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Joan Stairman Gershman's photo.

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. I will post further plans when they are completed. Thanks to everyone for your kindness and support through this terrible time.

 

SCROLL DOWN FOR JOAN'S EULOGY FOR HER BELOVED SID

 

 

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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 bunch 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 was 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; I was no longer 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. 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– for any of you who can remember far enough back to that franchise.

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 gathered strength from I don’t know where, leaned over him, and told him that I loved him my whole life, that he had been the best husband in the world, 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 rest in peace.

MESSAGE BOARD: Joan's Eulogy for Sid

 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, 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

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 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?


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, APRIL 27, 2015 – THE EVOLUTION OF AN ALZHEIMER SPOUSE – PART IV (Final installment) –HOW HAVE I CHANGED?

At the end of my last installment, I was struggling to find identity as a single woman living in the single world, while my dear husband lived apart from me in the nursing home. My final mental shift to “single” happened not slowly, but in one momentous revelation on one day, in one short minute. My long time members are familiar with the entire story told in the blog, A Seismic Shift, but I will summarize and quote lines from the blog for those who have not read about the most monumental change in my thinking about myself since I transformed from single girl to married woman four decades ago.

Last summer, Blake Shelton was bringing his Ten Times Crazier Tour to Orlando, a two hour drive for me. I have driven that route many times, and knew that a simple one night hotel stay was all I needed to be refreshed enough to drive home the next day.........From the blog - “I was so excited about getting the opportunity to see Blake Shelton perform, as I am a huge fan. Unfortunately, none of my friends shared my enthusiasm, and I was met with a chorus of resounding “NO’s” from whomever I asked. I was so disappointed because it was unlikely that his tour would be that close again. I searched and searched the database in my head for someone who would consider going with me, and came up empty……….

As the weeks went by, I felt more and more disappointed. I wanted to see Blake Shelton, and I was very upset that I could not go. Then it happened. The seismic shift in attitude was so intense, I could feel the earth move under my feet.  Suddenly I said to myself – I want to go to this concert. I want to go. ME. What do I mean – I can’t go? Why should it matter to me that other people do not want to go? Why should what I want to do depend upon what someone else does or does not want to do? Why should I be denied the opportunity to see a concert I want to see just because someone else did not want to see it?  It was at that moment that I truly started my new single life. It was okay for me to attend an event because it was what I WANTED TO DO, and since my husband was no longer able to participate in this part of my life, what I wanted to do was really all that mattered. I bought myself a ticket, booked a hotel room, and went to Orlando. By myself. I enjoyed every minute of the show.”

By realizing and accepting that I could attend a concert by myself because I wanted to go, without needing someone to accompany me, my transformation to a “single” mindset was complete. I now go places alone often, and enjoy myself up to a point. I still miss Sid by my side. If I am not able to go with Sid, I still miss going with someone, rather than alone, but I cannot allow the lack of a companion to keep me housebound. I either go alone, and meet interesting people, or I sit home on the couch where the only people I see will be on television. Less than a month after the Blake concert, I bought myself a ticket to a Rascal Flatts concert that was barely an hour from me, drove myself there and back, and had a great time.

Then there was the famous Craig Wayne Boyd adventure of 3 weeks ago, when this superfan drove 2 harrowing hours through Miami rush hour traffic to attend a small, intimate show of his at a bar and grill on the beach in Hollywood, Florida. One only needs to look at the pictures of this event on my Facebook page to see how excited I was to hear him sing and meet him after the show.

What my solitary concert experiences have taught me is that I am, although not technically a widow, a single woman who is in charge of her own destiny. I do not need to depend upon others to be happy. I can and will enjoy myself on my own terms. A side benefit of attending these events alone is that I meet a lot of interesting people.

A quite inebriated cowboy who sat next to me at the Blake concert, was just one of the cast of characters I have met on these solo outings. He may have over indulged on the beer, but he still behaved as a Southern Gentleman should, asking if he could bring back anything for me each time he got up to replenish his cup (which was often).

At the suggestion of my grief counselor, I joined a Surviving Spouse group, which consists of widows and widowers ( of all types, NOT just Alzheimer widows and widowers, although there are some) on a mission to do exactly  what I have been attempting to do – make single friends and learn to enjoy life again as a single. The board approved my admission because they agreed that I was living the life of a widow, and experiencing grief just as they were.

Once again, I pulled myself up and went to their monthly luncheon by myself. This time, unlike the “Newcomer’s Club” ( referenced in Part III), I felt comfortable.  I felt, in the Surviving Spouses Group, the way my website members feel when they come to The Alzheimer Spouse website – welcomed, completely understood on an emotional level, and a place where everyone has gone through or will go through the same life experiences. Grief support is not the purpose of the group; moving on with life is, but we feel comfortable in each other’s presence because we are all struggling to build new single lives. 

Since that first meeting, I have attended many of their varied functions – restaurant lunches and dinners; an ecological boat ride; Happy Hours at restaurants, and have enjoyed socializing with the friendliest people I have ever met. I am signed up to go to a minor league baseball game, a game day, and another Happy Hour. I still haven’t met a one on one friend, but feel more at ease and know more people each time I go.

Where am I and how have I changed 12 years after the first sign of Alzheimer’s Disease invaded our lives; 9 years after diagnosis; 4 years after giving up fighting to bring back the husband I knew and loved; almost 2 years after placement; and one year after I made the decision to get out of bed and try to make a single life for myself?

My life is in limbo – I am not a widow, but I am not a wife. I am in the difficult position of living in two worlds. I am an emotional rubber band, pull, pull, pulling away from my husband and attempting to live and socialize as a single, but continually snapped back into the world of an Alzheimer Spouse, who must live the pain of watching the man who was the other half of her soul for 2/3 of her life, slip farther and farther into the black abyss that is Alzheimer’s Disease.

I have no choice but to accept this limbo and try to make the best life for myself for an undeterminable amount of time.

The biggest change in myself has been my transition from “WE” to “I”. Whereas last year, I almost missed an incredible concert because it never occurred to me to go alone, this year, my only thought when I see an event advertised, whether a concert, trip, or day outing, (besides – can I afford it?) – is “Do I want to go...... without a thought as to what anyone else wants?  If the answer is yes, I buy two tickets, just in case I am able to find someone to go with me. If I am unable to find a friend to accompany me, I simply sell the extra ticket.

This evolution from being part of a loving couple to acceptance that Alzheimer’s Disease destroyed that huge section of my life, to grieving that loss, to stumbling attempts at forging a new life, to some success at living single, has been a road paved with rocks, potholes, sorrow, and struggle. But I keep at it because the alternative is abysmal loneliness, boredom, and depression. Alzheimer’s Disease gave me enough of that.

MESSAGE BOARD: Joan's Blog - Evolution, Part IV - How Have I Changed?


