TO NEW READERS - Get acquainted with us: Check out all of the resources on the left side of the website for valuable information. Start with the Previous Blogs, and read the Welcome Blog -What happens to your marriage when you realize that Alzheimer's Disease has changed the person you fell in love with - you are now married to a stranger. More great information to set you in the right direction are the topics on the left titled- Newly Diagnosed/New Member and Understanding the Dementia Experience. For those whose spouses have been diagnosed under the age of 65, read the section on EOAD. Please be sure to log onto this home page daily for "Daily News Updates" located after this section, and current blogs that chronicle my continuing struggle to adjust to my husband's Alzheimer's Disease.

CLICK HERE TO READ ABOUT HOW YOU CAN BE PART OF JOAN'S NEW BOOK, STORIES BEHIND THE FACES OF CAREGIVING

Scroll down for Joan's Holiday Weekend Blog

RECOMMENDED PRODUCT OF THE WEEK - AMAZON REVIEW- "As my grandfather continues on his journey of dementia, he is slowly loosing the ability to use the telephone and dial 7-digit telephone numbers to contact family members........ this user-friendly telephone to assist him at this most needed time in his life. All he needs to remember is to pick up the receiver, push a picture of the person he wants to talk to (via speed dial), and wait until someone answers at the other end before starting a conversation....."Happy Granny"  

DAILY NEWS UPDATES:Relaxation techniques decrease anxiety in dementia

U.S. urged to compare Alzheimer, ADD, other therapies

NO Joke: Viagra Lessens Aβ, Cognitive Problems in AD Mice

CLICK HERE for News Archives

JOAN’S JULY 4, 2009 WEEKEND BLOG – HAPPY JULY 4TH/MORE INFORMATION ON MY BOOK PROJECT

I need a rest, and so do you. If you are having company for a holiday celebration, I hope you will let your friends and relatives help you as much as possible with either cooking, cleaning, entertaining, or watching your spouse.

Since our little village has no money this year, there will be no concert and no fireworks, but I am okay with watching both on TV. I am also okay without a house full of company.

However, while you are resting, I would like you to think about contributing a story for my book project. I have been on the phone with my editor for hours the past two days, and we have clarified the guidelines. Information on how to formally send the hard copy of the story, documentation, and release forms will be printed next week. Only 20 stories will be selected, so we urge you to send yours via e-mail to joan@thealzheimerspouse.com  before the August 1st deadline.

Guidelines for Story Submission

All stories must be received by August 1, 2009. 

1. Write a story about your experiences as a caregiver for your spouse who has been diagnosed with Alzheimer’s disease or other form of dementia. Stories should be non-fiction, between 800 and 1,000 words. (To determine the number of words, use Word’s “Word Count” feature, found in most versions as an option under the Tools menu.)

Stories should have a positive tone and might expand on one or more of the following topics:

a. What you have learned from life (for example, in your career, in the military, or from a previous life crisis) that has been helpful in getting you through the caregiving journey.

b. How you successfully managed a particular caregiving crisis.

c. What you wish you had known earlier about caregiving that may have helped you cope more effectively.

d. How caregiving has enriched your life or enabled you to help others.

e.Privacy – You may request that your last name not be used. You have the option of total anonymity by using a pseudonym and no personal pictures.

Humor is often a great way to illustrate a point or teach a lesson (not to mention a way to get through the day)! If your story has a humorous element, don’t hesitate to play it up. 

INFORMATION ON HOW TO SUBMIT A HARD COPY, PHOTOGRAPHS, AND A PERMISSION RELEASE FORM WILL BE POSTED NEXT WEEK. Until then, you can submit your story via e-mail to joan@thealzheimerspouse.com 

Have a restful weekend.

©Copyright 2009 Joan Gershman  

JOAN’S BLOG – THUR/FRI,JULY 2/3, 2009 - CALM CHANGES EVERYTHING

When my husband was in the midst of Alzheimer rage, depression, public insults towards me, and outbursts of anger towards others (which he interpreted as correcting their “wrong” behavior) , for the last 10 months, everything else took a back seat.  Dealing with his issues, as well as my own stress, left me with little time or energy to handle website business, household accounts, and important life decisions. I would suspect it is that way for everyone. Alzheimer’s caregiving can be all consuming and overwhelming, made worse by rage towards you from the person for whom you are trying to provide care.

