Volume 4, Issue 6 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease
Volume 4, Issue 6
September 17, 2000

Here in Tennessee we are experiencing the wonderful cool days of Autumn. I think this is my most favorite season. I have a bit of a dread coming up though and I need the help of you, my fellow caregivers. Winter is soon upon us, therefore it will be too cold for my grandmother to do her walking. She is starting to get a bit depressed so I am thinking of an Adult Day Program. That is where the help is needed. She says she wouldn't be interested in going to a "Senior Center". How did you get your Loved One to attend? Did you just take them for a visit a couple of times and let them become accustomed to going? I'm in a bit of a quandry and need some helpful hints. Not only will I read and use your hints but I will reprint them in the next issue in order to help someone else who is in the same predicament.

You can send your replies to KMenges581@aol.com since Karen keeps up with all the correspondence. She will forward everything to me. I know she will love me for this added work.

Thanks in advance, Jamie

Veterans Alert

One of the biggest issues in a family's life when caring for an Alzheimer's patient is how to pay for the cost of care. I would like to relay to you all how my family was able to get some help. And from what I have found out, not too many people are aware of this assistance.

My father, a World War II veteran, died in 1993. A year later, Mom was diagnosed with AD. In 1998, I relocated myself 400 miles to help my brother care for our clearly failing mother. We knew that the day would come when we would need to hire help for her care and we knew that eventually we would have to place her in a facility that could give her 24/7 care. Question was, how do we pay for this?

When I made that move, I took some time off from my job to help get things under control at Mom's. One of the things I did was to look very hard for options to assist us in paying for her care. I found out that as the widow of a veteran, Mom is entitled to a Widow's Benefit. I contacted the local office of the Veteran's Administration and began the long process of applying for that benefit.

At first, when we hired a part-time daycare worker, that benefit gave us half of what we needed to pay her. And then Mom was reevaluated when she was placed in an assisted living facility. At the present time, we receive a check that, again, covers half of the cost of that facility. Mom's Social Security covers the other half.

Be aware that it is in this case that we are fortunate enough to have half the cost covered; some facilities are more expensive and the benefit will only pay part, not necessarily half. Every case is different and there are limits. But it is certainly worthwhile to investigate.

If your loved one is a widow, and her husband is a deceased veteran, there could be some assistance available. Contact your local office of the Veteran's Administration and ask.....Widow's Benefit.

Be prepared for a long, drawn out process and lots of paperwork. But it might pay off for you and your loved one, as it did for my family.

Anyone who has any questions may feel free to e-mail me.

Karen
Co-editor, The Ribbon
www.theribbon.com
Welcome to The Ribbon Online, For Caregivers & Families dealing with AD

Beating The System By Being Prepared Can Prevent Agony

DEAR ABBY:

It was about 3 a.m. The call came in as a signal 14. In laymen's terms, it means someone died. A 47-year-old, terminally ill woman had succumbed to stomach cancer. The call was close to the station so we beat the ambulance to the scene.

When we arrived, it seemed like her entire extended family was there. As we were about to enter the bedroom, the daughter asked if we were there to pick up her mother. We asked if they had DNR (Do Not Resuscitate) papers. She said yes, but hey were at the hospital. Instead of starting CPR (which is what we are supposed to do when the DNR papers are not present), our paramedic called medical control, the doctor in charge of our service. Fortunately, he agreed that CPR should not begin.

Abby, this scenario has happened more than once, and I am getting a little angry. My anger is toward the system that sometimes puts family and loved ones between a rock and a hard place. The hospital and doctor know that a copy of the DNR papers has to be with the patient at all times or they technically don't exist. Instead of letting their mother die in peace, that family almost experienced the sight of her receiving advanced-care life support. For anyone who is not aware, this is far more than giving chest compressions and mouth-to-mouth. She would have had a tube down her throat to aid in breathing, body wrenching shocks would have been given, IV lines, drugs, etc.

When my stepfather lost his battle with lung cancer, my mother had worked everything out in advance with the hospice facility. All she had to do was call hospice, and they sent a medical examiner. No ambulance. Just a peaceful, dignified way to deal with a sad situation.

Please Abby, tell your readers that when this happens to them, or to someone they know, to make sure they know what to do.

-- CARING FIREFIGHTER IN TEXAS

DEAR FIREFIGHTER:

You have taken care of that -- and graphically, I might add. Although some people want every effort made to be resuscitated, many do not. Those who do not should keep in mind your warning that for their wishes to be obeyed, they must be written down, discussed with family members and doctors, and copies must be available. Thank you for your reminder.

