The Ribbon - Care for Caregivers
Volume 7, Issue 6
March 29, 2003

www.TheRibbon.com

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

I do not know how to start out this issue. It's hard to get my thoughts together as they are going all over the place so forgive me if I go off into 15 different directions.

As you all know, my Mama, passed away on March 15th. I'm so glad I was able to get the last issue of The Ribbon out early. All of your support, prayers and kind wishes helped not only me, but my family also during a very tough time.

My brother Andy, his wife, Sam, my sister Linda, and my daughter Kim were all with her at the time she passed. We had all been spelling each other during the long nights for a week and Andy and I had been up with her Friday night. He had gone to lay down around 8pm and I was playing games on the computer to relax. Linda, Sam, and Kim were in the bedroom with Mama. One of them came running into the living room and said "She's opened her eyes but they aren't focused". I ran in and Mama was gently doing the Cheyne-Stokes breathing. I gently closed her eyes and told them to go get Andy. When we all were there it wasn't 10 minutes until she took her last breath. We were there to tell her good-bye and to wish her a wonderful journey. Her death was so much more gentle than her mother's had been back in September. For her sake and ours I will be forever grateful.

My step-grandmother (and I only use that phrase to help keep everyone straight as she will always be my grandmother), Mother Ruby, Mama's 3 brothers, and all 5 children got to come and see her in the last 2 weeks of her life. She was alert and able to talk during each of their visits. She knew everyone by name and that was great.

At the visitation, Paula Hathaway from the Alzheimer's Association came by to give us "real time" hugs from PHOTOLJT. Linda had called her and asked her to come by. Paula went out of her way to visit with all of the family. What can I say about such a terrific lady? She sure is special to me.

Mama's funeral and burial went without a hitch and I think she would have loved all of the flowers and all of the people who came.

I had a visit from two of our Canadian readers this past Wednesday. Frank and Sandra are on a driving tour and will be visiting several of the people they have met at The Gathering Place Support. The Gathering Place - Online Alzheimer's Caregiver Support - TheRibbon.com(Link: http://www.theribbon.com/GatherPlace/ )

I'm taking a little time for ME in 2 weeks. I am flying to California to visit with PHOTOLJT! There will be no husband, no kids, no demands on me whatsoever! What a bit of heaven that will be for a few days. I know it will give me time to grieve as well as get me refreshed for what lays ahead in caring for Nick.

So I have that to look forward to, a new great-niece or nephew due in September, and for the BIG ANNOUNCEMENT Gathering of Friends will be held in Nashville again!! I'm waiting to hear for sure what the Memory Walk date will be in order to arrange for us to be able to walk again as Jane's Angels. So hold the last Saturday in September, or the 2nd Saturday in October open if you plan on coming. I will let you know as soon as I know.

I consider you all my blessings as your love and support helped me and my family when we needed it most. Y'all are the BEST!

Jamie


Quality of Life

What is quality of life? One person may define quality of life as enjoying the beauty of a sunset, while another would describe it as sharing a holiday celebration with family, working in the garden, watching a football game or solving a crossword puzzle. For each individual, the definition is different and deeply personal.

Each individual has her own personal standard of what is valued and what determines quality in her life.

In defining quality of life, many different factors may be considered such as: the ability to think, make decisions and have control in daily life; physical and mental health; living arrangements and social relationships; religious beliefs, spirituality and cultural values; the financial and economic situation.

Each person decides what is important and what determines quality in her life.

Why is this an issue?

Alzheimer's Disease is a degenerative disease of the brain. At present time, there is no medical treatment that will stop its progression. As the disease progresses, the affected person loses many of the abilities that are generally considered to be important in determining quality of life.

Over time, the person with Alzheimer's Disease becomes less and less able to live independently.

People without cognitive impairment tend to view the loss of memory and loss of the ability to reason, judge, communicate and care for oneself as greatly reducing the quality of life of the person with Alzheimer's Disease.

If the person with Alzheimer's Disease can no longer communicate or make her own choices or decisions, caregivers, family members, or health-care providers will need to make them for her.

This is very difficult, as the issue is not only deciding the quality of life for another person, but also deciding the quality of life for someone who has lost many of the abilities considered to be central to a life of quality.

Assessing someone else's quality of life is difficult, but is extremely important.

