TO NEW READERS.
I invite you to read and relate:Welcome Blog-The truth no one talks about - 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. Meeting Our Emotional Needs-What to do when your spouse is no longer your partner, cheerleader, lover, and friend? Resentment -Having to do it all; being married to a child instead of a partner; loneliness. Information for the Newly Diagnosed - great information to set you in the right direction. CLICK HERE for entire list of Blog topics. Blogs are kept on the front page for a period of 2-4 weeks, and are then placed in the "Previous Blog" section on the left side of the website. Please be sure to check all of the sections on the left side of the website for valuable information.

Daily News Update- Elan-Wyeth Alzheimer Drug Data Unclear

Margaret Thatcher Has Dementia - Daughter criticized for making it public

MIT Zeroes in on Alzheimer's Structures.

SCROLL DOWN FOR THE WEDNESDAY/THURSDAY BLOG - THE IMPORTANCE OF EARLY STAGE EDUCATION FOR NEW CAREGIVERS

CAREGIVER CRUISE UPDATE – CLICK HERE FOR COMPLETE INFORMATION – DEPOSITS FOR BOTH THE FEBRUARY CARIBBEAN CRUISE AND THE SEPTEMBER ALASKAN CRUISE, ARE DUE ON SEPTEMBER 21ST.  DR. TEENA CAHILL, AUTHOR OF THE CAHILL FACTOR, TURNING ADVERSITY INTO ADVANTAGE, AND HOST OF THE INTERNET RADIO SHOW, NURTURING THE NURTURER WILL BE GUEST SPEAKER ON THE CRUISE.   

SNEAK PREVIEW OF THE SEPT.09 ALASKA CAREGIVER CRUISE - GUEST SPEAKER - LISA GWYTHER, co-author of The Alzheimer's Action Plan , an MSW social worker from Duke University. And ME - I think I just got talked into doing a presentation on this cruise!

STAY TUNED FOR FRIDAY'S BLOG - DRIVING LESSONS

JOAN’S BLOG – WEDNESDAY/THURSDAY, AUGUST 27/28, 2008 – THE IMPORTANCE OF OF EARLY STAGE EDUCATION FOR NEW SPOUSAL CAREGIVERS
Note: This information is applicable to all caregivers, but since this website focuses on spousal issues, I am staying with that emphasis.
The most prominent source of frustration I hear from new spousal caregivers is the confusion and despair in how their spouse’s personality change has affected their ability to communicate, compromise, and solve problems together as a couple. The cries of “What is WRONG with him/her? Why won’t they listen to REASON? Why can’t we discuss a problem in a calm, reasonable manner? Why are they screaming at me, slamming doors, pouting like a baby?” are almost universal. That frustration and confusion is leading to monumental stress for the caregiver spouse, who is completely clueless as to what has happened to their once loving, solid relationship. I have heard many stories of objects being thrown by both spouses who never would have reached that level of anger before. If they have not yet made the connection that it may be a problem that requires a medical diagnosis, these early stage difficulties often lead to divorce, as discussed in a previous blog. After all, who would suspect Alzheimer’s Disease, which is a MEMORY DISORDER, right? Who would ever connect Alzheimer’s Disease with all this screaming and irrational behavior, even if there were memory problems?

But let us assume that medical intervention has occurred and a diagnosis of Alzheimer’s Disease has been reached. What now? Most often, the patient is sent home with prescriptions for Aricept and Namenda, and the spousal caregiver feels like they have been hit by a fast moving truck,  left lying on the road to fend for themselves. In my case, the neurologist handed me a copy of The 36-Hour Day, and told me to contact the Alzheimer’s Association. I stood there, book in hand, stunned.

As you know, I did call the Alzheimer’s Association; we did join a support group that has been a lifeline for both of us. HOWEVER, it has been a long, slow, torturous journey to learn that the early behaviors are “normal” for AD; how to handle them; how to change my perception of our relationship; how to accept the change in the relationship; and how to react to my husband’s altered personality.

