Happy GroundHog Day! I hope that the old guy doesn't see his shadow this year. I don't know about you but I'm growing weary of these gloomy cloudy days! I'm ready for some Springtime weather right now.
Although the date on here shows the 2nd....I actually do this the night before, therefore it is Feb. 1. It is my birthday. It is the 9th anniversary of my 39th birthday. I had hoped to spend the day being carefree but when I woke this morning and saw the TV, it has made me do a lot of thinking.
First I want to say that our hearts go out to the families and co-workers of the crew of the Columbia Space Shuttle. This was such a devastating thing to happen. I can't begin to imagine to know how those families are feeling. To be on the edge of their seats, knowing their loved one would be home on earth in about 16 minutes and then to find out that they were no more. It had to be horrific. My heart has been heavy today everytime I thought about them all. Needless to say, I have said quite a few prayers.
Second, being my birthday, I have felt the love of my family and my friends. I have felt happiness along side the sadness today. It made me realize that this is how our days tend to run on a similar path each day we live with Alzheimer's Disease. We are so saddened when we see our loved one lose another part of themselves but yet we are filled with love when we see that they still have so much left. Examples are.....Our loved one may not remember us for days, weeks, or months but one day they call us by our name. Or they say "I Love You" and you know that they are very aware of who they are talking to... or YOU realize just how much closer you have grown to the person you are caring for because of what you do.
I have felt sad today not only because of the terrible tragedy but because I realize that I have been caregiving for about 9 years now and have seen what this disease does to my loved ones. I've been happy thinking back to the little things that happened that make me giggle or fill me with overwhelming love. I am now grieving that my mother has had this terrible accident that has changed her personality but I'm am so excited that thanks to physical therapy she is now physically stronger than she has been in years.
I had hoped to quit smoking before Mama came home but have found out that the stress is too great right now. I am smoking outside the house so that at least Mama won't have to smell it inside. She was a chain smoker before this happened....4 packs a day. Now that she isn't smoking she is doing so much better.
She begged me for a cigarette one night....I finally gave in and gave her one. She smoked it and coughed all night long...something she hasn't been doing since she came home. A few mornings later she asked for another....I truthfully told her that I did not have any. She told me that she knew I did and she wanted one. I finally told her that I did not have any and wasn't going to go buy any. I got very upset with myself because I hadn't quit so that we didn't have to go through that. Then I got mad because I thought, geez, I have given up my life for 9 years and why should I have to give up my cigarettes! I threw myself a major pity party that day.
Want to know what saved me? I made a phone call to PHOTOLJT and asked her if I could vent for a few minutes....she of course said yes as long as it wasn't about her. (Smile) Her advice to me was for me to realize that I had cut back on my smoking since I was having to go outside now so therefore I was doing better than I was before, and if Mama were to ask for another cigarette then I was to tell her that the Doctor said that Mama COULD NOT have another or she would have to go back into the nursing home. I could also tell her that I could be brought up on Elder Abuse Charges as the smoking was extremely hazardous to Mama's health. Fiblets??? Yes, you bet and I will use them if necessary.
That brings me to a point.....I have been reading a book called 'Share the Care': How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnock. Their idea of a Care Group is terrific and can be adapted for an Alzheimer's Patient. I will continue reading this book and will work on an article about this for The Ribbon. If this type of idea were put into place all over it would help make a caregiver's job much easier.
I consider Linda one member of my group...she is always available for me to talk to, as are many members of my family.
By the way, Carole firstname.lastname@example.org (email@example.com) was the person who told me about this book and even sent me a copy. She has been diagnosed with Vascular Dementia and is on the board of DASNI.
I do want to say thank you to all of you who wrote to tell me how easy it is to give an insulin shot. The first one was scary and now I feel like a pro. You guys are so terrific!
What is "Communication" to the Person with Alzheimer's?
by Mary Emma Allen
So many people think those with Alzheimer's can no longer communicate nor have feelings. We don't know what they can hear and understand, especially when they have hearing problems, too, or often cannot form words, only sounds.
Communication to them becomes touch, a kind voice, a loving atmosphere. We learn so much about various ways to communication if we're patient with our family members and friends with Alzheimer's or dementia.
A smile, a touch, a kiss on the cheek, soft words would bring a smile to my mother's lips.
Did she know who I was, what I was saying, why I was there? I don't know for sure. But it didn't really matter as long as I brought enjoyment into her world.
When I visited with my grandchildren, Mother suddenly began to make sounds which caused the five-year old to giggle.
"Grandma Dee Dee talk to me," he said.
Then he jabbered to her while Mother looked toward him and mumbled some more. To this day, several years after my mother's death, he still insists she talked to him that day.
Did Mother understand what we were saying in our conversation around her? Did she understand her great grandson? It didn't matter what we thought...both of them seemed to be on the same wave length for those few minutes that day.
We don't know for sure how much someone with Alzheimer's can hear and comprehend of conversations around them, because they can't verbalize a response. However, some form of communication takes place which doesn't have to be in words, to bring contentment to our family member and a sense of peace to ourselves.
(c)2003 Mary Emma Allen
(To help others understand...for their loved one's sake and for their own, I write and speak and share my experiences with my mom and aunt. Out of this has grown my book, "When We Become the Parent to Our Parents." For more information, visit my web site: http://homepage.fcgnetworks.net/jetent/mea; E-mail: firstname.lastname@example.org (email@example.com))
In Passing: Those We Must Remember
A New Angel
There is a new angel up in Heaven. Her
name is Maria. She was only 36 years old. She was a wonderful
wife, mother and friend. She leaves behind her husband, Jack
and 3 beautiful children. She was very close to her sisters and
her brother. Her passing leaves a tremendous void in all of
Before I Forget
The Person With Dementia's Perspective
These two projects are to keep you informed not only about me but for all who have been diagnoses and not diagnosed with the early stage fatal dementias. They are not elderly diseases, our international group has two carepartners of teen agers and we have PWiDs (persons with dementia from 23 through 30's, 40's and up to 80's with early stages).
You Don't Look
Like You Have Alzheimer's
I may not different
and I am still me
From firstname.lastname@example.org (Jeanne)
"Alzheimer's Disease: Unraveling the Mystery" updated
The National Institute on Aging's Alzheimer's Disease Education and Referral Center is very pleased to announce the release of the newly updated publication "Alzheimer's Disease: Unraveling the Mystery."
This 60-page book and accompanying CD-ROM offer a comprehensive overview of the brain and Alzheimer's disease (AD) in easy-to-understand language. Contents include: a walking tour of the brain; current research and understanding of the causes, diagnosis and treatment of AD; and resources for AD caregivers. The CD-ROM includes an animation video showing the progression of AD in the brain, as well as graphics and text files.
Copies of the book are available FREE from the ADEAR Center, by calling 1-800-438-4380, or by e-mailing email@example.com. You can preview or download the publication online at: http://www.alzheimers.org/unraveling
Please pass the word to others who may be interested!
you ever been sitting at your desk, diligently working away (big
smile) and pick up the phone to hear a frantic voice, "Do
you have time to listen to me snivel for a bit?" Sure!
You bet! Let it rip!
A Life of My Own
A life of my own with some privacy
Editor's note: Marcia is kind enough to send this in to show what she is doing to relieve stress. This is such a creative way to journal!
Hugs and Peace,