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, APRIL 22, 2015 – PART III OF THE EVOLUTION OF AN ALZHEIMER SPOUSE – FORGING A SINGLE LIFE


As we left me at the end of Part II, I had placed Sid in a nursing home, and for the first time in 43 years, I went home to live alone. I was so mentally, physically, and emotionally exhausted that when I wasn’t visiting him and fighting for the level and type of care I wanted him to receive in the nursing home, I was lying in bed either sleeping or trying to escape my pain of loneliness by playing mindless tablet games or listening to music.

More than one person said to me – “Well, now that he is placed and cared for, you can start living your life again.” I was astonished. What were they saying? That I could forget about him and go on with my life without him as if was a simple task? As if the last 43 years had not happened. That I could visit him once a week, while I looked ahead for myself, never looking back at our life together? It took 7 long months of sleep, rest, and escaping into tablet games before I felt ready to get out of bed and socialize.

I did not dwell on being alone during those months. Yes, I missed Sid, especially at night in my cold, lonely bed, but I did not miss caregiving. I was relieved that I could sleep and rest when I needed to do so. I cried myself to sleep many nights missing the man he used to be, not the AD patient whose caregiving destroyed my mental and physical health.

After those 7 months, I felt rested enough and ready to try to live a life as a single person. This was a task more difficult than I ever imagined.

I looked around and realized that, not only did I have no husband in the true sense of the word, but I had no more than a few friends and no social life. No activities. Nothing. All of our friends upon moving to Florida 8 years prior were from our Alzheimer Support Group, from which I had drifted away. I did not know where to start or what to do.

My Hospice grief counselor gave me a list of groups she thought would be appropriate for me, and encouraged me to give them a try. The first group I chose was named “Newcomer’s Group”. Its sole purpose was for people to attend a variety of functions to make friends. The first time I had to walk into an event completely by myself, populated by a group of total strangers, I felt like a pathetic outcast. I felt as if I were missing a limb – my husband and partner.

Although it was a lovely luncheon, everyone at my table was friendly, and I enjoyed the conversation, I went home feeling worse than before I went. My perception of the experience was that it emphasized how many lonely, friendless people there are, and that I, who had never lacked for friends or activities, was now one of them. The whole experience increased my depression. I never returned.

For the next year – yes, an entire year- I struggled to learn to define myself as a “single” person, rather than part of a “couple”, and I learned that it is immensely difficult to make new friends when you are a senior. Everyone has their own “issues”, a few of their own close friends, and although happy to attend group functions, do not seem amenable to forging new one on one bonds. These were the two tasks that I had to accomplish – learn to live life as a single and make new single friends. Not only has it not been easy, but I have hated doing it, because every effort at it has required me to step way out of my comfort zone.

How did I do it? I spent a lot of time in the house alone. I tried to get together every week with at least one of the four friends with whom I am comfortable enough to call anytime and chat on the phone. I managed to go out with one or two of them no more than once a month, as everyone was busy with family, travel, or has a chronic illness that interferes with their living life to the fullest.

Seeing a friend face to face barely once a month was leading me deeper and deeper into depression. Depression is a vicious cycle. The more you are depressed, the less you feel like making the effort to bother going out, which leads to more isolation and depression. I was beginning to see that this was not going well.

I visited my son in San Francisco. That trip was emotionally as well as physically rough on me. In the 17 years our son has lived 3000 miles away, I had never made the trip without Sid. I was thrilled to spend the week with Joel, but felt incomplete without Sid being there. I visited my sister in Chicago for Thanksgiving. It was the 3rd year I had done so alone, as the two years prior to placement, Sid was not mentally or physically well enough to fly and spend a week away from his usual routine. He attended a respite house where they kept to his routine as much as possible. I thoroughly enjoyed my week with my sister, her busy household, the great nieces and nephews, and of course the dogs. But always, in the back of my mind and heart was the absence of Sid.

My dear friend of 60 years invited me to her home in Miami for my birthday in July, and her home in The Villages for the Christmas holiday. It was during those two visits that I got to spread my wings and try flying solo. My birthday coincided with an anniversary celebration of a women’s charitable group to which she belongs. I met a variety of fascinating, intelligent, accomplished women who were easy to talk with.

During the Christmas holiday, I went with my friend and her husband to a big Chanukah house party, where I knew absolutely no one. I always attended those types of events as part of a couple. I could stay with my husband and strike up a conversation with the wife of whomever he was speaking with. I could venture away from him to talk with others, but he was always there to return to. This time, and forever more, he was not going to be with me as a security blanket, and I was determined not to cling to my friend all night. I took a deep breath and ventured into the crowd to start conversations on my own. After the party, my friend congratulated me on a job well done. Okay, I told myself. You are making progress. Two steps forward.

When I returned home from these trips, I tried once again to go it alone. For my entire life, if I went to any woman’s function, I always went with a friend. As previously stated, walking into an event completely alone was totally out of my comfort zone, and I hated it. One step back.

And this is how the year went. Getting together occasionally with friends, but so infrequently that I could not escape my depression. Visiting friends and relatives for weekends which were always enjoyable, but faced with a big letdown and loneliness when I returned home. Attending new groups I found online at Meetup; feeling miserable about going alone, but forcing myself to do it. I found a monthly women’s writing group that I enjoyed and felt comfortable with the members because, for a change of pace for me, we had an interest in common that had nothing to do with loneliness. It was close to an hour from my house early on the third Saturday of every month. Apparently I did not like it enough to get up that early and drive that far, as I only attended one meeting. One step back.

This has been my now 13 month attempt at forging a single life. A step forward; a step back. Some enjoyable events followed by let down and depression. But always, always, always, picking myself up and trying again.

Please tell us on the Message Boards how you, as a pseudo single person with a spouse in a long term care facility, or as a true widow/widower are doing at your attempts to go it alone.

Stay tuned for the final installment of this blog series  -How I Learned to Accept Life as a Single, and What This Experience Has Taught Me.


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, FRIDAY, APRIL 17, 2015 – PART II – THE EVOLUTION OF AN ALZHEIMER SPOUSE-ADJUSTING TO CHANGING ROLE OF CAREGIVER INSTEAD OF WIFE


Part I left off where I finally, after at least 5 years and an emotional meltdown, accepted that the husband I knew and the great marriage we had for almost 40 years was gone. Nothing I could do was going to bring either back. Alzheimer’s Disease had won the first battle, leaving me emotionally devastated. Where to go from here?

Whereas the first stage was a constant fight to maintain my life, the next stage was lonely and physically exhausting. The loneliness came from adjusting to living with a man who was no longer capable of reciprocal conversation, emotional support, adult advice, fun companionship, or sharing of life’s comedies and tragedies – everything that defines a good marriage and loving relationship. His brain was damaged in all of those areas, and I had to learn to live with it.

