ALZHEIMER SPOUSE

When I started this website 8 years ago, its purpose was to provide information, education, and most of all, support, for Alzheimer Spouses. I accomplished this through writing blogs that detailed my struggling journey through Alzheimer Hell with my husband, providing Alzheimer Spouses a safe place to discuss issues that had previously been unmentioned – the changes that occur to the patient’s personality and abilities, and how those changes affect the marriage-, raising awareness of the disease and spousal issues through attending seminars, speaking, writing, and providing you with the latest news about Alzheimer’s Disease. In the process, countless number of Alzheimer Spouses throughout the world (Yes – the entire world!) have been helped by the information and support on this website.

During these 8 years, I have mourned with my members, the loss of so many of their spouses. Because our journey had been so long ( 12 years), and I had lost so much of my dear Sid to the disease over the years, I thought (foolish me) that I would be prepared for his death. I thought that I would have an easier time of grieving than someone whose spouse had died suddenly or had not navigated the trenches of Alzheimer’s Disease for as long as I had.

I was wrong on every assumption. These last two months since the death of my beloved husband have been the most difficult of my life. No matter how much I lost of him over the years, no matter how much of a stranger Alzheimer’s Disease had made of him, no matter how much I thought I grieved during the disease, no matter how much “anticipatory grief” counseling I have had, nothing prepared me for the torture I am enduring now. My heart remembers and mourns the husband I had before Alzheimer’s Disease stole his essence piece by piece, year by year. The pain, loneliness, and total confusion is unrelenting.

My grief counselor thought I would be helped by attending an “Understanding Grief “ group that runs for 8 weeks. I attended 3 or 4 sessions, and it made the situation worse. I found myself not yet ready for the weekly assignments. One was to read a grief book. I could not do it. Another was to bring in pictures of our husbands and tell the group about the qualities about him that we loved. When I went into the closet to find old albums, I became hysterical. When it was my turn to talk in group, I talked through my sobs. I told the group and the counselor that I could not continue in the group because I just was not ready for it. On Friday, I see my counselor for an individual session, and I will continue those, because they have always been helpful to me.

My point in writing this blog is not to bring down those who are mourning the loss of their spouses, nor is it to frighten away those spouses who have yet to experience this final loss. My point is to explain that if you are having a difficult time, you are not alone. That has been my main message for 8 years. No matter what emotion you are feeling related to your spouse and Alzheimer’s Disease, you are not alone.

My dilemma now is how to continue to make this website relevant for ALL spouses, regardless of the stage they are navigating. The blogs have been my story all along, and someone was always in my stage and could relate to what I was writing. I want to continue to write blogs that are relevant to everyone, but I still feel the need to tell my story.

In that attempt to be relevant and not scare away those who are not ready to read about grieving the death of a spouse, I have decided to make a change that I hope will benefit everyone. I am going to set up a section on the left side of the website for my journal through the grief process. It will be there for those who wish to read it. I am hoping that journaling my grief will help me heal, and maybe help others heal as well. Nothing else has worked so far. I am drowning in grief, and writing has always been my salvation.

On the main home page, as always, I will try to write blogs that appeal to all stages, as well as blogs that provide information and education. I do hope that this will be a positive change that works well for everyone.

MESSAGE BOARD: Joan's Blog - A Change to the Alzheimer Spouse

JOAN’S NOTICE - AUGUST 4, 2015 - Thank you all for your patience as I have tried to navigate through the rough sea of bereavement. It has not been easy, and it continues to be a struggle, but I feel that I am ready to return to work on the website. As you can see from the 8 months of back blogs still on the home page, there is a lot of work to be done. Look for new blogs and notices in the coming weeks.

