The Ribbon - Care for Caregivers
Volume 6, Issue 19
September 22, 2002

www.TheRibbon.com

1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Dear Friends,

I am glad to be back with you again. I'm still in a bit of shock I guess you'd call it. Here at home, the family and I are still listening for Nanny and every time the phone rings, I think it's Mama calling me because Grandmother needs me. Sometimes it seems as if everything happened yesterday, sometimes it seems like it was a long time ago, and sometimes it feels like it was just a dream. It is really strange.

My mom was having a hard time dealing with the sense of freedom she felt. She said she felt a great loss but the feeling of freedom was overwhelming and she was feeling so guilty because of it. I assured her it was a normal feeling that caregivers go through when death occurs, after all she has been "tied down" for over 2 years now.

I am still dealing with the emotions of helping 2 grandmothers "cross over" one day apart. Nanny was sudden and unexpected. We had her rushed by ambulance about 6:00 PM on Friday. She was in the ICU at Baptist Hospital and being well cared for. The nurse called about 4:00 AM Saturday to tell me that it wouldn't be much longer. My daughter and I rushed to her room and we were able to tell her good bye and let her know it was okay to go.

We came home and called all my siblings and other family members. Everyone got on the road to get here. We went to the funeral home to make the arrangements and got very upset because they couldn't have the funeral and burial on Monday. We found out later there was a reason for that happening.

On Sunday we went for the viewing. How could we do much crying? Nanny had a smile on her face! She was Home and very happy about it! I've never seen someone with a smile on their face when they have passed.

Mama called us Sunday afternoon to tell us she couldn't get a BP reading on Grandmother. We rushed home from the funeral home as the Hospice nurse had told us the day before that it was becoming time for Grandmother to go Home soon. There wasn't much change in Grandmother the problem was the BP cuff had become loosened. We went back to the funeral home to be with Nanny.
That night after we had come home, most of the family was here and the last one was on his way. I was staying over at Mama's keeping an eye on Grandmother. I knew stuff was happening but was trying not to let Mama know too much just yet. I just let her know that things were getting worse. At about 10:30 Sunday night I called everyone to let them know they needed to get to Mama's. Grandmother passed at 11:15 PM with her daughter, 3 grandchildren, 5 great grandchildren and their spouses around her bed.

Now we knew the reason for what had happened. Nanny passed in order for all Mama's kids to be there for her when she lost her mother. Nanny had to be buried a day later than her funeral so those who needed to go to Michigan to bury Grandmother could attend Nanny's funeral service. There were 8 of us there to see Nanny buried so we all decided to be pall bearers...I'm sure Nanny smiled even bigger with that one.

Perhaps you sent a lovely card,
Or sat quietly in a chair.
Perhaps you sent a funeral spray,
If so we saw it there.
Perhaps you spoke the kindest words,
As any friend could say;
Perhaps you were not there at all,
Just thought of us that day.
Whatever you did to console our hearts,
We thank you so much whatever the part

By the family of
Margaret (Nanny) Bradford
Gertrude (Gertie) Smith


Mission Not Impossible

Managing Alzheimer's Related Behaviors

by Mary C. Fridley

If you remember nothing else remember this: all behaviors are expressions of need. Research has shown that an Alzheimer's affected loved one can still experience emotion and a sense of self even in the more advanced stages. The inability to effectively communicate her or his emotions or thoughts results in difficult, disruptive, or inappropriate behaviors. The truth is, the behaviors are inappropriate to you, but not to your loved one. She/he sees the world through her/his mind's eye. Frustration, anger, emotional or physical pain and thoughts are being communicated on your loved one's level. It's up to you to listen, observe, and try to understand and address those needs.

The first thing you should consider when your loved one has a sudden change in behavior is a medical cause, and urinary tract infection (UTI) is usually the culprit. Just the normal changes with aging puts all of us at greater risk for UTI's.

