Volume 1, Issue 16 - The Ribbon Newsletter

Issue 16
August 21, 1998

Karen and I would like to encourage everyone to continue to share your thoughts, fears, questions you may have, as well as information you come across. The Ribbon is your newsletter as this issue will show. Most everything in this issue is something that you have sent to us. Your contribution may spark an idea for future issues or provide an answer to a question another caregiver is facing.
If you see a question and you have found a solution, feel free to send your ideas to be included in a future issue. We work together to help each other in our daily struggle of coping with this disease.

Without YOU there would not be a newsletter. We count on you as you count on us.

{{{{{{{{{{{{Caregivers and Support People Everywhere}}}}}}}}}}}}

Meal Times Tricks and Secrets
by Karyn Bowman

Meal times can be the worst of times. It can be the best of times. I never know when I walk into a room at meal time if the finicky eater will eat or not. And from comments people have made in various chat times, I suspect the same thing goes on at home. However, there are various tricks you can use to make food consumption possible. I hope the ones I am about to share with you will help ease caregiver meal time anxiety.

Sometimes a lot of food all at once is overwhelming for a person with dementia. The plates just look so full. And if the plates have any design on them it just adds to the swirl of colors. That is why many books suggest serving one part of the meal at a time. First the soup, then the salad, then the entree, and finally dessert. You may do it in a different order in your family but the idea remains the same. You serve one part of the meal at a time so the person does not get overwhelmed by the amount of food and then does not eat at all. That is why it is also suggested to use only white plates. Colored and design laden plates are beautiful. But for a person who has dementia, they are just adding to the problem.

When considering meal size, you have to consider preferences the person may have. I have met many people who state they only want to eat a little bit. So I give them a small portion of the entree on the salad plate. Sometimes I have to refill that portion but that is the point after all. People are eating because it does not seem like a lot of food to them.

Another preference I discovered is that people may not want to be seen eating. But they will eat if you are eating. One lady I work with used to be the first lady of her church (until her husband passed away). Since she was in charge of meals and making sure everyone was fed, she is very uncomfortable eating until she knows all the children have eaten or received food. So I reassure her that all of the children have eaten and then I sit with her with a plate infront on me and eat some food. She sees me eating and assumes it is OK. (Most likely because she believes I am the new first lady).

But there are also the chatty cathys of the world. You know who they are, the people who would talk non stop but do enjoy eating. The solution we came up with at work for a few of the people was devious but it works. Once you get a bit in their mouth, start talking. I mean chat about anything, keep going for minutes at a time. Pretend you are auditioning to work at the home shopping network. When they cannot get a word in the only thing the have left to do is to start picking at the food that is on their plate.

Some of the people we are trying to get food into just cannot handle a fork and spoon anymore. They try but little gets into the mouth and more winds up on the clothes. And then you notice that they are trying to pick food up with their hands. This is the time you say "Finger foods"! Corn Dogs, chicken nuggets, sandwiches, fresh fruits and vegetables cut up, french fries, potato chips, etc. The list is endless. If this is their inclination, go with it.

Remember you want to make this as failure free for them as well as yourself. As long as a person can use utensils, let them. Sometimes you will notice that food on one side of the plate has been eaten and the other has not. What do you do? Turn the plate after they are done with one side so the person can see the rest of the food. Or if food all gets pushed to one side of the plate and falls into the lap, consider gettting an adaptive plate that has a higher ridge on one side. Pair it up with a placemat that does not move once placed on the table. (Rubbermaid makes such a product for lining cabinets.) It helps the person get all of the food and keeps most of it in the plate.

Drinks can be hard for some people as well. Maybe they cannot handle the cup or they cannot tilt their head back to get all of the liquid in a glass. At my work place, we have found plastic cups with straws built in on the side of the cup works for people who are still able to sip. And they are easy to find in the kid's dish section of my local Osco store. Another cup that works well is one that can be found in adaptive equipment catalogs. It has a half circle removed from the top on one side of the cup. The half circle fits over the bridge of the nose and allows a person to drink without having to lean their head back.

Finally there are people who just refuse to eat. Maybe they have chosen to no longer eat. Maybe they are slowly losing the ability to swallow. Maybe they are not eating because the spice on the food looks like bugs. Maybe their dentures hurt and need fixing. Maybe they will eat food serve by one person only. Maybe their tummy really hurts when they eat. But no matter what, always offer food. Always offer things you know they like. If possible, have a second choice on hand. If you cannot figure out the problem, then it is time to see the doctor.

There is no doubt about it that meal time can be stressful. However always look to see how you can change or adapt the situation to make it better for the person with dementia. Remember they cannot change. But we can.

