Welcome to the New Year!!! This is a bit late in coming from us but we have been a bit busy. Our Miss Karen is now Mrs. Karen. The pictures she sent were of a bride and groom so happy they looked like they were going to burst! Congratulations to Karen and her husband Kevin! (editor's note: Karen's Kevin is not the Kevin who is our website manager!) In my household we had a great Christmas and were looking forward to welcoming in the new year. We had a catastrophe instead. On December 29, my mother fell off her porch and down about 4 stairs and hit her head. She was in Intensive Care for almost a week with a massive deep brain bleed. Her body was also all out of whack. She had renal failure, her pottassium was very high and her sodium was very low. There for a while we didn't know if she would make it but she is pulling through. She was transferred to a skilled nursing facility for rehab and has made tremendous progress. She is walking and doing most everything for herself. She is supposed to use her walker but sometimes forgets and will take off without it. There are still some problems with problem solving and finding correct words as there is still a lot of blood to be absorbed back into the body. We won't know for a long time whether these problems will remain.
Mama will be released from rehab on Tuesday. I think I mentioned in the last newsletter that we were telling Mama to start thinking of living with us. Well, this was all taken out of our hands. Mama can no longer live by herself. She will be coming home to live with me and my family.
The only problem I can see so far is that she has been put on insulin for her diabetes instead of the oral medications. I've never given anyone a shot and don't like to see people get shots. The nursing home doctor gave me a syringe and told me to get an orange and to practice. I have that part down pat and this morning I get to go in at 8 am and give Mama her shot under their supervision. I'm a nervous wreck even though Mama reassures me that it doesn't hurt because the needle is fine and sharp.
I have no doubt whatsoever that I can depend on you all for the support I will need as I begin another phase of caregiving. I will hollar for your help when I need it.
The Ribbon Finishes #6!!
2002 is behind us and we look forward to 2003 for many reasons. The Ribbon web site has a new look(Link: http://www.theribbon.com/ ), we have received almost 30,000 hits and our mailing list continues to grow.
One of the factors in our growth has been Top Alzheimer's/Caregiving Sites, brought to you by A Year to Remember(Link: http://new.topsitelists.com/bestsites/bpsibley/top sites.html ). This web site offers over 150 web sites for caregivers and this year The Ribbon has finished in the top 10, at #6!
I would like to thank the entire Ribbon staff...Jamie, Linda, Micki and Kevin....for their selfless efforts over this past year and the ones before. In spite of whatever their other responsibilities are, they always come through and I know it is because in their hearts all of you have become part of The Ribbon family. You count on us being here for you. And we are! We all know of the daily struggles of caregiving firsthand and we know that sharing is the only thing that helps.
Do check out the TopSites(Link: http://new.topsitelists.com/bestsites/bpsibley/top sites.html ) list; there are so many good ones there and so much to learn.
We look forward to continued growth at The Ribbon in 2003 and thank all of our Ribbon readers for their support.
In Passing: Those We Must Remember
It is with deepest sadness that we write about the passing of Dorothy Fischer, mother of our dear friend Marge, on December 29th, 2002. Dorothy had suffered from dementia for over 15 years, and had spent the last 9 years living at home with Marge. After watching such a slow progression of Dorothy's illness, it was a shock to all of us to see her decline so quickly the last month of her life.
We are quite sure most of you have never heard of Dorothy or Marge. We would like you to know how special they are, both to us, and to The Ribbon. It is through their eyes that we have seen this disease, from beginning to end. From the first signs of "where's my keys, where's my medicine, why are you here now?" to the endless repetitive questions, the confusion, the pacing, we have seen it all. We remember the lighthearted moments, such as the times Dorothy would introduce Kev as "my cousin Fred" and the lovely sound of Marge and her Mom singing "Let Me Call You Sweetheart" long past the time Dorothy could still hold a conversation. Most of all we remember the endless love and care Marge gave her Mom, day after day, year after year. We saw Marge give up more and more of her own life in order to meet the needs of her Mom. There was not one thing Marge could have done any better during all these years.
We have seen dedication like this before, with my Mom, Kev's grandmom, as she cared for her husband for 15 years after his massive stroke. We both knew how incredibly difficult the role of a caregiver is, but until you have seen it firsthand, and sometimes not until you see it again, do you realize what is involved. Perhaps this is why, when Kevin first went online 6 years ago to find Alzheimer's information for Marge, he immediately "connected" with Karen and Jamie and wanted to get involved in the wonderful work they were doing with The Ribbon. Within a few months, TheRibbon.com came to be, and as you know has continued to evolve and grow through the years. Were it not for the inspiration of Marge and Dorothy, TheRibbon.com as we know it would not be here. We thank both of them, for showing us love, compassion and selflessness, and in their honor we will continue to do whatever small things we can to help all caregivers.