Behaviors can be triggered by uncomfortable or frightening environmental stimuli like shadows, sounds, and hot or cold temperatures. Your loved one can also mimic your attitude, behavior, and body language so it's best to maintain a calm demeanor.

There are several things you can do to minimize behaviors.  Comforting daily routines that are structured and predictable work best. Avoid boredom and over-stimulation. Create a "go to" place for comfort like a quite room for those times your loved one becomes overwhelmed with activities around her/him. Reminiscing is also beneficial. It allows your loved one to retreat to a more pleasant time and communication may be easier.

Three alternative strategies that can be useful are gentle massage, music, and rocking. Gently massaging your loved ones shoulders, neck, and upper back for five to eight minutes is relaxing and stress reducing. It works best when done before the behavior takes place. If you know your loved one tends to be more difficult at a certain time of the day, try gentle massage shortly before that time. Music is also calming and stress reducing. Play music your loved one enjoys, preferably something soothing, when she/he becomes agitated. Again, if you know there is a certain time of the day that is more difficult, start the music in advance. Music can also be used to energize and exercise. Dancing or just moving to the music is uplifting and imparts physical benefits too. Physical activity has been shown to have a positive effect on reducing agitation. For those of you with loved ones who pace or wander, a rocking chair may be the answer. Wanderers have a need for movement and rocking can satisfy that need. It doesn't hurt to try.

Behaviors can be anticipated, managed, and prevented if you know the cause, effect, and normal progression of the disease. With knowledge and the right tools you will be empowered to cope with any situation. Of course the cardinal rule is never argue...you will lose!


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 writing 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: geroresources@hotmail.com (geroresources@hotmail.com).


Before I Forget

The PWiD's Perspective

We will start to feature some of the online journals of our friends who have been diagnosed with a form of Dementia. We hope that by reading their journals it will help you understand how they feel, what they go through, and how absolutely strong they are. Learn from them so that you become a better carepartner!

We will start with Mary's Place at www.angelfire.com/ok4/mari5113/index.html

September 21, 2002
HAPPY ANNIVERSARY CHRIS AND JENNI!! Jenni is our granddaughter in Norman, Oklahoma &em; I had too much fun yesterday. I did some retail therapy with my daughter- in- law and we did lunch, made a trip to the airport with Dave, and then Kenny, Kathy, Heather, and her little friend came for a visit, so when I went to bed at little after nine I was so tired. At 1:00 this morning I was trying to figure out why I was still awake, I was feeling horrible. I had been awake for over eighteen hours. I didn't want to get up and go check to see if I had taken my medication because I knew the dogs would bark and wake up Dave. So I just laid there wide awake and oh so tired. Finally I decided to get up and go check and sure enough I hadn't taken my bedtime medicines. Trying to be real quiet I reached for my sleeping pill bottle and dropped it and made a terrible racket but no one woke up. Got my pill out of the bottle to take it and dropped the pill on the white ceramic floor. So then I had to go hunting for it. I sure didn't want my little dogs finding it. I found it and took all my bedtime medicines and got back in bed and no one woke up. I could have wandered off and no one would have known...I think I need a nurse!!! Dave usually will make sure I take my bedtime medication and usually I remember to take it by myself. But last night we both goofed... I woke up feeling terrible but felt better by the time afternoon got here... I did some laundry and folded clothes from yesterday's laundry. I took care of my hanging plants outside and my indoor plants... David came by and brought us some fried pies Lori had just made and they were still warm, yummy! David was teasing me about my flying around Wal Mart and Lowe's yesterday in a motorized wheelchair and doing wheelies. Lori, do you have to tell everything??? I called my friend Joanne in Benton, Arkansas and my Sister in Peru, Indiana... A beautiful last day of summer... This morning we had three pigeons looking into our back yard from the neighbors roof but they decided not to come down. I think pigeons are pretty but we don't want them in our back yard... Goodnight all... Keeping the faith in Oklahoma


From the Recipe Corner

JoAnn Cherrico from Glen Burnie, Md sent us:
Banana Split Cake , Broccoli Salad and Spaghetti Salad , and Karen Anderson from Sarasota, Florida sent us Crispy Shrimp Burgers . Really great recipes, and thank you so much.