Karyn Bowman, aka Sewingbabe, has worked with seniors for over ten years. The last three and a half years she has worked in a dementia specific adult day center in the Chicagoland area. She has a Bachelors in Psychology and English. She has been a member of this support group for 1 1/2 years.

A Notice for Caregivers

From jwr50@teleclipse.net

I hope this info will help others for Alz. is the reverse process of age. Uncle Jay was diagnosed with Alz. in April of 97, he was having problems with his memory for several years, a Cat Scan confirmed what I suspected. Uncle Jay never married for he was discharged from the Navy in 1944 with Anxiety Disorder. He came back to the farm but he was anti-social, he started painting and gardening for a living.His Mother came to him and told him something was wrong with her mind and she could no longer cook and do her chores, Uncle Jay took over taking care of Papa and Maw. Maw became worse mentally, and Jim's Dad and Mother moved to the country in order that his Mother could help take care of Maw. Jim's childhood revolved seeing his Grandmother being tied in a chair, spitting her food out and growling like a dog. Jim's Mother tried to jump off the second story of the small rural hospital for she had a nervous breakdown. I went to Uncle Jay's family doctor and found out Alz. was on Maw's side of the family, I traced this disease as far back to Great-Great Grandmother. I started documenting all info from the medical field on Uncle Jay, Jim and I knew these documents would be needed in the future. We went to court the first of March, we had POA papers and the court granted Guardianship, everything we thought would be okay but that was a joke. To date we have been in court 3 times and expect a 4th in the near future, family members that never cared for Uncle Jay have descended out of the wood work. We had Uncle Jay in a residential home they kept him emotionally upset till he developed Shingles, Bells Palsey and his halucinations became worse until the lady, who owned the home told us we would have to move him. Examples of what family were telling him: he did not need to stay at the residential home, nothing was wrong with him, we were abusing him, these are just a few of what was being said to him. We moved Uncle Jay to the nursing home the middle of May, my doctor Bill and associate Dr.Stewart helped in the transaction of an emergency move. Dr. Bill ordered a Cat Scan to see if Alz. had progressed any farther. This is what I want to stress to all the family caregivers and to those in the medical profession on July the 1st Uncle Jay fell, the left back side of his head hit the railing of his bed and he required stitches. The nursing home charge nurse called me and told me what had happened and I asked when did the doctor want Uncle Jay to see a doctor for a follow up, Rosemary said the written instructions were to take stitches out in 10 days no follow up necessary. Uncle Jay started falling missing a chair or just simply unstable when walking, he reached the point by July 19th he could not talk, use utensils, messed in his clothes, Jim and I were so shocked when we took him back to the nursing home we asked the nurse to call Dr. Bill. Dr. Bill called me at 12:15 A.M. he and Dr. Stewart were thinking that Uncle Jay had a stroke, I asked Dr.Bill if it could be his medication, we discussed about progression of Alz.. Dr.Bill stopped the medication for deppresion and anxiety even though he knew this was not the cause of the sudden change in Uncle Jay, and he had decided to order another Cat Scan the end of the week. The phone rang Thrusday night the charge nurse called and said Uncle Jay had fallen again his left foot was swollen and was being transported to the emergency room. I told her I would meet the ambulance, I woke Jim up and I left, I started telling the doctor what was going on with Uncle Jay's condition and that Dr. Bill had scheduled a Scan early Friday morning. I got into a heated discussion with the doctor for he did not want to answer my questions, and he asked me if I had any nursing background. I told him I was raised in a hospital and that I had dealt with many medical problems in both families and that I had been the Caregiver the past two years with Uncle Jay. Uncle Jay was omitted into the hospital and put in ICU, Jim came later and I told him I was going to stay with Uncle Jay, I told Jim that I had this deep feeling that Uncle Jay's medical condition was due to July 1st. All night I kept watch over Uncle Jay, the Cat Scan was done and the results were a mass of blood clots on the left side of his brain, his brain was completely shifted to the left side, and he needed immediate brain surgery. I would not allow them to move him until I talked with Dr.Bill, Dr.Bill screamed in the phone and said they should have done a scan on Uncle Jay when he fell on the 1st, he said to medi-vac him to UAB. While we were waiting for the helicopter I had an on set of anger, before I left the hospital I told the doctors in no uncertain terms that an Alz.patient needs special attention, Alz. Patient depends on the Caregiver and the medical profession. All the emotional stress from "family", fustrations from the past several months, seeing Uncle Jay in the condition he was in, the anger just came out. After the surgery the nureosurgeon told Jim and I the blood clots and shifting of the brain was due to a hard lick to Uncle Jay's head. The doctor said the clots could have been there for a long time, that is when I asked him "Cat Scans do show blood clots"? The doctor's reply was "yes" and I told him if the clots were old than they would have shown on previous scans, and his reply was "yes" I than gave him the info on the scan in May, his reply was the trauma to Uncle Jay's head was due to the blow on July 1st. The only compliment I remember was the social worker telling me that I should have been a lawyer. I am asking to all who read this letter to please insist, ask questions, and to remind the medical field that Alz. Patients depend on the Caregiver and the Medical Profession.
HUGS, Carol Anne

