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The Ribbon - Care for Caregivers
Volume 8, Issue 13
October 30, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

Happy Halloween to all! I've been sitting here reading email and getting ready to get this issue out and thought I might have some Trick or Treaters. Not so. Our City Council did not make a decision about whether the kids should be out tonight or tomorrow night. If I remember correctly from when I was a child, we did not trick or treat on Sunday night. I'm thinking we always went on the Saturday night before. A lot of the cities made a decision for the kids to be out tonight and that's the way I think it should be. Of course, that's just my humble opinion. :-)

Nick has had another bad spell. I just wish the doctors could come up with an answer to what is going on with him. He started off as just feeling "not right" and not being able to stay awake. He also had developed a twitch in his arms over the last few days. It then progressed to his blood pressure going pretty high, a sensation of falling, though he did not fall. His pulse was 112 even though he had been sitting for at least 45 minutes. When the pulse got to 129 sitting and the bp was fluctuating all over the place I got him to agree to go to the hospital.

While in the ER he started having visual hallucinations and was delirious. He was calm thank goodness. The nurse did a true orthostatic bp and when he stood his bp was 66/48. She had him lay down immediately and she started an IV. She said that showed he was dehydrated. They admitted him.

When the doctor came in the next morning he said that Nick's BUN and Creatine levels were high and he was going into renal failure. Nick was still delirious and even told the doctor that his mom used to fix his meds out but now "she" (motioning at me) does it. Now that's odd because Nick's mom has been deceased since he was around 15. Doctor said he would have a psychiatrist come in the next morning and he was ordering a CT scan.

The CT scan was done and it showed an old infarct but nothing else. That day the doctor saw that Nick was back to his senses and said his levels were back to normal so he could go home. No psychiatrist and no explanation for the fatigue and weakness which still continues to plague Nick.

I went through some stuff with my other relatives but there was nothing going on like this. I'm at such a loss. I did not go to work this week because I did not feel comfortable leaving Nick alone at the hospital or at home.Thank goodness for a Great boss and for PTO time!

My son, James, sat me down and had a talk with me. Heasked me "what are we going to do when Dad can't be left alone at all?" I told him I had been fretting about it the whole time I was at the hospital. He then said that since I make more money and get more hours than he does then he would volunteer to quit work and stay home to care for dad when the time came. When I could finally speak from being all choked up, I told him that I would consider it and we would talk aboutit more as time goes on. Even though he was my right hand with all the others, he didn't have to do any of the real hands on stuff. I think I will start training him now so that when the time comes he can be ready just in case he becomes primary caregiver.

Well, such is my life. If it ain't one thing it's another. Good thing I can roll with the flow. :-)

Jamie


Words From Karen

First of all, I must offer my apologies to our Ribbon readers. I know you all look forward to receiving The Ribbon and I thank you for all the inquiries and comments. It is nice to know that we were missed.

In the last issue, Jamie mentioned that my Mom has been placed in the hands of Hospice.

This happened in early June. Mom has had a number of hospital visits this year and with every one, she declines more. Although she is in late Stage 6, she is still verbal and ambulatory, or at least she was. An extended stay in the hospital in May left her unable to walk. So when I saw her in June, she was in a wheelchair. After conversations with the doctors and care facility staff, we opted to turn to Hospice. There will be no more midnight runs to the hospital, no more weeks of being bed ridden.

Years ago, when she was still cognizant, she did a Living Will. She does not want any life saving efforts, no tubes, no heroics. We decided that we were, in fact, going against her wishes by putting her through all of this.

We don't want her final moments to be filled with fear in an Emergency Room, she doesn't want that either. Hospice sends a nurse to see her 6 days a week. They have also relieved some of the financial burden and are giving her what she needs in the way of medications.

So she is getting even more care and is doing fine.

It was a difficult decision but we feel it is the right one. At 82, after almost 11 years since diagnoses, we feel she deserves peace in her final days. She no longer knows us, nor remembers the life she had before AD but she is content in her tiny world.

We all have a sense of peace knowing that when the end does come, she will be in her own bed with caring people around her. She deserves that.

Karen


Introduction to a New Writer

My name is Barbara, I am dealing with Alz / Dementia and write almost on a daily basis. I have been receiving the Ribbon and enjoying it very much. I belong to an Alz site which you may be familiar with since they have mentioned the Ribbon more than once to mE.