From the August 28,2000 issue of The Tennessean

Editor's note: When I read this it brought back what happened when my grandfather died. He had a living will but it was filed at his doctor's office. My grandfather passed away on a Sunday morning and the doctor was out of town. Luckily we had kind policemen, firefighters, and a medical examiner, though it did take many phone calls and lots of talk before my grandfather was able to be released to the funeral home.

We did not have hospice care because my grandmother who at that time was in early stage Alzheimer's disease, did not want strangers in the house. She and I did all the caregiving.

Since my grandfather's death, sadly my grandmother has advanced in her dementia. I am proud of the fact that she did go to an attorney and get her DPOA's, her will, and her Living Will drawn up. I will be able to use Hospice Care for her when her time comes.

I hope everyone will pay heed to this article. Get all the paperwork in order. Keep it close by so you can grab it when necessary or carry it with you at all times. Until you have been through this you can't imagine the heartache it brings.

Jamie

Help Stop This Bill

Forwarded by HOST AHTH AC
from O BCH BUM

http://www.stopprpa.org/

Go to their website and write directly from that site. This is my letter, the first was a pretyped in format, but you can add anything you wish in the box, and sign the letter with sincerely or something and your name, it will go directly to your officials for your area.

FROM:
NAME: Kathy
ADDRESS:

This message was sent to:
Dear Senator Tim Hutchinson
Dear Senator Blanche Lincoln

Copy of message text:

I am writing to express my opposition to the Pain Relief Promotion Act (HR 2260/S. 1272) because it will inhibit health practitioners from properly alleviating pain. This misnamed bill will actually prevent pain relief rather than promote it.

Millions of Americans suffer chronic pain on a daily basis. Many patients require high doses of pain medication to regain comfort and dignity in their lives. Through fear of prosecution, the misnamed Pain Relief Promotion Act would, in effect, tie the hands of nurses, doctors, and pharmacists in their professional - and compassionate - decisions to prescribe pain medication.

Over 40 major organizations representing doctors, nurses, hospices, pharmacists, pain experts and patients, along with hundreds of nationally prominent experts in palliative care, law and bioethics, publicly OPPOSE the 'Pain Relief Promotion Act,' and so do I.

I find it ludicrous that our "leaders" would try to Hurt the people who put their trust in them by electing them into such an important office in government. We need Help, not deceiving misnamed bills which would tie up our medical community more, with more beauracracy to put road blocks in front of those people in pain who need it.

Sincerely, Kathy

Editor's Note: I deleted Kathy's last name and address in order to protect her privacy.

On Our Own Terms

Those of you who have been watching the PBS special "On Our Own Terms: Moyers on Dying" will be able to appreciate how difficult it is to put together the Death, Dying & Late-Stage Alzheimer's Disease Hot Topic. We started out with a few articles, book reviews and site links. At mid-month, I have added a few more items.

Of greatest interest are the two expert discussion groups that will be held in the Elder Caregiving Chat Room. These real-time discussion groups are unique opportunities to get together in a comfortable setting to discuss serious issues with top-notch professionals. We have also added two more book reviews: "My Mother's Voice" by Sally Callahan and "Hard Choices for Loving People" by Hank Dunn.

On Monday, September 18, Dr. John Carter of Mt. Sinai Medical Center and the Jewish Home and Hospital in New York will lead a discussion on ethics and palliative care. Dr. Carter is a graduate of Jefferson Medical College, Philadelphia, PA. He completed an internal medicine residency at Albert Einstein Medical Center, Philadelphia, PA and completed a geriatric medicine fellowship at Mt. Sinai Medical
Center, New York, NY. At present, he is the Co-Director of the Greenberg Center on Ethics, Jewish Home and Hospital, New York, NY and an attending physician at the Hertzberg Palliative Care Institute, Mt. Sinai Medical Center, New York, NY (as well as assistant professor in both the Departments of Geriatrics and Medicine at Mt. Sinai Medical Center in New York.

On Wednesday, September 20, Dr. Joanne Lynn of the Center to Improve Care of the Dying in Washington, D.C. will lead a discussion on quality of life issues for terminally ill individuals. Dr. Lynn is an internationally known leader in helping terminally ill patients improve quality of life. Her writings focus on helping all people approach the end of life with greater awareness of what to expect and greater confidence about how to make the end of our lives a time of growth, comfort and meaningful reflection. She is the Director of the Center to Improve Care of the Dying (CIDC) at George Washington Medical School in Washington, D.C. She is also the co-author of "Handbook for Mortals: Guidance for People Facing Serious Illness."