Book Recommendation

From VWebber491

FYI - I ran into a wonderful novel the other day where the main character has AD.
It is called "Shades of Grace" by Barbara Delinsky. It is a couple of years old. There is just enough romance (the daughter falls for the doctor) to lighten things up - but the descriptions of how Grace's mind is working (or not depending on your outlook) is very revealing. I thought you might want to pass on this gem to other readers in the group.

Sincerely,
Vee

Medical News

From STSWILLIE

Common microbe may have role in Alzheimer's -study
3:57 p.m. ET (2002 GMT) August 11, 1998

PHILADELPHIA, Aug 11 -- A common form of bacteria that causes respiratory problems could be linked to Alzheimer's disease, biologists said on Tuesday. The organism called Chlamydia pneumoniae was found in the brains of 17 Alzheimer victims out of a total 19 that were examined. Infection was particularly noticeable in regions of the brain showing damage typical of Alzheimer's, the researchers said. By contrast, the biologists from Allegheny University of the Health Sciences in Philadelphia, Detroit's Wayne State University and Johns Hopkins University discovered the bacteria in the brain of only one out of 19 people who had died from other diseases. Researchers said the findings could shed light on the cause of inflammation which separate studies have found in the brains of victims of Alzheimer's disease, a form of dementia that usually strikes elderly people and leads to forgetfulness, disorientation and confusion. There is no known cure. "What we have here is an organism that can get inside (brain) cells and can potentially trigger them to cause inflammation,'' said Brian Balin, an Allegheny University neurobiologist who helped lead the three-year study. Researchers, describing the bacteria as a possible new risk factor for Alzheimer's disease, said they hoped their efforts would lead to the development of effective new treatments for people who suffer from the disease. Alzheimer's disease is expected to afflict nearly five million people in the United States alone by 2000, and experts say the number of American sufferers could jump to 14.5 million by the middle of the next century. Because Alzheimer patients require costly and intensive care, the disease could pose a financial nightmare for the federal government's ailing Medicare insurance programme for the elderly in coming decades unless a cure can be found. Early in 1997, British researchers at the University of Manchester presented evidence linking Alzheimer's to the virus that causes the common cold sore. That discovery raised hopes that a vaccination might someday be found. Results of the U.S. study appeared in this month's issue of the journal, Medical Microbiology and Immunology. Chlamydia pneumoniae is a form of bacteria associated with a wide range of common respiratory ailments from sinusitis to bronchitis and pneumonia. But people often can be infected from childhood without ill-effects. In fact, the bacteria are so common that they are believed to infect as much as 70 percent of populations in some parts of the world, including the U.S. Pacific Northwest and Scandanavia. Alan Hudson, a microbiologist at the Wayne State University School of Medicine, said researchers began to suspect Chlamydia after hearing reports of a link between Alzheimer's and atherosclerosis, in which the bacteria was believed to play a role. Atherosclerosis, a condition which leads to cardiovascular disease and strokes, is marked by inflammation and a buildup of fatty substances in the blood vessels. Research found Chlamydia in the brain's glial cells, which support nerve cells and function like an immune system in the brain. When infected, they cause inflammation. Balin said a main goal of the research team now was to figure out how Chlamydia bacteria slipped from the respiratory system to the brain. A possible route would be the olfactory system, which presents a physical connection between the brain and the respiratory system. Researchers noted that the region of the brain associated with the sense of smell is often affected by Alzheimer's disease.

Happenings

The Alzheimers Group from the Better Health website has started on Thursday nights. To access this site: Better Health Network: A Supportive Community
(http://www.Betterhealth.com):

(click on the Chat button, then click on the Weekly schedule and find the chat on the schedule, and finally click on the hyperlink).

Time is: 9pm EST
8pm CST
7pm MDT
6pm PST
Hope to see you there!!

Announcement

Kevin (Weather91) is happy to announce that he has The Ribbon website ready for viewing. Some things may not be finished yet so you may have to hit the Refresh Button when you go for a second visit. Take the time to pay a visit, sign the guestbook, stroll through the Dedication Garden, and if you've misplaced, deleted or just forgotten back issues of the newsletter you can read them here. We give permission to anyone to print out any or all issues to give to others who may need them.
It also has the times, and links to all the Support Group Chats.