It's Just a Figure of Speech
by Mary C. Fridley RN, C
Communicating with dementia or stroke impaired loved ones can be a challenge. We take the ability to communicate for granted using its many forms to relate our needs, understanding, and emotions. We don't realize how essential it is to life until faced with the inability to speak, read, write, or comprehend. Just think about wishing someone "Happy New Year" for example. It slips right off the tongue. But think how difficult it would be if you had laryngitis and how frustrated you would be for just that short amount of time.
The inability to communicate, also known as aphasia, is an isolating experience that can result in severe depression. For caregivers the experience is no less frustrating and is an adventure in the practice of patience.
There are three kinds of aphasia: expressive, receptive, and global. What kind someone has is dependent upon where in the brain damage has occurred. In expressive aphasia speech is limited but the spoken word is understood, reading is usually intact but writing impaired. Receptive aphasic persons have difficulty understanding the spoken or written word but can speak. People with global aphasia are the most compromised. They are unable to speak or write nor can they understand the spoken or written word. Love ones with Alzheimer's disease will traverse through each one as the disease progresses.
However, no matter what the cause of impairment it's important to keep the lines of communication open. Loved ones must be encouraged to communicate and caregivers are encouraged to be patient.
The first thing to do is find out if your loved ones can hear. Hearing impairments are common with aging and can make persons appear cognitively impaired. If stroke is the cause they should be evaluated by a speech pathologist. An evaluation will determine the extent of impairment, best method for communicating, and a plan of action.
Use the "person centered" approach with the emphasis on the person with impairment, not on the person with impairment. In other words, see your loved ones for who they are and focus on their abilities, not on their disabilities. Always get their attention and communicate at eye level while maintaining eye contact. Speak slowly and calmly using short sentences and simple terms. Avoid talking down to them and don't rush a response. Don't shout! The inability to communicate doesn't mean your loved ones can't hear. Shouting also may be interpreted as yelling and can precipitate an angry or defensive response. Dementia affected persons are known to mimic body language, so pay attention to that, too.
The power of touch to communicate feelings can't be denied. Touch is a form of communication that's fundamental to life. Gently stroking, massaging or holding hands is comforting and anxiety reducing and may ultimately be the only form of communication your loved ones understand.
Don't be afraid to use humor. When used appropriately it can lighten heavy moments and boost spirits. Laugh with, not at, your loved ones and learn to laugh at your own foibles.
Be patient, any type of communication impairment is frustrating for both of you. Sometimes it may be best to just step away and try again later.
Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years experience in the geriatric health field. She provides community workshops and motivational seminars on caregiver, eldercare, and aging issues as well as writes articles and caregiver advice columns for websites and publications. 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: firstname.lastname@example.org (email@example.com).
Caregiver's Beacon Newsletter January 15, 2003
Remember back in October when public television aired the caregiving documentary "And Thou Shalt Honor"? Well, several television stations are re-broadcasting it over the next few months. I was so happy to be able to see it when it first aired. It is heartfelt and informative. It is also accurate: no fantasies about Super Caregivers and the quick ABCs. Maryland Public Television (which reaches viewers in Maryland, Northern Virginia, Washington DC, Southeast Pennsylvania, and Delaware) is showing the program on Wednesday, January 22 at 8:00PM EST.
Right after the show, viewers will be directed to our chatroom to talk about the program and to connect with each other in real time. So many professionals are curious about how our online support groups work. This gives us a huge opportunity to help people who are just coming to terms with their caregiving roles by giving them a safe and supportive place to learn and share. Please welcome these new chatters with open arms. Hopefully this will become a model for future outreach and support projects.
Rich O'Boyle, Publisher
Delaware Valley Chapter Alzheimer's Association
We are thrilled and honored to announce that Barbra Streisand has chosen us as the beneficiary of the Platinum Guild International's second annual Platinum Women With Heart(tm) program. Barbra Streisand has opened her heart and graciously designed a platinum heart pendant in our honor. From January 27th through February 10th, an online auction will take place in conjunction with Sotheby's and proceeds from the sale of her platinum heart pendant will be designated to the Alzheimer's Association.