JOAN'S OPEN LETTER TO WEBSITE MEMBERS - JULY 13, 2015

Dear Website Members,

I had planned to write a long, detailed blog about the 8 year anniversary ( this week) of the launching of this website, and I still plan to do so. However, I am learning that this grieving business is not for sissies. It is physically, as well as emotionally deeply painful, paralyzing, confusing, and mind numbing. Today marks one month since the death of my beloved husband, and although I have the support of an excellent grief counselor, friends and family, I am still barely functioning. I am unable to think straight, stay awake, remember what was said to me or what I said to someone else, concentrate, plan, or accomplish any but the most mundane tasks. Most of my time has been spent sleeping.

For those who have experienced the same situations that I am describing, I would like to share with you what my grief counselor told me. She said that what I am going through at this stage is normal. Particularly as an Alzheimer Spouse who has endured years (12 in my case) of unrelenting stress, heartache, physical caregiving, and constant mourning every time another piece of Sid was lost to this monstrous disease. She told me to give myself a break and listen to my body. If it needs to sleep, sleep. If I can’t do any tasks, don’t do them. She said to give myself TIME. After all I have been through, she said that I need time to heal body, mind, and soul. You can’t rush the grief process, and it will take as long as it takes. If I allow myself the time to heal, I will come out of this better and stronger than if I fight it. I do not have the energy to fight anything anymore. I gave all I had to Sid and his Alzheimer’s Disease.

I need to warn anyone going through this process of something else she told me. Be very careful with any physical activity in which you engage. She said that grief wreaks havoc with the entire body, and your balance will be off. Stay off of bicycles; don’t attempt any ocean wave jumping; keep the exercise simple. I had been wondering why my balance has been so precarious lately. Now I know.

This letter is a thank you for the support you have given me thus far, and a notice as to why I have been mostly absent from the message boards and blog writing. I am here, but I am unable to work on the site right now. The message boards are always open for you to seek support from one another. I am asking for your help in facilitating discussions. If anyone reads an article of interest that seems appropriate for discussion or thinks of a topic on their own, please post the link or explain your topic and start the discussion.

I will return to full time website work when I am physically and mentally able. Thank you all for your continued support. I appreciate each and every single one of you more than you can imagine.

Joan

MESSAGE BOARD: Joan's Open Letter to Members

JOAN’S BLOG, WEDNESDAY, JULY 1, 2015 – TIME AND PATIENCE

Slowly, very slowly, every so often, a little at a time, I am peeking my head out of my hiding place. I have retreated to a safe haven to heal enough to be able to function in the world again. At my sister’s urging, I am not rushing things; I am taking the time to rest from the emotional ordeal I have endured.

I want to return to website work, to my salvation of writing, and interacting with people both in person and online. Small goals, but goals I feel that I can handle.

It is still very unreal to me. I cannot believe that Sid is gone. I just cannot wrap my head around it.. My husband is dead. I cannot even say or write the word without thinking there must be some mistake.

This is the part of the Alzheimer Journey for which I was not prepared. Of course, I have known since the official diagnosis 9 years ago, that AD is fatal, and Sid would die from it. But as everyone who has been through this will attest – you are never prepared.

How can you be prepared to hold the hand that has comforted you in sorrowful times, turned your body into electricity during passionate times, given you strength when you needed it, friendship forever, and watch it turn blue as the life drains out of it? How can you be prepared to lay your head on his chest, hearing the heart that has beaten in sync with yours for decades, flutter, slow down, stop, flutter, slow down, and finally stop forever. You cannot.

And how can you be prepared for the complete shock and emptiness that envelops you with that last breath? You cannot.

So I am taking time to first let the shock wear off and to accept that my husband is dead. I am taking the time to adjust to living with never again feeling the warmth of his skin next to mine, nor the beat of his heart in sync with mine.

I will continue to post new stories under Breaking News. I will check in on the Message Boards and write when I feel I have something to contribute, and I may even write a blog or two. I will return to working full time on the website as soon as I am physically and emotionally able. Please have patience with me. I am a work in progress.

