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The Ribbon - Care for Caregivers
Volume 7, Issue 22
November 16, 2003

www.TheRibbon.com

1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

What a stressful and hectic but very blessed two weeks I have had.

My first day at CNT school I left there thinking, "What have I gotten myself into?". We were told when we registered that we would have 2 hours of homework each night and that was ok with me. When we go to class our instructor tells us, you've been told two hours but it's actually more like 5-6 hours of homework. We were given our Modules book, lots of handouts and a skills book. Well, we had to read and study 4 Modules each night, write at least 4 skills 5 times each each night and these skills had anywhere from 12 to 28 steps in them. Talk about being overwhelmed!

As I studied the modules, I realized that I know most of this stuff from having been a caregiver and learning from Home Health Aids or Hospice. I did learn a whole lot more in class though. The skills are to teach us how to do things the proper and safe way and to keep infection down. We had to not only write them but we had to recite them and practice them in class. Whew!!!!!

So many of you wrote or mailed me cards to show your support and to give me a boost when I most needed it. Each time I got a note it spurred me on to do even better. What a terrific group of people you all are....though I already knew that.

I am proud to announce that my written GPA is 96.3 and we were told that never before had this instructor given a skills grade more than an 89. Well...one special lady in class got a 95 and she definitely deserved it. I made a 92 along with one or two others, a couple made a 90 and the rest made 89. I feel very proud of myself for doing so well since it's been 30 years since I've been in school. A part of me also feels like I was doing all of this for you too and I've done y'all proud.

On Monday, I start my clinicals which will last a week. This will be going to a Nursing Home and shadowing the CNT's there and doing the hands on work. We will be graded as to how we do there also. A part of me is asking if I really want to do this work again and a part of me is so very eager to get to caregiving again. I think the eager part is easily winning out.

The Blessed part of these two weeks has been that I've met the greatest group of women from age 18 to 48...(I didn't ask the age of our instructor). Our instructor is truly gifted and always encouraged us when she knew we were at the verge of pulling our hair out. This not only was a learning class but it was a very spiritual class. We were made up of several cultures and we all bonded like we were sisters. When one was struggling in an area someone just naturally went over to lend a helpful hand. We had fun while we learned.

I feel that I was led to this particular class and I'm so glad I attended. Just think, a nomination, an award, a meeting of the Professional Caregiver of The Year, a phone call to her about a job, the recommendation of this particular school, and I'm pretty sure of a job where I know I am needed and wanted. It's all just amazing to me.

After clinicals, I will take my state boards so I will continue to keep you posted!

Hugs,

Jamie


GoF 2003 Memories

The pictures from Gathering of Friends 2003 are now on the website. Go take a peek and see some of the fun things we did. If you've communicated with anyone that went you can now see their picture.

Gathering of Friends 2003 Photo Album


Feeding Tubes

To be or not to be, that is the question...

Watching a loved one die is a helpless feeling and it's normal to attempt to prolong life by trying life-sustaining measures even in the face of futility. In end-stage Alzheimer's disease a common dilemma caregivers may face is "Should we put in a feeding tube or let Mamma starve?" This question begs an answer when Mamma stops eating, loses weight and her skin starts to break down. It is a fact that poor nutrition is a culprit in weight loss and pressure sores. It is also a contributing factor to poor immune response and higher risk of infection.

By bypassing the mouth a feeding tube makes it possible for nutrition and medicine to be given directly into the stomach or small intestine. It is also used to prevent choking and aspiration pneumonia. Most feeding tubes are inserted into the stomach through the abdominal wall - known as a percutaneous endoscopic gastrostomy tube, or PEG for short. Infection at the insertion site is a complication and aspiration pneumonia still a possibility from gastric reflux and aspirated saliva. It can also be very uncomfortable and a confused person may pull it out, causing significant trauma.

