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The Ribbon - Care for Caregivers
Volume 7, Issue 9
May 17, 2003

www.TheRibbon.com

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Life with a spouse who has dementia is much different than life caring for parent or grandparent.

When caring for others, you have your spouse to talk to or their shoulder to cry on. It seems that I'm losing my partner of 23 years, day by day. I have to be so careful in how I say things or ask things. Before, if he did something odd, I'd just blurt out, "Why the heck did you do that?" Now I have to think before I speak. I want to be careful that I NEVER make Nick feel dumb or useless. I am slowly taking over doing things around the house that he used to do. I have to be very careful in this also, as he is a proud man and it hurts him so when he realizes he can't remember how to do something.

I am really starting a new journey and I do believe it will be the toughest yet. I know I will be able to give him the best care I can because I know that I have the support of all of you.

Last weekend the sibs and I and families went to visit Andy and Sam. We just didn't want to be apart on our first Mother's Day without Mama.

Nick slept about half of the trip down on Friday and was very quiet that whole evening. He didn't even have much to say to my sister, whom he loves dearly. We played Trivial Pursuit and Nick watched TV.

Saturday morning he was still pretty quiet but as the day wore on he started perking up. He joined in playing UNO Attack and cut up with all of us.

Sunday was pretty somber for all of us. It seems we were all quiet and just going about our business of repacking and loading the cars. Linda, my sister, and I exchanged our "Sister Gifts". I gave her a butterfly house and she gave me a porcelain plaque that says, "Sister, my friend forever."

Nick and I left about 12:30 and he slept the whole way home. I can now see that trips are going to take a toll on him. We won't be able to go and visit the family as often as we had hoped we would. It's good to know that the family will come and visit us sometimes if we can't go to them.

Over all, I had a nice and quiet Mother's Day and that is just what I needed.

Jamie


A Reminder....

It has been a while....but a reminder seems to be in order. As some of you know, I am the person who has the task of actually sending out the e-mail issues of The Ribbon. Having expanded our mailing list to almost 700 readers, this is a time consuming job. But I am an organized person and can get it done smoothly if my mailing list is current.

A few issues ago I had almost 20 issues returned as "Undeliverable". Either the addresses were no longer good, the persons' mailbox was full or, in one case, the person had "refused mail from your address".

I must ask again, if you no longer want to receive The Ribbon, for whatever reason, please, please let me know. Type the word Delete in the subject line area and send to me.... Karen@theribbon.com ....and I will remove your name.

The administrative chores that go along with The Ribbon....maintaining the mailing list, responding to e-mails, forwarding articles to Jamie to include in the next issue.....all require a lot of time. These returned issues leave me not knowing what the reader wants me to do and in some cases, I simply have to delete their names in order to keep the process moving.

Our mailing list grows almost daily and we are very thankful for that. But please help me to make it a smoother process....just let me know.

Karen
The Ribbon


Difficult Decisions

Aunt "Rose" is 94, very frail, bedridden and unable to communicate but is still a beloved member of an extended family. She is in the hospital again with dehydration and sepsis. She has become a "frequent flyer", as they say in the healthcare system: moving from the nursing home to the hospital and back again every few weeks. Although her family and nursing staff are very caring and attentive they can't seem to break the cycle. During this last hospitalization the doctor broached the subject of artificial feeding. Her family is unsure of what to do, they don't want to prolong her life if the quality will be compromised but they can't imagine life without her.

When caught up in these kinds of quandary caregivers need to step back and look at the big picture. Ask: "What will be accomplish by extraordinary care? Will the person's quality of life be maintained or improved? Whose needs are being satisfying, yours or your loved one's?" There is a quote by the Dalai Lama that says, "Remember that the best relationship is one in which your love for each other exceeds your need for each other." It's hard to let go of a loved one, but sometimes it's the most loving thing we can do.

No one wants to face death and dying - it is easier to ignore that part of life. But it is a part of life and caregivers must prepare and plan for it. I recommend reading Hard Choices for Loving People by Frank Dunn. This compact easy to read book addresses CPR, artificial feeding and comfort care for someone with a terminal illness. It can be ordered by mail through A&A Publishers, Inc., P.O. Box 1098, Herndon, VA 20172-1098, or through the website, www.HardChoices.com/. But the best course of action is to ask a loved what his or her wishes are for end of life care. I encourage every adult regardless of age and health status to write a Living Will (also called a Medical Advance Directive) and include a Durable Power of Attorney that identifies a healthcare agent of choice. A Living Will not only lets you say what kind of care you don't want, it allows you to state what care you do want when you are unable to speak for yourself. The Durable Power of Attorney empowers the designated healthcare agent to follow your living will and advocate for you. These documents only become valid when the person can not make his or her own decisions. The person must be competent to sign them, so don't wait too long to address this issue.