We are grateful to Platinum Guild International for creating and championing such a wonderful program and to Barbra Streisand for choosing the Alzheimer's Association to benefit from it. Platinum's Women with Heart(tm) auction which will take place online at Sothebys.com from January 27th through February 10th, with a public auction preview at Sotheby's in New York City on February 4th from 10am-5pm, and in Los Angeles on February 7th from 10am-5pm. Anyone in the world can bid on Barbra Streisand's platinum heart pendant for the Alzheimer's Association. To view the heart pendant, please visit www.preciousplatinum.com(Link: http://www.preciousplatinum.com/ ).
Again, we thank Platinum Guild International and our "Platinum Woman with Heart", Barbra Streisand for supporting our cause.
Walt Mateja, Ph.D.
Received via DASNI(Link: http://www.dasninternational.org )
Also from DASNI(Link: http://www.dasninternational.org )
New Ideas Energize Alzheimer's Battle
Many researchers are questioning the old hypothesis about
New Ideas Energize Alzheimer's Battle(Link: http://www.nytimes.com/2003/01/14/health/14DEME.ht ml?pagewanted=3&ei=1&en=935262628fe059e8&a mp;ex=1043593939 )
A Special Dedication
Dedication to My Beloved Mom...Mary Korpi:
Oh my precious ever so loved mother...how it breaks my heart to watch you slip away from me more with each passing day...if I could only turn back the hands of time and stop this terrible journey! I find it hard to believe that in a couple of months you will have been in the nursing home for two years. It has been two long years since you have stopped living here with me..I see your smiling face every where I look...I hear your voice calling out my name... I thank God for giving us this time yet to be with one another..I savor and hang ever soo tightly onto every precious second...each precious moment... I can barely recognize you now...your bright eyes clouded so often with fear...your strong arms and hands which held me so tight and calmed my fears so weak and frail..your laughter once so loud now so very rare... I live in your world with you now...trying to understand what you are so desperately trying to tell me...sometimes only being able to communicate with you through a gentle touch or soft angel kisses across your beautiful face... It kills me when you tell me that you are soo ashamed because you still realize at times that what you are saying makes no sense..when you tell me that you are just going to stop talking because you know you are going insane... Even when you no longer recognize me I shall be there by your side...it will not matter if all you can do is stare at me....I will know that some how some way you still know it is me... It has been an honor to have you as my mother and my best friend. You have given me more love than some people ever receive in a life time...I have truly been blessed with you. I pray that God will allow me to ease your fears and help you to go gently into His loving arms one day. I love you with every breath in my body...my beloved mother...my treasured best friend...
Printed by permission of firstname.lastname@example.org (email@example.com)
From Lavernwest@aol.com (Lavern)
Dear Jamie and Karen:
From firstname.lastname@example.org (Mary Emma Allen)
Dear Karen, Jamie, Kevin and everyone else who makes The Ribbon happen,
You're doing a great job with your site and newsletter, and providing much needed information and a place where caregivers know someone cares. As you mentioned, Jamie, so often it's one family member with his/her spouse who has the care for the person with Alzheimer's or dementia. They need to know there are others out there who care and will give them support.
Even though it's been nearly two years since my mom died and nine since my aunt left us, I continue to be involved. I write and speak on the topic because I know others need to know they can survive. And to let them know that they can enjoy that person with this condition, even though their loved one has greatly changed.
It would not have been my wish that Mother become afflicted with Alzheimer's, but it was something out of my control. I am glad my family and I were there to care for her, first in her home, then ours, and finally in the nursing home. In spite of the frustrations and tiredness, we gained so much from caring from her...my daughter and her family, as well as my husband and myself. We found that love can become deeper for that person when you're called upon to administer to their needs.
May all of you who are caring for a loved one with Alzheimer's, dementia or related disorder, look beyond the frustrations and tears and find joy with them during 2003.
From email@example.com (Jean)
I love your newsletter - but the "A" things confuse me when I'm trying to read. What are they? Every sentence seems to have an A with a little hat on it at the beginning or end.
Editor's Note: We have had several people say this is happening when they get the newsletter in email. Kevin is trying to figure out why this is happening and trying to come up with a cure.
