Volume 5, Issue 22
October 28, 2001
1104A Murfreesboro Pike
Nashville, TN 37217-1918
I was just getting used to the beautiful fall weather when winter sticks it's cold nose in. It will be a hard freeze here tonight. This is a reminder that our elders get cold quicker than we do.
Since my grandmother has moved in, she says she is cold all the time. I tried turning up the heat but the house is unbearable for the rest of us. I have now gotten her to let me layer her clothing. It is much easier for her to put on another layer or a throw than for us to suffocate with the heat. We all have to learn new things through trial and error. I am so grateful that she doesn't fuss about anything new we want to try. (Unless it's a bath...<sigh>)
Keep up the good work Care Partners, PWiD's and
Caregivers. It is learning from you that I am able to keep
my grandmother at home.
When I read the last issue of The Ribbon and the request for opinions on Psychiatrist treating AZ patients, I literally cringed. Do I dare speak out on something I was so opposed to as little as one year ago? I realized in all fairness to each person, who uses this newsletter as their guide through this maze, we call AZ. That it would be unfair if I didn't tell of my experiences. First with regular Medical Doctors, visus Neurologist, then throw in a Psychiatrist for good measure.
I am ashamed to say that I thought there was no one more knowledgeable on this disease than myself. After all I had written about it, lived it, studied it, every tiny aspect of this disease I knew front to back. I now realize that in my naivety I was so sadly misinformed by my own reluctance to change. Resisting change for any of us is a difficult thing to do. We are ensconced in the familiar and do not want to rock the preverbal boat. So we go along with what is
familiar, never realizing how detrimental it could be to the well being and possible sanity of our loved one.
My husband and I will have been married 24 years in November of this year. He was an alcoholic the majority of his life. When we met in 1975, I made it very clear to him that I would never marry an alcoholic. My husband is 14 years my senior. I was pretty young back in those wild, crazy days when you think life will never change, you will stay young forever and getting old isn't anything you ever gave thought to. John over the years transferred that addiction from alcohol to pills. It didn't matter what kind of pills, tranquilizers, pain pills, whatever, he just took everything and anything. Having the handicap of being an amputee and his job requirements, there was always pain. John was heavily addicted to pain medication and tranquilizers. The thought of all of those daily pills given by medical Doctor's is inconceivable. But we all know how common this now is.
When he was diagnosed by two different Neurologists the medication wasn't stopped, they just kept adding. Being in the Medical Field I am so angry at myself for not paying more attention to the succession of drug therapy that was being used. Here we have a MD, and a Neurologist prescribing. When he was so uncontrollable his Neurologist
in Houston put him in the hospital for an evaluation. He also put him on Rispertol. As much as I knew about drugs
and interactions nothing prepared me for what this controversial drug did to my husband. If I hear of someone being put on this drug, I literally get sick to my stomach. He went from an overbearing, arrogant, opinionated man, to a sobbing child from all of the demons this drug was causing him to see and experience. I can't begin to tell you the horrors of the hallucinations, so vivid and real were causing him. I walked into his room and he was seeing outside the windows, men working. We were on a top floor at Diagnostic Hospital and he was seeing men outside with legs and arms cut off being forced to work with blood dripping everywhere and there was no way I could convince him he wasn't seeing these things any more than me coming home from work and strangers being in the house all day. I saw the terror in his eyes and the complete out of body experience he was having. I can't say I know what he was feeling as I have never been in his shoes but from my prospective it was horrible. So horrible for me to say, can you imagine how he was actually living and seeing these things? I couldn't control him, he was out of control, and he was a danger to himself and so many others. I was told that I couldn't bring him home. This is when he went into a Nursing Home. This is when the Dean everyone knew ceased to be. I will never be the person I was before this time in my life. A part of me died that day. I immediately took him to the MD again and I have learned the hard way that the majority of Medical Doctor's have such a limited amount of knowledge on this incurable disease. It is only a tiny fraction of the illnesses they must learn about and treat. Instead of taking away then adding more medication, he just kept adding.
