In spite of suffering from Alzheimer’s disease, my husband was able to play bridge and more than anything else, he wanted me to play with him. He begged me to learn the game. He seldom asked for anything so I felt bad about refusing and found a teacher. I joined her group. Strange as it may sound, I have never played cards of any kind with the exception of the children’s game known as Old Maid, which has no resemblance to a serious game like bridge. I have never even played solitaire. Well, there I was with three other women and our teacher, who explained the game as patiently as possible. I tried, I really did but I simply did not manage. Oh, I understood what she was telling us, but … don’t laugh at me, I kept dropping some of the cards I was supposed to hold in my hand. No matter how hard I tried, a card or two fell onto the table and in the end I had to give up. Maybe I didn’t really want to learn but the decision to leave was made when the teacher suggested that I try my hand at somethig else. I felt rather guilty because I was delighted at the outcome and rushed home to tell my husband that I’d been thrown out of the class. That was the end of that so I had to find other activities for us to do together.
At any support group one becomes dependent on the people there for guidance and friendship. Sometimes they even take the place of family. I experienced many emotions when I discovered how severe the repercussions of Alzheimer’s disease could be for my family.
Each of us mourned the way our spouse’s life had changed. Shock, loss, grief, fear, confusion, ambivalence, guilt, helplessness, despair, sadness and hopelessness were common reactions. I realized that most of my problems in coping with my feelings came from the fact that I had to do this alone.
Noone can avoid regretting hopes and dreams that had become so unrealistic. We learned to forge new, more realiistic dreams. We learned to take one day at a time which was excellent advice. We learned to stop wishing for things to be different and to start coping with the present. We all realized that there was a stigma associated with Alzheimer’s. Many women no longer invited friends to their homes due to embarrassment at how their spouse might behave in front of a guest. Slowly but surely they were shutting out the world from their homes. I did not agree with their approach as having survived schizophrenia I knew that it was not a good idea. So, every week or so, I invited at least two couples over. The men tried to involve my husband in their conversation but when he faded out, they chatted to one another or joined in with the rest of us. At other times a good friend popped in, never for long, but I think it was important.
Athough early identification and treatment of the problem is essential, negative stereotypes deter people from acknowledging the early signs. While the importance of information about physical health is acknowledged far and wide, society’s understanding of
Alzheimer’s disease is far less coprehensive.
Reducing the stigma requires widespread community education plus the willingness to challenge others when discrimination occurs in your presence. Here too, journalists need access to accurate up to date information in order to ensure that ther reporting will not unintentionally reinforce negative stereotypes. Unfortunately, journalists all over the world use terms that often serve to perpetuate the awful stigma associated with this type of dementia.
Most important of all, more and more research has to be done in order to find a cure, not only for Alzheimer’s disease, but for all the brain illnesses out there.
This clip appeared on facebook. I have been blogging about the blame, shame, stigma and the discrimination accorded people who are even a little bit different from the rest of us and who have some kind of brain illness. Many people do not know how to talk to them, how to behave in their presence, or even whether to accept them in the workplace.
Well, Carly has defied logic even though she has a long way to go. Click on the link and keep a box of kleenex nearby.
I found the support group for Alzheimer’s caregivers extremely useful as I made a very good friend there. Although both our husbands are no longer with us, we have remained friends. We learned that although we were unable to control the course of this terrible illness, we were able to obtain support from one another as well as from the other members of the group; especially empathy and understanding.
There is a stigma attached to Alzheimer’s which people need to overcome in order to advance the cause of caregiving. I do hope that the countries of the world are co-ordinating their research results on Alzheimer’s research, as a cure MUST BE FOUND.
We need to abolish the perception that individuality and the need for respect evaporates when a person is diagnosed with some type of dementia.
I was determined not only to provide care for my husband in the best way I could as far as his physical needs were concerned, but took him to see the odd movie even if he did not fully comprehend its contents. I drove him to the beach to watch a sunset, and visited our grandchildren often. We listened to music together and every evening danced to slow music from the 50’s or the 60’s. We held one another close and I hoped he’d remembered the close relationship we’d shared over the years…even if it were only sometimes.
Being a caregiver is about a having a relationship with the patient. We have to remember that each patient has his/her preferences and interests, desires and needs, feelings and emotions. I tried hard to reach my husband despite his diagnosis. Yes, he was very forgetful but he was capable of more than I realized. He’d worked with figures all his life as he was an accountant and that part of his brain worked well, so much so, that he played bridge till the end of his life.
The earliest signs of Alzheimer’s disease.
- Changes in memory that actually disrupt daily life such as forgettig something recently learned.
- Feeling challenged whn having to solve a problem and difficulty in concentrating.
- Unable to complete daily tasks easily.
- Putting things in unusual places and not being able to find them.
- Lack of judgment.
- A withdrawal from social activities.
- Talking about inappropriate topics.
- Unsure when driving.
