Volume 6, Issue 2 - The Ribbon Newsletter

Volume 6, Issue 2
January 22, 2002

www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

The Golden Years

So many of us have grown up watching our parents plan for their "Golden Years", that time in life where they can retire and relax. For those of us who are Caregivers, we know that those plans have gone awry, changed by the ravages of Alzheimer's' Disease.

Living in Florida, and working with the public, I see this all the time....but the other night, driving home I saw an elderly couple in the car next to me. He, the driver, was a handsome white-haired man, probably in his late 60's. She, the passenger, also white-haired, was probably about the same age but looked older. What caught my eye was her face, her eyes....that vacant look, the look I've seen on my mother's face.

It occurred to me that so many people have planned their retirement and then had all of their plans changed so severely because of AD. The fun times on the golf course are replaced by the stresses of Day Care. The fishing trips are no more, replaced by the pressures of caring for someone 24/7.

I remember, as a child, hearing my parents talk about the things they were going to do when Dad retired. Grand plans....to travel to Hawaii where Dad had been as a young sailor, to see the Golden Gate Bridge together, many other places and many other things. All dashed as Dad died suddenly in 1993. And a year later, the diagosis of Mom's AD.

As I looked at that elderly couple at the traffic light, I wondered what their plans and hopes had been. Certainly not that vacant look and I ached for what they have lost....their Golden Years.

TheRibbon.com
Website

The website is in the process of being upgraded and additions made. It is our hope that you will visit and check out the new sections as well as the upgrades made to our regular sections.

Did you know that you can SEARCH for a particular subject? Enter the word or words you need in the search box and click Search. You will get many links from any newsletter that contained that subject.

Now for our latest addition!

We're happy to introduce a new feature to TheRibbon.com. Beginning today, you can visit Recipe Corner @ TheRibbon.com. There you will find family favorite recipes contributed by fellow caregivers. We hope to build a large collection of recipes, so we invite you to visit and contribute your own family favorites. We offer regular recipes as well as special diet meals including low fat and easy to chew selections. You can easily email a recipe to a friend, and print recipes in regular or large type.

Everyone, not just caregivers, is invited to use the site and contribute their favorite recipes, so share the word with your friends. In fact, we hope new people who reach us through our recipe site will use our main site should they have the need for it.

If you have ideas, questions or problems concerning the site, please contact kevin@theribbon.com.

Now we have a job for you.We would like for you to send in suggestions as to what to call this new section. Do we just call it Recipe Corner? Do we name it after Micki who will be checking and posting the recipes? Give us your ideas!

Another job we have for you is to come up with some slogans. We know that not everyone wants a coffee mug or t-shirt with just The Ribbon or Gathering Place logos on it. Tell us your ideas. We have new Valentine products available and need some suggestions!! Visit the Caregiver store, look at the products and let your creative minds go to work. TheRibbon.com Caregiver's Store

Practical Tips for Caregivers
Mary C. Fridley RN, C

Sometimes the most basic daily routines can be the most troublesome. Take bathing for instance: Turn on the water, step into the shower, lather up, rinse off and dry. Sounds simple, doesn't it? It is, unless you're trying to get a loved one with dementia to bathe. What about hydration? Have you ever tried to get someone to drink enough fluids who doesn't want to or whose mobility prevents it? And what about all that idle rummaging through drawers and closets? What can you do? Is your loved one destined to smell like old socks, suffer from dehydration, or injure herself in the knife drawer? Don't give up hope, there are practical ways to handle things.

Bathing is undoubtedly the most problematic for caregivers of loved ones with Alzheimer's disease. It can truly be a combative experience. The best strategy is STAY CALM. Approach your loved one in a matter of fact way. Don't strip her; keep her covered with a warm bathrobe. Prepare the bath water before entering the bathroom. Lighting should be adequate and the bathroom itself warm. Playing soft or familiar music in the background is also helpful. If she's reluctant to remove the bathrobe, don't force her, you can discreetly wash her with it on. When done, wring out the bathrobe and hang it to dry. Of course a sponge bath at the sink is fine, too. There's no rule that says she must be routinely soaked!