There are many resources available to help with writing a Living Will. Local hospitals and Hospices have standard forms and documents can be downloaded from several websites such as: www.aarp.org, www.choices.org/ad.htm, www.elderweb.com, www.jjs.com/healthforms.html. Aging with Dignity is an organization in Florida that produces a document called Five Wishes. It covers everything from naming a healthcare agent to how you want to be treated by others. It can be obtained by contacting Aging with Dignity, P.O. Box 1661 Tallahassee, Florida 32302-1661 or www.agingwithdignity.org. There is a small fee but it's well worth it. In order to avoid any unnecessary heartache it's a good idea to check with the State Bar Association about what documents are legally binding in the state where the person resides.

Since it's too late for Aunt Rose to make her own decisions, her closest next of kin will be asked to decide. If there are several close family members, a meeting for a consensus should be held and one person designated to make the decisions. Consulting with Hospice is also a good idea. They can help weed through the medical jargon and put things in perspective. Hospice is about life, especially quality of life. Under their guidance people are cared for with compassion, treated with dignity, and families are comforted and counseled through a difficult time.

Many Blessings,
Mary


Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. 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@comcast.net.


Adult Day Centers: A Viable Alternative to Nursing Homes

From alzheimers-tips.com

by Risa Levovsky

An increasing number of adult caregivers are face theresponsibility of caring for their aging relatives. Many working caregivers find their options are limited. They become frustrated as they search for a safe setting for family members who are frail, disabled, suffer from depression or memory loss. As a result, older adults remain socially isolated at home. They may have trouble walking, using the restroom, getting nutritious meals and taking medicine without assistance. One of the best-kept secrets in healthcare is an adult daycenter. In 1978, there were only 300 adult day centers in the United States. According to The National Adult Day Services Association, Today, there are more than _____ centers. As our population ages, they prefer community based alternatives such as adult day centers.

For Caregivers, Adult Day Centers Offer:

  • Respite and relief from the responsibility of 24-hour caregiving
  • The opportunity for caregivers to remain employed
  • A cost effective alternative to institutional placement
  • Reassurance that a loved one is safe throughout the day

 

For Participants, Adult Day Centers Offer:

  • A chance to get out into the community to remain active
  • An opportunity to enhance their quality of life through socialization and recreational programs
  • A positive way to prevent isolation and boredom

Adult Day Centers may offer participants nursing care,therapy, nutritional meals and snacks, family counseling,support groups, podiatry, transportation and hair salon services.

Individuals who benefit from an adult day center may suffer from physical limitations and/or memory loss. For example physical limitations may be related to strokes, arthritis,osteoporosis, vision impairments or hearing loss. Individuals with memory loss may have a diagnosis of Alzheimer's disease, Parkinson's disease, Vascular Dementia or other types of Dementia.

A typical day at the center may include current events, reminiscence, trivia, exercise, art, music, pet therapy, gardening, cards, guest speakers, outings and much more. In order to meet the needs of working caregivers, many centers have extended hours. Some are open on weekends and may offer overnight care.

Staff members in a day center should be trained in dementia care and must have expertise in assisting disabled adults with ambulation, transfers and incontinence care. At many centers, a registered nurse is available to provide health monitoring, blood pressure and glucose checks, medication administration and nutritional counseling.

Case managers play a critical role in helping families assess their individual situation. They develop an individualized plan of care to meet each participants physical, social, emotional and financial needs. In addition, they may lead caregiver support groups, provide individual counseling and coordinate volunteer programs.

Under certain conditions, Medicaid Waiver Programs, long term care insurance or the Veterans Administration may provide funding for participants. Private pay rates range from $30-$70/day. Transportation is usually an extra charge. Some adult day centers provide sliding scale discounts to qualified participants. The average cost per day is much less than 1:1 home health care and about half the cost of skilled nursing facility care.

A common concern expressed by caregivers is the fear that their loved one will resist attending a center. Change is difficult for everyone. It is imperative that you give your family member ample time to adjust to this new routine.