Only one or two symptoms appear at a time and it can be a long process until more appear. If you see one or two even, it is advisable to see a doctor.
There is no single test to show whether a person is suffering from Alzheimer’s disease.
- My husband was given a thorough medical examination.
- A mental status test.
- A neurological examination.
- Blood tests.
- A brain imaging scan.
I was told that he was suffering from some kind of dementia, probably Alzheimer’s. The scan showed that he had suffered one or more small strokes. (What went through my mind was; small strokes? Would the doctor describe them as small strokes if he were talking about something that happened to his wife?) Much later on I learned that even a small stroke leaves some damage in its wake.
The doctor continued: If the memory loss disrupts daily life, if there is confusion with time and place, trouble understanding visual images and gauging spatial relationships, problems with words in speaking or writing, misplacing things, showing poor judgment, becoming less social and undergoing mood changes, chances are that the patient is suffering from dementia, probably Alzheimer’s disease.
Having a memory problem does not necessarily mean that the person is suffering from Alzheimer’s disease as there are so many different kinds of memory problems.
January 14, by Barbara Morrison
David’s Story, by Jill Sadowsky
Sadowsky has written a wrenching memoir of her son’s mental illness, which was eventually diagnosed as paranoid schizophrenia. The film A Beautiful Mind, based on a true story, characterises the most common course of the disease: onset in young adulthood, auditory hallucinations, paranoid delusions, and social disfunction. It is not multiple personality disorder, now commonly know as dissociative identity disorder, but rather a disruption of cognitive processes. It is far more common than I thought; Sadowsky quotes a doctor saying “‘One in every hundred people in the world suffers from this illness at some time or other. More than a quarter of all hospital beds in the world are filled with patients who suffer from schizophrenia.’”
As a parent, my heart ached seeing the disease gradually take hold in their beautiful son in spite of the family’s best efforts. Initially they were stymied by a lack of information, as Sadowsky and her husband battered themselves against the medical profession trying to get a diagnosis.
Still, the book is not as dark as I expected. There are many moments of joy and humor and family togetherness. There’s a lot of love in this family. But Sadowsky’s fear and worry for her son come through, as well as at times fear of him, what he might do in the grip of a delusion. I appreciate her honesty and openness. This is no saccharine after-school special. We are not spared her frustration at his limitations and failed attempts at independence or her weariness at having to go through it all again when he relapses or stops taking his medicine. Most difficult is her concern about her two daughters; not only were their parents distracted by their brother’s needs, they could not bring friends home to a house made chaotic and were themselves sometimes targets of their brother’s violence.
Most frustrating is the lack of support for the family. They were not given a diagnosis for years because the doctor was hesitant to diagnose someone so young as schizophrenic. Instead, the parents were openly blamed for causing their son’s problems, either through neglect or malicious intent. Once he was diagnosed, the mental health professionals continued to blame the parents—in the face of overwhelming proof that parents cannot cause schizophrenia—and refused to offer any advice on how to deal with their depressed and sometimes violent son.
Through all the fear and anger and frustration, what is most apparent is the love, not just for this difficult and damaged boy, but between all members of the family. Sadowsky reminds us of the smart and generous child, the avid surfer that David had been. Her husband does not leave a difficult situation, as many do. The daughters complain, but in a supportive way.
Sadowsky did not begin to get answers or assistance until she discovered a support group. It was in Israel where she lives and conducted in Hebrew. She went on to found one for English speakers and continues to speak to parents and health professionals about her family’s experience and what can be done to improve support for those suffering from schizophrenia and their families. She also works to erase the stigma associated with mental illness that hampered her family every step of the way.
The author sent me a copy of the book to review, knowing from this website that I share her goal of confronting social stigmas. I approached the book with caution. I knew there would be tears, and there were, but found comfort in the love binding this family together. I read the book all in one go, unable to pull myself away. I’m grateful to Sadowsky for giving us this authentic account and encourage everyone to read it and re-examine your ideas of mental illness. Check out her website for more resources for caregivers: http://www.jillsmentalhealthresources.wordpress.com
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Do you know that nobody ever told me that the grief section of books at our local bookstore is located in the self help section and is rather insignificant?
Nobody ever told me that the day would come when I would break down and cry; not just cry, but wail until I felt my heart was breaking! Why? Because on a crowded street I saw someone with the same colored hair as my late husband, wearing a t-shirt that looked like one of his and I said to myself, quite illogically of course, there he is, and I started moving fast toward him. But, when logic took over, it wasn’t him of course. When someone saw me crying and handed me a box of tissues, it was an effort to say thank you politely.
Nobody told me that the day would come when I would be incredibly, overwhelmingly happy, wishing to call my husband and share it with him; until I remembered. That happens less nowadays.
When our dog became ill, I experienced a moment of panic when all I could think of was; this is the last of our pets that he will have known. Sounds silly, doesn’t it?