I recently heard a physician from John's Hopkins School of Medicine speak at an Alzheimer's conference about the use of feeding tubes in end stage AD. Actually, that is what sparked my writing this article. He referred to several published studies that produced some eye-opening results. It seems they concluded that tube feedings did not extend life -- in fact, most study participants lived just as long or longer when hand fed; they did not improve the healing of existing pressure sores; and there was no evidence of reduction in infection. I commented that I expected someone dying of AD to naturally stop eating as the body shuts down in preparation for death -- the same response non-AD dying persons exhibit. According to Hospice, when a person is dying body systems slow down, appetite decreases, and food and fluid may be refused. Although he was not a proponent of tube feedings, his response baffled me. He said that if his children stop eating, he knows they are sick, thus implying we should respond the same way to terminally ill AD persons -- treat not eating as an illness. Granted, whenever there is a change in behavior a medical cause should be suspected. But once ruled out, shouldn't we consider that the person is going through the normal physiological changes inherent to the dying process and support her through this journey of life into the next? I think what bothers me the most about his response is the sterile medical attitude that dying needs a treatment intervention. This attitude ignores the third-self: the spirit. The spirit, or soul, is 'all knowing' on a whole other level and remains an integral part of a person even when cognitive awareness is diminished. When a terminally ill cancer-affected person is in the last stage of life, comfort, palliation, and spiritual nourishment are the main concerns - everyone is painfully aware that treatment and cure are not possible. The person is supported through the process and allowed to pass on in comfort and with dignity. Don't our loved ones with Alzheimer's disease deserve the same kind of care?

When faced with the dilemma of whether or not to insert a feeding tube we need to ask ourselves: whose needs are we thinking of, our loved one's or our own? Some intense soul searching must be done in order to avoid making a decision that satisfies the need not to lose her while neglecting her need to move on. We must also examine our personal feelings about death and consult with a Minister, Priest, Rabbi, or other spiritual leader if need be.

Some health care professionals are reluctant to admit someone is close to death and try to forestall it as long as possible, so ask about prognosis and life expectancy. Be sure to ask what the expected outcome is and if inserting a feeding tube will allow your love one to die more comfortably. And of course consider her wishes -- is this something she would want done?

It is hard to lose someone -- death seems so final -- and end of life decisions are not easy, but none are wrong if done for the good of the dying person. We may be able to delay it, but death is a fact of life here on earth and making peace with it is the ultimate in letting go.


Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.


WARNING!!!! HIDDEN TRAP!!!

These are the words my alzheimer mother has written on a little piece of white paper taped to the top of the silver Nordstrom's box where she keeps her costume jewelery. She put it there so no one would steal it, or be tempted to open it. Nevermind that the only people who go in her room are myself, and Izeta, the russian-speaking housekeeper, who would not be able to read it anyway.

I call her my alzheimer mother, because my alzheimer mother is not the same mother who I knew growing up. The mother I had growing up was fastidious about her appearance. Her handbag, belt & shoes all had to match. Lipstick, makeup & hair meticulous before she would even think about stepping out of the house, even to go to the market. Not like me, who wears sweats & t-shirts, pulls my hair back into a ponytail & throws on some lipstick as my car warms up. As I go from task to task, from being a single mom of my beautiful teenage daughter, to being the mother of my alzheimer mom, the endless list of tasks goes on and on and on. If I stop for even a moment to think about it, the enormity of it all is overwhelming. So I don't allow myself that luxury, to feel sorry for myself for even a minute, for that is a minute taken away from another task that needs to be done.

My alzheimer mother wears the same clothes everyday because she has no memory of wearing them the day before. To her the day before today could be in 1958. She doesn't comb the back of her hair because she doesn't see it. What has remained the same in my mother & my alzheimer mother is that she cares about me still. She is happy to see me when I visit, and only once so far did she think I was one of my sisters. I know the time will come when she won't know me at all, I know it will happen but no matter how much I try to prepare myself, it will be most difficult.

This is how it is for now. In the beginning, after I began to understand, after I stopped being in denial about all the strange things that happened, I started to grieve for a loss that I could not explain.

On the day when mom was moved from her home of 52 years to a board & care by my oldest sister, we watched the sun go down that summer evening & we both knew that life as we had known it was changed forever. A new, scary, challenging life was unfolding, with no instructions.

"You've got to step up to the plate", my best friend said to me. She was taking care of her ill & dying mother at the time. She knew that I could do it. I wasn't so sure. But we do what we have to do. We do the best we can with what we have & learn all we can about what to do. We try to do what we think is right, what we pray daily is the right thing to do for the one we love, the one who loved me when I needed it most, when I was the child and she was my mother. I grieve for a loss I cannot explain.

Contributed by Valirose@aol.com


Dementia Advocacy and Support Network

Something Very Special To Check Out

I just left a wonderful hour of chat! My friend, Jeanne Lee, invited me to attend the DASN chat this evening! You can find this by going to DASNI: Dementia Advocacy and Support Network International. I met seven of the most wonderful folks there. They made me feel right at home. The chat started at 6:00 p.m. pacific time and it was an action packed hour. Since these are folks who have been diagnosed with Alzheimer's or other forms of dementia, I took a huge chance and asked if I could ask them some questions. This is the result of my inquiries:

I asked what frustrated them the most about their diagnosis. Many said the doctors and the feeling they really don't know how to help them once they are diagnosed. Other responses ranged from getting others to understand, not being able to drive, being rushed, the way folks look at them after diagnosed, trying to find the right words for what they mean and the very unthinking comments (gee, you look well, are you feeling better now?)