I encourage all of you to attend these sessions. If you know that you will be unable to attend, please submit a brief (and concise) question to askcasey@ec-online.net and I will try to have the guest hosts respond to them during the chat sessions.

You can enter the Elder Caregiving Chat Room at http://www.ec-online/Community/communit.htm or just go to the main page (http://www.ec-online.net) and click on the "Chat Now!" link.

Kind Regards,
Rich O'Boyle
ElderCare Online
"Tell me why -- Show me how -- Hold my hand"
http://www.ec-online.net

In Passing: Those We Must Remember

From Lndmark191

I am just writing to inform you that my son took the computer to college with him , so I am being removed from the internet. Iwould like to thank all of you for being such great friends. also, for those of you who do not know, my father passed away at 86 on tuesday august 29.he was buried on friday the 1st, with my son Keith as a paulbearer and with Keith also giving a beautiful eulogy to his grandfather. please keep my family and I in your prayers during this time.

goodbye, godbless and good luck to all of you.

love always,
Teena

Did You Know?

Here are some little known facts about Alzheimer's:

Did you know...

...that dementia IS NOT the name of a specific disease, but is a word used to describe the mental condition of a person whose memory is impaired and whose problems with processing information are severe enough to interfere with his or her ability to function normally?

Did you know...

...that there are two types, two forms and two categories of Alzheimer's? They are...

2 Types: Early and Late Onset

2 Forms: Left Temporal Lobe and Right Temporal Lobe

2 Categories: Sporadic and Hereditary

Did you know...

...that by stage 5, the brain is already 50% destroyed by Alzheimer's?

Did you know...

...that the Hippocampus is one of the earliest areas of the brain to be affected by Alzheimer's?

Did you know...

...the day the Hippocampus is destroyed by Alzheimer's, the person will lose the ability to recall the last 3 years of their life? Why? Because the Hippocampus is essential to memory storage.

Did you know...

...that by stage 6, their ability to remember what has been told to them, is now down to 5 minutes?

Did you know...

...that they will slowly lose their peripheral vision? And that is why it is so important that you approach your loved one from the front. It is the only way they will see you coming.

Did you know...

...a person with Alzheimer's may revert back to a native tongue if their primary language was not English?

Did you know...

...about 14% of all Alzheimer's victims develop somthing called Akathesia (termed restless pacing)? Which is the inability to control pacing? These victims are easily identified because they are constantly moving, staying in one place no longer than a few seconds.

Did you know...

...by stage 7, their abilities are reduced to that of a few week old child?

Did you know...

...that your loved one may suffer bowel and bladder accidents because they cannot remember what the sensations mean?

Did you know...

...that people born with Down Syndrome, will eventually develop dementia?

Did you know...

...that many people with Alzheimer's develop Visual Agnosia, which is the inability to comprehend what they see?

Did you know...

...that after it destroys the Hippocampus in the brain, it them moves on into the Parietal lobe? Once there, the person may hallucinate, suffer seizures, and lose the ability to speak, to read, and to recognize places, objects, and faces, even of family members. [ middle stages of Alzheimer's ]

Did you know...

...that final area of the brain to be affected by Alzheimer's, is the Motor Cortex? By then the person can no longer walk, talk or swallow. Pneumonia may set in when bits of food are inhaled. [ late stages of Alzheimer's ]

Did you know...

...as the devastation moves through the brain, it follows a course that corresponds to the person's symptoms? The first nerves to die are in the hippocampus, where memories are stored. The destruction then moves to the parietal lobe and finally the cortex [the outer layer of the brain] which controls your ability to speak, and walk.

A Daughter's Dream
a poem by WilloRain

I had a dream the other day,
And afterwards I had to pray.
I prayed "Dear Lord, Please help me through,
And make this dream be real and true."
See...Mama's sick and she forgets,
At times she says we've never met.

I care for Mama night and day,
I try my best in every way.
With each new dawn, it seems to me,
She loses more of her memory.

It's sad to see when Mama cries,
I hold her close and dry her eyes.
The dream I had, I wish were true,
That's why Dear Lord I've come to you.

In my dream a perfect rose,
Was in the hand of a woman posed.
Then...I saw her walking near,
Her eye's were bright and crystal clear.

Her mind was sharp, her smile bright,
She had a glow...a 'Shining Light.'
Loving words rolled from her tongue,
The one's I knew when I was young.

She held me in a long embrace,
As tears of Joy rolled down my face.
It was my Mama gleamed in wealth,
For You had given her good health.

