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JOAN'S NOTICE: FRIDAY, JANUARY 27, 2012 -It has been a difficult week - more than usual. For complete details, click here for my message board post. A shut off of electricity forced us out of our Villa on Wednesday, due to another mix up between my Villa company and Florida Power and Light. You can imagine what it has been like living in a hotel room with a confused, physically disabled Alzheimer husband, who was abruptly moved from his familiar environment. Two days that seemed like a week. I post a new blog as soon as I am settled and de-stressed.

JOAN’S BLOG – THUR/FRI., JANUARY 19/20, 2012 – WAY TOO MUCH TIME ON THEIR HANDS

There have been many discussions on the message boards concerning Alzheimer’s Disease and obsessive behavior. Many of your spouses’ have obsessed over watches, wallets, food, guns, cigarettes, and alcohol. Up until my recent experience with this behavior, I have agreed that it is just another weird symptom of Alzheimer’s Disease.

However, considering what has been going on in my house lately, my purely unscientific opinion is that my AD husband’s obsessions are caused by him having “way too much time on his hands”. This excess of unstructured time allows him to obsess on every one of his body aches, pains, and natural functions. This is not to say he does not have pain from all of his physical ailments – diabetes, arthritis, neuropathy, the list goes on.  He does, but the recently prescribed narcotic patch and a variety of pain pills ease it. That is not to say all of those narcotics are not causing a slowdown in his inner plumbing. They are. HOWEVER, when we are home together, and he has nothing to do but watch TV, the obsessiveness related to these ailments is unrelenting. With every movement, he whines, yells, and complains. Every bathroom visit ends in an irritable, crabby, whine and complaint. All day long. Obsessive.

Making the situation worse is that he does not realize nor remember that he is doing it. Telling him to “knock it off already” is as much a waste of breath as arguing with him. With Alzheimer’s Disease, the reasoning, memory, and awareness buttons are permanently broken.  

That leaves the harried caregiver (in this case – ME) little options. So far, I have tried sympathy and understanding, which is decreasing as the obsessiveness increases; the “knock it off” approach; gritting my teeth; pulling my hair out; and losing my temper. Ignoring him does not work. He obsessively complains that I am not listening to him. Nothing works……………except keeping him busy.

Yes, my fellow spousal caregivers…….when he is at the Alzheimer’s Activity Program, both he and the staff have told me that he does not complain about his pain, nor does he obsess about his bathroom visits. He told me himself that they keep him too busy for him to think about it.

As soon as he gets into the car when I pick him up from the program, the whining and complaining begin again. He does not stop all night long, sitting in his lounger, whining that he cannot get up to get a drink; that he cannot get up to come to the dinner table; that he cannot reach the remote on the end table. I fully understand that his Alzheimer’s Disease has caused him to regress to childlike behavior, and that all of this complaining is to elicit sympathy and attention from “Mommy” (Me).

Besides making sure his pain and bathroom issues are addressed with the proper medication and pain clinic visits, my only option to curb the obsessiveness is to make sure he does not have “too much time on his hands”. Instead of sitting in front of the TV for 14 hours a day, his schedule is now full. He attends his Alzheimer Buddies dominoes game on Monday; stretch class and PT on Tuesday; Activities Center on Wednesday; PT on Thursday; Activities Center on Friday; social visits with couples friends on Saturday; and rest on Sunday.

He has almost no memory of what he does at the Activities Center.  He forgets what he did in PT. He forgets who the PT is. That is to be expected with Alzheimer’s Disease. The point is that he enjoys his exercises and activities while he is doing them, and for that amount of time, he is not engaged in obsessive behavior.

I cannot say that a full schedule will solve your spouses’ obsessive behavior. It is certainly worth a try. I can only say that is what works for us.

MESSAGE BOARD: Joan's Blog (1/19/12) - Way Too Much Time on Their Hands.

Feedback to joan@thealzheimerspouse.com
©Copyright 2012 Joan Gershman 
The Alzheimer Spouse LLC
2012 All 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 – TUES/WED., JANUARY 17/18, 2012 – LOOKING FORWARD TO………….