Risa Levovsky, author of Alzheimer's Tips Revealed, wrote this article: Successful Caregiving in the 21st Century. To order a copy of the book, go to www.alzheimers-tips.com. Copyright-Risa Levovsky 2002 Library of Congress

Risa Levovsky - After ten years of research on the front lines, I have developed a simple program that teaches both caregivers and professionals exactly how to provide quality care to individuals with Alzheimer's disease and other forms of memory loss. I am not new to this cause. My research was discussed on ABCNews.com in an article entitled 'One Caregiver's Struggle with Alzheimer's disease. I also wrote a column entitled 'The Caregiver's Corner, for Southern Lifestyles Magazine. for ten years, I worked on the front lines. My most recent position was The Center Manager at the award winning Weinstein Center For adult Day Services in Dunwoody Georgia. Now I devote 100% of my time to promoting my first book and to fundraising for caregivers. In an effort to raise funds for caregivers, I donate 50% of the proceeds to any organization that promotes my new book entitled 'Alzheimer's Tips Revealed: Successful Caregiving in the 21st Century. Visit the author's web site at www.alzheimers-tips.com.

Copyright Notice: It is illegal to reprint articles, in any format (including emails, web sites, etc.), without explicit written permission from the author of this article.


In Passing: Those We Must Remember

It is with much sadness that I must write to tell you I received news that Rhymers83, or Robin to us, lost her Mother earlier this week from a massive heart attack. Her Mother was the caregiver for her Father. Naturally, this has taken Robin and her family all very much by surprise and they are reeling.

I have spoken to Robin. The services were today (May 16), and she said it was a very long and difficult day. Please join with me in extending your sympathies to Robin and her family during this very difficult time.

Love Always,
Linda
Linda@theribbon.com,
www.TheRibbon.com/GatheringPlace


Nannydean or Datel123 lost her mother to cancer. Her mother put up a long fight against this disease but it finally won. Dean was able to be in MS with her mother for a week and a half before she passed. She there when her mom passed. Please join us in sending your heartfelt sympathies to Dean and her family during this very hard time.


Gathering of Friends

Have you been thinking about it?? Do you think you might want to attend? Are you talking about it? Are you curious about who or what GOFie is?

We will be attending the Alzheimer's Association: Mid South Chapter Memory Walk as the team of Jane's Angels. We will do a bit of sight seeing. We will be doing a small Memorial. We will eat. We will talk. We will laugh and cry. We will create many new friendships.

Can you think of a better Respite Weekend? You'll meet The Ribbon Staff. You'll meet some of the people who contribute to The Ribbon. You will meet people you've talked to at The Gathering Place.

Continue thinking and talking....we will be setting a deadline soon for you to let us know if you may be able to attend. We would really like to have even more people than we've had for the last two GOF's!!


From the Recipe Corner

We have a new recipe from Kristina Fresquez, Spicy Orange Salad with Green Onions . Kristina said it is nothing special, but something she enjoys. It happens to be a really nice salad, we suggest you try it. Thank you Kristina.

June is "The Wedding" month. One of our readers suggested giving a new bride all the recipes from The Recipe Corner as a shower gift. The idea was to arrange the recipes in a binder book, put a couple of plastic sheets in the front (to keep recipes clean, while using). Make a pretty cover, tie the book up with wooden spoons or some kind of kitchen ware. Our recipes are from our readers and staff, all tried in our kitchens, some are old family "goodies" and it makes a thoughtful gift.

Thank you for your notes, and recipes, PLEASE keep them coming, as they are greatly appreciated. The goal is for The Ribbon to assemble all the recipes into a cook book.

A special Congratulations to our Karen, Editor of The Ribbon. Karen is a new grandmother, her daughter Jennifer gave birth to a girl ......Natalie Grace.

Micki, Food Editor
Micki@theribbon.com


News that will be breaking soon

How many times have you gone to your mailbox and found that not so good email from me? I know, way too many more times than you or I even want to begin to think about!

Folks, I am sitting here, just bouncing off the ceiling from some of the most exciting news I have had the good fortune to share in a very long time.

The only problem is that I want to wait until it is officially announced and that won't be until June 19.

Watch for the announcement in the June 28th issue of The Ribbon. That is if I don't explode and write it up to be printed before then! I will give you one hint, it is about our Jamie.

Keeping a secret for now,

Love Always,
Linda
Linda@theribbon.com,
www.TheRibbon.com/GatheringPlace


Links

Some newcomers to The Gathering Place this week were wondering how and when you make the decision to place their loved one in a nursing facility.

Here are two links from past issues where we covered this topic and had great responses.

Nursing Homes - Special Issue from TheRibbon.com, found at http://www.theribbon.com/articles/special1.asp

Saying Goodbye to Independent Living from TheRibbon.com, found at http://www.theribbon.com/articles/indliving.asp


Until next time!

Hugs and Peace,
Jamie and Karen

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