Volume 8, Issue 10
June 18, 2004
www.TheRibbon.com(Link: http://www.theribbon.com/ )
1325 Venus Drive
Nashville, TN 37217-1918

Today I'd like to start off saying Congratulations! I attended The Laughter Remedy presented by The Alzheimer's Association. Before the silent auction, just by seat sales, etc they had raised $30,000! I attended the event with coworkers from Bridges. Bridges is a sponsor of this and the Memory Walk. A terrific time was had by all! We were introduced to the 2004 Caregivers of the Year....Family Caregiver is Jody Kolbe who is caring for her sister-in-law, Ruth. Professional Caregiver is Madleyn Miller who is a Resident Care Assistant on the Alzheimer's Unit at Mary Queen of Angels. It was nice to meet these ladies and so nice to be able to give them a standing ovation. It is well deserved! Congratulations Ladies!

I am feeling much better than I was last issue. I did call out at work for all three days. I felt terrible...couldn't remember anything, dizzy, feeling awful! I went to my new doctor and he put me on an antibiotic and took blood. I got a call from the nurse a couple of days later telling me that my cholestrol was up and my potassium was up a bit. The doctor gave me a prescription for Lipitor and I will be going back on the 23rd for more bloodwork. I've been watching what I eat for the most part and that is hard...I like Southern Cooking! I've been getting out and mowing each week for exercise. I do love to do this so I don't really consider it work. I'm trying to do a little bit of exercising on my days off and this I do not like...it is work. (smiling)

Now skipping off to this issue...

Jamie

The Mysterious Case of the Hoarder

Another frustration for the Tired Family Caregiver

by Starr Calo-oy

Does this sound at all, unpleasantly familiar? "Where on earth did I put my keys? I hung them up last night when I got home, I think? Betty, have you seen my keys? I am late enough as it is. Are you sure you didn't move them when you cleaned up last night?" And then it slowly dawns on you, as this nauseating churning in the pit of your stomach begins. "Betty! Check your mother's room. Look in her closet behind the red shoes. See if they're in there and hurry!" Sure enough, Betty saves the day and finds her hysterical husband's keys and another mysterious case of the hoarder is solved.

Betty's mother has Alzheimer's disease and tends to take anything that suits her little fancy that's lying around. Nothing is safe. Nothing is sacred.

The Alzheimer victim does not attach any particular monetary value on the things they take and hide. It could be a bar of used soap, a remote control, assorted shoes, socks or other pieces of clothing that do not fit them. So why do they do it?

No one really knows for sure, but there are a few theories out there and I will share some of mine with you.

They may pick something up, play with it a while and then forget where they got it from a few minutes later, so they just stash it out of sight.

They may be reliving their childhood days; a time when they were very poor and had very little. They exhibit "stockpiling" tendencies because they are fearful that later on they will be without once again and they might have need for the item. This behavior makes them feel secure and that, in a sense, they are providing for the future.

They may feel that they are helping out by cleaning up the clutter around the house.

A few creative ideas

Don't leave important things lying around.
Have duplicates of things you need and can't live without like keys, hearing aide batteries and eyeglasses just in case your loved one pillages them.
If you do not want your loved one to have access to specific drawers or cabinets, then secure them with childproofing hardware or locks.
Get rid of the clutter.
Look through your wastebaskets before the trash is thrown out.
Take note where your loved one "stashes" things. They tend to return to the same location each time they retrieve their little trophy.
Lock up some of the rooms in the house so that your residing hoarder has fewer places to hide things and you have fewer places to search.
Make up their own little trays of fake jewelry, old keys (that do not work anymore!), and trinkets that are safe for them to pick up.
Give them small shopping bags and a few old purses to satisfy their compulsion and keep them safely busy while you get your housework done.
Don't keep your money in plain sight.

The Don'ts

Don't panic, scream, and cry in front of them. Don't yank your things out of their hands- offer to "trade" them instead. Most importantly, don't fail to keep your sense of humor. You're going to need it!

Starr & Bob Calo-oy, authors of The Caring Caregivers Guide to Dealing with Guilt are delighted to share their hands-on experience with the public now. For the past 15 years they have cared for numerous elderly patients in their own home so they speak, teach and write from a wealth of hands-on experience.

You can read more about them and order their book at their website: Caregivers Guide(Link: http://www.caregiversadvice.com/ ) They are truly amazing people!

Inquiries

From time to time we get an inquiry from a reader. These two have come in recently and I thought I would let YOU, our readers respond. I know when we've asked in the past you have all come through with your thoughts.

One of these is sure to draw debate and for that reason if you wish to have your name omitted then please state so at the end of your email.