About two years into this, John had gotten very agitated. It is hard to describe his behavior. I will tell you this;
the first four years were in him taking one downward spiral after the other. He, when I asked the home Psychologist, was ending stage two. He had progressed into someone I didn't know, withdrawn, sullen, agitated, combative and just pure ornery. I was pushed into him seeing a Psychiatrist at this time because I didn't know what else to do. This Doctor evaluated him; I spent an hour consulting with her. I was adamant that I am part of his treatment. She would slowly move him off the vast majority of drugs he was on and try something different. I said SLOWLY, not overnight, which she proceeded to do. I got a call from HH one Saturday night from one of the weekend nurses who said John was completely out of control. I rush down there and he truly is a wild man. I said, "Show me the medication changes," and when we looked we saw the reason for the bizarre behavior. He was in the middle of total drug withdrawal. No slowly moving him off it, he was going cold turkey. I was then informed that he hadn't slept in over a week, he had walked the halls and cried for his mother. Alternating with packing his clothes, dirty and clean all together. That particular night he was throwing them up the hall, feces, urine soaked, dirty clothes and clean clothes until he had thrown everything up in a huge pile by the nurses station. I immediately called the Psychiatrist and fired
her. Now don't think I dropped the ball on my end that week, I called every single day and checked, only to be told how well he was doing. I was asking the wrong people. I should have gone directly to the nurses. There is quite a communication gap between what management thinks and the thinking of the on hands personnel. The void here was insurmountable. So back we go to the MD once more. I am still confident that our medical Doctor is the one to treat my husband. Who knows him better than the GP who has treated him for 20 years?
This past December John eluded security and left the home in a freezing rain, short sleeved shirt and one shoe. He proceeded to walk almost three miles. He did tragic damage to his foot and the stump on his leg that had been amputated. He doesn't remember the holidays. In fact he remembers nothing of 97,98,99. A pedestrian, who called the police, found him. This past year has been the nightmare from Hell. We just two weeks ago got a clean bill of health for his foot. The huge blisters had turned into huge ulcerated areas that went down in his foot. The places were at least an inch and half deep and as big as a lemon. We spent four months going into Houston 3-4 days a week to The Wound Care Center. John was in a wheelchair, for the first time in his life and he lost that limb when he was 19 months of age. This was the very first time he had ever been without his leg and he raged over the loss. Combine that with the strong narcotics he had been prescribed for the pain, add in the antidepressants, and you have a lethal dose. He was on the much controversial Oxy Contin. He turned into a big bully. Everyone was terrified of him and his anger escalated until he hit his roommate, fractured a bone and the man was hospitalized. Realizing something had to be done, the nursing home was pushing me to have him admitted and be de-toxed and I was fighting it tooth and nail. I had my experience with Psychiatric care and I didn't like it one bit. To make a long story short the Psychologist at the home found a hospital far away from the wonderful medical center right outside my front door and a Psychiatrist that specialized in Geriatric, Psyche care. Everything was set in motion for John to go into the Geriatric, Psychiatric Ward, at a hospital close to Galveston. That turned out to be the only thing I ever did that I am proud of the outcome. John was slowly taken off the entire regime of mood altering drugs and this female Psychiatrist put him on things I never would have imagined. My husband is a different person. There is no anger in him, no hostility, he is passive and he seems content. Just being in this facility enabled him to see a Wound Care Specialist and Surgeon who finally got his foot well. Alas, he is minus his big toe but the foot has healed and he doesn't mourn the loss of that toe. His greatest fear was losing the foot. This is now September and I have lived, and breathed AZ every single day this year. One uphill battle after the other. I have spent more hours in Doctor's offices and hospitals than I want to remember. Not once have I had any respite care for myself.
I now realize the only person qualified to deal with the mind ofan AZ patient is someone who has studied this very thing and who knows better the things that will work and won't. A skilled Psychiatrist must know a great deal about a wide variety of drugs. Because all of these drugs have different side effects, the Psychiatrist must also understand a great deal of general clinical information. Much of this knowledge is highly technical and complex. Just like AZ. There is a great deal of science underlying the drugs to treat patients with psychiatric medications. They make their decisions based largely with a combination of clinical lore, experience, and intuition. No X-rays, blood specimens, or physical examination can determine the proper mix. Medication can be the difference of the quality of life for your loved one, but only a Psychiatrist can determine the type of medication your loved one will require. Only a Physician who deals with the working of the human mind is qualified to treat them. Four years ago I would have fought you to the end in regard to Psychiatric care. Now I am a strong advocate for this being the only person qualified to treat someone with an already impaired mind. I have personally dealt with every single aspect of the vast array of Medical Doctors, Neurologist, then Psychiatrist and my view is that only a Psychiatrist is qualified to treat an AZ patient. I have proof it works, my husband seems almost normal today. I brought him home for several nights just last week and as far back as two years ago I couldn't have done that. His abusive behavior wouldn't have allowed it. Now it is a genuine pleasure to be around him. He is dealing with this illness much better than I am. But that is for another day. It isn't the topic on the table for this newsletter. As always these are my personal experiences and opinions.