Since their concern seemed to be the need for folks to understand, I asked how this could be resolved. Their resounding answer - EDUCATION - especially for those in the medical field! They felt this could be accomplished by the carepartners helping to raise awareness by their experiences.

I asked what has been their most favorable reactions from folks once family, friends, and loved ones became aware of the disease. The responses were quite touching. "My wife still loves me." "Meeting new friends by being able to educate them through conferences." "I am able to spend more time with my hubby." "When someone who has been to my web page tells me I have helped them." "That we have helped ourselves by helping others." "Receiving hugs after I have done my talks."

Since everyone in chat was so very patient with me, I took my chances and asked one last question -- what tips they might want to pass along to our Ribbon readers. I was told not to rush folks, that great patience was needed. They felt care needed to be taken when speaking with the AD person not to raise your voice. Hugs receivedare a huge help. They felt informing themselves and their loved one/caregiver about dementia was very important. What a great hour! I hope these ideas help!

Always,
Linda
The Gathering Place @TheRibbon.com

http://www.theribbon.com/GatheringPlace/

EMail: Linda@theribbon.com


"A Time to Remember"

Airs November 23 on The Hallmark Channel

(Source: Newsday) On November 23, Doris Roberts of "Everybody Loves Raymond," will play a wealthy matriarch with Alzheimer's in the Hallmark Channel movie "A Time to Remember".

The film, co-starring Dana Delany of "China Beach" fame, will be screened for Congress Wednesday. Roberts commented, "I was really excited to play somebody in the early throes of this disease, which will soon have 15 million people suffering from it in the U.S. Attention must be paid to this problem."

Contributed by jleehawaii@aol.com


Huge News!

I have some way huge news for y'all (my heart is still in Nashville)!

At GoF '03 there were two huge announcements I had the pleasure of sharing with everyone. The first announcement: The Gathering Place has a new name...The Gathering Place @ TheRibbon.com - it will still be referred to as GP. We have a new chat room and a new look for the chat page!

And the way hugest good news I was able to share... Leeza Gibbonscontacted me about utilizing GP for her chat service in her new venture called Leeza's Place

Ms. Gibbons' mother has Alzheimer's and she lost her Grandmother to the disease as well. Leeza's Place is not only a website. This month, in New York, the first live Leeza's Place was opened. Through the site and the the first ofmany Leeza's Places to open across the country, this is a way to help educate, empower and give energy to families, patients, and caregivers of those with diagnosed with memory disorders, primarily those with Alzheimer's. It is a huge effort! Please visit the site and offer your encouraging thoughts to Ms. Gibbons and her family!

Always,
Linda
The Gathering Place @TheRibbon.com

http://www.theribbon.com/GatheringPlace/

EMail: Linda@theribbon.com


Links

Please consider including this in the next issue of The Ribbon.

The fingerprints really GOT MY ATTENTION!

PRESS RELEASE (PR Web) Alzheimer's Early Warning Signs Often Overlooked, Misunderstood
also at AlzHelp.com

Alzheimer's Early Warning Signs Often Overlooked, Misunderstood

A new report released as part of National Alzheimer's Awareness Month contends that most family members miss early signs of Alzheimer's Disease in a loved one -- simply because they don't know what they should be looking for.

Contributed by CareVoice@aol.com


WebMD: Antibiotics May Slow Alzheimer's

The race is on to develop drugs to slow the progression of Alzheimer's disease, with dozens of new treatments under investigation. Now, intriguing early research suggests that cheap and effective Alzheimer's drugs may already be sitting in your medicine cabinet.

Contributed by JRNYWMN@aol.com


American Stroke Association TIA: A Warning Not to be Ignored


Friendly Home Resource Centre is a five year old Canadian business committed to enabling senior and disable people to age in place.

To that effect we have developed a guide called:

Solutions for people with Alzheimer's disease

Made with the intent to increase the safety and security of AD persons; to adapt to their wandering, pacing and confusion about where they are; to prevent or reduce their anxiousness and restlessness; and to meet caregivers' needs.

Please visit us at http://www.friendlyhome.net.

Editor's note: This site has a lot of good info on making things safer for your loved one.