I am dealing with my health issues, which are more than a few, in a positive way by writing and encouraging others along the way. So many are devastated trying to understand the feelings of their loved one, but communication leaves them angry and feeling alone.

On the other hand the patient, when able to understand, has issues he or she tries to communicate also. My family does not always understand mE, nor I them.

I can try to explain where I think I am comming from, but at the same time, often I am not even sure. I deal through the computer by writing, going deeper than I ever have before. Using all the senses I have always had, but was too busy to acknowledge.

I am "housebound" due to other health issues, so for mE to go past the front door once or twice a week is an experience to awaken all my senses and write about, As I explain to eveyone, I have gone from being me to being mE through this transformation.

I am more aware, alive, and among the living than ever before. My illnesses have turned into miracles not burdens. I want others to feel this and begin to be counted among the living also, not giving up and just waiting to die. We owe ourselves more than that, we are short-changing ourselves and our families if we do not at least try.

I am taking Exelon with anti-depressents among my medications. Aricept did not agree with mE, but I am really beginning to experience much better control and have a clearer mind with Exelon.

My current joke is, "now if it could teach mE how to spell correctly again, my wonder drug it would be." :-) A writer that cannot spell is a challenge, but so is life. No promises with many rewards if we look inside each day with our eyes wide open.

I will not take anymore of your busy time, sorry if I went on a bit, but I would like you to possibly consider some of my writing to help others. This is a beautiful time of year, one of my favorites and on my last outing I was truly inspired to write the piece I sent previous to this letter.

Thank you for your time and patience.

Blessings, Bobute ( the old soul) mE
peleda68@yahoo.com

Here's the writing Barbara sent:


"People spend a lifetime searching for happiness; looking for peace. They chase idle dreams, addictions, religions, even other people, hoping to fill the emptiness that plagues them. The irony is the only place they ever needed to search was within."

~Ramona L. Anderson

When you open all your senses, sharpen your awareness skills, and take yourself out the door, down the street, into an area of your town that is not perfectly manicured...............then do yourself a favor and stop somewhere along the roadside.

Shut everything off, radio, cd player, and car motor. Close your eyes for a minute, breath slowly, comming back gently. Open your eyes, emerge from the car and look around for once in your life. Take this time of year to take a mental picture of all that is around you. Then record in your mind the sounds you are hearing. Wild Geese high above, birds sending messages from trees painted in color. Feel, taste, touch, smell the earth's offerings.

If you are lucky you may find something like this:

I am sure, if I listen closely, another realm deep under the many waters of time will slowly appear and comfort mE with the answers I seek. I find nature to be one of my most comforting connections to the places I am still able to enjoy.

We had a heavy rain shower Sunday, but before we left I spotted one lonely blue wildflower waiting to be noticed along the path. Close to it a long feathering unknown plant kept it company as if they were connected in some way. They seemed, meant to be together, each different yet needing the other.

After the afternoon shower, when we returned, the sun was shinning on my new discoveries. I shall never forget the sparkling drops of rain glistening in rare beauty to enhance an already perfect picture. Nature had finished her work by scattering droplets of water like tiny jewels for a picture etched in my mind forever.

Possibly because I am not able to be out each day, I am noticing each small detail created before mE. Our roadsides are all ablaze at this time in shades of yellow, white and bluish-purple. Tall feathery Golden-rod is just beginning to fan the roadside in full view, Never shy, Golden-rod has always been wild and showy with her shades of golden yellow topping tall stalks of deep green leaves.

I noticed her competition seems to be a challenging tall, brightly yellow petaled flower with Dasiy like features. Mother nature has once again outdone herself with her yellow palette. That seems to be a predominate color in both spring and fall in this part of the country.

My bluish-purple cluster of single flowers stem out on a less tall stalk of dark green leaves. Nature manages to scatter her beauty so everyone can appear in the picture at different heights. Not one blossom is hidden by another to the naked eye.

In planting a garden, the gardner plans and worries over placing each blossom at the right height, in the right spot, creating the order of the human touch. Maybe a lesson could be learned here to let nature have her way in a nonconstricted manner.