Now, however reluctantly, but out of necessity for my own sanity and his calmness, I did exactly what my social worker had been advising for years – I related to him, not as a husband, but as an Alzheimer patient. I attempted, as best I could, to answer the endless questions as if he had only asked them once, let his irrational rants roll off of my back, try not to feel the pain at his complaints that I did not do enough for him, and above all, not argue with any of his irrational statements, angry outbursts at things I forgot to do for him or did incorrectly (in his estimation). When I became frustrated and exhausted from the 24/7 caregiving, I would sometimes tell him how tired I was. His response was to pout, cry, and yell at me – “Well, then just PUT ME AWAY.”  He may no longer have possessed adult cognition and understanding, but he certainly knew how to pile on the guilt.

This is the stage so many of my members are experiencing now. I read about it daily on the Message Boards. I, like you, was so consumed with caregiving, which included the physical job of lifting his wheelchair in and out of the car; pushing and navigating a 200+ lb. man in that chair; helping him with bathroom and hygiene tasks; that I had no time to “take care of myself”,  as the experts advise and insist. My back was destroyed, and I was in constant pain. Sleep was minimal, as his middle of the night bathroom issues took precedence.

Not little by little, but rather quickly, he regressed to the young toddler stage of “me, me, me”. He was incapable of seeing beyond his own needs. Sometimes it made me angry that my needs were ignored, but most often, I was just incredibly sad that our lives had come to this. In spite of my “acceptance” of the changes Alzheimer’s Disease had wrought, I still often cried myself to sleep, asking, “Where was my life with the man I adored? Where had it gone?”

It is at this stage that love changes from passion to a mother’s love for a child. It is devastating to experience and similar to going through a death. I elaborated on it in the blog - AD Alters Married Love.

Although I tried to follow my own advice of making friends and attending activities while he was in Day Care a few days a week, I admit that my exhaustion and overwhelming depression at losing the husband and marriage I knew, superseded my attempts at socialization. When I had a few hours respite, I curled up in bed with a mindless tablet game to rest my painful back and broken heart. This was the stage in which I began the long, hard, deep grieving for the husband I had lost to Alzheimer’s Disease. Little did I know just how long and difficult that would be.

Members often ask – “When do you know they are ready for placement?” My answer is always the same. The question is not when THEY are ready for placement. The question is when YOU are ready for their placement. I knew the time had come. I could barely stand; I was not sleeping; I was stressed to the point that I had stopped eating. I, who had always taken pride in my appearance, was a mess. My face was lined, my hair was hanging, my back was bent, and I was wearing ratty old clothes. My appearance was apparently so dreadful that relatives and friends could not hide their shock when they saw me. I got used to hearing, “My God, you look awful. You can’t do this anymore. It’s killing you.”

It wasn’t one event. It was an accumulation of too much caregiving that finally broke me, and I knew I had to place him. I will not go into the massive stress encountered in dealing with Medicaid and their approval system here. You can read about it the blogs May - August, 2013.

Because he was physically disabled from Diabetes, and in constant pain in his knees, feet, and back, I used the “rehab” excuse for “sending him to a place for a few weeks that would help his pain” as the method to get him to the nursing home. I told him that the doctor recommended it as intensive therapy. He was in so much pain all of the time, that he reluctantly agreed to it.

What can I say about the last night I would ever spend in bed next to my Sid, with whom I had been sharing a bed and life since I was 21 years old?  Because of his pain, he was not able to turn so I could hold him close and hug him. The most I could do was place my arm across his chest in disbelief that our life together was ending. I waited until he fell asleep before I gave in to my sobs.

The next day, when I had to leave him at the nursing home, I saw, sitting in his wheelchair next to a narrow little hospital bed, not the “disease” that had been destroying our lives for 10 years. I saw the man I had fallen in love with the first time I laid eyes on him. I saw the man who had been my lover, friend, rock, support system, and life for 43 years. As I walked down the corridor towards the exit to my new life, I was defeated. A nursing home employee looked at me and said, “First day, huh?”

This has been very difficult to write. The tears are running down my face as I do so. I am doing this, as always, in the hope that it will help you cope as you go through this stage. Whatever you are feeling, please know that you are not alone, and all Alzheimer Spouses understand your pain.

MESSAGE BOARD: Joan’s Blog –Evolution Part II – Wife to Caregiver

Stay tuned for Part III – Forging a single life.


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, APRIL 13, 2015 – THE EVOLUTION OF AN ALZHEIMER SPOUSE –PART I – WHERE DID MY HUSBAND GO?
As Alzheimer Spouses, we go through a series of stages in trying to accept, adjust to, and deal with the consequences of our spouses’ Alzheimer’s Disease. Everyone with whom I speak lately tells me that they can see, in my writing, the progress I have made in the nearly 8 years since this website was launched. Any progress I have made has been sloooooow, and far from steady, but I would like to record it for you in a multi part series for the purpose of helping you understand your emotions and actions at each stop along your own journey, and perhaps help you avoid some of my mistakes.

Before we had a definitive diagnosis, I was confused, horrified, and emotionally distraught. The man with whom I had shared my life and had loved for 35 years had changed before my eyes. My loving husband, the man who had taught me the art of marriage compromise; the man with whom all conflicts were settled by determining, not what was best for me, not what was best for him, but what we could both live with that was best for our marriage; the man who was the steady rock to my impulsiveness; the man whose touch could set me afire, even after 3 decades; the man whose calm hand on my shoulder was all I needed to know that everything was secure in my world, had suddenly become irrational, argumentative, angry, impulsive, and impossible to reason with. Every discussion ended with him screaming at me and making no sense. All of my attempts to demonstrate to him how irrational he was being ended in his stone faced anger. As I wrote in my very first blog, one day I had an emotional meltdown, threw my arms around him, and sobbed – “I miss you! I miss you! Who are you? What have you done with my husband?” And so it began. Our Alzheimer journey.

For at least the next five years, I fought, kicked, screamed, and almost ended up in the hospital from emotional stress, in attempts to bring him back to who he was; to what our marriage was before the Alzheimer Devil invaded his brain. I argued with him; I tried to reason with him; I cried; I screamed at him. There were times when he understood, felt quite badly about his behavior, and promised to “do better”. It never happened.

The emotional pain I felt was so severe, it was actually physical. I could feel the pain of my heart shattering into millions of little shards. None of this was helped by my social worker, who told me that I could no longer relate to my husband; I had to relate to “the disease”. She was telling me that reasonable discussion, compromise, and mutual respect for each other’s opinions were no longer viable. I had to learn to treat my husband as a “child”; to make all of the decisions; and ignore his rants, temper tantrums, insults, and rages. They were not “him”. They were the “disease”.