The original model of my particular support group (long since abandoned by the time we joined) is one that I think should be followed in every county in every state all over this and other countries around the world for the newly diagnosed. It was designed as a 6 week Introductory Seminar on Early Stage Alzheimer’s Disease. Each week a different topic was covered. It was educational and informative based, rather than support based. (Transition to an actual “support” group occurred at the completion of the seminar.) How different would our early days of this disease have been, if, while we were crying in confusion at the personality and behavior changes in our spouses, we were given specific answers to the questions posed above – “What is WRONG with him/her? Why is he/she behaving like an irrational child?”

I do not have the syllabus for the original Introductory Seminar, but an example should be:

1.Behavior and personality changes in Early Stage Alzheimer’s Disease – that they are to be expected, and how to respond to them
2. Relationship changes – what to expect and how to handle them
2. Comprehension difficulties – how to compensate for them
3. Communication difficulties – how to make communication easier
I am a very organized person. I like information presented in a straightforward, sequential, structured manner. If this had been given to me in the beginning, I honestly believe our road would not have been as bumpy. (Bumpy? Who am I kidding –more like potholes and sinkholes than bumps.)

The help and support I have been given through my support group has been invaluable, BUT it came in bits and pieces, starts and stops, intermingled with late stage caregiver tips. How much better off both of us would have been if we KNEW what was happening to my husband, to our relationship, and given information right at the beginning as to how to handle it. Sid has told me that while he was “flying off the handle”  and being irrational in the very beginning, before the diagnosis, he recognized that he could not control it, and was as confused as I was as to what was happening. Even after the diagnosis, we did not realize that AD had such an effect on behavior. Knowing Alzheimer’s Disease was doing it to him would not have changed his behavior, but it certainly would have helped me understand and learn more about how to cope with it.

I am sure many of you are thinking – “My spouse would never attend such a seminar. They are in denial about their problem. They think I am the one with the problem.” I fully understand that, but would YOU attend such a seminar? I would hope so. I will never stop believing that “Knowledge is Power.” The more we learn about what we are forced to deal with, the better we will be able to handle the burden placed upon us.

I am in the process of writing the workshops for my public presentations, and Early Stage Behavior Changes will be one of the topics.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – TUESDAY, AUGUST 26, 2008 – YOUR HELP IS NEEDED

Readers who have been following my Blogs this summer know that I have been through the fires of Hell with my husband’s anger, rage, and verbal abuse, while the Alzheimer Devil took full possession of his brain. We are all saddened, stressed, and exhausted, from this Alzheimer’s journey on which we find ourselves, and unfortunately, during these times, we forget two important parts of our lives – humor and the love that bound us together in the first place. Once the Celexa started working, which Sid insists has nothing to do with his improved mood, I heard laughter in this house again. How sad that it had been absent for so long, that I actually noticed its renewed presence.

Sometimes, living with an Alzheimer spouse does produce amusing incidents, if we allow the humor to peak through the sorrow. If you read the section on the left labeled, “Humor- Share a Humorous Story With Us”, you will laugh instead of cry, at some of the AD related events that have caused giggles instead of tears. We need more of those stories. Please post your Alzheimer related amusing episodes under the Message Board topic: Humor and Love

Sometimes, living with an Alzheimer spouse’s altered personality, temper outbursts, and regressing abilities, causes us to forget the person who captured our hearts so many years before. If you read the section on the left labeled, “Our Reader’s Love Stories”, you will be able to share in the special memories of love, not completely lost, just overshadowed, by Alzheimer’s Disease. We need more of those stories. Please e-mail me your love stories, so I can post them in that extraordinary section for all to read.

While I am being given this gift of a reprieve from the turmoil, I hope to be able to update and add to the informative sections of the website. If anyone has some spare time -- now there is some humor for you – I could use a volunteer to go to the Message Board topic – Things I wish someone had told me, list just the tips without the surrounding narrative, and e-mail it to me. That will help me organize the “caregiver tips” section that I have been promising for months. You will have my gratitude forever. (Already got a volunteer - Thank you, Janet!)

Notice: This afternoon, I will be attending a lecture on Medicaid. I promise to bring you any information that may be relevant and helpful.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG  - MONDAY, AUGUST 25, 2008 – IT’S DIFFERENT WHEN IT’S A SPOUSE – PART II

The motto of this website is “Our Issues are Unique”. That was the main reason I started this site; I knew it; you knew it. You flocked here in droves to discuss the ways in which Alzheimer’s Disease affects marriage that no one but a spouse could possibly understand. My Blogs and message boards are filled with stories of loneliness, emotional pain, hurt, fear, resentment, loss of companionship, and guilt that all spouses of Alzheimer patients face. And beautiful, heartwarming memories of love. When Alzheimer’s Disease has stolen every piece of the personality and essence of the spouse we loved, we have the memories of a deep love that once was; we hold onto it, cherish it, and are grateful for having had it.