It is vital to avoid imposing one's own interpretation of quality of life on someone else. Every effort should be made, even as the disease progresses, to support the best possible quality of life for the affected person and caregiver.

What is the preferred choice?

It is vital that all those who participate in lives of people with Alzheimer Disease recognize that individuals with Alzheimer Disease are able to find pleasure and experience satisfaction.

The disease results in many losses, but it does not remove the ability to appreciate, respond to and experience feelings such as anger, fear, joy, love or sadness.

What can be done to enhance the quality of life of an individual with Alzheimer's Disease?

At all times, the person with Alzheimer's Disease should be treated as an adult, with concern for her dignity, privacy and safety.

Practices that depersonalize or stigmatize the individual must be avoided. These practices include labelling individuals with the disease, ignoring them, talking down to them or treating them like children.

Preserving the quality of life for the person with Alzheimer's Disease as losses occur requires the provision of the appropriate social and physical environment. Some key elements to consider are:

  • Learning about Alzheimer's Disease, understanding how it progresses, and knowing how to communicate with an affected individual. This is essential for all those who interact with a person with Alzheimer's Disease.


  • Building on the person's strengths. This allows for a sense of being useful and valued.


  • Whenever possible, giving the person the opportunity to make choices.


  • Ensuring that the person's overall health is monitored and assessed and that appropriate treatments are carried out. A diagnosis of Alzheimer's Disease does not automatically prevent the presence of other health concerns and disease.


  • Providing living spaces that are safe and give a sense of security, while allowing the individual to maintain her remaining abilities.


  • Respecting the need for companionship, including physical intimacy. Relationships with family and friends should be fostered as much as possible.


  • Knowing the person and being aware of people, activities and items that are known to give the person pleasure.


  • Providing support and relief to all caregivers. Caregiving is not easy and the quality of life of the caregiver must also be considered as it has a direct effect on that of the person with Alzheimer's Disease.

Quality of life must be a central focus for care. Because of the incredible losses caused by Alzheimer's Disease, we do know that there are many things that need to be addressed when considering the quality of life of another person.

All of these need to be tailored to the person and her stage of Alzheimer Disease.

From the Alzheimer Society of Canada(Link: http://www.alzheimer.ca/english/index.php )


In Passing: Those We Must Remember

We have received word that a long time friend to The Ribbon, Copper2321 lost her husband on March 24th. Copper says that she knows he is at peace now and truly she is too.

Please join in with us in expressing your sympathies and kind thoughts to Copper during this difficult time.


From Hussy2001@aol.com (Kristin)

My Mom passed away 10 days ago. She stopped eating, and 3 days later was in a coma....12 hours later I watched her take her last breath.
God be with you.
Kristin

This came as a note to Jamie during her time of need. What a special person Kristin must be....please extend your kind thoughts and sympathies to her during this very difficult time.


Advice

Caregiver wife, mom needs to take care of herself, too

Dear Barbara,

My father has Alzheimer's disease and it is slowly killing my mother. I try to go by every day and run errands, but she is really stressed out. I don't know what to do for her. She refuses to go to the doctor. She says he will just give her medicine to relax and she can't be sleepy and take good care of Daddy.

---Sandy B.,Nashville

 

Dear Sandy,

I certainly can sympathize with your mother. One of the problems with caregivers is the need to "do it all by myself." I think we all feel that it is our respoonsibility to be the ever-present companion, nurse, and housekeeper. I even felt priviledged to be able to do this for someone who had meant so much to me.

The most important task that you have to do with your mother is convince her that the only way to take proper care of your father is that she must take care of her needs first. If she gets sick, who will take care of him?

Taking care of herself means allowing others to step in and relieve her of chores or give her a break. Insist that someone in the family will come in one afternoon or evening a week and sit with your father. This will take some getting accustomed to for your mother. I remember the first time I left; I worried so much I vowed to never do it again. But, they prevailed with, "What if something happens to you? Take some time for your body and mind to rest."

Would she prefer doing some of the errands? Maybe a trip to the library or grocery would be such a change, the stress level would go down.

If she truly needs a physical checkup, tell her you will go with her to the doctor and help explain the situation.

Call often and listen with an open ear.

Your mother is probably carrying around a lot of guilty feelings and needs you to understand whatever she says. Remind her that your father isn't deliberately trying to make life difficult--although at times it looks that way.

Hang in there. She does need you.