Because I have learned that Alzheimer’s Disease can change in a second, I am saying that FOR NOW, while things are calm, I am going ahead with those important website business and home decisions. You will hear more about the exciting website decisions in the coming weeks.

As for the home situation, I have come to realize that we are in a different stage of our lives than just 3 short years ago, when we moved here to Florida. I expected to live in my dream home for at least another 10 years, never anticipating Alzheimer’s Disease, and its broad implications for Sid’s care, socialization, life style simplification, and finances.

Calmness in an Alzheimer spouse allows the love to shine through once again on both sides. It reminds me that the needs of the man I love are more important than a big house. I have to give him the chance to experience the best quality of life possible, while he is still able. So I am going ahead with plans to find an appropriate Independent Living Facility for us (see blog below). It will afford him the opportunity to thrive with socialization and activities. If I outlive him, I will still be young enough to change my living arrangements again to suit my own needs. And who knows – by then, I may be perfectly content in the Independent Living Facility. There is that “no cooking dinner” provision to which I continually refer .

I hope to accomplish all the background work – lawyers, real estate agents, etc., during the calm before the next Alzheimer storm brews.

Calm is good. I like calm. I can deal better with Alzheimer’s Disease when there is calm.

Feedback to joan@thealzheimerspouse.com
©Copyright 2009 Joan Gershman 
The Alzheimer Spouse LLC 2009 All Rights Reserved

JOAN’S BLOG – WEDNESDAY, JULY 1, 2009 – SUPPORTING EACH OTHER THROUGH THE TRIALS – IN HONOR OF THE LOST CHILDREN

Although this Alzheimer journey is a difficult one, often compared to navigating one’s way through the depths of Hell on earth for both caregiver and patient, nothing can compare to the loss of child at any age.

As most of you are now aware, our member Mary, lost her adult daughter Diane yesterday, in a completely unexpected tragedy. Not long after our member, dking, lost his son to suicide, just months after his wife died. I knew Mary and Diane personally, and many of you came to know her through her prolific writings on the message board and e-mails, which you exchanged with her. We did not know dking as well, as men tend to be less verbal on the boards, but that does not lessen our empathy for him.

My own words are inadequate to offer solace to Mary, dking, and all the parents who have lost children. Instead, I am printing a passage that a friend sent to me. It came from a card she received from a friend in support of her struggle with her husband’s Alzheimer’s Disease. Credit goes to DaySprings E-Cards.

This is my wish to Mary, to dking, to all of you who have lost a loved one, and to all of you who are traveling this Alzheimer’s journey:

"I wish I had a big yellow umbrella that would keep away all the rain in your life. I would hold it over your head and all the drops would splash, splash, splash, and you would never even feel it. But I do not have a big yellow umbrella, so I will walk through the rain with you. "

Please post comments under the existing topic: Mary's Daughter Passed Away

Feedback to joan@thealzheimerspouse.com
©Copyright 2009 Joan Gershman 

The Alzheimer Spouse LLC 2009 All Rights Reserved

JOAN’S BLOG – MON/TUE, JUNE 29/30, 2009 – UNDERSTANDING THE MEANING OF “I MISS MY HUSBAND/WIFE”

In the beginning, before I knew the full scope of what Alzheimer’s Disease would do to my husband, to me, and to our life together, I thought I was the only Alzheimer spouse who threw her arms around her husband, sobbing, “I miss you! I miss you! I want you back!” Those are some of the first words I wrote when I began pouring my feelings onto paper (Welcome Blog – July 07).

It is difficult to pull only one theme from the message board posts, but if I were pressed, I would say that  missing the spouse that we have loved and lived with is top of the list. No one tells us that long before Alzheimer’s Disease drains their physical and cognitive abilities, all of their memories, and returns them to an infant state, that their personalities will change, often to such an extent that we find ourselves living with a stranger. This has been a predominant theme in many of my blogs, but I took notice lately, that so many of you are expressing the same emotion on the message boards.

A drastic personality change is often one of the first signs that something is amiss, but is mistaken for depression, menopause in women, midlife crisis in men, and a host of other reasons. I have written that it is often the cause of divorce.