Last March, I wrote a blog entitled, “It’s Different When it’s a Spouse”, which I will reprint today, but I have noticed some slow, subtle changes in the public’s perception since then. Maybe it is because I cannot keep my mouth shut; I am preparing to do my third radio interview about spousal issues; Sid and I have discussed it on two conference panels; I talk about it at every conference I attend; I have brought our situation, in person, to the legislators in Washington DC, and your message board stories are now reaching hundreds of thousands of people in at least 3 countries of which I am aware.

People are beginning to understand that spousal issues ARE different, and we do need specialized support and counseling to help us through this journey. Just recently, I was speaking about the emotional stress of living with an angry, verbally abusive, vindictive Alzheimer’s Disease possessed spouse, when a woman who was caring for her AD mother, came up to me and said, “I never realized what spouses go through. Not that there isn’t emotional pain in caring for a parent; of course there is. It is just that the emotional pain is so very DIFFERENT when caring for a spouse.”  One of my oldest friends lost her mother to Alzheimer’s Disease. She reads this website faithfully every day, and repeatedly says to me, “What you and other spouses go through is COMPLETELY DIFFERENT than what I went through with my mother.” A very young reporter, who is doing a documentary on care giving, told me last week that she had interviewed a woman caring for her mother-in-law, and after interviewing me, she could see that the emotional issues were completely DIFFERENT.

And that is the point of this website. Alzheimer’s Disease is devastating to every patient and caregiver. But when it is a spouse, the “issues are unique”.  It is my fervent desire that doctors, counselors, and social workers will not only recognize this difference, but start support groups that address the specific emotional issues – loss of companionship; loneliness; the difficulty of living with the stranger Alzheimer’s Disease has put in our spouses’ place; and offer validation and support, even if there are no solutions.

For our many new members, who have not read it, please see below for March’s Blog on this same subject:

IT’S DIFFERENT WHEN IT’S A SPOUSE – From March, 2008 - Reprinted on August 25, 2008

Do not misunderstand. I acknowledge the pain every family caregiver feels when watching a loved one slip away to Alzheimer’s Disease.  But I created this website because it’s different when it’s a spouse. That difference is on the face and in the tears of every spouse I have talked with this week. The predominant emotion is grief – that the husband or wife with whom we have shared our life, pillow talk in the darkness at the end of a day; excitement at the birth of our children;  passion; the deepest of emotional connections; and all of the triumphs and tragedies of a lifetime union, has disappeared.  They haven’t died in the physical sense; the essence of their being, the person we loved, has died within them, leaving a confused, cognitively impaired, childlike figure in their place. And the worst of it is that it hasn’t happened all at once. The agony of Alzheimer’s Disease is that they die a little at a time; each year of this dreadful nightmare takes another piece of them, so we are forced to grieve and mourn over and over again.

Nothing that I have ever seen or experienced can compare to the pain of losing a spouse in this manner. When we look at our husband or wife, we are awash in loneliness and longing, and we think  “Where is my husband? Where is my wife? Where did you go? Where are you? I miss you. I want you here with me.”
To those of you who continue to suffer in silence and isolation, I tell you that you are not alone. We share this journey with you, understand, and are here to give you support. All you have to do is reach out and accept it, either in person at one of those support groups we discussed this week, or here on this website. To those of you who have learned the value of sharing difficult emotions with one another, I thank you for being there for all of us when we have needed you.

Although there was a message board topic related to this issue, I have started a new one dated 8/25/08 – Please post comments under – Joan’s Blog – 8/25/08 – Spousal Issues are Unique.

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JOAN’S WEEKEND BLOG – AUGUST 23/24, 2008 – TRANQUILITY FOR THE MOMENT

Friday was a very strange day. My husband was mellow; there was no rage in his eyes; his face was calm. He did not stomp, pout, whine, and insult me during our two errands during which, I of course, drove. I thought – “Well, this is weird. Welcome, but weird.”  Since I was still edgy from all of his anger and verbal abuse of the past few weeks, I have to admit that I was a bit snippy. ( Er, well, a lot snippy?) He did not respond in kind. He wasn’t what I would call serene, but he certainly was composed and cool.