MESSAGE BOARD: Joan’s Blog – Time and Patience

Sidney Gershman - December 1, 1942 - June 15, 2015

The love of my life succumbed to the ravages of Alzheimer's Disease on June 15, 2015. My heart is broken, but he is finally at peace after a 12 year fight with a monster disease. Thanks to everyone for your kindness and support through this terrible time.

JOAN'S EULOGY FOR HER BELOVED SID - JUNE 20, 2015

The story of Sid Gershman’s life cannot be told without interweaving it with the love story of Joan and Sid.

When I was 10 years old, I was visiting my 16 year old cousin Arnold - the one whose recollections Rabbi just read. He had a group of his friends over at the time. I walked into the living room, and my very precocious 10 year old heart skipped a beat when I laid eyes on a tall, dark, handsome boy, who was introduced to me as Sid Gershman. I thought to myself – when I grow up, I want to date him.

Years went by. Sid graduated high school in 1961, and he and Arnie enrolled in Bryant College for accounting. After a year, Sid decided that sitting behind a desk counting numbers was not for him, and he left Bryant to attend RI Radio School of Electronics – a technical school, where he could develop and enrich his natural talent for all things electronic. Now here is where my natural talent for words and language fails me, because I understand nothing about electronics. I can only tell you that he was an expert with every doodad, thingamajig, whatchamacallit, and doohickey that was related to anything electronic that plugged in or in later years was portable. He could work it, fix it, install it, and whatever else needed doing to it.

Our paths crossed again at my cousin Arnold’s wedding when I was 16. I looked up from the table, and there was 22 year old Sid Gershman talking to everyone but me. I was invisible to him, but I recognized him immediately as the boy I had met when I was 10. Only this time, my 16 year old hormones raged, and I wanted a date with that guy in the worst way.

More time passed. His electronic ability served him well when the Vietnam War was in high gear, as the RI National Guard needed his skills in their radio communications department. He was recruited right after graduation to do for the Guard, whatever it was that required his special talent, thus keeping him out of the jungles of Vietnam. He stayed with the National Guard for 6 years, being honorably discharged in 1970.

After graduating from technical school, the foolish boy thought he was in love, and got married in May of 1968. He did not know that his romantic destiny lay elsewhere, but apparently fate did. That short lived union lasted about 8 months.

He and Arnold were now both divorced, and one summer afternoon between my junior and senior years in college, Arnold took him along to my house to visit my mother. I was no longer a 10 year old child or a 16 year old teen. I was a 21 year old woman who looked at that man sitting in my living room, and I knew what I wanted. What I had wanted since I was 10 years old. I flirted, I sat across from him, crossing my tan, toned little legs. I smiled. I lusted. I got nothing.

I returned to college in September, and one night in November, the phone in my dorm room rang. It was SID GERSHMAN, asking me to attend a party with him the following Saturday night. To say that I was ecstatic, after 11 years of waiting, does not begin to describe my feelings of euphoria. Maybe all of that eyelash batting, leg crossing, and drooling had not gone unnoticed after all.

That was it. If you don’t believe in love at first sight when you are 10 years old, or love at first date, then you didn’t know us. There was a comfort level between us that first date as if we had known each other and been together forever. That was the weekend before Thanksgiving, 1969. By the second weekend in December, he told me that he was in love with me and wanted to marry me. By January, we were engaged, and were married in June two weeks after my college graduation.

I never felt more complete, more at peace, or happier than I did when I married Sid. It was as if part of my heart had been missing, and he was the puzzle piece that completed it.

He put his electronic skills to work by opening up two Lafayette Radio and Electronics stores, a popuar electronic franchise of the 1960's and 1970's.

We settled in Stoughton, Massachusetts with a house full of dogs, and hearts bursting with love for each other and our new baby Joel.

When the big electronic stores came along and pushed out the small neighborhood businesses, Sid sold his stores and went to work for Radio Shack. He had always been a hard worker, a workaholic by anyone’s standards, and he gave his all to Radio Shack. It left little time for him to spend with me and with Joel, so we made the most of every minute we had together. We took pleasure in being with each other, if it was on a week’s cruise vacation or an hour’s jaunt to the grocery store. As long as we were together, we were content.