Editor's note: As of this printing, Dean has taken John home to stay. He has passed the Mental exams scoring 30 out of 30 questions. He was found to not have Alzheimer's Disease. He had been overmedicated for all these years. It was only after being detoxed that his mind started clearing. We all wish the best of luck to Dean and John.
This is in response to your question in the last edition of The Ribbon as to whether a person should or should not use antidepressants. First and foremost, it is the person's decision with a must of consulting with your physician.
Most people believe it is horrible to be placed on these medications, that is shows they are weak and cannot control their emotions. As caregivers, we may think that we are managing "everything" very well. However, when we take a minute to sit down and reflect the enormity of what we face, is in fact, very depressing.
I consulted the AOL Medinfo area to seek information regarding depression and antidepressants. Often times depression follows stresses such as deaths, marital/relationship breakdown, job loss, money worries, etc., or changes in a body's hormones, say as in pregnancy. Many times there is no obvious external cause, and it is just one of those things that nature does.
The cause for depression is a relative lack of some of the chemicals used in working the brain. These chemicals are called neurotransmitters. In depression certain neurotransmitters are relatively lacking. One of those is serotonin.
There are many ways to work with depression. Just trying to pull yourself together may not be enough and can often times make the situation worse. Some have found relief in counseling, but as you know it can be very expensive.
Medicine, such as SSRIs, Selective Serotonin Re-uptake Inhibitors, are sometimes used to treat depression, and have been used to help with anxiety, panic disorder, etc. SSRIs work by allowing the body to make the best use of the reduced amounts of serotonin that it has at the time. In turn, the levels of natural serotonin will be rebuilt and the medicine can be reduced and withdrawn (again, all under the supervision of a physician).
Some individuals, however, feel that antidepressants are the easy way out, addictive, so to speak. Many times today's medication is confused with those used in the past, such as diazepam/Valium; these work in a different way. The ones used today are not addictive, as they work by allowing your body to make better use of its own chemicals. In most cases, people can be back to normal within three to six months.
Also there are other ways to work with depression. Relaxation techniques, regular exercise, eating right, reviewing
your schedule, cutting down on alcohol, caffeine, tobacco will help. Trying to keep your mind active with a hobby, book or watching TV, instead of dwelling on all you have "on your plate." Gathering Place or a real-time support group) to share your problems with will help make them not seem so ominous.
The above is a brief synopsis of the articles I read. You
can further investigate by visiting these links --
My personal feeling: It shows greater strength to ask for help than it does to go on like everything is OK and become
completely exhausted. Every case is different. Some folks can work themselves through. There is no embarrassment in asking for help, be it medical or psychiatric or conversation with a good friend or a close/trusted family member. The key is to reach out. None of us are SUPERPERSON - we can't do all of it all of the time. We tend to wear ourselves down to a frazzle. Sometimes our bodies just can't produce the chemicals it needs to keep going so we need to turn to medicine for help. As I recently heard it put, if you were a diabetic, you would take insulin. The same is true with any medical condition; when something is lacking, help is needed to build it back up. The most important thing is to ask for help and to consult your doctor.
The Gathering Place
Alzheimer's Caregiver Support
Alzheimer's Awareness Project
My name is Paul Lucas and I am writing to tell you about TimeSlips, a rare and inspirational play being performed in New York City for just three weeks this fall (October 30 - November 18) at HERE ARTS CENTER (145 Ave. Of the Americas at Spring St.)
I realize that you may not be based in New York, but I wanted to let you know about the play, and the extremely worthwhile research that inspired it, in the hopes that you will tell others and help raise awareness about the project and about Alzheimer's in general.
TimeSlips emerged from creative storytelling workshops developed by Dr. Anne Basting, author of the 1998 book The Stages of Age: Performing Age in Contemporary American Culture and a leading professional in the fields of theatre and gerontology. Her work with people in the middle stages of Alzheimer's and the resulting play offer a rare window into the emotional life of those living with dementia. For more information on the TimeSlips project and Dr. Basting's research, I invite you to visit our website at Time Slips Project.