Nobody told me that at the end of the day, all I would think was that grief isn’t a wall that comes crashing down on you all at once the way I’d expected. No, it’s a wall of bricks that falls bit by bit, piece by piece to bruise me, break me and beat me down, ever so slowly.
Now, a little over three years later, I am in the process of building myself up again. I try not to think of the past so much. I try not to think of my future. So, what do I do? I work hard on staying in the present, enjoying the positive things there, and there are many. In time, I aim to be whole again.
The owner told me; “I tried not to be biased, but I had my doubts about hiring Fred to work in my restaurant. His placement counselor assured me that he would be reliable but as I have never had a mentally handicapped employee work here before, I wasn’t sure whether I wanted one. And, I wasn’t sure how my customers would react to Fred.”
“Why? I asked.” “Well, Fred has the thick-tongued speech of someone with Down’s syndrome, is short, and looks rather young for the job. I’m not worried about my trucker customers because they didn’t care who worked their tables as long as the meatloaf was good and the hamburgers homemade. It was the loud mouthed college kids, high school kids and yuppie snobs who secretly polish their silverware with napkins for fear of catching some dreaded truckstop germ; the white-shirted businessmen who think every waitress wants to sleep with them, I was concered about.”
“What did you decide?” I asked. “I knew that they might be uncomfortable around Fred so I watched him closely for the first few weeks but I needn’t have worried. After the first week, he had my staff wrapped around his little finger and within a month, my truck regulars had adopted him as their official mascot. After that I stopped caring what the others thought. He was like a 21-year-old in blue jeans and sport shoes, eager to laugh and to please but never got distracted from his duties. Every salt and pepper shaker was in place, and no coffee spills or breadcrumbs were visible when he was done with a table. The problem was how to convince him to wait until after the customers were finished before clearing their table. He hovered in the background, shifting his weight from one foot to the other, scanning the dining room until a table had been vacated. Fred took pride in doing things the right way; exactly right. He also tried to please every person he met.
“Over a period of time, Fred told us that he lived with his mother, a widow, who suffered from cancer and that they existed on their social security benefits. Money was tight and what I paid him was probably the difference between them being able to live together or have Fred move to a group home.”
“Last October, for the first time in three years, Fred missed work; he was in the hospital getting a new valve put in his heart. His social worker explained that people with Down’s Syndrome often have heart problems at an early age and there was a good chance that he would come through the surgery in good shape and be back at work after a couple of months. A ripple of relief ran through the workers on the morning that word came to say he was in recovery and doing fine but I heard one of my waitresses tell a customer that she did not know how Fred would pay the hospital bills. After the morning rush, that waitress walked into my office holding a couple of paper napkins in her hand, a strange expression on her face.”
‘What’s up?” I asked.
“I only got to the table near the door after they had left and when I picked up a coffee cup, I found this underneath, neatly folded inside the napkin … three $20 bills fell onto my desk and when I opened it up, ‘something for Fred,’ was printed on the outside. On other tables I found two $50 bills also wrapped in napkins with the same kind of note.”
“What happened next?”
“Three months later, Fred returned to work. His mother brought him. I met them in the parking lot and invited them both to celebrate his return. He was thinner and paler but could not wipe the grin off his face. As he entered the restaurant he started to work but I told him that work could wait for a few minutes. Fred, I said, to celebrate your return, breakfast for you and your mother is on me. I led them to a corner booth at the rear of the room, the rest of the staff following us. The truckers followed too. We stopped in front of a long table, its surface covered with coffee cups, saucers and large plates all lying a bit crooked on dozens of folded paper napkins.”
“First thing you have to do, Fred, is to clean up this mess,” I said, trying to sound stern. Fred looked at me and then at his mother as he pulled out one of the napkins. It had something for Fred, printed on the outside. As he picked it up, two $10 bills fell onto the table. Fred stared at the money then at all the napkins peeking from beneath the tableware, with with his name printed or scrawled on each. I turned to his mother. “There’s more than $10,000 in cash and checks on that table, all from truckers and trucking companies that heard about your problems. There was a lot of noise, laughter and some tears too and while everyone was shaking hands and hugging one another, Fred, with a smile from ear to ear, was busy clearing all the cups and dishes from that table. Fred was no doubt the best worker I have ever hired.”
There was a hearing on the subject of solitary confinement in prisons, with testimony from federal and state law enforcement officials, academics and advocates as well as from Anthony Graves, an exonerated former death-row inmate who spent the majority of his 18 years at a Texas prison in solitary confinement.
Quote: “I lived under the rules of a system that is literally driving men out of their minds,” he said. The conditions were inhumane, my cell was small without access to human interaction or decent medical care. No one can begin to imagine the psychological effects isolation has on another human being.”
A study in the U.S. showed that the number of prisoners who suffer from psychiatric disorders is high. Many of them need some form of psychiatric intervention during their incarceration. They often require costly psychiatric hospitalization or crisis intervention services, and face a heightened risk of suicide.
I wonder whether congress will have time to attend to this issue.