Even a healthy older person is at risk for dehydration. As we age we dry up and dry out! Our fluid reserves decrease, thirst reflex diminishes, and we actually need more water than we did when we were younger. Now add decreased mental status or limited mobility to the pot and dehydration is inevitable. As long as your loved one has no restriction, constantly encourage clear fluids. Avoid caffienated beverages as they have a diuretic effect. Fill a sport bottle with clear liquid, preferably water, and give it to you loved one to sip on all day. Refill the bottle frequently. If she doesn't like water, combine half water and lemonade, apple juice, or cranberry juice. Eating watermelon, too, is good, as most of its content is water.

Rummaging through dresser drawers and closets can be upsetting and nerve wracking. Usually the rummaging is messy but harmless. Sometimes a loved one may rummage through areas that contain harmful things, like knives, alcohol, or cleaning supplies, or even important information. If you're unable to hide these things, you must make the drawer or closet inaccessible. Try using childproof locks and knobs. Most people with dementia will attempt to open them, but lose interest quickly. Camouflaging a door with a mirror or material may help to blend it in with the walls. If opening a door is truly harmful, a keyed lock placed high or low may be the answer. Another suggestion is to provide your loved one with drawers or a closet to rummage through safely.

No matter what the problem, always stay calm, think KISS (Keep It Simple Silly) and know that 'this too shall pass'. God Bless.

Mary is a registered nurse certified in gerontology with more than twenty years in the geriatric health field. She is the owner of Gero-Resources specializing in caregiver, eldercare, and successful aging education. She provides staff and community education as well as motivational speaking engagements. Mary is also an author of two caregiver advice columns and contributes articles to various websites. She will be happy to answer your questions or concerns while maintaining your anonymity. She can be reached at Gero-Resources, P.O. Box 4743, Crofton, MD 21114 or at geroresources@hotmail.com.

In Passing:Those We Must Remember

All of these come from PHOTOLJT

Dated 1-7-01

It is with deep regret that I must write this evening. I received an email from Schwiek17 an old time AOL friend (Linda 2 as she is known to us). She informed me that her father passed away last night in his sleep. Her email sounded like she was doing as well as could be expected.

Linda enclosed this thought for us: "Thanks to The Ribbon, The Gathering Place and my friends at the chats over the years for helping make the long caregiving experience with both of my parents so much easier. There have got to be special haloes for Alz caregivers since we all hoe such a difficult row."

Please join with me in extending your thoughts and sympathies to Linda and her family in this very difficult time.

Dated 1-12-02

It is with deep regret that I must write to share with you that I received an email from BetteBoop57, a not too frequent visitor of ours, telling me that her father "left this earth" tonight. She said that he passed away in her Mother's arms; "It was the most loving thing I have ever seen." Bette states that she and her family are doing ok. She relays that her siblings will be arriving to help tomorrow.

Please join with me in extending your thoughts and sympathies to Bette and her family in this very difficult time.

Dated 1-15-02

It is with great sadness that I write to you today. One of our longtime members, yet one who has been busy for a while, Keyso or Gayle, lost her Mother on Monday.

Her Mother did not respond from a brain hemorrhage on Saturday. Gayle said the she and her family were with her Mom; "they laugh, cried, and talked about lots of good things and played her favorite music - dance band. She knew we were with her and peacefully began her journey home around Monday Noon. Gayle and her family are comforted by knowing she is at "peace, happy and free at last." Gayle goes on to say, "Smile when you think of her, she is one of the lucky ones!"

Please join with me in extending our thoughts and sympathies to Gayle and her family in this very difficult time.

Love Always,
Linda
Linda@theribbon.com
The Gathering Place
Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/
Contributor to Finding the Joys in Alzheimer's (page 76)

Caregiver Online Survey - Participants Invited

Hello Caregivers -

My name is Jan Colvin, and I am a doctoral student at Texas Woman’s University in Denton, Texas (and future caregiver). As part of the requirement for the degree, I am conducting a research project to investigate the experiences of caregivers that are using online social support networks. I am interested in learning more about how caregivers give and receive social support using the Internet. Upon completion of the study, I plan to submit articles to professional journals with the hope of impacting programs and policies that support caregivers.