As someone with firsthand experience with people living with Alzheimer's, you know that all too often care focusses on the struggles of the caregiver or the despair of the patient. Instead, TimeSlips invites us into the imagination of those with Alzheimer's and asks us "Are we more than our memories?"
The play follows the storytellers as they discover the freedom of the imagination and become Thomas Rex (a singing cowboy), Godfrey (his talking horse), Maryann (a swimmer in the Hudson River), Holding On (a can-can dancer), and Bookman (a man buried to his chest in books).
Each performance will be followed by a post-show discussion, facilitated by a leader in either the arts or dementia care. Certain performances will also be preceded by Training Workshops in the TimeSlips Creative Storytelling Method and Training Videos are also available through the website.
We hope you or someone you know can join us for this special performance. As you may know, in light of the recent incidents in New York City, theatre attendance is way down and I am asking for your support in bringing the important message of TimeSlips to as many people as possible.
Tickets are just $19 and $15 for students/seniors/groups of
5+. Call the HERE box office at 212.647.0202 for more info
or visit our website at www.timeslips.org
Thank you for your support.
A Bit More
from Gathering Of Friends
I am late with my email about this trip because I just got back
from vacation today. I read all the emails from everyone else and totally agree about the love and hugs I especially felt. I was in crisis most of the weekend because Mom was placed in a NH the day I left. My sister kept calling me at Jamie's house and she was so nice about it. The truth about the pizza is that I was on the phone with sister and didn't know how to do call waiting since I don't have it so we didn't get the confirmation. I want everyone to know what a wonderful weekend this was for me. I had such a support group there and so much advice which I did take by the way.
I was the first to arrive in Nashville and Jamie met me at the airport. I too did not know what to think. I felt an instant bond with her. We had a couple of hrs before we had to pick up Donna and I talked and talked and Jamie listened.
The roommate I had was also wonderful (meemawmoe) she is a truly special lady. We all had such a good time going to the hotel shopping and the memory walk was truly special too. I really got emotional during the release of the balloons too.
Jamie you are a wonderful host. Nick the barbeque was wonderful too. Good Job.
If anyone can make it to the next GOF I would truly recommend it. You won't believe the instant bonds and the love and the hugs and the tears you get.
I want to thank everyone who was there and supported me with just a tap on the shoulder or a hug or just a look. I truly am so appreciative to have met you all (even the lady in the phone booth) LOL. Mary is truly special and we did get Linda with that surprise.
I could go on and on but I wont. I will never forget that weekend for as long as I live. It was the highlight of my year.
I am so glad I finally got to meet Linda, Sharon, and Mary but the icing in the cake was meeting the rest of you. Thanks again for putting up with me. By the way, was I still the only one who got searched in Syracuse and NASHVILLE, AND almost missed my connection in Cincinnati too!!!!!!! LOL
Love and Hugs to all of you
Betty P. (NY)
Just a final thought from all the love and fun from the 2001 Gathering of Friends...
One of the last things to happen with the 2001 Gathering of Friends was not as significant as the Alzheimer's Association's Memory Walk, but yet still a very big part of the weekend. The Monday morning as we all were getting ready to leave the hotel...I asked everyone to "gather" in my room. When everyone had gotten there, I gave out a going away present to everyone. As they opened their package, I explained that this was a book that had stories of finding joy in Alzheimer's. I went on to explain there were many stories from all over the country, but there were also stories contributed by three of us who had attended the 2001 Gathering of Friends. The book is titled "Finding the Joy in Alzheimer's" which has been compiled by our dear friend, Brenda Avadian (CAREVOICE). Each book had been
personally inscribed by the three contributors. As everyone opened their packages and read, I went on to say that even though Alzheimer's is a horrible disease, there are very special times that can be so very joyful. I used the example of Mary. Mary's Mom, in the last few months, had spoken only very little. When Mary walked into the room one night, Mom said, "That's my baby!" Those little things we take for granted along the way have a way of changing into the most wonderful gifts we could ever receive.
I asked the ladies to think about what the book had to offer. I also implored each person to take the time to write a story for the sequel to this book, Finding the Joys in Alzheimer's, Part II. It didn't have to be about the fun of Nashville, but hopefully just one small thing that has happened which could make someone else smile.
And I really don't want it to stop with just the folks in the hotel room, that very sad and teary Monday morning. Each and everyone who reads The Ribbon has something, no matter how small to share. You can send your stories to Brenda (CAREVOICE@AOL.COM). (The stories need to be at least 250 words in length and no longer than 1000 words.) (Try to get them in by November 12!) If you don't think you are a writer, don't worry, Brenda is a big help in that department. By doing this, you will not only help someone else not feel like they are in this alone, but you will feel really wonderful for having shared.