Carving out time to spend with his growing son was a challenge, but he made valiant attempts at it from teaching him to fish to sleeping in rain soaked tents with him during Boy Scout Jamboree Weekend, to helping him build the Boy Scout Pinewood Derby race car, to teaching him to drive.

Through all the years, our bond grew stronger and stronger. He was always there for me, loving me, caring for me, emotionally supporting me.

Through all of his job ups and downs, I was always there for him, bolstering his confidence, believing in his abilities, and emotionally supporting him. We were truly the wind beneath each other’s wings.

I am most proud of the fact that Joel grew up in such a loving environment. It’s all he knew. I received two notes of condolences that I would like to share with you that address this. This first is from a work colleague of mine with whom I became very close friends. She wrote:

"Although I didn’t know Sid, I have always felt so blessed to have known you and through you to know that the kind of love you had for each other really does exist. I don’t know if I ever told you this but you and Sid were one of only a very few couples that I looked to as an example of a loving relationship. I’m so sorry for your loss."

The second one is from an old friend of Joel’s. One year, when Joel was attending Cape Cod Community College, and living there during the school year, a friend of his was attending a community college near our home. Due to family circumstances, she had nowhere to live, so Sid and I let her live with us that school year. She took Joel’s room while he was at the Cape. Both Sid and I loved having her with us. This is part of what she wrote to me when she heard of Sid’s passing:

"Oh Joan, I am so sorry……. I remember Sid and you together and smile. Growing up, my parents always fought. I loved being in your house and feeling such a sense of peace in your home."

So that was our lives until the monster Alzheimer’s Disease showed up. Alzheimer’s Disease may have robbed him of his cognition, judgment, reasoning, old personality, and memories. But it could not rob him of his love for me. He never forgot who I was, never forgot how much he loved me. He would often greet me with “Hi Sweetie”, when I visited him in the nursing home, and tell me he wished I didn’t have to go when it was time for me to leave. I never left without kissing him, and telling him I loved him.

At the end, I never left his bedside at Hospice House, except to go home and take a shower. Alzheimer’s Disease shattered my heart over and over again each time that it took another piece of him. I didn’t think it could break anymore until I sat watching him die for 9 days. I held his cold hand in my warm one and told him that I was there for him, would never leave him, and that I loved him.

My grief counselor, Rabbi Lobb, my dearest and oldest friend Ruth, and the Hospice nurses told me that he was struggling not to let go because of me. He did not want to leave me. They said the greatest gift I could give him would be to tell him that it was okay for him to go, and that I would be all right. How could I? How could I tell this man, the other ½ of my soul for 2/3 of my life, that it was okay to die. I couldn’t do it.

But then, I saw how terribly he was suffering and struggling. I don't know from where I gathered the strength, but I leaned over him, and told him that I had loved him my whole life, that he had been the best husband in the world, that he had given me a wonderful life, and that I would never stop loving him, but it was okay for him to let go and rest. I would be okay. Joel would take care of me. He grabbed my hand, pulled it to his lips, and kissed it. With his last conscious act, he was telling me that he loved me and was saying goodbye.

If I have gotten any comfort from this, it was when Rabbi Lobb told me that because our bond was so strong, that when Sid died, part of his soul would go to God, and the rest would come into me, and live inside me forever. The love of my life may be gone from this earth, but he lives on here in my heart, where he will always rest in peace.