One year ago to the week, I received an e-mail chain asking me to describe my life in one word. It prompted me to write a blog titled “A Life in Limbo” , which described the life I was (and still am) living as an Alzheimer Spouse.

This week, I received another of those e-mail chains that asked me to list 3 places I have lived; 3 places I have visited, etc. Toward the bottom of the list was the question – 3 things I look forward to. Among the answers from the friends to whom I had sent the chain were – white water rafting, Bermuda cruise, Key West trip, retiring so I can spend my time with my grandbabies. My fingers froze over the keyboard. What could I answer?

Could I answer that I look forward to the end of my husband’s Alzheimer’s Disease? That would be, as we have previously discussed, looking forward to his death, for that is how Alzheimer’s Disease ends 100% of the time. No, that did not seem a proper answer.

What can I, as an Alzheimer spouse, look forward to? More of what I do now. Monitoring and dispensing pain, diabetes, Alzheimer’s, high blood pressure, and mood medications. Changing adult diapers. Changing soiled sheets. Driving to doctor and medical test appointments. Explaining information in the simplest possible terms, answering repetitive questions, and directing activities.

It made me realize that my future holds 24 hour nursing care to a 200+lb. adult with the reasoning and cognition of a child. We are no longer able to travel together. Traveling for us simply means taking all of my work into a strange environment, without the routine and support that we have at home. Even if we had grandchildren or the possibility of future grandchildren, which we do not, I would never see them. My son lives 3000 miles away.

Well, I thought, as I struggled to answer the question, this is a bit depressing. I am supposed to be looking for the positive in my life, not dwelling on the negative. I have no idea how long this Alzheimer journey will last, so I certainly cannot spend all of that time concentrating on everything I WISH I could do with my husband, but cannot.

What I finally decided to do is what we, as Alzheimer Spouses, have learned to do – concentrate on the short term. While traveling and excitement are certainly not in my future, I will find pleasure in looking forward to short term pleasures. I look forward to being able to knit and read at the end of long day of caregiving. Those activities provide me with enjoyment and relaxation. So my three answers to what I look forward to were: Reading, knitting, and resting.

In the quiet recesses of my mind, I do occasionally look forward to “after”, and allow myself to think, just a bit, about what I will enjoy, if I am still alive, but for the most part, it is healthier for us Alzheimer Spouses to look forward only as far as the end of the day, and find pleasure in simple things.

MESSAGE BOARD: Joan's Blog - Looking forward to.........

Feedback to joan@thealzheimerspouse.com
©Copyright 2012 Joan Gershman 
The Alzheimer Spouse LLC
2012 All 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 WEEKEND BLOG – JANUARY 14/15, 2011 – DOCUMENTARY ON EARLY-ONSET ALZHEIMER’S DISEASE

This was brought to my attention by an account executive with the media group promoting this film. Since so many of our members are dealing with Early (Young) Onset Alzheimer’s Disease, I felt it worthwhile (no compensation involved)  to print the entire press release. I am setting my DVR to record this program, with the hope that we will all find it informative and helpful. 

"SEQUEL TO EMMY AWARD-WINNING DOCUMENTARY ON EARLY-ONSET ALZHEIMER’S PREMIERES JANUARY 20 ON RLTV

To Not Fade Away Continues The Story Of Marie Vitale And Her Family

Features Prominent Americans Who Know Firsthand The Impact of Alzheimer’s On Individuals And Families:
Pat Summitt, Glen Campbell And Maria Shriver

BALTIMORE, MD – January 11, 2012 – Imagine knowing your memories will soon be washed away forever as a result of Alzheimer’s.  Forty-five year-old Marie Vitale was coming to terms with this reality when RLTV first began interviewing her in 2006. Forty years younger than the average Alzheimer’s patient, Marie was facing Early-onset Alzheimer’s. Now, for the first time, a documentary chronicles a patient’s heartbreaking and inspiring five-year battle with the disease. 