Oh...and if you want to get a copy of the book...you can go to The Ribbon's Book Store (you can find that on The Ribbon's home page) and type in Brenda Avadian in the search block for Amazon.com. Poof it comes up with everything you need and more to get the book.
Thanks y'all for taking the time to think about submitting a story. I can't wait to read Part II!
The Gathering Place
Advocacy Support Network
I am very pleased to announce the completion of our new web site. Today we finished the incorporation process of DASN International and would like everyone to visit www.dasninternational.org. (I would appreciate it if all comments, concerns, and recommendations could be sent to me personally at firstname.lastname@example.org so I can make sure we don't get duplications in requests.)
I anticipate that our website will need to be a very dynamic one that will be ever changing to accommodate where we are and what we're doing around the world. We have tried to make it as "user-friendly" and aesthetically pleasing as possible while still chocking it full of useful information.
We hope those who need it will find the larger print option useful and hope that this option becomes the benchmark for ALL dementia-related web sites in the future..........Phil
I am currently researching for a documentary about Dementia and primarily the effects it has on the sufferer's living companions and carers.
My Grandmother (83) is under full time care of my parents (in their 60's) who are also busy operating their business from home in a remote rural area.
Living away from them, it is very sad for myself and my 3 brothers to watch. But what gets us most upset is that my parents are deteriorating faster than my Grandmother is.
It easy enough for us to say "Just put her in a home and get some quality of life for yourself." But they feel it is their duty to see that her last years had some depth to them. Having her around 'real' loved ones.
Although I love her dearly, the sad fact is that Grandma may still have 10 years to go, and by that time Mum & Dad needing care themselves.
Many of you may ask, "Why don't you go help out." But it has got to the point where, after 3 years in their care, she only wants "Tricia or Bob" to do everything and anything... at her beck and call (day and night 'shifts') for usually nothing at all.
I'm sure many of you are aware of the experiences. And feel both deeply compassionate and highly aggravated at the same time.
After producing a mini documentary on my own family experiences I am now looking for more stories to make it into an hour special.
I have been informed that their are cases of Teenage Dementia and also Dementia related to HIV.
Also, I am aware that females are more likely to be diagnosed, but are they any interesting cases out their within males? What is the treatment like in nursing homes for male Dementia patients?
I want to incorporate all those decisions that the carers and loved ones have to make. The different scenarios that each case may face. Adaptations and life changes. I want to produce something that will not only touch hearts, but educate and those in what may be in store for them in the future.
If anyone has some personal stories for my research, I'd love to
hear from you.
Thanks for caring,
October 31 (Wednesday 1:00 to 2:00PM EST)
Host Vicki Gardner welcomes caregivers for a social and
networking discussion group on the topic of
"Expressing Our Emotions."
October 31 (Wednesday 9:00 to 11:00PM EST)
Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Caregiving for People with Dementia."
Enter the chatroom from the front page of either website or at
Editor's Note: About every 4-6 weeks EC-ONLINE has hosted chats with professionals, Ph.D. types as well as noted authors. These will be listed on the website under the names: "Alzheimer's Answers," "Aging Answers," and "ElderCare Answers". Transcripts are also available. We will try to keep you posted but urge you to check out the website at www.ec-online.net.
just wanted you to know we had our Alzheimer's Memory Walk in Winston-Salem,N.C. last sat. and we raised 16,000 dollars, it was down from last year and so was the crowd but every little bit helps. This was my third year walking since my Mom got this disease. She passed away March 11 of last year but I, my daughter and granddaughter will continue walking as long as we can for this disease.
Hope you have a good week
Hi. What a neat issue of The Ribbon. I have not been in
touch in the chat rooms since Don died, but MUCH appreciate your
keeping me on the mailing list for the newsletter. You are
doing a great job. Best wishes to all. Pat
Come and spend Halloween
night with us at The Gathering Place. There's no telling
what kind of Goblins you might encounter.
The Gathering Place is hosted Monday - Friday 8-10CST for all who want to meet new friends, chat with other caregivers and care partners, get a laugh or two in, and grow stronger with the support of others who walk in your shoes.
Welcome to The Gathering
Place - TheRibbon.com
Hugs and Peace,
Jamie and Karen
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