You are invited to become an anonymous participant in the research study. Absolutely no identifying information, such as the web address or routing numbers, will be transmitted when an individual submits a completed survey. The survey will take approximately 30 to 45 minutes of your time.

If you meet these criteria, please click below to find out more about the study:

a) You are over 18 years of age.
b) You are providing help with personal care, household chores, transportation, finances, etc. for someone 50 years of age or older (who lives at home, not in a residential care facility).
c) You are performing caregiving activities for at least 10 hours each week.
d) You are engaging in online social support networks.

Click below to find out more about the survey.

Caregivers of Older Adults Online: Perceptions and Patterns of Internet Use for Social Support
http://www.twu.edu/cope/famsci/colvinsurvey/default.htm

Before I Forget
A Person with Dementia's (PWiD's) Perspective

Last October, at the Alzheimer's Disease International meeting in New Zealand, we showed the world that persons with dementing diseases did not have to conform to the stereotype of helpless victims, but could be autonomous, competent, and contribute. Different ones of us carry out various sorts of rehabilitative activities, in accordance with our various needs, our ideas, and what seems to work for us. Yet we have not found a single clinical neuropsychologist to help us. We have not found a person with professional training and certification, who knows neuropsychology and what works and does not work for persons with brain-injuries, developmental disabilities or strokes, and who is willing to consult with DASN members on what might work best for them. In particular, I have not found any professional who would review my theories of rehabilitation in detail. I've been encouraged by experts, but they've indicated that rehabilitation of persons with progressive dementias is not their priority or specialty and they don't know anyone for whom it would be.

So if ADI, or any concerned person or group, could find, anywhere in the world, a clinical neuropsychologist who would take our concerns to heart and communicate with us on the Internet it would be a tremendous boost to us. Not only would it be of direct help, but it would give us a message that we still count, just like people with other diseases do.

---Morris

http://members.aol.com/MorrisFF/index.html

Request

Dear Readers:

If I may, I need to ask you to think back to when you first heard the words, "Your loved one has Alzheimer's." I do not mean to bring back those unpleasant memories; however, there is method to my madness.

The other night in chat, it was suggested that a sheet of helpful suggestions be put together for the folks who have just heard those devastating words. Where do I go? What do I do? What is Alzheimer's? Who do I turn to for help?

So for the folks in chat that night, a homework assignment was given. Can you come up with 3-5 things that hit you out of the blue that you never dreamed of that you would have to take care of. Now all the legal decisions are a given and will be given in the document; but what we are looking for is something you would never thought of. I will give you an example. In my particular case, my father has a few life insurance policies for him. In preparing for the spend down; we did not realize that if he owned the policies, when he dies they will be considered an asset. What had to be done was to change the legal owner of the policy and leave him as the insured. No fair, you can't use that idea! But that gives you a picture.

So readers, I need some help from you, please? What are 3-5 things you can think of that may help someone who has just learned their loved one has Alzheimer's. Additionally, would you be able provide 3-5 things a caregiver could do to make their journey down this path much easier? And while I am on a roll, would you be able to provide 3-5 suggestions for activities you have found that work to occupy your loved one?

I know that is a lot of information to ask, but who better than those who have been there and done that? Any assistance you could give will give you a sense of "helping to pay it forward," helping to pay the help you first received forward to those who are just as bewildered now as you were then.

Once it seems I have received all the responses, Jamie, Karen and I will go through the suggestions and narrow them down to the most helpful. Once that is done, the draft will be finalized and put on The Ribbon site and printed in the newsletter for easy access and "share-ability."

So please, if you would like to help, draft an email to Linda@theribbon.com. Please use the subject line of "Helpful Suggestions."

Thank y'all in advance for taking time out of your busy days to help!