Pass the link to anyone who may benefit from the site. In other words, spread the word! Welcome to The Ribbon (http://www.theribbon.com). Be sure to add to your Favorite Places file.

Thank you Kevin for all your hard work, for all your great ideas, and for putting up with us and our ideas. You are greatly appreciated as is all your work.

E-mail Box

From SFE827

I myself have hepatitis C. I'm also a nurse and so many of my pts. have dementia and Alheimers. That's tough to see a family member go through. It's like watching them regress back to age 2, it's so hard on the families. I wish you all strength. Just remember all the years you gave your parents hell when times get rough. Some of us get the opportunity to thank them by taking care of them at a time they too cannot take care of themselves.

God Bless

From AZMcDougal

Thank you for the links.. Oh it is so nice meeting all of you, and I look forward to getting to know all of you better.. I knew I needed support in this, and I am so thankful I found your chat rooms.. I have a sarcoidosis support chat on Thursdays at your meeting time and this week I have to host it with another woman but I will come to the daytime chats.. You were all so warm and I am most appreciative.. God bless you, and if ever I can help you please let me know.. Dee

From MADUTCHESS

Sorry I am late with this letter. But I truly want to thank you for all the Newsletters, but particularly for Newsletter #13. I printed it out and gave everyone who helps me with my aunt and Mom a copy of it, along with the 7 Stages of Alz. and the "Caregivers Bill of Rights".

These wonderful ladies who help me were grateful for all the information. They also were amazed to hear what a Network we have in helping each other with this disease. They seem to now have a better understanding of the problems we have and also how to cope with them day after day. It is most difficult to get good caring people to help, especially where Dementia is involved. I really believe the ones that do are special "Caregivers". I already knew they had more patience than I.

So many thanks you two for your great Newsletters. Karen much luck in your move. I am sure your brother appreciates your help. Heaven knows how much we all need each other.

Madutchess

From RHONDA1872

My father-in-law was diagnosed with A.D. 4 years ago. My mother in law was caring for him up until May when the family decided to put him in a long term care facility. She is 80 years old and just wasn't able to care for him in his late stage of the disease.
Anyway why I'm writing is this......do you know of a person we could talk to about Medical Assistance? She has been paying $100.00 a day for his care, while she gets her financial matters in order. Someone told my husband that since she has some long term investments and life insurance policys that she won't qualify for assistance. Now she is wanting to bring him home because she feels she can't afford the care at the nursing home. We live in the Los Angeles area and after checking at a number of locked facilities this home was the nicest and most resonable.

Thank you
Rhonda

From SSabel2884

With regard to coversational circles, I have a doozy to relate:

Last fall, Mom and I were watching college football on TV. Notre Dame was playing Pitt, and (as background) we live in Purdue University's hometown, and Purdue had an uncharacteristically good season last year.

Mom: Who's playing?
Shannon: Notre Dame versus Pitt.
Mom: Who's ahead?
Shannon: Notre Dame.
Mom: Are they any good this year?
Shannon: Well, Purdue beat them last week.
Mom: Well, that's not saying much.
Shannon: Actually, Purdue's had a good season so far: they're 4 and 1.
Mom: Oh. So who is playing in this game?
Shannon: Notre Dame versus Pitt.
Mom: Who's ahead?
Shannon: Notre Dame.
Mom: Are they any good this year?
Shannon: Well, Purdue beat them last week.
Mom: Well, that's not saying much.
Shannon: Actually, Purdue's had a good season so far: they're 4 and 1.
Mom: Oh. So who is playing in this game?
Shannon: Notre Dame versus Pitt.
Mom: Who's ahead?
Shannon: Notre Dame.
Mom: Are ... they any good... this year?
Shannon: Well, Purdue beat them last week.
Mom: We've had this conversation before, haven't we.
Shannon: Yeah, we have.
Mom: Oh....
Shannon and Mom: (laugh.)

So, Karen, my question to you is.. Who's on First?????

Shannon

From Mewaterbro

Just like you folks to be thoughtful enough to give each individual time for each time zone; I always get confused figuring it out when only Eastern time is given--"time-zone impaired," as a friend called it. So--thank you for another one of your many acts of thoughtfulness toward your readers. --Margie

Editors note: We can't take credit for this. Alzjane198 did it on her own but now that we know it helps, we'll try to continue including all the time zones.

Again we say Thank You for your contributions. Remember we might not get them into the very next issue but they are saved for future issues.

Keeping you in our hearts and prayers,
Karen
and
Jamie