Many of us have enjoyed a close partnership of a marriage, one of love and mutual respect, one of compromise, humor, and sheer enjoyment of being with one another. What shock and confusion we feel to wake up one day to someone we do not recognize. In my case, it was the lack of rationality that shocked me. We had always been able to discuss each other’s occasional “bad behavior”, understand one another’s point of view, and compromise or change the behavior. But when seemingly overnight, he was no longer able to understand that he had done anything wrong (screaming at a store clerk; yelling at me because I did not wake him up to ask him how he was feeling when he had a stomach bug; throwing a tantrum because I asked him to sweep the kitchen floor while I was out doing errands), I was shattered. I pleaded with him to be reasonable ( In hindsight, that was quite a joke), alternated between speaking calmly, screaming at him, not speaking to him, and sobbing myself to sleep.

Who was this person? I did not like him. I was too ashamed of my feelings to share them with anyone. In sharing them with you, I have found that my situation is common to The Alzheimer Spouse.  “I miss my husband/ I miss my wife.”  I believe that is one of the strongest ties that binds us all who read and write on this site. We miss our spouse. No one but a spouse of an Alzheimer patient could have any understanding of how that is possible when our spouses are still living. We sit by helplessly and watch the person we knew disappear piece by piece.

As the disease progresses, there is no more rational conversation, often no conversation at all. There is no longer an adult with whom to interact. We are caring for a child in an adult’s body. We seem to no longer be spouses – We are caregivers. We miss our spouses.

I am grateful that all of you have found the spousal support and understanding you need on this website. However, there are thousands of spouses who are still suffering and confused, because their doctors did not advise them of what AD could do to their spouse’s personality, nor were they offered any specific spousal issue support. Not much of it exists out in the field.

Yet, I have been told, by those who know, that no matter how much our spouse changes -mentally, physically, and emotionally- and no matter how much we mourn each change, when death comes, we mourn again. We miss them again.

I have also been told by many who have seen this journey to the end, that there is life after Alzheimer’s Disease. As with any death, there is pain, sadness, and grief. But once one has worked their way through those emotions, there remains memories of the good times, and a new life to be lived.

P.S. AFTER I wrote and posted this blog, I noticed a new message board topic started by Sharan - Feeling Alone. She and the others who commented, are expressing the feeling noted in this blog. Please post all comments about this blog under that topic.

Feedback to joan@thealzheimerspouse.com

 ©Copyright 2009 Joan Gershman 
The Alzheimer Spouse LLC 2009 All Rights Reserved

JOAN’S WEEKEND BLOG – JUNE 27, 2009 –  JOAN’S MISHAP AND THE AD REACTION TO IT

After the extensive message board topic on Hilary Clinton’s fall, all of our members’ mishaps  of broken bones , and my pronouncement that my strength training has kept me on my feet – ! I managed to embarrass myself beyond my imagination on Friday, by tripping on a bump in the sidewalk, and ending up on the ground right in front of my bank’s glass door, ensuring that everyone inside would have a bird’s eye view of my humiliation.

My first instinct was to break the fall as best I could, so my face would not smash into the pavement. I managed to accomplish that feat by going down on my hands, one knee, and well, sometimes, shall we say, being well endowed in the upper chest area, comes in handy, and assists in softening a fall. I got up quickly, to spare myself further embarrassment. My knee and hand were scraped, very minor injuries, which was why I was surprised that I was so shaken up. I was experiencing head to toe body trembling, and had difficulty walking. I went into the bank, made my deposit, and left. (Not without the manager demonstrating utmost concern for my well being –and their liability – of course.)

Ten minutes later, I was home. (everything in our little village is no more than 10 minutes away), and faced with another surprise – My husband’s reaction to my hobbling into the house and shaking. This is a man, pre-AD, who has rushed home from work 25 miles away when I was hurting or sick. This is a man, pre-AD, who rubbed ice all over my body when I was attacked by a swarm of bees. This is a man, pre-AD, who wanted to take me to the emergency room for every ache and pain. On Friday, this was a man who looked at me with a frown of concern, asked if I was all right, and then admonished me for not looking where I was going. I cleaned up my hand and knee, applied an anti-biotic ointment, filled a bag with ice, and sat with my leg up, and ice on my knee, while he never once moved from his chair. I realize I was not seriously injured, but it was still odd behavior for my pre-AD husband. Not so odd for this husband, whose brain has been taken over by Alzheimer’s Disease.