I argued with her and fought for my marriage. I told her that she didn’t understand – if I did what she said, I was going to lose the wonderful marriage I had. “What are you telling me?”, I cried. “That my husband is a disease, not a person anymore?”
She told me that slowly, I was going to morph from a wife to a caregiver. “Stop telling me that! I want my husband back”, I sobbed and yelled and stamped my feet.

During this period, I was having nightmares; I was unable to catch my breath often during the day; I was shaking and crying almost all of the time. My doctor put me on an anti-depressant, which calmed me down to a certain extent, but I finally came to the realization that I was going to have to be the one to change or I was going to be the who was going to die.

I had lost the first battle. He was not coming back, and I was going to have to learn to live with that reality.

I know this sounds familiar to many of you who have gone through the same struggle. Please tell us, on the Message Board (Joan's Blog - The Evolution of an Alzheimer Spouse), your reactions to this stage, what advice helped you, and what you would have done differently as an Alzheimer Spouse.

Stay tuned for Part II: The social worker’s prophecy comes true – A husband, wife, and marriage disintegrate to patient and caregiver.


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 – MARCH 28, 2015 – I SURVIVED THE WASHINGTON DC EXPERIENCE
 PART I

Fear not. Rather than bore you with a list of facts and figures, I shall point you in the direction where you can read those for yourselves in Part II of this blog, where I will also give you an overview of the Advocacy part of the Forum experience.

However, in Part I of this blog, I must write from my heart about the emotional impact the Forum has on both the advocates AND the legislators/aides, as well as the impact one person and one group of people can and do have upon each other in changing themselves and the world.

As you know from reading the information blog below (Sending Joan to the DC Alzheimer’s Forum and How it All Works), we delegates were sent to Washington to lobby for Alzheimer legislation. I also always manage to inform and educate everyone I meet about Alzheimer Spouse issues and the role The Alzheimer Spouse Website plays in that process.

As is explained below in Part II of this blog, we advocates have practiced who is going to say what, when we meet with the legislators/aides. There is always a “lead” person who presents the hard core facts and figures, and asks for the legislator’s support on the specific bills. Then there is one, sometimes two or three advocates, who tell their emotional stories. I recall mentioning in a previous Forum blog that the legislator’s eyes glaze over when they politely listen to the statistics, but that they are honestly affected by our stories. Do you want to guess which job was mine? Surely you know that my expertise is not in citing numbers and facts. I am the story teller, and I am pretty good at it, but I never expected the reactions I received this year. Let me share with you what I said at each meeting. Please bear in mind that an emotional story only goes so far if it is not tied in with fiscal reasons for supporting a particular bill. I learned to include that extra piece many years ago from Laura Jones, whose husband, Jay, was diagnosed with Early Onset Alzheimer’s Disease when he was in his 40’s.

Joan’s Story - My story is a love story. If you don’t believe in love at first sight, you don’t know us. The only reason there were 7 months between our first date and our wedding was because Sid had to wait for me to graduate college before we got married. We were each other’s best friends, lovers, support system. Everyone who knew us knew how close we were. We were one word – “joanandsid”.. We adored each other and built a great life and marriage. We also had good jobs and contributed to the economy. We paid taxes, supported the tourist industry with trips and cruises, bought cars, bought a house. We paid INTO the system. And then one day, at barely 60 years old, Sid was diagnosed with Alzheimer’s Disease, and our lives and marriage fell apart. He was fired from a new job because in the year he had it, he was unable to learn it. I also must emphasize that Alzheimer’s Disease, besides NOT being just an “old person’s” disease, is NOT just memory loss. There can be drastic personality changes, as there were with my husband. This warm, caring, loving man became mean, impulsive, angry, full of rage. The same man who used to praise me to everyone he met, was now directing irrational rage filled tantrums at me and insulting me in public. ( This is where I explain about starting the website). So now, I could not work because I was busy taking care of him, taking him to doctors and for tests, and trying to live with his rages and tantrums. With neither of us working, we went through our retirement savings, and now, thanks to Alzheimer’s Disease, instead of being productive citizens contributing to the economy, we are what those concerned about the budget call a “drain on the system”, taking money from Medicaid. So the love of my life sleeps alone in a bed in a nursing home that is costing Medicaid $7500 a month, and I sleep alone in what used to be OUR bed. If congress invested the money up front for research to find a cure, or at least delay the onset of the disease for 5 years, millions of people like us would have much more time to be holding each other close, as well as putting INTO the system instead of taking from it.

Much to my complete shock, every legislative aide with whom I shared my story, and one "macho" advocate, cried when I finished, thanked me for my honesty, and asked for my website card, congratulating me on starting it. Did I and the lead “facts and figures” person make a difference that day? I think we did. Multiply that by the 1000+ delegates who presented the numbers and told their stories. An impact was made by 1000+  people who felt that each one of them could make a difference.

What you, a group of strangers who know each other and me only from “meeting” online, did to make this trip possible for me, is a grand testament to how each individual can touch another and make a difference in their lives.

The “send Joan to DC” initiative was started by our member, Myrtle, who shared with me that the project lifted her spirits and energized her as she hadn’t been in years. She had been feeling down and depressed as if nothing good would ever happen again (We Alzheimer Spouses get that way, don’t we?) when she saw everyone pull together to make the trip possible. She felt excited and happy again. People reaching out and making a difference in each other’s lives.

What a thrill for me to meet Texasmom and Jackiem29. We talked easily as if we had known each other for years. It is the bond of being Alzheimer Spouses who have shared so much online that puts us at ease with one another.

And a visit from Paulc, who lives nearby. He told Coco, but they both managed to keep it as a surprise for me.

What can I say about Coco from Hawaii? If not for her generosity in sharing her room with me, I would not have been able to attend, even with your generous donations, because the Forum “rate” hotel rooms were sold out. What two strangers living 6000 miles apart, spend 4 days as hotel roommates, and get along as if they were sisters? Alzheimer Spouses who make an impact on each other’s lives do.

My thanks to all of you for making this trip happen for me, for touching my life, and making a difference in it.

PART II
Let me start by giving you a short summary as to how the Forum works and asking you to read over the blog below ( Sending Joan to the DC Alzheimer’s Forum and How it All Works) that explains it in detail.  

  • Alzheimer advocates, i.e. delegates from every Alzheimer Association Chapter in every State descend upon our nation’s capitol to lobby for Alzheimer legislation that the Alzheimer’s Association has chosen to focus on for that particular year.
  • Delegates are given 2-3 “ASKS” , i.e. bills or requests for which to lobby our legislators.
  • Delegates learn the details of the “ASKS”, and learn what to say to be most effective in their pitches.
  • Delegates meet with their state’s Alzheimer Association staff, are given their appointment schedule, and practice which delegates are going to say what to which legislator/aide.
  • The days are 12-15 hours long; the pace is unrelenting; miles are walked; leg muscles and feet are pushed to the limit; emotions run high; but the satisfaction one feels at having accomplished such a worthwhile goal makes sleep a secondary priority.