Please also remember that caregivers may not always have their person living in their home. My mom lives in a board and care home. It may not be quite as difficult as having her live here but she is my responsibility nonetheless.

I am very afraid of Alzheimer's in my own future and would love to see the concept of assisted suicide in such situations addressed since I never want to live the way my mother has.
I was wondering,,,, if you could do an article... on how to feel good about taking time for yourself. Not to feel guilty about it.

There they are...now what do you have to contribute to help these two people?

Links

CNN: Medicare to cover scan for Alzheimer's(Link: http://www.cnn.com/2004/HEALTH/conditions/06/16/al zheimers.scan.reut/ )

Using PET scans to check for evidence of Alzheimer's disease will be covered under U.S. government insurance, the Centers for Medicare and Medicaid Services said.

CNN: Alzheimer's sufferer jailed, ordered to state care(Link: http://www.cnn.com/2004/LAW/06/12/alzheimers.drive r.ap/ )

An Alzheimer's-stricken man who repeatedly violated a judge's instructions to stop driving was jailed for eight days before he was ordered transferred Friday to a secure nursing home.

Alzheimer's Association ALERT!

IMMEDIATE ACTION NEEDED

E-mails needed as soon as possible, before July 30, 2004

UPDATE: Reagan Legislation and $1 Billion for Alzheimer Research

Two weeks ago, an ALERT was sent asking you to contact Congress to appropriate $40 million for clinical trials to prevent or delay Alzheimer's. Since then, President Reagan's death has renewed national interest in conquering AD. Many members of Congress are seeking ways to pay tribute to President Reagan, including substantial increases in AD research funding. In light of events, we have set aside our modest $40 million goal and are urging Congress to support $1 billion in AD research NOW and to enact legislation that provides the framework for future research, education and caregiver support.

Legislation has now been introduced in Congress to raise the limits on federal spending for research to cure, prevent and treat Alzheimer's disease. The Ronald Reagan Alzheimer's Breakthrough Act of 2004 (S2533/H4595) authorizes a doubling of current research funding and increases the nation's investment in caregiver support through respite care, family counseling, and tax credits.

This legislation tackles Alzheimer's as President Reagan envisioned more than two decades ago, when he said, "...research is the only hope for victims and families." It is the nation's only hope for keeping Alzheimer's disease from overwhelming our health care system and bankrupting Medicare and Medicaid.

According to a new study, annual Medicare spending for beneficiaries with AD will grow four-fold by 2025, to $294 billion, and will be over $1 trillion by 2050. Medicaid spending on persons with AD will reach $32 billion by 2025 and $118 billion by 2050. If we can delay the onset of Alzheimer's or slow its progression, savings to Medicare and Medicaid will be enormous.

As our lawmakers seek to honor President Reagan, they must be convinced that conquering Alzheimer's is a national priority!

Email your Senators and Representative today. Tell them to:

Appropriate $1 billion for AD research at the National Institutes of Health
Vote YES for the Ronald Reagan Alzheimer's Breakthrough Act of 2004

For contact information for your Members, go to: Find Your Legislators(Link: http://63.66.87.48/cweb4/index.cfm?orgcode=ALZ ), enter in your zip code and use the Sample Letter to send your emails. The link allows you to email your members of Congress directly!

Email Bag

Hello Everyone!

I want to thank you all from the bottom of my heart for all the support you have sent forth during the last couple of weeks since the passing of my Dad. Having the knowledge that my Internet family of friends were with me made things a lot easier. For those of you who sent E-support, I am sorry it took me a while to get back to y'all as I was computerless.

I am doing fine. His passing was a blessing for him. As I have said to many, he's had his first beer in almost 20 years, made a batch of beet wine, helped the Big Guy fix up some things that have run down, and he and his sister and parents are having a great reunion.

I also have to say special thanks to Mary, Jamie, and Peg (age order girls), for being there no matter what. You listened through some very difficult family times. The flowers you sent brought a huge and instant smile to my face and my heart. The flowers had a very special place during the services.

Not much attention was given to this during the services, however, I think it is worth sharing. My Dad was alway the kind of man who would lend a hand to anyone, at anytime. "Let me know what I can do, anything at all, just let me know." Dad was not aware of it, but his brain was donated for Alzheimer's research; the ultimate helping hand.

Again, thank you all so much for your love, support and kind thoughts to me and my family. It means more to me than y'all will ever know!

Big Hugs!

Always,
Linda
The Gathering Place @TheRibbon.com

http://www.theribbon.com/GatheringPlace/(Link: http://www.theribbon.com/GatherPlace/ )

Email: Linda@theribbon.com (Linda@theribbon.com)

Hugs and Peace,

Karen and Jamie