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SCROLL DOWN FOR JOAN'S NEW BLOG - A ROUGH NIGHT OF EMOTIONAL MEMORY

 

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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 That feeling of completeness, of security, of everything is okay in my world, has been replaced by a cold emptiness since Alzheimer’s Disease has forced us to live apart.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

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 – 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

 

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.

 

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


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.

 

 

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


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.

 

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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