The 2015 Alzheimer’s Association Legislative Requests:

  • That each legislator send a personal letter to the Chair and Ranking Member of the Appropriations Committee supporting a $300 million increase for Alzheimer’s Research activities. Click HERE for more detailed information
  • Sponsorship of the HOPE ACT, which will ensure Medicare beneficiaries newly diagnosed with Alzheimer’s Disease and their families receive comprehensive care planning services. Passage of this act would be HUGE in relieving families of the current nightmare of incorrect, incomplete, and/or non-diagnosis that is the norm rather than the exception. Have we discussed it many times on my website? It will ensure that an Alzheimer’s Diagnosis is written in the record, and that the patient’s records follow him/her from one doctor to another throughout the illness from diagnosis to death. This act will provide Medicare coverage for comprehensive care planning services following a dementia diagnosis; the services would be available to both the diagnosed individual and his/her caregiver. To read and understand more about this important act, please click HERE.

For detailed information on the deserving honorees who received various Alzheimer Association awards and recognition, as well as complete information about the Forum activities and pictures, click HERE.

For pictures, please visit my Facebook page - Joan Stairman Gershman.

MESSAGE BOARD: Joan's Blog - I Survived the Washington, DC Experience


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 NOTICE - MARCH 22, 2015 - UPDATES ON THE WASHINGTON, DC ALZHEIMER'S DISEASE FORUM - Good Morning to all. It is Sunday morning, March 22, 2015, and delegates from all over the country are beginning to arrive in Washington for the annual Alzheimer's Disease Forum (see the blog below for a full explanation on how the Forum works). Thanks to the generosity of my wonderful website members, I will be attending as a delegate from Florida. The pace for this event is frenetic, but I will try to update you on what is going on as often as I am able under the Message Board topic: DC or Bust. Look on my Facebook page for more information and pictures. Also, you will be able to follow the Forum activities in detail by going to www.alz.org/forum.

Due to the horrendous winter in Boston, I have friends who have jumped at the chance to house sit for me while I head North. I am looking forward to meeting three of our members who will be delegates from their States - Hawaii, Texas, and Georgia.

As you know, our member Coco, has invited me to share her hotel room. If all goes as planned, I should be in DC later this afternoon.

 

JOAN’S BLOG – MARCH 10, 2015 – SENDING JOAN TO THE DC ALZHEIMER’S FORUM AND HOW IT ALL WORKS

For those of you who are unaware of what has been transpiring on the Message Boards since last week, I would like to give you an update. Some of our members wrote that they would be attending the annual Washington DC Alzheimer’s Forum (March 22-25). I wished them good luck, but wrote that I would not be attending this year, as our local Alzheimer’s Chapter was not able to provide any funding for the trip, which has become exorbitantly expensive. Much to my shock, and initial refusal, website members banded together to insist that I attend at their expense. After much prodding by everyone, who was looking at it as a business trip to represent their interests, I agreed. (You can click here for the message board discussion – DC or bust)What this means to me personally will be discussed in a future blog. For now, I would like to explain to everyone exactly how the forum works.

Think of a political convention where States send representatives. The Alzheimer’s Advocacy Forum is a convention where the State Alzheimer’s Association staff from all 50 states join with State delegates ( those who have volunteered or been chosen) and descend upon Washington DC for 3 days to advocate for Alzheimer funding and programs. You can read the schedule of daily events by clicking http://www.alz.org/forum/.

The first evening is similar to a political convention in that there is a roll call of States. We delegates sit with our States, and a member of each State is called upon to read a statement as to what their State has accomplished during the previous year related to Alzheimer’s Disease advocacy. The rest of the program can be accessed at the same link as above - http://www.alz.org/forum/.

It is here that I must add that Washington DC does not sleep. If you are going to be a delegate, you had better have a reserve of energy, something of which I was not aware the first year I attended. I almost collapsed from exhaustion.

The second day starts at 8 AM, and concludes with a dinner and speaker at 8:30 PM. It is during this day that we are given the bills/policies for which the Alzheimer’s Association is advocating during this particular year. We sit with our State delegates, learn the bills, and listen to programs that teach us how to advocate and what to say when we meet with the legislators. We are given a schedule of legislative meetings for the next day. Staff and delegates decide who is going to meet with which legislators and what each person is going to say.

The following day begins at 7 AM, where we are given big purple ribbons to wear, ( or at least they used to do that; I don't know if they still do)so we are recognizable all over Capitol Hill, and off we go with our State delegations to our meetings. We finish at 5 PM.

What I feel is important to emphasize is that we are required to stick to the script. We are there to advocate for whichever bills/policies the Alzheimer’s Association has chosen for the year.

As for me personally, it has always been very important for me to raise awareness of Alzheimer Spousal issues, and I do that by outside networking. Whomever I meet, whether it is on a bus ride to an event, sitting next to someone at dinner, sharing a cab, or meeting one of the speakers, I tell them about my website, its purpose, and how important spousal issues are. ( There isn’t a ladie's bathroom in Reagan National Airport, the Omni Hotel, or the Marriott Hotel in Washington DC that has not had a stack of my business cards left on the vanities)

During my trips to the Forum, I have been fortunate to meet Sandra Day O’Connor, Maria Shriver, and Newt Gingrich ( who was chairing the original Alzheimer’s information hearings). If you type in DC Forum in the “search” line of the previous blog section on the left side of the home page, you can read about my previous adventures.

This year, I am very excited to be the hotel roommate of our member from Hawaii, Coco. If not for her generous offer to accommodate me, I would not have been able to attend, as the Forum hotel, and those with which the Forum partnered, were all sold out.

My thanks again to all who are so generously donating to make this trip possible for me. You can read about all of this on the Message Board Topic: DC or Bust.

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, MARCH 2, 2015 – A ROUGH NIGHT OF EMOTIONAL MEMORY

Sometimes it is one little occurrence – a song lyric, a movie title, a picture; one small incident that floods my mind with emotional memories of what it felt like to be married. This particular Saturday night it was a Facebook comment by the wife of my son’s childhood best friend.

“J” wrote – “Picking up H (their youngest daughter) from chorale with the husband. Very glad he’s home. I dislike travel weeks.” (I was aware that he had been on a business trip the previous week)

Suddenly, I felt what "J" felt - the warmth spread through my body – the warmth, the contentment, the safety I used to feel every night when Sid walked into the house. He was home. My world was complete. That feeling of completeness, of security, of everything is okay in my world, has been replaced by a cold emptiness since Alzheimer’s Disease has forced us to live apart.