Love Always,
Linda
Linda@theribbon.com
The Gathering Place
Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/
Contributor to Finding the Joys in Alzheimer's (page 76)

Creative Memories Scrapbook for Alzheimer's Association

Hello to all my friends, I am a Creative Memories Consultant and some of you may not know me but a lot of you do. Creative Memories is a Scrapbooking company and we teach how to preserve your pictures in safe acid free albums for ever. They are going to have a fundraising for Alzheimers Association. Yeah! I am so glad. You all know I lost my MIL last April with Alzheimers and cancer, my FIL has it too. Sharon, my very dear friend for many years, husband has it and I am so thankful for CM to be doing this to help. I have always loved coming to chat but my CM business keeps me busy. I do come once in awhile and I love all of you. My heart and prayers are with you all, dealing with Alzheimers isn't a easy task. If any of you would be interested in an album please let me know and I will be glad to help you all get one. I think it would be a great book to do an album of your loved one.

You may email me or let Sharon know and I will get back with you all. I won't be able to order them until I get back from Regionals Feb. 3rd. I just wanted to give you all a chance to purchase one if you are interested.

Big Hugs, Becky Sr. Consultant

A new album introduced is the Triumph Album. This is CM's first fundraising album. The program is to help aid funding and awareness for the Alzheimers Association. For each album purchased, CM will donate $2 directly to the Alzheimers Association. The album is a 7 x 7 size. It's a pretty purple etched with a heart and frame. Album has 12 pages (24 sides). Inside cover is decorated with the same heart and has an alternate self adhesive bookplate. Comes with a gift box. VERY CUTE. $23. 7 x 7 page refills and protectors will be available. This album will only be available from April 1 - May 31.

BJBudy

Links

From CAREVOICE

Hello Fellow Caregivers (and Finding the JOY Contributors),

Here's a site that explains the newest diagnosing technique for Alzheimer's. Some of you may recall my trying to find it during The Ribbon's The Gathering Place and the iVillage Health Caregiving chats.

CBS News | Shedding Light On Alzheimer's | Wed, 09 Jan 2002 19:55:06 EST
http://www.cbsnews.com/now/story/0,1597,323754-412,00.shtml

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's (also AVAILABLE in Audiobook and in the German language) and Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times.

From Dglennox1019

NSAIDs and Alzheimer's Disease -- What to Do?

Summarized by Robert W. Griffith, MD

Introduction

Most of us have probably read of the new study that suggests that taking an NSAID (a nonsteroidal anti-inflammatory drug) can protect you from getting Alzheimer's disease. Indeed, many of us in the upper age brackets are wondering if we should start taking something like ibuprofen (Advil) or diclofenac (Voltaren), just in case. Here's a summary of the study and an accompanying editorial [1] published in the New England Journal of Medicine

Email Bag

From JRNYWMN

Hey, Karen and Jamie....

Since I've put myself out-of-touch these last couple of years, not sure if anything's been done on the order of a "complaint column" or "comments to mfrs" on things that DON'T work, for Alz victims as well as elderly people...

Okay, that was confusing enough. But, the one thing that REALLY hit me when Mom moved in was when I tried to open the balogna container. Here these people have been scared out of using the stove/or they've forgotten how, of course. So they go to what they KNOW is safe...and they can't open the darn thing to get to the balogna. What do they end up with..bread? crackers? Sure I know lots of people don't like balogna, so maybe they like ham--same thing...I can't hardly open the thing myself! And I consider myself capable.

Any thoughts? I won't be offended if you don't think it's worth pursuing. I've already commented by e-mail to Oscar Meyer's site. I haven't really sat and contemplated other products, but there surely must be some.

Ann

P.S. Thanks, as usual, for all your hard work!

From LauraW64

Hello,

After reading the problem about the Dad, Mom, Son and DIL, I am so sad. My strongest good wishes are sent to that family.

Regarding the anger, we had a similar situation with my Dad. My Mom died unexpectedly and suddenly about 3 years ago, with Dad having early middle stage Alzheimers. He was very angry when my sister moved in with him - we knew it was for his own safety and care, but he didn't understand that. Eventually, he did get used to it, but not without verbal assaults from him. We now have a live-in caregiver who cooks, supervises and directs Dad towards appropriate activities. This is a life-saver when the demented person still realizes that they have a home and they want to be in it. We can't pay much above room and board, but luckily we can pay a little. Dad now is much happier, even though he still sometimes wonders what this person is doing in his house.