Since I cannot make and eat (and still fit in my clothes) all the recipes we receive I have friends who have been willing to make some of the recipes. We have really received some great recipes. So, go get some tried and true recipes, and let us know what you have made, and how you enjoyed the recipe. Don't forget to send us one of your favorites.

We would like to have some ideas from you for Halloween, treats, costumes and decorating. They will be included with the Recipe Corners News.

Thank you for your recipes and all your notes to me.
Micki Slattery,
Food Editor - micki@theribbon.com (micki@theribbon.com)

Please visit our new Recipe Corner. There you will find delicious 'family favorite' recipes. Please help add to our collection by submitting one (or more!) of your favorites.


Links

AOL Health News: Enzyme Sheds Light on Alzheimer's
A newdiscovery about an Alzheimer's enzyme linked to the formation of brain-clogging plaques may eventually lead to new treatments that could stop the progression of the disease -- even in its later stages.


You are cordially invited to listen to Gail Mitchell From Empowering Caregivers on Jacqueline Marcell's Internet Radio program, "Coping with Caregiving"

Click on this link and it will take you to the entrance page for Jacqueline Marcell. Click on the link in the upper left hand corner that says "Listen Live" A small window will pop up with a few questions to fill in...And the program will load from WS.Radio

http://12.162.161.64/cart/ProductDetail.asp?PR_ProductID=317

Other guests include: Shawn Bloom (Nat'l PACE Assoc), Janet Walsh (Alzheimer's Foundation), Doug Fusella (New Lifestyles) & Mary Furlong (Third Age).

wsradio.com Will be archived to listen online by 9-23-02.

Editor's note: This broadcast was yesterday but look for it in the archives of WSRadio.


From DASNI@aol.com

NPR: Alzheimer's
an NPR (National Public Radio - USA) segment on early Alzheimer's.

The focus of the segment is on early diagnosis, taking off from Charlton Heston's announcement of having Alzheimer's and then going to some of my personal reflections on what he said and on my own experience. I thought Joe Shapiro, the journalist, did a decent job of presenting the issue. Of course there were a number of other things I said to him in my half hour interview by phone on Tuesday morning that I would like to have seen in the segment; but, he focused on personal perceptions of facing and living with Alzheimer's, both Heston's and my perspectives. I think Shapiro did a good job.

This is just another small piece helping to put a new and larger face on dementia.
Take care.
Thad Raushi


From CareVoice@aol.com (Brenda Avadian)

Hello,

Here is an interesting LINK to Alzheimer's in America: The Aluminum - Phosphate Fertilizer Connection.

The results may surprise you (FERTILIZER)...read until the end.

The article was released 22 August 2002.

http://www.alternet.org/print.html?StoryID=13895

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


Email Bag

Dear Ribbon Well it is just a little dementia happy note or should I say funny. We wirh dementia really enjoy laughing at ourselves. As i read your newsletter I thought I cannot believe I forgot to send jamie and crew a thanks for putting the report on The Ribbon about my book "JUST LOVE ME". As I continued on feeling a little guilty I got to the mail bag and found I had written to you. This is the life I lead but I still have so much going for me. I will be going to International Alzheimer's Convention in Barcelona and will be in full charge of the DASNI Booth to promote our causes. I really hope to enlighten many more people that Alzheimer's and other dementia's are not only elderly diseases. At DASNI we have persons from 23 to elderly. We are just Turtles in a world of Rabbits. I really want to thank you for your site and think you could really help us to help the carepartner's jobs to be put off for years with the early diagnosis and medications available. Aloha Jeanne Lee


Hugs and Peace
Karen and Jamie

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