As I write this, there is a lump in my throat and tears in my eyes. Most often, I am able to keep it at bay, but tonight I am allowing myself a bit of wallowing in self pity.

Tonight, I desperately miss my husband and our life together. Why did Alzheimer’s Disease take him away from me? The sheet and blanket are tucked in tight on his side of the bed as I toss and turn restlessly on my mussed up side. I miss his warmth, the safe cocoon of his arms holding me.

I often think it would be easier on me if he had died, rather than this pain of separation – he alone in his narrow little hospital bed 20 miles away. Me alone in our huge king size bed. This is not right. It is not the way it is supposed to be.

Yes, I know exactly how “J”, who wrote on Facebook feels. She is safe, secure, complete and all is right when “S” is home. It is how it should be. It is how it used to be with Sid and me. Alzheimer’s Disease has seen to it that it will never be that way again for us. And tonight I am sad, lonely, and my world is incomplete because of it.

I do believe that this is one of those blogs that define this website – a place where emotions that are unique to Alzheimer Spouses can be laid out in bare, unsweetened, raw truth.

Even if your spouse is still at home with you, depending upon what stage he/she is in, he/she is not with you as he/she once was. The pain of that emotional separation is almost as difficult as the pain of physical separation when one's spouse is in a long term care facility.

MESSAGE BOARDS: Joan's Blog - Rough Night of Emotional Memory

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©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 – FEBRUARY 26, 2015 – IT’S NOT JUST MEMORY – MISSING SUBTLE SIGNS OF DEMENTIA

I do not usually write blogs based upon articles from newspapers or magazines, but occasionally I find an article that I feel is so important and relevant to our situations as Alzheimer Spouses that I must address it in a blog. The most recent article meeting that criteria is Everyday Health website’s - 11 Early Signs of Dementia - by Madeline R. Vann, MPH.

One result of our efforts to raise awareness about Alzheimer’s Disease has been near panic among the Baby Boom Generation every time someone forgets a name, a date, or where they put their keys. Memory, memory, memory – such hyper focus on any slightest example of memory loss sends those in the 50+ age group scrambling to the doctor for Alzheimer testing.

The problem with this focus on memory is that more subtle signs that one would never associate with dementia may be missed very early in the disease in people as young as 50. These changes in personality are often so pervasive and destructive that they eventually tear apart decades long loving marriages, with not a clue that the problem was dementia related.

The non-memory signs denoted in the article often lead to misdiagnoses of depression, midlife crisis, menopause, and/or stress, especially if the person being evaluated is in their 50’s. Most physicians, including neurologists, continue to associate Alzheimer’s Disease with what is considered old age – 70’s and 80’s.

I have condensed the article’s comments and added some of my own, explaining how a particular behavior impacted my life with Sid. Some of the personality and behavior changes in early dementia can be so devastating that marriages do end because of them. I remember being incredibly frustrated at Sid’s uncharacteristic, hurtful behavior that I screamed at him, “WHO ARE YOU AND WHAT DID YOU DO WITH MY HUSBAND? If anyone you know has a spouse (or any loved one) who is exhibiting one or more of the following behaviors, it may be wise to suggest taking them to a dementia specialist BEFORE they contact a divorce attorney:

MISSING SARCASM – “people with both frontotemporal dementia (FTD) and Alzheimer's disease tend to have a harder time picking up on sarcasm”. Remember that an Alzheimer patient regresses through life’s developmental stages. Recognizing and understanding sarcasm is a later developed language skill – not something a two year old would comprehend. Early in the disease, the Alzheimer patient may have regressed back to the age when sarcasm is not understood.

FREQUENT FALLING -“People will come into our office concerned because they forgot what was on their grocery list last week, but when their spouse says they’ve fallen four times in the past year, that’s a sign of a problem,” says Rankin. People with this movement disorder, known as progressive supranuclear palsy, might not catch themselves on the way down either, making this dementia symptom even more dangerous.”

DISREGARD FOR THE LAW – “Some younger people in the beginning stages of early onset dementia lose their sense of social norms. Shoplifting, breaking into someone’s house, and inappropriate interpersonal behaviors, such as sexual comments or actions, all make the list of surprising dementia symptoms — and they can lead to legal trouble, too.”

STARING – “……….people showing early signs of dementia look like they’re staring a lot. Rankin adds that, “they try to read and they skip lines.” This is one of the signs of dementia that the patient might not completely be aware of, although people around them probably will be.”

EATING OBJECTS – “………dementia patients might try to eat the flower in a vase on a restaurant table because they “know they are there to eat, but don’t know what the flower is doing there” 

LOSING KNOWLEDGE – “ ……….failing to find the word you are thinking of is surprisingly common and not necessarily a sign of dementia, says Rankin. But losing knowledge of objects — not just what they are called, but also what they are used for —is an early dementia symptom.”

LOSING EMPATHY – “If someone who is usually sweet, considerate, and polite starts to say insulting or inappropriate things — and shows no awareness of their inappropriateness or concern or regret about what they’ve said — they could be exhibiting an early sign of dementia. In the early stages of some types of dementia, symptoms can include losing the ability to read social cues and, therefore, the ability to understand why it’s not acceptable to say hurtful things.” This one played a huge role in my shock and confusion at Sid’s change of character. I could not understand why this man who spent a life time displaying love and pride towards me suddenly was insulting me in public in front of friends. It was brutally hurtful.

IGNORING EMBARRASSMENT – “………people with dementia symptoms may also lose the ability to understand embarrassment. This is a multi-faceted sign of dementia: They themselves don’t feel embarrassed by the situations they find themselves in and they also don’t understand that situations other people are in (for example, on television sitcoms) are embarrassing or uncomfortable.” Sid would lose his temper, scream at store clerks for no good reason, cause scenes in stores, and felt no embarrassment because he saw absolutely nothing wrong with his behavior.

COMPULSIVE, RITUALISTIC BEHAVIOR -  “Plenty of people have odd habits and like things done a certain way,” says Rankin. But while these habits are within the realm of normal, extreme hoarding behavior or detailed rituals or compulsions, such as buying a crossword puzzle book every time they go to the store even if they have hundreds of them, can be dementia symptoms.”

MONEY TROUBLES – “……might start off as having trouble balancing a checkbook or keeping up with expenses or bills, but as the disease progresses, poor financial decisions are often made across the board. Though many people brush this symptom off as just “a normal part of aging,” they shouldn’t. “We tend to associate aging with losing your mind. That’s not healthy aging — it’s a disease.” 