I have read that anti-depressants take up to two weeks to work. I cannot believe that two days could yield such a transformation. When I questioned him about it, he said that the medication had nothing to do with it. He was trying hard not to upset me. That may be the case, but he has attempted that before with varying degrees of success, and I have never seen him so tranquil since full blown AD began 4 years ago.

Whatever the reason, the calm was contagious. The more pleasant his behavior, the calmer and more pleasant I became. Oh, to have it last. My greatest wish. Hmmm, when my doctor’s office dries out from the flooding, I surely will go and request some of those little pills for myself. (I really had planned on going this week, but Fay intervened and flooded the entire area where the doctor’s office is located.)

We may go to the movies and dinner with a group of friends Saturday afternoon. We may choose to stay home and do nothing, considering how worn out I am. Whatever we choose, I do hope this pleasantness holds.

Be sure to stay tuned for information on new resources, the TV documentary, my radio interview with Dr. Teena Cahill, my workshop presentations, and so much more.

Feedback to joan@thealzheimerspouse.com

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JOAN’S BLOG – FRIDAY, AUGUST 22, 2008- THE EYES HAVE IT

First of all, I must thank all of you for once again coming through for me, and giving me comfort and support when I needed it most. Tuesday and Wednesday were nightmarish days – your understanding and validation helped me cope.

I have often read and heard of caregivers saying that Alzheimer’s Disease is in the eyes. They can see the blankness; the emptiness; the nothingness, in the eyes of their afflicted loved one. I have even heard from those who say it can be seen in the eyes long before the “emptiness”.  Sometimes it is a “fog”; sometimes a “puzzlement”. Whatever it is, everyone says it is in the eyes.

Except for obvious confusion and the absolute anger and hate I was seeing in Sid’s eyes, I never truly “saw” what others were speaking of – until Wednesday night.  He had been talking and crying for at least 2 hours about the usual – how he could not get past his hurt and anger over the driving, but this time, he was actually making sense, explaining quite coherently how infuriated it made him to have to get into the passenger side of the car; how the anger kept building and he could not control it. How he knew he was hurting me with his insults, taunting, and tantrums, and how it hurt him to be inflicting so much pain upon me, but he was unable to stop himself. I much preferred that honest assessment of his feelings to the cold, sneering, back stabbing taunts and outbursts.

Then he sat down with his laptop and read my blog from that day – When Hate Turns into Anger (scroll down below for the blog). He is always better able to process anything visual, including writing, than what he hears, and apparently reading that blog opened a window in his brain. That is when it happened. I looked up at him and into his eyes, and saw my husband again. I saw the man I fell in love with on that cold November night in 1969. He got up, sat next to me on the couch, put his arms around me, and told me how much he loved me, that he would try the medication, try volunteer work, do anything to help himself because he could not bear the way he was hurting me. In that moment, I knew what it must feel like if a spouse could return from the dead. I knew it would not last. I did not care. I once again felt love and comfort in the arms of the man I adore, and it was enough for me to have him for one evening.

It was in his eyes that I saw my real husband, and it was in those eyes that I realized I had been seeing Alzheimer’s Disease this past month. The difference is startling. It is frightening. It helped me understand just how powerful this Alzheimer possession is. And everyone is correct – it is in the eyes.

Please post comments under the Message Board Topic: It's in the Eyes.

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JOAN’S BLOG – WEDNESDAY/THURSDAY, AUGUST 20/21, 2008 – WHEN LOVE TURNS INTO HATE

This website grew out of the excruciatingly painful emotions I was experiencing as Alzheimer’s Disease crept into my life and began altering my rock solid loving marriage. I could not sleep, was up at night writing about my feelings of confusion, anger, and hurt at the changes in my husband’s personality and behavior brought on by Alzheimer’s Disease. I turned those writings into the Blogs that I continue to write almost every day. I think, part of the reason for the success of this website, is that I have been brutally honest about Alzheimer’s Disease’s destruction of the afflicted, the spousal caregiver, and the marriage.  Hundreds of you have responded that you share my thoughts and emotions.