Barbara Stephens' column appears weekly in THE TENNESSEAN. If you would like to share with her your grandparenting concerns, write to Barbara Stephens, Grandparents Corner, PO Box 30512, Knoxville, TN 37930 or send email to bsstephens@msn.com (bsstephens@msn.com)


Links

ABC News: Silent Strokes May Boost Alzheimer's Risk(Link: http://abcnews.go.com/wire/Living/ap20030327_273.h tml )

(March 26) -- Symptomless, unnoticed strokes more than double the risk of developing Alzheimer's disease, according to a large Dutch study that suggests many people could prevent the mind-robbing disorder by keeping their heart and blood vessels healthy.

Elderly people who suffered tiny ''silent strokes'' - detected by an MRI - had their mental function decline more sharply and were about 2.3 times more likely to develop Alzheimer's or other types of dementia, researchers at Erasmus Medical Center found.

The study, the first major one on silent strokes, was published in Thursday's New England Journal of Medicine. Experts say it indicates middle-aged people should exercise, eat a balanced diet and quit smoking to lower their weight, blood pressure, cholesterol and blood sugar level.


Spotlight on Caregiving

A free electronic monthly newsletter from the publisher of Caregiving.com, a free online support service, and Caregiving! newsletter, a monthly print publication.

Caregiving.com: Helping You Help Aging Relatives(Link: http://www.caregiving.com/ )

We are happy to provide you with this link as Denise has always been gracious in sharing articles with us.


Email Bag

From SharronB@att.net (Sharron)

Thank you for seeing that I received the Ribbon. It was such a good site.

I know with John's father just in the beginning stage, I will be in much need of information from this site.

God Bless you both for all that you do for others.

SharronB@att.net (SharronB@att.net)


From ikeyandi@global.co.za (Karen)

I am one of the new recipients of The Ribbon and what a blessing it has been. My Mother has Alzheimer's disease and has had since 1996/97. My father passed away on the 13 December 2002 and the Crossing the Creek brought back so many clear memories of that time a few months ago.

I wish you and your family strength during this very difficult time - you are all inmy thoughts and prayers.

Thank you for this wonderful newsletter - I am pleased that I have found found it as well as Crossing the Creek.

With much love
Karen
Cape Town South Africa


From CAREVOICE@aol.com (Brenda Avadian)

Hello The Ribbon Readers!

I had to write this eMail to let you know I met Mary C. Fridley at the American Society on Aging/National Council on Aging conference in Chicago!

As you know, Mary so kindly and regularly submits helpful articles to The Ribbon--articles that help us find our way as caregivers.

Here I was in my own little world, getting ready to present Finding the JOY in Caregiving: When Tears are Dried with Laughter when this quiet kind-mannered lady approaches me to say, "Hello." WOW! I just burst into smiles and spread accolades with JOY to see THE Mary Fridley who wrote Caregivers as Superheroes, which is at the beginning of Volume II of Finding the JOY in Alzheimer's: When Tears are Dried with Laughter to be released this July. [Then again, there are some pretty neat photos in this book of The Ribbon founders, the Gathering Place founder, and more!]

Anyway, what a JOY to meet Mary and exchange hugs as if we were long lost friends.

Ahhh, the power of caregivers across this nation--WE ARE TRULY FAMILY!

Smilingly Yours,
Brenda Avadian, M.A.
The Caregiver's Voice(Link: http://www.thecaregiversvoice.com/ )
Speaker and Author, Finding the JOY in Alzheimer's:
When Tears are Dried with Laughter
(Release date: July 2003),
Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times(Link: http://www.thecaregiversvoice.com/books/joy_alzhei mers.asp )
and "Where's my shoes?" My Father's Walk Through Alzheimer's(Link: http://www.thecaregiversvoice.com/books/wheres_my_ shoes.asp )
(also AVAILABLE in Audiobook, the German language, Die Zeit mit dir,
and "¿Dónde están mis zapatos?" in Spanish and soon in Korean).


We whole-heartedly agree with Brenda in that WE ARE ALL TRULY FAMILY. No one really understands us unless they have been in the caregiving role. That is why we stress you have a support system. Of course, we recommend The Gathering Place(Link: http://www.theribbon.com/GatherPlace/ ) which is hosted Monday through Friday, 9pm to 11pm EST.

Hugs and Peace,
Karen and Jamie

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