With your help, this website has done a remarkably good job in the last 7 ½ years in raising awareness of the devastation Alzheimer’s Disease brings upon marriages. We have explored, discussed, and written about the emotional issues experienced by Alzheimer Spouses worldwide. We have provided support and understanding found nowhere else. Our influence is far reaching. Because we have such a wide audience, I am hoping to reach as many people as possible with the message in this blog and article about which it speaks – Dementia is NOT JUST MEMORY LOSS. The more professionals and non professionals who are aware of the lesser known, subtle symptoms of dementia, the earlier patients can be identified and helped to live a more productive life.

No, they will not be cured. There is no cure for dementia. But early diagnosis can lead to information, understanding, and support services for both caregiver and patient. This is especially important for spouses who may be on the receiving end of anger, violence, paranoia, hatred, and verbal abuse from the one person they have always loved and trusted. Witnessing this complete meltdown of their husbands/ wives personalities, and NOT KNOWING WHAT IS CAUSING IT, is emotional devastation that is literally physically painful. I know because I have been through it.

Please spread the word about the more subtle signs of dementia. Somewhere in the world, you will be helping an Alzheimer patient and caregiver whom you do not even know.

MESSAGE BOARDS: Joan's Blog - It's Not Just Memory; Missing Subtle Signs of Dementia

 

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©Copyright 2015Joan 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, FEBRUARY 11, 2015 – A “DATE” REQUEST


In my January 20th blog (see below), I discussed my attempts at finding new Non Alzheimer friends and activities as a “single” woman. Single, because my husband has resided in an Alzheimer unit of a nursing home for a year and a half, and I am as alone without a husband and marriage as any widow. According to my counselor, because I am making the attempt at building a new life, I am progressing better than those who say they simply cannot bring themselves to go out at all. I feel as if I am stumbling more than progressing, but I am doing the best I can.

My “progress” at this point has been to sign up for every outing available hosted by the new group I have joined. So far, I have only attended three events, but two out of the three were extremely enjoyable, with the friendliest people I have ever met. The last two weeks in February and the entire month of March are jam packed with activities ranging from lunches to boating trips. What I hope to gain from these gatherings is a few good friends with whom I can connect.

This group of which I write is for widows and widowers who want to rebuild their lives as singles. I was allowed to join because the members felt that I was just as much a “widow” as they were. I am thankful for their support and understanding.

In any case, when I speak of making new friends with whom to socialize, I mean women friends. Now, I have nothing against male friends in a group situation, but my mindset has been to make female friends.

While I was reveling in my brave attempts to socialize in the single world, I struck up a conversation with an elderly gentleman whose wife resides in the same Alzheimer unit as Sid. We have talked briefly when we have run into each other during the time our spouses have been in the unit. This particular time, we talked about trying to make a new life for ourselves, what strides we had made, and where and with whom we had gone. Out of the blue, he asked me if I would consider going to dinner with him sometime “as a friend”, assuring me that he had nothing “sexual” in mind. Before I had a chance to run this through my brain, my mouth said, “Sure.” And off we went – he to visit his wife; me to my car as my visit with Sid was finished.

Within a nano second of “sure” coming out of my mouth, I regretted it. In the first place, this man is at least old enough to be my father, and the fact that he even referenced sex at his age floored me. (My apologies to the 85+ year old men reading this who may be offended that I am somewhat flummoxed that they are thinking about sex).

Obviously this was a request for a simple, friendly dinner and nothing more. However, it brought a much more serious issue to my mind. I have always said that I understand the need for companionship (and more) of Alzheimer Spouses in my position – married in legal terms only – and that I support those who make the decision to go ahead with another relationship. But when he actually called to ask me out, I knew I could not do it.

My husband, although confused and disoriented, still knows and loves me. He tells me all of the time that he loves me. I simply cannot walk away from him, everything we have been to each other for 45 years, and all that we have meant to each other, to have dinner with another man, simply because I am lonely and need to socialize. I repeat – it was a request for a simple dinner, but I could not do it. I expect many of you will think I am being foolish; many will agree with me. I write this not for approval or disapproval. I write it, as always, to help those who may be facing the same situation.

We have to do what is comfortable and right for us at the time it is presented. As more years go by, I expect that my feelings on this matter will change. But for me, for now, this is how it is.

MESSAGE BOARD: Joan's Blog - A Date Request


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©Copyright 2015Joan 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 –FEBRUARY 4, 2015 – SID AND THE PATRIOT’S – TRACKING ALZHEIMER’S THROUGH THE SUPER BOWL
Sid is a football fanatic, and always was an expert in the rules, technical jargon, and complex plays that make up the sport of football. Ever since I have known him (45 years), he has been able to understand, discuss, dissect, and swear his way through endless hours of games that this baseball girl finds unfathomable.

Sid is also a rabid New England Patriot’s fan. After the Patriot’s Super Bowl XLVIIII win on Sunday, their 4th in 13 years, I thought about how I was able to track Sid’s Alzheimer progression through his reactions to each of those games.

The year is 2001. We are living our lives, enjoying our jobs, our travel, and as always, our time with each other. After countless years of suffering through embarrassing flubbed plays, talent challenged players, being the butt of endless jokes by late night comics, sports writers, and one disastrous drubbing in a previous Super Bowl appearance, my husband and his best friend were sitting in our den ( 25 miles south of Boston) watching the New England Patriots play in the Super Bowl. Backed by a new owner, and an up and coming young quarterback, we wives are told that the Patriots have an actual chance to win the game.   

His friend’s wife and I are not into football ( Oh, sacrilege!). We just keep providing the food they are stuffing into their mouths between screams of technical jargon and swearing. When the end came, and the Patriot’s won their first Super Bowl, ever, Sid was ecstatic. He knew and could recite for weeks afterward, every intricate rule, strategy, and play of the Super Bowl that his beloved Patriot’s had won.  

The year is 2003. Something is brewing in our personal lives. Sid was under massive stress at work, was forgetting people’s names; forgetting appointments and social events I had discussed with him. Thinking that work stress was catching up with him, he changed jobs to one he hoped would be less stressful. The Patriots were once again playing in the Super Bowl. His failing memory did not in any way affect his knowledge and understanding of football. Nor did it affect his excitement at the Patriot’s SECOND Super Bowl win.

The year is 2004. Our personal lives have changed drastically due to Sid’s altered cognitive abilities. He was forced out of that new job that was supposed to be less stressful, because he had been unable to learn it. He was having difficulty following directions, and most disturbingly, he was missing body language cues, and was unable to stop talking or end a conversation without direction from me. He was no longer able to work, had taken early retirement, and was now a “house husband”. As we were trying to adapt to our new reality, the New England Patriots were being touted as a “Dynasty” as they headed to their 3rd Super Bowl in 4 years. Once again, my den was the scene of football hysteria. I did not give it too much thought at the time, but in the midst of his jubilation at their THIRD Super Bowl win, I did not hear much detail about complex plays and rules. I could not know that this game would be the Patriot’s last victory for another 10 years, nor that it would be Sid’s final understanding of the complex intricacies of football.