The Alz. Disease that robes her mind,
Was gone because You love mankind.
That's when I thought, was this a dream?
And my tears began to stream.

Because you let me have a look,
At things You promise in Your Book.
So, now I know this 'dream' IS true,
It's all I need to get me through.

When times get tough, I'll hold her hand,
I'll try to help her understand.
That when she comes to live with You,
You will restore the Mom I knew....

Thank You Lord, for being there,
Please Bless all Caregiver's, everywhere....

Dedicated to my 'Little Mama' with Alzheimer's
"Love You Mama"
Loraine
9/1/00

From WilloRain

Email Bag

From Punyun

Thanks Karen for The Ribbon, for me it is such a wealth of information and support. For those who know me, my Mother she is just barely hanging on by a thread. She is expected to go any time now. She doesn't know any of us which I knew was going to happen. I have watched Alzheimer's from the beginning right on thru to the very end. Mom stopped eating about 7 days ago. That came on little by little just like everything else did. I truly have never witnessed anything so sad in all of my life that can rob one of every little piece of anything that they might have. I have cared for my Mother for 15 years thru the osteoporosis right on thru to the Alzheimer's in the end. I have been thru everything from tears to frustration and back to tears again. I have tackled every legal situation that could possibly come our way along with relatives that thought they knew better. I know that my Mother knows that we all love her very much. For all of you out there who have a loved one with this absolutely terrible disease God Bless you all and take a minute out to pat yourself on the back, for you truly deserve it. Love you all, Ginny

From Datel123

You knew you would hear from me on this issue. I will be as diplomatic as I can and refrain from stepping on anyone's toes or feelings. In a world of perfect people who love their families and care for their well being Mary's solution would be a wonderful idea. Unfortunately we aren't dealing in a perfect world and as hard as we might want this to happen and become a reality, most of the time it doesn't. You can call family meetings, you can hope that their loved ones care enough to want to participate in that person's care but unfortunately that is a mythical dream that isn't reality. Reality is that when your loved one is diagnosed with an incurable disease, especially Alzheimer's families tend to scatter like a bunch of chickens with a fox in their midst. Trying to get family members from both sides of the family to sit down and have a rational conversation would be great. Wouldn't it be wonderful if it did? Sit down like civilized people and make a care plan for that loved one. But as I have said before, you mention the word Alzheimer's and families and friends can think of more things they have to do, places they have to be and they let you know specifically that they have no time for this in their lives. Most first meetings wouldn't run smoothly. I can attest to that. I did exactly as Mary had suggested. I had called the head of our local Alzheimer's chapter to be here hopefully to explain the long journey I was about to take because at that point I was more lost than anyone you will ever meet. I knew nothing about this disease but events leading up to him being diagnosed had given me the insight to know that this wasn't something I could do alone. Two family members showed up. My daughter and my sister. After hours of discussions, explanations from the director, the vision she gave them of the future, they both left here oblivious to one single concept. For a family to work together as a structured team regarding the care of an AZ. Patient there has to be understanding of the disease and what the care of that individual entails.

I wish I could say that in most of the cases that having these meetings and family members coming together for the purpose of that loved one works but unfortunately I have been an active member in everything concerning this disease since his diagnosis in 1995 and rarely do you ever find a family who will take this long Good-bye with you. Jamie and Karen may not print this but I intend saying it anyway. The concept of Mary's thoughts and feelings are valid ones and Dear God how wonderful it would be if it could be true but Reality is that this disease divides families. It tears them into little pieces and there is usually one person willing to stand up and say I take responsibility. Even the most civilized, supposedly normal, caring families do not cooperate. If you read Brenda Avadian's last book where she wrote about the journey she took with her father there were other family members. She has a brother and a sister. She and her husband live all the way across the US from her father, her sister and brother lived within miles of him. Who do you think stepped up and took charge. She did as I did. She tried to get them involved in their father's care but the same excuses were used as with me. "I am too busy" they would say. "Just handle it." "What do you want me to do?" and then they wouldn't do anything and what it comes down to is them saying, Go away, leave me alone, I don't have or want this intrusion in my life. This is reality. Brenda and her wonderful husband who showed more compassion than his own flesh and blood took every single step with her. They moved him all the way across the US to live with them and believe me as I read that book the three times I did, each time brought a new understanding.

At the local meetings I have attended for 4 years, there is no family support. It has all fallen to one person and so much of the time when they are elderly the spouse who is well will succumb to the stress and exhaustion of caring for that spouse with AZ. Will die first. It has happened too many times for it to be a coincidence. Unless you have lived with a person with Alzheimer's disease then you will never and I mean never have the understanding that those of us who daily struggle to keep our heads above water.