It is also another oddity of AD that the only emotion that is outwardly displayed is rage. At least in his case. Since that has calmed down, there is mostly – nothing.. That is certainly better than rage, and I am accepting the trade off, but I wish it were not so.

In any case, he went with his friend to help him with his doggie treat business today (Saturday), and I am going to take the time to rest and then get a much needed hair perm.

MESSAGE BOARD TOPIC: My Embarrassing Fall

Feedback to joan@thealzheimerspouse.com

©Copyright 2009 Joan Gershman 

The Alzheimer Spouse LLC 2009 All Rights Reserved

JOAN’S BLOG – FRIDAY, JUNE 26, 2009 – TURNING THE TABLES ON ME – How Much More Confusing Can Alzheimer’s Disease Get?

We who live with spouses with Alzheimer’s Disease are fully aware of what a challenge it can be. It is a roller coaster of symptoms that bait and switch, hide and re-emerge, shock and surprise at every turn. It is an emotional train wreck.

At various times, I have likened this perplexing journey to an unexpected stop in the Twilight Zone or a fall into Alice’s rabbit hole. Both my husband and I know, and he fully admits, that his short (and now slightly longer) term memory left on a train a long time ago. He knows he asks me the same questions every day because he cannot remember asking them, never mind remembering the answers. If I told him which friend said what, which friend is going where, when we are going somewhere, or who said what in a phone call, I know that I will have to repeat it every day. I do not even bother asking him about a phone conversation he had with someone unless it is within a minute of him hanging up.  I have adjusted to this annoyance to the point that it is not really an annoyance anymore.

But this week’s events raised  to a new level. Over the weekend, I had brought up the subject of perhaps moving into an Independent Living Facility, as detailed in yesterday’s blog (see below). I emphasized his need for socialization, his declining physical stamina as being a hindrance to helping maintain the house, the unlikelihood of us ever recouping all the money we have poured into the house, and that the idea started because of friends who moved into a rented condo, and are thrilled that all maintenance is taken care of for them. That is an awful lot to remember for someone who, in the evening, cannot remember what was said that morning.

Soooooo, in the middle of this week, while we were discussing a possible move, I told him I was concerned about socialization for him. “How many times are you going to tell me that?”, he scolded me . “You told me that already.”  My brilliant reaction was, “HUH????”   How was I supposed to know that he would remember that? He doesn’t remember anything.

Later on that same day, I told him that I originally came up with the moving idea, because our friends are so happy in their condo.  What do you suppose he said to me? “You told me that already 3 times. How many more times are you going to repeat it?”   My brilliant reaction was once again, “HUH????”

And finally, one day this week, I mentioned again about pouring money into the house that neither of us will be able to live here long enough to recoup. Do you want to guess what he said to me?  “How many more times are you going to tell me that?”  This time my reaction was to say, “Well, how am I supposed to know what you remember and what you don’t remember? Most of the time you don’t remember anything.” To my credit, I did not lose my temper or yell. I just stated it as a matter of fact. Thankfully, he did not fly into a rage.  We just ended up in one of those bizarre Alzheimer conversations:

Sid – “How am I supposed to know what I will remember or not remember?”
Joan – “Well, how am I supposed to know what you will remember or not remember?
Sid – “I don’t know, because I don’t remember.”
Joan – “If you don’t know what you’ll remember, I certainly can’t know what you’ll remember.”
Sid – “It’s confusing.”
Joan- “I give up.”

And so it goes in the land of Alzheimer’s Disease.  Have any of you experienced this? Am I living in by myself?

MESSAGE BOARD TOPIC: Turning the Tables on Me- How Confusing can Alzheimer's Get?

Feedback to joan@thealzheimerspouse.com
©Copyright 2009 Joan Gershman 

JOAN’S BLOG – THURSDAY, JUNE 25, 2009 – CONSIDERING A LIFE STYLE CHANGE

Almost 3 years ago, I moved into my dream house in my dream weather location. I live in a gated community on a canal in sunny Florida. It took 36 years, but I finally live in a house with big, airy rooms, and enough of them that there is a place for everything. I have a master bathroom bigger than one of the bedrooms in my old house, and a closet bigger than some bathrooms. I LOVE living in this house. So what is your problem, you may ask.