Sears presents Health & Wellness: Wheelchairs, Electric Scooters, Adjustable Beds

Who would have thought that Sears would have products that we all use. There are many more things here other than those listed.


Email Bag

Hello Jamie,

I am not sure if this email is the correct avenue to use to ask for help from other Ribbon subscribers but it is the only place on the web site I could find where I could send an email.

My husband and I would like to ask anyone out there who is a caregiver if they have any advice about how to get an Alzheimer's patient to bathe. We have been the caregivers for my husband's aunt for over a year. She was formally diagnosed with Alzheimer's about two years ago. Her descent into the disease over the last year has been rapid. Our goal is to allow her to live in her home for as long as she can physically manage it and we currently are very fortunate that we have caregivers that stay with her for several hours a day to give us a break. Phyllis is 81 years old and is deaf. She became totally deaf over 40 years ago, the result of contracting an infection in the hospital after a mastectomy. We feel as if this makes our situation as caregivers somewhat unique in that many of the tips we read about in trying to make her life as comfortable as possible do not apply to a person who is deaf. She did not let her deafness prevent her over the years from being an independent person. She ran a small rental business and was known as a "crafty" tennis player.

So, the result is that she is an Alzheimer's individual who is very strong-willed, very suspicious, and very difficult to deal with. Our main issue at this juncture is getting her to bathe. We have tried many avenues over the last several months to get her to bathe; we have made her shower area we think safe and comfortable for her,I have offered to assist her in bathing as well as her other caregivers who are all women. She refuses help in bathing, she is I know uncomfortable unclothed in front of others due to her mastectomy. Obviously, we are at the point where we are concerned that she will get a bladder infection or some other illness due to the fact that she is not keeping clean. I do her laundry and can tell you her underwear are terrible, she urinates frequently as anyone her age does. The things that used to motivate her to bathe no longer offer her motivation, going out to dinner, having friends over, etc. We are at a loss as to what to do at this point. We are not looking forward to the scenario that would occur if we have to somehow force her to bathe, we don't even know how we would manage that. Do any readers out there have any tips that have worked for them in bathing, keeping in mind we are dealing with a deaf person, that would help us?

Thank you so very much for taking the time to read this and hopefully forward it to those who may be able to help us. I look forward to my issues of The Ribbon since they help to give me perspective and understanding of what we are dealing with.

Sincerely,

m.lee160@verizon.net


Jamie's reply

I do agree that you have a unique situation with your Aunt. I have forwarded your letter on to a lady whose screen name is _________. She was caregiver to her mother who was also deaf. She is a very nice lady and will hopefully give you some help.

One thing I learned to do was to not give my loved ones a choice when it came to bathing. I would go in, get the water ready, towels out, etc., then I would just tell her that it was time for her bath and it is all ready for her.

As far as the mastectomy goes, get her some t-shirts and let her keep one on while bathing. Let her bathe under the shirt. That may make her more comfortable. And if necessary have her put on a clean pair of panties and tell her she will have to put her hand inside the panties to wash her private area. Then when she is finished you can hold a towel (buy some beach towels...very helpful) so that she can take the shirt off first and put a towel around the top and then hold the towel again and let her take off the panties. Make sure you have a warm wet washcloth so that she can be sure to rinse the area so there is no soap left behind. Then she can dry and put on clean panties.

I know this is a pain but once you get the routine down it's not as hard as it sounds. This provides her with her dignity and helps her with bathing.

I hope this will help you.

Jamie@theribbon.com

I read the Ribbon from beginning to end, I like to hear about others going thru the same things I am going thru. Makes me feel not so alone. No one really understands this unless they are going thru it. My friends know what I do, they really try to get me to put my mom in a nursing home. But I feel I am the one that will know when the time is right for that.

Anyhow......... To Jamie, you are doing something I have thought about doing for a very long time!!! I think it is so very great you are taking the leap and doing it!!! When you write please share what you are doing, I would love to follow your educational path.

To the lady that went to the gathering, got lost, worried about leaving her mom, and then lost her mom. I truly believe we are where we are, and do what we do because we are supposed to be doing that. I think you needed all the support and friendship to be able to go home and face what was coming. I think from your mom's smile, she knew you needed it too. Sorry to hear about your mom. I have to believe they are in a better place.

To all of you out there taking care of loved ones, I commend you.

There are some days I just want to lay down and give up. But somehow I get the extra push and get thru the day.

Sincerely, Laura

Currby4@aol.com

We hope you have a Happy, Healthy and Safe Thanksgiving!
The Ribbon Staff

Hugs and Peace,

Karen and Jamie

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