I have been an active member on the national AZ. board here on AOL for years now and believe me when I say that you rarely find anyone dealing with this fatal disease with help from families.

The board is a wonderful place to be able to be yourself and not put on a happy face for anyone. I have said that when you walk into an Alzheimer's meeting you are going into a place where everyone in that room understands, not only understands but knows the range of emotions you are faced on any given day. No two patients are the same so we can't take one way of learning to do things and have it work for everyone. Each patient is different, each family situation is different, the only thing we have in common is that we will all go down this road, all at different levels and we will eventually all end up in the same place. When John was diagnosed saying the word AZ. Was like saying leprosy. It scared everyone. Frankly it couldn't have scared anyone more than it did me. I frantically ran from place to place looking for guidance. Today you can find out more than you want to know about this disease. But then I decided to write a book on a spouse losing the other half of herself to this horrible disease and I haven't accomplished that yet but I am working on it. Alzheimer's is the most difficult, challenging, frightening disease I have ever encountered. Just when you think that you have attended enough meetings, gone to dozens of seminars, know everything there is to possibly know about this disease you are thrown something else new and you are fumbling in the dark again. No matter how much you know, hope you know, there never will be a day when you know everything there is to know about this fatal disease. One of the most difficult things with me is that when they visibly look at him they see this tall. strong, well groomed man. He certainly looks as if nothing is wrong with him. But underneath that exterior is a man with the mind of a small child. We are the ones who have been ravaged by this disease and the stress and constant changes have aged us far beyond our years. They are oblivious to our pain. They are our burdens to carry and we do them with as much grace and dignity as AZ. Will allow. Most of us have been forced to carry those burdens alone. There are many reasons for this. Sheer ignorance in my own personal experience. But I have learned that those who choose not to learn have a valid reason. In learning they might not be able to use that excuse and possibly participate in the care of that loved one. Then we have those who do understand like my daughter who has finally come to understand but still has an excuse for not helping out with the care of the man who raised her from the age of 10. Ignorance is bliss and what a wonderful excuse to not participate. To not be able to give of yourself one hour each week to the man who gave you everything he had in his power to give for over 20 years. To me that is so sad, but not uncommon in my research. To keep and maintain any kind of relationship with my daughter and two granddaughters, I have stepped back and do not interfere with anything she does or doesn't do. Those will be Lisa's burdens and it will be her standing in front of God someday. I have reconciled myself to this and try and maintain the relationship I have with her. You can't force it down her throat, you can lead that horse to water but you can't force them to drink. I have accepted the fact that I can never depend on my daughter for anything regarding her Dad's care. It has been a long 3 years getting to this point and it won't get any easier. The only person I can depend on regarding John's care is myself. It has been that way since we started this long Good-bye. It will remain that way and I still empathetically contend that when his time on this earth has ended and God takes him home, those who haven't been here all of those years will never be allowed to come running with their phony words of sympathy, their cakes, pies and pious attitudes. I absolutely refuse to allow this to happen and by now you all know me well enough to know you can believe what I say. There will be no absolving themselves of guilt at that time. I know exactly how things will be conducted, we made those decisions long before AZ. Came to our door. There won't be a church filled with hypocrites trying to salvage their dignity by showing up when I no longer need them. I'm sure there are those of you will think this is harsh. Think about it. It isn't called The Long Good-bye for nothing and we have been forced to have had that funeral so many times before it becomes factual. So in my case there won't be any last chances for our friends, and families to come and try and make things right. Where were you when I struggled alone all those years? There will be no regrets from me because I have been the one and only consistent thing in his life and I was always there. I was there when we started and I will be there when it has ended. But for those who had years to do even one small thing, their chance has come and gone. He is the most important thing in my life today, yesterday and tomorrow will be the same. Nothing will ever change the deep love I have for this man.

So I am not talking about an occasional experience when you run across a family that actually forms a loving, caring unit and equally distributes the care. That is the minority, certainly not the majority. It never has been that way and I never see it changing. As I said I am not saying this to hurt anyone's feeling, it is just what I have personally experienced through my years of Alzheimer's.

Sincerely,
Dean
Incidentally Happy Birthday Kevin and A. Big Texas Welcome.

That's it for this issue. We hope you all will continue to write and send us your comments, suggestions, questions, helpful hints, and articles. We love being able to put together YOUR newsletter. Remember, The Ribbon is for You the caregiver.

Hugs and Peace,
Jamie and Karen