Besides the expense of living here, including the burden of an upside down mortgage, sky high homeowner’s fees, out of control real estate taxes, and the regular home maintenance that is not taken care of by the Association ( indoor painting, changing smoke detector batteries on 10 ft. ceilings, plumbing emergencies, driveway washing, etc. etc. etc.), it is Sid’s isolation that is the major problem. He is correct when he says that he has nowhere to go and nothing to do. Even if he was still driving, which he is not, there is no socialization here. This is not an “active over 55” development. It is a family development. Yes, there is a pool and gym, and a few retired men who use them, but there are no clubs, activities, or retiree get-togethers.

This is a man who was a salesman for 40 years. He thrives on interacting with people and “gabbing”. It is irrelevant that he doesn’t remember a lot of the conversations. He is honest with people about it, and most are understanding. It is not enough for him to be driven to an Alzheimer buddy’s house once a week and left there for an afternoon. He needs to be able to go to a clubhouse and mingle with other retired guys all day. He needs to talk to other men, swim,  lunch together, and whatever else retired guys do. He is too functional for Day Care. And while he is functional, I want his life to be as fulfilling and brain stimulating as possible.

That is why I am considering a life style change that I NEVER would have thought about at my “young” age of 60. I must emphasize that I am just CONSIDERING it. I don’t know how it is in the rest of the country, but here in Florida, we are over run with “Independent Living” facilities. Every size, shape, and price range. You have your own apartment in a building with activity rooms, a pool, a gym, structured activities, lectures, and programs in which you can choose or not choose to participate. If we lived in one of those facilities, Sid would be surrounded by people, and would not have to go farther than taking the elevator downstairs to meet up with other men.

The benefits for me would be that I could work without worrying that he is alone, isolated, and bored. I would not have to be concerned about not being able to afford to pay someone to put up and take down hurricane shutters multiple times during hurricane season. (at $200 per storm). I would be free of homeowner’s fees, homeowner’s taxes, and house maintenance costs. I could pick up the phone and call the maintenance man when the toilet broke, there was an electrical problem, the refrigerator stopped working. And I wouldn’t have to COOK.

Yes, of course I realize that he will continue to decline and need more supervision as time goes on, in which case, an Assisted Living Facility would be the next step.

So my dilemma is – do I give up my dream home, which is becoming more and more unaffordable and difficult to maintain, to move into a much smaller apartment, in order to give Sid a better quality of life while he is able to be aware and enjoy it?

I honestly do not know what I am going to do. My first step is to visit a variety of Independent Living Facilities and see if there is one that is affordable and large enough for our needs.  I have two main priorities at this point in our Alzheimer journey. The first is to see that Sid’s physical, emotional, and social needs are met, and the second is to make sure I am free to work to provide for us. Oh, and there is that “no cooking” enticement.

What do you think? Have any of you chosen this lifestyle? Was it a good choice?

Message Board Topic: Joan’ Blog – A lifestyle change.

Feedback to joan@thealzheimerspouse.com

©Copyright 2009 Joan Gershman 

JOAN’S BLOG – TUES/WED, JUNE 23/24, 2009 – JOIN ME IN MY BOOK PROJECT

I am writing a book that is scheduled to be out sometime between Christmas and Valentine's Day,, and I would like you to be a part of it. This book will tell the stories of us, the caregivers in the trenches, and how our life’s experiences have helped us through our journey. This is such an exciting project for me, that even I, who am never at a loss for words, am having difficulty expressing my thoughts and emotions. A life long dream realized; a way to educate and ease the spousal care giving of those who come after me are just two of the thoughts racing around in my head right now.

For those of you who would like a chance to be part of this project - I am asking for positive stories (via email to joan@thealzheimerspouse.com) of about 1000 words, which explain what you have learned from life that has been helpful on the care giving journey, how you managed a care giving crisis, perhaps based on the experiences learned from your life before care giving, what you wish you had known, and how care giving may have enriched your life or enabled you to help others.You may balk at that last part – “how care giving may have enriched your life”, but think about what you have gained from the negative experience of having a spouse with Alzheimer’s Disease that may help you in a positive way later in life.