The planet was never orderly in the first place. Why do we need to adjust, control, and "place" everything to our liking instead of accepting a scattering of beauty. I have read about some people "tossing" spring bulbs and planting them wherever they fall. Up and down a hillside, around a tree, along a path to nowhere.

A tiny bit should be left, as if unfinished, with a promise to return again next season. Order in things to some is boring and dull.

I admit being one of "those people." I do not opt for complete turmoil, but a dangling thread or the promise of a loose button keeps one aware of living in a non-orderly fashion.


There are no surprises in an orderly world, I for one, want to go around the next bend and find nature has something special waiting for mE. I want no sure bets, how dull to know what the outcome will be each day we live.

I prefer to leave with the sun shinning and return to find tiny sparkling jewels glistening in the late afternoon sun light. To find one precious gift in each day, beside the gift of life, creates an inner peace that shares itself without even trying.

My illness did mE a favor by stopping mE, giving mE time to "smell the roses" once more. Remember lazy summer days of sleeping late, no homework, and just being a kid? Were you able to smell the roses on a hot summer day. I was and can still remember that honey sweet smell from their delicate beauty.

In order to truly live, unlock those doors once again. It won't magicaly come to you unless you seek it for yourself. The simplest pleasures, costing nothing but a little time, will do more for a child or adult than anything money can buy.

Slow down before you are forced to. Good luck I pray you find wildflowers in the rain as I did.

Blessings, Bobute (the old soul) mE


Poet's Corner

With permission from jbunnyy@hotmail.com.

I am enclosing a poem I wrote relating to my husband of 53 yrs. who has Alzhemier's Dementia. My name is Joyce Yates and I have been my husband's caregiver for almost 5 yrs. since his diagnosis.

The television screen is suddenly illuminated and there is my love,
Smiling into the camera lens, his eyes alight with intelligence.
I smile in return, my heart aching with bittersweet longing,
To go back to that day when life was sweet
And the future bright with plans and no sense of foreboding.
The man in the film enthusiastically speaks with fluency,
No hesitation, no fumbling for words, no bizarre language..
Rather a kidding, loving speech directed at me with an intimacy
Engendered from many, many years of life together,
And belief that these years would continue unabated
With all our dreams being fulfilled we lived our lives
Unaware of the monster that awaited.

Ah! There he is waving as he balances one of the grandchildren on his shoulders.
He moves with a quickness and grace,
Uupright, and with head thrown back.
No indication that in a few years he would be shuffling, slowly taking one step and then another, with a lack of balance ever present in his gait.

I remember that day that we filmed our joy,
And if we could go back to that time
And change the future to one of health and continued companionship,
I would in an instant put in my request to God.
To continue with my Love for more years of togetherness, being able to converse
And participate together in the daily happy pattern of life.

I will, when I am starved for a glimpse of my Love
Watch the happy times when he was whole,
And laugh with a sob in my throat as I see him encountering life with a joy
And a verve for life,
And for a little while will see the man complete and glorious
While I forget for a little while the reality that awaits
When the screen darkens and I begin anew the role that fate has assigned.

me..


Links

Guidance and support helps children cope with grief

Lorna Manago first faced grief at age 8. "Daddy has a disease in his brain," said Mom. "I'll pray all day every day so he'll get better," said Lorna. "Unless a miracle happens...

Full story from the Seattle Times.


I thought this might be good information that you could include in your newsletter. As part of raising awareness of Alzheimer's disease and with November being National Alzheimer's Disease Awareness Month, MedicineNet.com recently surveyed 387 individuals visiting MedicineNet.com who have or care for someone with Alzheimer's disease. The survey results are now available for download.

Coping with Alzheimer's disease in the Internet Age: Survey Results

We encourage you to download and use the information gathered in the report. All we ask is that you provide attribution to MedicineNet.com.

If you have any questions, or if MedicineNet.com can be of assistance, please let me know.

Sincerely,

David Sorenson
Vice President Marketing

david.sorenson@medicinenet.com
direct: 949.940.6520
main: 949.940.6500 fax: 949.940.1094

903 Calle Amanecer, Suite 300, San Clemente, CA 92673


Nothing is more lovable than a baby. This lifelike, oh-so-huggable doll, looks and feels like a real baby with an expression that few can resist.