I foolishly thought that I had finally worked through most of the pain, and come to an understanding and acceptance (of sorts) that my husband and our relationship would never be as it was. I was hoping that we could live somewhat peacefully, as I adjusted to Alzheimer’s Disease by ducking, dodging, ignoring behaviors, insults, and temper outbursts, and responding calmly without arguing, thus avoiding conflict.

That is what I thought until his hurt and rage over the driving loss took hold. Since my face has not dried in a week from the tears shed every day,  I decided to re-read the Blog this morning that tells our love story, to remind me of how strong our love is. One paragraph stood out above all the others –  “What AD has not changed is his love and concern for me. Not a day goes by that he does not take me in his arms and tell me how much he loves and appreciates me – how he hurts to see me have to bear the burden of so much.”

This is no longer the case. Now when I look into his eyes, I see ice cold hatred. He expresses it every day with sarcasm, insults, and indifference. If you are going to tell me that it is the Alzheimer’s Disease talking, I can only respond by saying – I understand that his inability to comprehend WHY he should not be driving is the Alzheimer’s Disease. I accept that. What I cannot accept or bear is his feeling that I have wounded him to the core as surely as if I had an affair; that he has turned that hurt into rage that he is expressing through palpable vibrations of hatred towards me. I see it in his face, in his body language; I hear it in his voice; I feel it in every interaction we have.  It is tearing to shreds what little bit of heart I have left, and he is enjoying every minute of it. He smirks, smiles, and shrugs his shoulders at my tears. It is payback – he is out to hurt me as much as he feels I have hurt him. He has succeeded. Sorry, but this is one time I cannot take everyone’s advice, turn my back, attribute it to Alzheimer’s Disease, and not feel the pain.

The message boards are filled with laments of lost futures, hopes, and dreams due to Alzheimer’s Disease. The one hope Alzheimer’s Disease left me with was that before my husband forgot who I was, his last memories of me would be of love. Alzheimer’s Disease has stolen even that pathetic hope from me. If there is a Hell, it is on earth, and its name is Alzheimer’s Disease.

Please post comments under Message Board Topic: When Love Turns to Hate

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JOAN’S BLOG – TUESDAY, AUGUST 19, 2008 – THINKING ABOUT THE JOURNEY’S END

I keep what little sanity I have left, by living one day at a time, and not thinking ahead to the cruel devastation that awaits us at the end. This is extremely difficult for me to write about, but I feel the need to address it, because many of our members have come to the end of the journey, and many others are facing its imminence. I especially want to thank Frand who has the courage to share her painful end-of-life experiences with us on the Message Boards.  We need her knowledge, and she needs our support.

Yes, Alzheimer’s Disease has stolen the man I fell in love with at first sight, and stayed in love with for more than three decades. Alzheimer’s Disease has made our lives a living Hell, one which neither of us ever imagined could have existed.  But reading those messages of death and loneliness, has forced me to reach deep into my soul and think about what is important in my life. It is the husband who is still walking, talking, and understanding most of what is going on around him. While he is able, I desperately would like us to try to enjoy some parts of our life together. His temper is unpredictable; his anger and depression over the loss of driving is unabated; his short term memory is non-existent; his comprehension is spotty; but if Alzheimer’s Disease would allow him a respite to come out of the hole of depression, we would be able to enjoy a movie together; dinner with friends; a day at the pool; a short cruise vacation.

The end of life messages have made me yearn desperately for quality time with my husband. The Alzheimer Devil is fighting against me, but I am fighting back. The end is a long way from us, and I want us to be able to enjoy as much of the time we have as is possible.

Please continue to post your comments on the existing Message Board topic: What I wish I had known about the dying process...

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MOST RECENT BLOGS:

Becoming the Lone Decision Maker - Sad and lonely - August 11, 2008

Humor in the Midst of Pain - A funny experience from the drug trial session - August 13, 2008

The Energizer Bunny Caregiver Keeps on Going..................Straight to the hospital - August 14, 2008

Not Cut Out to Be a Caregiver - Doubts faced by all spouses - August 18, 2008

FOR MORE BLOGS, SCROLL UP, AND CLICK ON "PREVIOUS BLOGS" ON LEFT SIDE OF WEBSITE.