My editor and I will choose only 20 stories from those submitted, to be included in the book. If yours is chosen, we will ask for non-returnable pictures and a signed release, allowing us to use your stories and pictures.

If you are not interested in participating, maybe you know someone who is, and will pass along this information.

Guidelines for Stories are as follows:

1. Explain what you have learned from life (ex: career, previous life crises, military service) that has been helpful in getting you through the care giving journey.

2.How you managed one care giving crisis

3.What you wish you had known about care giving that may have helped you cope

4.How care giving may have enriched your life or enabled you to help others

5.Not limited to Alzheimer's Disease - may be any type of dementia. Other terminal illnesses may be considered.

6. No more than 1000 words – If you are using Microsoft Word, click on “tools” at the top of the page to see word count feature.

7. Privacy – You may request that your last name not be used. You have the option of total anonymity by using a pseudonym and no personal pictures.

8. If pictures are used, you must have copyright or ownership.

9. Submission deadline – August 15, 2009 

MESSAGE BOARD - Joan's Blog - Book Project

Feedback to joan@thealzheimerspouse.com

©Copyright 2009 Joan Gershman 

JOAN’S MONDAY BLOG – JUNE 22, 2009 – OUR 39TH ANNIVERSARY

Around the first year or two I was married, my cousins had a 40th anniversary party for my aunt and uncle. I was 21 years old. Maybe 22 at the time of the party. My aunt and uncle looked old, crotchety, and wrinkled  to young, naïve me. I thought – “They have been married FOREVER, and don’t even like each other.” I never remembered them relating to one another in any manner but fighting and arguing. I thought ahead to what Sid and I would be like in 39 or 40 years, and in my mind, I pictured a relatively young looking, thin, sexy couple, still staring adoringly into each other’s eyes, with three handsome, accomplished, brilliant children by our side. I saw us as healthy, wealthy, and happy. I SAID I was young and naïve, didn’t I?

Yesterday we celebrated our 39th wedding anniversary. I am 60. He is 66. In my mirror, we do not look old or wrinkled (Fat smoothes out wrinkles!). It was a day of reflection and love. In reflecting on our years together, we realize that life does not always work out the way we plan it. We had one child, not three, but it was our choice, and we adore him. We have survived financial downs, health crises, serious teenage trouble, dysfunctional relatives, job losses, family deaths. But on the flip side, we have enjoyed financial success at one time or another, romping dogs, a houseful of our son’s friends, career triumphs, good friends, great travel adventures, and our own passionate love affair with each other.

I never expected for us to die healthy (an oxymoron?). I knew that as we aged, heart attacks, diabetes, cancer, and a host of other diseases could intrude on our lives. I was even aware of Alzheimer’s Disease, but I never expected that a disease could rip through our lives like a tornado, leaving such relationship devastation in its wake. That could not happen to ‘US’. As my blogs tell the story, I was totally blindsided by this wreckage of a disease, and left in emotional ruins from the changes it brought to my husband’s personality, thinking, and ability to relate to me.

But even with this disease imposing its will on our lives, we have adjusted to some degree. Alzheimer’s Disease has broken our hearts, torn apart our lives, destroyed our finances, altered our future forever, but the medications have calmed Sid’s rages to the point that we are once again able to feel the deep love, protectiveness, support, and caring we have had for one another since the first date when lightening struck, and we knew that “love at first sight” was not a myth.

I am no longer young and naïve. I know how brutal life can be. My husband’s disease is only going to get worse. I know that. But I also know that we have to enjoy whatever good time we have together, no matter how intermittently it occurs. This weekend was good. We were reminded why we have been together for 39 years. We both appreciated that.

Feedback to joan@thealzheimerspouse.com

©Copyright 2009 Joan Gershman 

RECENT BLOGS:

In Sickness and Health - What does that really mean for spousal caregivers? - June 8/9, 2009

Take the Stress Questionaire - How is your stress level? - June 9/10, 2009

Declines - Just when you think things have settled down, another decline - June 18/19, 2009

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.

The Alzheimer Spouse LLC 2009 All Rights Reserved