RLTV, the only cable network that provides information and entertainment to help Redefine Life after 50, announced today that it will premiere To Not Fade Away on Friday, January 20 at 10 pm. At the heart of To Not Fade Away are Marie Vitale and her courageous, positive outlook, while her family struggles to come to terms with the physical and emotional challenges presented by Marie’s worsening condition. Narrated by former NBC correspondent Lea Thompson, the documentary illustrates how drastically life-changing this disease is for entire families. 

Woven into the documentary are the inspiring stories and reflections of well-known Americans who know the impact of Alzheimer’s on individuals and families. They include two legends who recently announced their Alzheimer’s diagnosis: University of Tennessee Lady Volunteers head coach Pat Summitt and country music icon Glen Campbell. Summitt, the winningest coach in NCAA basketball history, is facing her diagnosis with her signature ‘tough as nails’ persona intact, and country music singer Glen Campbell and his wife discuss the challenges of the disease in the midst of his farewell tour. Former First Lady of California Maria Shriver and West Virginia Senator Jay Rockefeller recollect how the disease ravaged one of their parents, and discuss their own determination to bring greater awareness of the disease and find a cure. 

To Not Fade Away also explores the hopeful advances being made in early detection and the search for a cure at Blanchette Rockefeller Neurosciences Institute, Johns Hopkins University, University of Pittsburgh Medical Center, and National Institutes of Health.  

“Statistics suggest that Alzheimer’s disease has the potential to be a significant threat to many of us. Directly or indirectly there is a good chance that it will impact our lives,” said Elliot Jacobson, Senior VP Programming and Produciton, RLTV. “To Not Fade Away provides a glimpse into one family’s courageous battle, and sheds light on the progress towards a cure. With this documentary, RLTV continues its commitment to provide critical and compelling programming to our growing 50+ audience.”

One in eight older Americans has Alzheimer’s disease, according to the Alzheimer’s Association, and one person in the United States is diagnosed approximately every 69 seconds. Early-onset accounts for 5% of all Alzheimer’s sufferers, and it is most common for those 50 and above. By 2030, one in 45 people may be living with Alzheimer’s disease."

From the RLTV website: “Not Fade Away” chronicles the issues facing patients, families and researchers, sharing fresh insight into the world of those afflicted with Alzheimer’s. Never before has a documentary sought to unveil “what it feels like” to have the disease.

To view a clip from the film, click here:

http://podcast.rl.tv/54816small.html

 Feedback to joan@thealzheimerspouse.com
©Copyright 2012 Joan Gershman 
The Alzheimer Spouse LLC
2012 All 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, JANUARY 13, 2012 – HOW ABOUT A PARAKEET?

Before I begin, I must inform those of you who are unfamiliar with my animal tastes, that both my husband and I are unabashed dog lovers. Crazy, totally in-love with dogs, dog lovers. We had dogs for the first 36 years of our marriage. Our last dog succumbed to cancer a month before we moved to Florida.

In 2008, a year and a half before we moved to Independent living, I wrote a blog contemplating the pros and cons of getting a dog. After you weighed in with your votes, most in favor of a new dog for us, I decided it was not a good idea, for all the reasons it is still not a good idea. Sid is physically disabled now, can barely walk; is quickly declining mentally; and needs more care than ever. I am trying to take care of him; manage my father’s care; handle everything in the house; run two businesses; and take care of myself. I am NOT taking on the responsibility of a dog. I am NOT walking a dog.

Yesterday, while I was visiting my father at the ALF next door, I noticed a new resident in the lounge at the end of his hallway. It was a little green and yellow parakeet in a cage. She was very attentive when I went to the cage to talk to her. She came up to the side where I was; turned her little head towards me, and seemed interested in what I had to say. When I walked away, she chirped and chirped. A little light bulb went off in my head, and I thought – “Why not a parakeet?” When I was a child, my parents would not let me have a dog because my mother said she would be the one who would end up taking care of it, but they both agreed on a parakeet. So from the time I was about 7 years old, until I was 19, I had parakeets. I talked. They listened. I loved my parakeets.

Now I have this parakeet bug in my head, and am thinking that it might be good for both of us. Sid will complain at first, of course, because he wants a dog, and only a dog, but I am willing to bet that eventually, he will warm up to it.