The real reason I'm writing is to address phone cards. I don't know which one you use, but we have found the cheapest card ever - it's ATT purchased at Walmart. The cost per minute (even in state calls!) is 3.7 cents. You can add minutes easily on a charge card. It's so cheap we never, ever use our long distance carrier. Now the ATT purchased at Walmart is not as cheap as Sam's club. (The initial card might be 4cents per minute but the additional minutes purchased on line or by phone are definitely 3.7 cents. There are no extra fees unless you use it from a pay phone and then they charge you the equivalent of 5 minutes time. If you call to Canada or to a foreign country, there is a prompt which will convert your minutes to the foreign country - they just announce it to you.
Here's another hint about calling cards- I typed up the accesss number and pin number to each of our phone which I typed up on the computer. It saves getting the card every time you use it.
Keep up the good work..
Jamie's note: I also use the AT&T card. I have found it to be the best deal also. At Sam's Clubs you can get a 600 minute card for a little over $20. My sister and I share the number and the time. That much time will usually last us a good 2 1/2 to 3 months depending on what is happening in the family.
From DTimeisprecious@yahoo.com (D)
don't give up the ribbon, I have just started receiving it and it is a joy for me. just to hear from someone who understands and goes through some of the same things.
From Ziggy754@cs.com (Ziggy)
I just love the Ribbon. Just when I am feeling down and so alone I read this issue and remember that there are many others out there in the same place that I am now. My mother has vascular dementia and has been in a nursing home since July 10, 2002. Each day she loses a little bit of herself and it is so devastating to watch her.
So keep up the good work and, even though I cry when I read the articles, they are a great help to me.
From Damit2@aol.com (Ziggy)
Jamie, Just finished reading the "last of 2002" and
as usual it is great!! So neat that you've come so far! it's a
real help to so many persons. I read with interest your mom's
problem of getting around (short of breath)..I have the same
problem with my emphysema. I find it's much easier to get around
if you have a walker....but not the old type with two small
wheels..Need four wheels (a small grocery cart works well) or
the new walkers you can turn around and sit on
From firstname.lastname@example.org (Susie)
My name is susie, email@example.com. Just wanted you to know that tho I am a new reader, we ran your web address in our volunteer newsletter, so others might tune in, so to speak. I am coordinator of volunteers for Hospice of Midland, Midland, TX. I work with at least 100 volunteers, so bet someone tunes in.
My spouse has hydrocephalus and/or early ALZ, according to neuropsych evals from an emminent neurologist in Dallas...he does really well most of the time, but I experience enough to truly understand what others are dealing with or talking about..just to say your newsletter is appreciated...hope the upcoming year will bring many rewards...susie m
Editor's Note: We Love hearing that you are sharing The Ribbon! That is something that a lot of our readers do, whether it is printing out copies and giving to family members or friends or sharing it in newsletters as Susie has done. As long as it helps someone, we do not mind at all!
From Marvhigg@aol.com (Susie)
I hope I am getting to the right person. In this month's newsletter you mentioned that your mom cannot bend over to put on her panties. Well my mom, who has alz., can still put on her panties in a most incredible way. I found her with one pants leg on the waist and the other leg through the waistband. I have never seen such a feat. She is tall and thin and still quite agile in spite of having broken her hip in 1-02. Some of her attempts at dressing are hilariuos,that is, when I am not in a hurry or in a bad mood. I can lay her clothes out for her and she will fold them, put them away and put on something entirely different. I dress her most of the time but when we are not going out I let her dress herself. Just thought you could use a little humor. My husband has also been dx with alz. too. He is on reminyl. It has helped his personality, but the memory has not changed.
Well take care- Gloria
From Ellenbabe1@aol.com (Ellen)
Just wanted to stop by and tell you how wonderful I think your web site is...
Nanny Dean has told me so much more about your wonderful work and I am looking forward to reading your issues on a regular basis and catching up on past issues...
I placed a memorial dedication tonite for my mom...she has been in a nursing home for almost two years and remains my entire life...thank you for giving us a place to memorialize and honor our loved ones.
I wish I had had a computer while I was caring for mom at home...I could have reached out to so many and not felt soo alone..I could have found your site as well as the alzheimers and caregivers posting boards on AOL...
At least now I have found all of these wonderful people..I just
hope that I will be able to offer some comfort to others as well.
The beginning of a great new year and look at all the people who wrote in! You just make our hearts sing! We hope you will continue to contribute to this YOUR newsletter with hints, tips, stories, articles, poems, questions, suggestions or anything that you might wish to share with others who walk in your shoes. Remember The Ribbon symbolizes the way we are all woven together in our journey as caregivers!