One family wrote, "My mother has had a baby doll for two years now. She loves that doll with a passion you would not believe. She kisses it, tells it how much she loves it, and keeps it with her all the time. At first she told me she knew it wasn't real, but with it, she never feels alone. This was the best thing we ever did for her."

"Someone To Care For" Doll


Book Nook

Young Hope

Take a journey into the author's world and learn first hand what it is like to battle with this wicked adversary known as Alzheimer's disease, on a day to day minute to minute basis.

This book will defiantly bring to light what those who suffer from and those who take care of people affected with this hellish disease. Learn more about what people go through as their mind is slowly and irreversibly wiped away and take heart in their struggle to maintain themselves.

Learn about what a spouse, child, family member or caregiver see, hear and live with as they watch helplessly with open arms to their loved ones fight for independence.

This is the story of what happened to one young woman who was diagnosed at 38 years of age with Early On-set Alzheimer's. Her and her family's life that was once known to be normal has been thrown into a tailspin that would forever change their lives.

It is online through Barnes & Noble and Borders Bookstores

It has been given many rave reviews through the local Alzhiemer's Chapters.

It can also be ordered through the publisher's website.

Click on PRODUCTS and scroll down to YOUNG HOPE by Tracy Mobley


Email Bag

From jlingard@groupwise.swin.edu.au

Just a short note of thanks for your newsletter. I read this, usually late at night, by myself (3 kids, husband sound asleep) and the tears just seem to flow. My mother, Lilian has been diagnosed for some years now (she's 71) and just last february was moved into a care facility.

This, as you know, was heartbreaking for all, my father was her primary caregiver for several years. He lives in Perth, West Aust and I live in Melbourne, victoria and we visit a couple of times a year. The last time I visited there was no recognition on her part. I try to ring every other day, it does not matter that she doesn't recognise who I am but just that she knows that I am someone who loves her! Best go before the tears flow AGAIN!!

With thanks,

Julie,
Melbourne


From sonja@scrapbookbuddy.com

I was looking for websites to help my mother inform my father's WWII squadron that my father just died of Alzheimer's.

I have spent the past three hours reading the letters, stories and poetry on your website and I Thank you! I have held up tremendously in order to help my mother through all the immediate tasks that have to be done after a spouse dies. My husband was a State Patrolman killed in the line of duty 17 years ago, next week, and I just remember -- all I want to do is scream, not answer all these insurance, estate and financial questions. Mom has had a rough time dealing with all of this, but is blooming like a new flower! I wish she had a computer, so she could visit and benefit from your website. Thank all who have contributed! You have no idea what a step in healing this makes!


From chucksix@earthlink.net

The resumption of The Ribbon was like a breath of fresh air. Glad you all had a well deserved break, but it's great to have you back. To paraphrase an old song: "You've Gotten To Be A Habit With Me."

Chuck 6


From Dzyizy@aol.com

I care for my husband of 51 years. We have been married 28 years. We had always done everything together. Since 1998, he became ill and our lives changed dramatically. I initially went through shock, grief, anger and fright that I had never experienced before. Even when my mother passed away in 1985, I was deeply grieved but my ever patient husband was there with me every day. Since he became ill, he has never been the same. I have had to accept that he would never be and I still struggle with this acceptance today. I came across your newsletter and really appreciated the Caregiver's Bill of Rights. I, along with my two adult children (a third is away at school) are his only caregivers. We try to keep things as normal as possible, but no matter what there is always a level of stress that comes from trying to do our best to care for him. I printed the Caregiver's Bill of Rights and placed it on our refrigerator as a reminder that it is o.k. to want to continue to invest in ourselves. I will continue to check in. Maybe I can find more helpful hints............


From bthbeverly@aol.com

The Ribbon has been a great help andvery informing of many interests I have at this time in life. My husband has Vascular Dementia/Alzheimer's. I share your information with the 2 support groups that I go to. Thank you!!!

Keep up the great work


As you can see by the emails above, what you contribute, no matter how small you might think it is, is a BIG help to someone else. That is why we say The Ribbon is YOUR newsletter. Without your help we wouldn't be able to put this together. It is our hope that you will continue to send in links, articles, poetry, anything you think could help someone else as a caregiver.

Hugs and Peace,

Jamie and Karen

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