Fast Forward to 2012. It has been 8 years since the Patriot’s won a Super Bowl. It has been 8 years of Alzheimer Hell, as Sid’s cognition and emotional stability took hit after hit. During this time, we lived through rages, temper tantrums, complete loss of reasoning ability, continuing loss of cognition and physical abilities. He was now dependent upon a walker for mobility, dependent upon me and a part time aide for ADL’s and personal hygiene. The Patriot’s are NOT playing in the Super Bowl, but the Baltimore Ravens are, and having seen the movie, The Blind Side, I wanted to see the hero of that movie, Michael Oher, play in the Super Bowl. I chronicled the entire Super Bowl experience in my blog, The Super Bowl in the Alzheimer House.What was so noticeable about that game was that Sid was unable to explain any of it to me, nor was he able to answer my questions about what was going on.

The year is 2015. Sid has been residing in an Alzheimer Unit of a nursing home for a year and a half. He lives in and out of his own little world. Sometimes he knows where he is; often he does not. More often than not, he is unable to find the words to express himself, even if he does know what he wants to say. I tell him the exciting news that his Patriots are playing in the Super Bowl that evening, and I will make sure the nurse turns on the tv in his room, so he can watch it. He asks how many games there are. When I tell him that tonight is the one and only game, he tells me that he cannot watch it “here”. He has to go home and watch it because it will be on late, and he has to get up early to go to work in the morning. I tell him not to worry, that he has the day off tomorrow. That evening, I call the nurse and ask her to turn the game on Sid’s TV for him.

When I visit him the next day, I ask him if he watched the Super Bowl. I tell him that his New England Patriot’s won their 4th championship. He smiles and says, “Good”.  I tell him that I am buying him a new championship tee shirt to add to his collection. He stares at me, wheels himself away, around in a circle, and back to me. It is time for lunch. I kiss him goodbye and leave.

2001- 2015 – The New England Patriot’s – Four Championships

2001- 2015 – Alzheimer’s Disease – 1
                      Sid - 0        

MESSAGE BOARDS: Joan's Blog - Tracking Sid's Alzheimer's Through the Super Bowl


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©Copyright 2015Joan 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 – JANUARY 20, 2015 – WHERE DO I GO FROM HERE?


The year is 2015. I am entering my 13th year in the Alzheimer World. During the first 3 years, due to frustrating misdiagnoses, I had no idea that I was crossing the threshold into a world of Hell from which there would seem to be no return. As I enter this 13th year, I feel that it is time for me to do some evaluating of where I have been and where I am going in both the Alzheimer World and the “normal” world.

My blogs chronicle my journey as an Alzheimer Spouse, and mirror yours in many cases, from the initial shock of realizing that a disease can alter a solid marriage built on love and trust to where I find myself now – a single woman living  “in limbo” as a widow with a living husband who resides in an Alzheimer Unit of a nursing home. I am not a wife; I am not a widow; I am legally married, but have no marriage, if one defines marriage as a bond of passion, friendship, trust, companionship, communication, and love between two people living under the same roof.

The husband I knew who was both gentle and strong, loving, kind, passionate, capable, an electronics whiz, and truly “the wind beneath my wings”,  is now trapped in a confused, angry, depressed, deteriorating mind. It is heart wrenching to watch him struggle to find words to express himself; to recall words I uttered barely a minute before; to scream for me to help him dress, rather than the aide assigned to him. This is what I face when I visit him, and this is what he lives. Because there is no cure, and because he is only going to get worse and less capable, I can do nothing for him but hold his hand and hug him.

So now we turn to me. Where do I go from here? I have accepted that I am “single”, need “single” friends, and desperately need activities that nurture my both my mind and fun side. (There is still a “fun” side buried deep inside of me, begging to come out and play)

For the last 10 months, based upon advice given me by my grief counselor, relatives, and friends, I have been trying to build that single life with new friends and activities. In Part III of my Isolation Series, I discussed how surprised I was to find how extremely difficult it is to find new single friends and activities, unless you live in an “over 55” active development that has a clubhouse and an activity and club for every interest on the planet. For 10 months, I have done things completely out of my comfort zone in the name of building a new life. Who can forget my 2 hour drive to Orlando last summer and subsequent overnight hotel stay because I wanted to see Blake Shelton in concert and no one else I knew did? Or my drive by myself to a Rascal Flatts outdoor concert an hour away, as well as my drive home in the pouring rain and darkness?

I have had hits and misses. On many occasions, I have taken two steps forward and three steps backward. I attended a luncheon for a “newcomers group”, the purpose of which was to find friendships and activities. I came home more depressed than I had been before I went, as I felt surrounded by souls as lonely as myself, looking for friends. I was uncomfortable. It was not a right fit for me. I attended a group for writers that had a different outcome. Our commonality was love of writing, interest in getting published, and helping each other through the processes, rather than a “lonely hearts” club. I loved it, and will be returning.

Walking into a room full of strangers, introducing myself, and trying to make conversation is not something that is natural for me. I am more of a one-to-one type of person, but necessity has forced me to learn to dive in and start, rather than join, a conversation. I look at it as a practice session for socializing on my own. Last month, I attended a party with a long time friend and her husband. Determined to “practice” my new skills and not stay attached to my friend all night, I spent the evening venturing into various groups of people and starting conversations, by asking about them and their interests rather than focusing on myself – a trick I learned from an outgoing, friendly cousin. Much to my surprise, it worked. People talked to me all night. When we returned home, I told my friend that I had been worried that my social skills were rusty, and I would be a wallflower all evening. She responded with – “No, you did GREAT!” One step forward.

This group socializing is out of my comfort zone. I am used to, and prefer, a small niche of long time friends, with whom I can go to dinner, travel, attend movies, and theater. Moving to Florida away from a home I had known for 36 years, and being thrust into the Alzheimer World upon arrival, threw my old methods of social interaction out the window. Since I am being given no choice but to live this involuntary single life, and I want to live it in the “normal” world, I must change my ways of meeting, socializing, and interacting with people.  

I will have successes and I will have failures. I will probably find myself in more situations out of my comfort zone than in it, but all I can do is forge ahead, with the pain of a love lost to Alzheimer’s Disease forever in my heart.

MESSAGE BOARDS: Joan's Blog - Where do I go from here?

Feedback to joan@thealzheimerspouse.com
©Copyright 2015Joan 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.

 

 

 

STARRECENT BLOGS:

Series - Caregiver Isolation - Part I - November 14, 2014

Caregiver Isolation - Part II - Is there a solution? - November 18, 2014

Caregiver Isolation - Part III - Spouse in a facility or has passed on - November 24, 2014

 

 

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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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