MESSAGE BOARD: Joan's Eulogy for Sid

JOAN’S BLOG, MONDAY, JUNE 1, 2015 – OUR WEEKS OF TRAUMA

Sharing honest, raw, deeply personal thoughts and emotions with the world is a most difficult action to take. I made the decision to do so 8 years ago when I started this website. The hope was that in opening myself up and sharing my emotional journey with other Alzheimer Spouses, I would be helping them cope with their journey. As those of you who have been following my story all of these years are aware, my desire to help, educate, and support Alzheimer Spouses such as myself, has far exceeded my wildest dreams. We have done some pretty good work these 8 years, in raising awareness of the true nature of Alzheimer’s Disease, the toll it takes on marriages and married love, highlighting the differences between family caregiving and spousal caregiving, educating the public about every aspect of the disease from research, trials, medications, health care provider ignorance of the disease, and valuable specific caregiving advice from the spouses in the trenches, including help with the infamous “poop patrol” episodes – a topic NEVER discussed in any caregiver interview, PSA, or medication advertisement. We have been pioneers in the topics we have discussed, and I believe everyone has benefited from our openness and honesty.

I am mentioning all of this now, because for the past two weeks, I have uncharacteristically kept my private life private, and have not shared a traumatic incident with you. My decision was based, in part, on the experience I had last July, when Sid faced life threatening heart issues, a hospital stay, violent rages, and was placed on Hospice, only to be removed less than 3 months later, because Hospice deemed him “improving”. With all of the postings on Facebook by a variety of well intentioned people sharing conflicting information with people I did not know, I ended up with a situation completely out of my control. I even lost a friendship over it. (Obviously, this person was not a true friend). This time, I was too stressed and wary to post anything until the situation was resolved one way or another – with either Sid’s stabilization or death. I had no time or energy to spare to be concerned with who was writing what on Facebook, so I kept everything between myself, immediate family members, and a few very close friends. I do hope that you understand and are not offended that I did not share this with you, but I had to do what I felt was best for me at the time.

Last Thursday night at 9:30 PM, my phone rang. It was the nurse on duty at Sid’s facility, telling me that his heart rate and blood pressure were at dangerously high levels, and he needed to be hospitalized to treat it. The paramedics were already in his room, but the nurse saw in the chart that I had specified “no hospitalization”, so he called me to verify. I was livid, as I had him placed on “palliative care” almost a year ago, with the specific instructions that he NOT be taken to the hospital – last year’s hospital stay was a nightmare for him – he had no idea where he was; his sheer terror at what he did not understand resulted in violence toward the hospital staff on his part, and his stress made it more difficult to get the heart rate under control, even with medication.

This time, the nurse, on my instructions, sent the paramedics away and called the doctor, who put Sid on a heart rate lowering medication. I raced to the nursing home, praying all the way that he would not die without me by his side. When I arrived in his room, he was sleeping peacefully, woke up when he felt my hand on his head, and asked me what I was doing there “so late at night”. I told him that the nurse told me he wasn’t feeling well, so I came to be with him. Although the medication had brought his heart rate down somewhat, it was not at a normal rate. I sat in a chair by his bed, holding his hand, watching him breathe hard and rapidly, then so slowly I had to put my hand on his chest to determine if he was breathing. I sat, watching him and sobbing, all as I replayed our life together in my head from our first date to our last night at home in bed before he went to the nursing home the next day. If he is to die tonight, I told myself through my heartbreaking tears, it will be as it was meant to be. He will be free.

I am convinced that my insistence on no hospitalization this time actually saved his life. When he awoke in the morning, he was completely calm, and had no idea anything had even happened. Although the medication and subsequent increases in dosages has still not brought the heart rate down to normal, I believe that continuing his routine, uninterrupted by a traumatic hospital stay, is the reason for his “somewhat stabilization”.

His doctor and I had a very long talk the day after the incident. With the exception of Sid’s 3 months on Hospice last year, Dr. C. has been Sid’s doctor for his entire stay at the nursing home. He knows him well both medically and emotionally. He knows me well emotionally. We are on the same page as to palliative care, and he is totally accessible to me whenever I need him. He was completely honest in telling me that Sid’s heart will not be able to withstand working so hard, and he will die from this. There is no way to tell when – possibly many more months. There is nothing left for me to do for my husband except make sure that he is pain free and comfortable. The doctor has agreed that the heart medication, anti-psychotics, and pain medication will accomplish that goal. I feel secure and comfortable with him as Sid’s doctor, which is the main reason I did not ask for a Hospice evaluation. I can always change my mind, but for now, this is my decision.