Regarding the driving, we also got lucky that Dad's car broke down just at the time that we were about to have to stop his driving. He wanted to go buy a new car, so we told him that we would go looking "soon". Each day that went by, he asked about a new car, but less frequently. After about 10 days, he'd forgotten that he didn't have a car and even told people that he hadn't driven in years. Possibly the Son could disable the car and try something similar, but it depends on the Dad's level of memory.

Again, how sad is this? I'm sorry that I missed the chat on Friday, Jan. 4, that was about a caregiver's acceptance of sadness in their life. I have found that to be one of the hardest things to deal with. I hope knowing that other people sympathize can help the Son and DIL through these times.

Laura

From Bev2Davis

Re: Mom, Dad, Son, DIL: Hurry! Hurry! Go to Attorney and through court system and get emergency temporary guardianship and conservatory papers signed and sealed. This may take a while, depending upon attorney, etc. I was able to get mine done in two days, as soon as the papers were signed and sent to the judge. Also, son has to have affidavite saying Mom and Dad needs the guardians, etc. Good Luck, Bev.

From LTu1022192

In reference to the irate dad, mom with cancer, and baffled kids.

Having experienced some of the same problems with a strong-willed husband I can tell them the worse the dad gets, the easier it will become. Not that this all that encouraging.

The nursing home where he was also told me if he wanted to come home they could not stop him. I was also told by home-health if they should see any signs of abuse it would have to be reported. A scary thought when he was forever falling and getting bruised.

If there is a nursing home with a lock-down unit within a reasonable distance I would have the dad placed there.

After witnessing some yelling, screaming scenes, I swallowed my pride and informed all my husband's friends and business acquaintences of his condition. This enabled many to deal with him better and saved a lot of hurt feelings.

Lorraine

From CAREVOICE

Dear Karen,

I didn't know who to respond to re: the Mom, Dad, Son, and DIL story in The Ribbon, so I am replying to you.

Before you read on, understand that my comments are in response to what was written in The Ribbon and not to what may actually be occurring with this family.

First of all, the Son and DIL need to know for sure what Dad has. Did specialists assess his condition or did a General Practitioner. If Son & DIL haven't already, they should take Dad in to be completely assessed by a geriatric physician, neurologist, etc. (What reason did the "nursing home" give for their comment that he doesn't have Alzheimer's?) Actually, the place does not sound like a skilled nursing facility rather an assisted living-combination convalescent home--not skilled to deal with Alzheimer's. Dad will probably require a secure skilled nursing facility. He cannot be placed in one until he is formally assessed as incompetent, however.

Mom should be given peace during the last months of her life and not have to put up with this.

Bottom Line: Try to put yourself in Dad's and Mom's shoes. Let's start with Mom. Peacekeeper...now she learns life is limited because she has cancer. She is curious, will she be in pain, how will it be? Has she finished everything she needs to in life? Will Dad get along with Son? Will everything be taken care of. She's got a lot on her mind plus she's dying. This is scary.

Now, let's turn to Dad,...he's been in control of everything and now his wife is dying and his son has taken control over his affairs...this can't be. Plus Dad is living in a strange where they may not do things right. He wants to go home. He wants to be independent. It is almost as if Son was approached by a family member and thrown into a nursing home, had his driving privileges removed and then told he cannot manage his affairs and that someone else would manage his banking, etc. Imagine everything Son worked so hard for has now left his control. He would be afraid.

Once we put ourselves in our loved one's shoes, we are able to more compassionately and easily handle affairs.

Second, the Son and DIL need to understand (this is very hard) that if he does have Alzheimer's or any other related dementia which reduces his cognitive function that he most probably is afraid (as any one of us would be). Out of this fear he is grasping for control; hence the accusations to his Son and DIL of stealing. Additionally, driving privileges are usually very hard for men to give up...women have tended to be easier in this regard.

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's (also AVAILABLE in Audiobook and in the German language) and Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times.

Friends who take time to care
are really angels....unaware

Hugs and Peace,
Jamie and Karen