I am also thinking that perhaps having a pet will keep him from obsessing about every body ache and pain he experiences. Granted, his knees, back, and shoulders cause him a great deal of pain, but even with the new pain patch and oral medication, he whines and complains ( I often think to gain sympathy from me) constantly. He does not move without complaining. The closer I am to him, the louder he grimaces, grunts, and whines. Maybe talking to a bird and watching bird antics will distract him from himself.

Thankfully, I have slept on the idea. I wrote the blog last night, and woke up this morning to the usual rush in trying to get Sid ready for his Alzheimer Activity Center. I honestly do not have the time to devote to any more living beings. Sid, my father, and myself take up more time than is available to me now. I guess there was a reason my dear, sweet Casey died before we moved to Florida. It is not in the cards for us to have a pet anymore.

I currently have an electronic aquarium in my kitchen. If I want to see fish swimming around, I simply turn it on, and watch the colorful fish swim. No cleaning, no walking, no feeding. That is the extent of the pet responsibility I am able to handle as Sid’s physical and cognitive conditions continue to decline. In the meantime, if I feel the need to watch a bird, I can visit Coco at the ALF.

MESSAGE BOARD: Joan's Friday the 13th Blog - How About a Parakeet?

 Feedback to joan@thealzheimerspouse.com
©Copyright 2012 Joan Gershman 
The Alzheimer Spouse LLC
2012 All 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 – WED/THUR., JANUARY 11/12, 2012 – BUILIDNG A LIFE ALONE – A TOUGH ROAD

This blog was prompted by a message board post from a member whose husband has been in a facility for over a year and is basically unresponsive. She no longer participates in Alzheimer forums (She wrote on ours at the request of another member who was questioning her absence), considers herself a widow, and is moving on with her life. I applaud her initiative, which I consider emotionally healthy.

I am also trying to take baby steps towards a life of my own away from Alzheimer’s Disease, but I am struggling. Perhaps it is because my husband lives at home and is functional on a basic level. Although he cannot participate in a substantive conversation, recall the plot of a TV show while it is on, recall what was said to him 60 seconds ago, or understand anything that is not expressed in one concrete sentence, he is still here emotionally. He tells me constantly how much he loves me, and how good I am to him. Perhaps if he did not recognize me and was unresponsive, I would have an easier time of it.

Throughout our marriage, we were an extremely close couple emotionally, but I always had friends and activities separate from him. He was a workaholic, so I learned to keep myself busy and active when he was not home. I still have no problem going out with women friends to play my newly learned Mahjong, attend luncheons, the gym, and soon to knitting classes.

I cannot, however, think of attending concerts, movies, dinners, or traveling with “widow” friends, while leaving him at home (with an aide). It is difficult to describe the empty feeling that I experience when I think of going to such places without him. It is as if there is a hole in my heart. He IS still here. We should be doing those activities together. We still do those activities on a limited basis.

Nothing about Alzheimer’s Disease is easy for an Alzheimer Spouse. From initial suspicions that something is not quite right with our spouse to the inevitable death from the disease, absolutely nothing is easy. But this “building a life alone” business is a very rough road. I guess it is no different from any of the  “new realities” Alzheimer’s Disease has forced me to accept, however unwillingly:

Personality changes
Loss of memory, cognition, reasoning
Loss of comprehension
Loss of our former relationship

I fought all of the changes, tried to reverse them, and eventually accepted them. Each acceptance took an emotional toll on me. I suppose acceptance of building a separate life while my husband is still alive will eventually come, but it will be a slow process. We move at our own pace. My Alzheimer learning curve is a sluggish one.

MESSAGE BOARDS: Joan's Wed. Blog - Building a Life Alone

Feedback to joan@thealzheimerspouse.com
©Copyright 2012 Joan Gershman 
The Alzheimer Spouse LLC
2012 All 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.

RECENT BLOGS :

Venturing Out into the World - My baby steps toward living in the non AD world - December 12/13, 2011

Reality Bites - The incident that made me realize how drastic my husband's memory loss has become - December 19, 2011

Day Care, First Day - The surprising result of my husband's first day at Day Care - December 28/29, 2011

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