I have grieved so hard, so deeply, and for so long, as I have watched every bit of Sid die one piece at a time, year after year after year, that right now, all I can feel is numb. I want this to be over for his sake, but I selfishly don’t want to never feel the warmth of his skin again. It does not matter what I want or do not want. It will be when it will be, and I will have no control over it.

In the meantime, I will return to writing my regular blogs on subjects that I hope will be informative and helpful to everyone, regardless of your spouses’ stage in the disease. I will not, however, be posting every slight change in Sid’s condition, as his situation could go on for months. It is helpful to our members and therapeutic for those of you who choose to do so in regard to your own spouse. I respect your decision, but ironic as it seems for someone like me, who has shared everything, it is not comfortable for me, and I choose to refrain from it.

Thank you for the emotional support you have given me over the years, and hopefully will continue to do so. I could not have survived without it.

MESSAGE BOARD: Joan's Blog - My Weeks of Trauma

JOAN’S NOTICE – WEDNESDAY, MAY 27, 2015 - I apologize for my current lack of blog writing. It is due to my preoccupation with Sid's latest medical issues. I am sure that you understand, and I thank you in advance for your patience.

JOAN’S BLOG – WEDNESDAY, MAY 6, 2015 – WHAT DEFINES YOUR HAPPINESS?

Recently, I have read a variety of uplifting posts on the message boards by members who have found “happiness” again, are smiling, laughing, and enjoying life. Some have spouses who reside in long term care facilities, confined to the Dementia Land that has overtaken their brain, no longer capable of being a marriage partner. Others are true widows/widowers whose spouses have died. These members say they have come through the tunnel of Alzheimer’s Disease to a new light and life. They are happy, fulfilled, and enjoying life. That is, of course, good news for those of us who wonder if we will ever smile with our eyes and not just our mouths again.

But there was something about the posts that disturbed me. Please understand that this is my opinion related to my own journey and feelings. I do not expect others to agree with me, and I do not, in any way, disparage those who are happy with their new lives. I write this to provoke thought and discussion related to an identity issue with which I have been dealing.

Those who are writing about their emergence from the darkness and how they have found happiness again are all in new relationships. They are smiling again because they have found someone to love and someone to love them. They have found someone to assuage the loneliness and fill their lives with laughter, companionship, and love. There is nothing wrong with that. I am happy for them.

But it begs the question – Can we not find happiness within ourselves without a new partner with whom to share life? I have been struggling for over a year to build a new single life for myself; to learn about ME – who am I without my husband; what movies, concerts, trips, do I like without linking them to what someone else likes or wants; with what friends will I be comfortable, without thinking of whether or not my partner will get along with their partner; what makes ME happy on my own? I do not feel that I would be ready to enter into a new relationship until I became a whole, fulfilled, happy person on my own first.

I certainly have been working hard towards that goal for the last year. With the help of a few old friends, a good grief counselor, my website members, and a supportive family, I have been stumbling through the process with inconsistent success. I am learning to go places on my own; I am learning how difficult it is to make friends at this stage in life; I am learning who I am, what I like, and what I want out of life. This has been, and will continue to be my “self project” until I emerge as Joan, after four decades of loving life as “joanandsid”. It seems to me that only then will I be ready for a new relationship. Again, I emphasize that is just how I feel. Others have the right to feel differently.

We call this a journey for a reason. There are different stages and stops along the way from diagnosis to death for caregivers as well as patients. Many of you are too consumed with daily caregiving to give any thought to who you want to be and what you want out of life after the placement or death of your spouses. I happen to be in the self discovery stage. To those who are either not there yet or past it, I hope my musings will help you be better prepared for what lies ahead or better understand what has gone before.

MESSAGE BOARD: Joan's Blog - What defines your happiness?

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