Volume 1, Issue 2 - The Ribbon Newsletter

Issue 2

Thank you all for the email you have sent regarding the first issue. We know now that we are on the right track. We wish again to let you know that you may send any questions, information, or articles to KMenges581@AOL.com.

As we all know, being a caregiver we tend to let our needs take last place to the needs of our loved one. We all need to take the time to make time for ourselves so that we will be better able to tend to the needs of our loved one and our families.

A Caregiver's Bill of Rights

I have the right...

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
To get angry, be depressed, and express other difficult feelings occasionally.
To reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt, and / or depression.
To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one for as long as I offer these quality in return.
To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting Caregivers.

--- Author Unknown

Words of Advice from Bean2591

Hello ladies, Thank you for putting me on your mailing list. I am sorry to hear about Bill and wish him well. I know there are many difficult moments in the lives of those living with a family member with AD. My experience started when I was about 8 years old when my grandfather developed a dementia. Long before drs. recognized it as anything other than senility. The year he died my dad was 49. That is the year he began having problems remembering how to get to work, make change at the store, etc. He is now 70 and in a SNF in Boynton Beach, Fl. Two years after my husband and I were married his mother developed memory problems, upon her death, it was confirmed that she had AD. (Research program at University of Tennessee) My dad's brother was diagnosed with AD about 6 months ago. Uch!! In 1984, with my mother, we started a local support group which has now developed into a fairly significant Alzheimer agency in Central Florida - The Alzheimer Resource Center. It has been a great opportunity to turn negitive energy into a positive effort to assist others in similar situations. I am by no means an expert in this field, only lots of experience. I still need support because dad is not doing well and it has been a very long and sad journey. In our newsletter this month we have an article about Caretaking and Caregiving. I am sending it for consideration in one of your newsletters! Here goes...

Are You A Caretaker or Caregiver?

Caretaker

A caretaker is one who places care for another above one's own welfare. A caretaker needs to "fix" the one cared for because he/she can only feel good about his/herself if he/she succeeds - in order to fill the void within. Caretakers burn out quickly. Caretakers are co-dependent persons who need to care for another to feel alive. Caretakers are conditional in their acceptance of others. They tend to be judgemntal about the person they would "help".

Caregiver

Caregivers are persons who "care for" themselves and others. Because they take care of themselves, they can choose to give care to another. Caregivers do not get caught up in results. They do not tend to "fix" another. They can be with another. They take their own actions but refrain from taking away the power of choice from others "for their own good". Caregivers empower others to make choices and take actions. And they celebrate their successes. Caregivers, since they tend to be non-judgmental, are unconditional in their acceptance of others.

Effective Caregivers

Eat Nutritiously
Are non co-dependent
Set limits and boundaries
Maintain regular physical exercise
Have a spiritual practice
Participate in personal and professional education and growth experiences
Maintain an attitude of openness
Are supported by groups and "coaches" or mentors
Practice being a listening presence
Keep a sense of humor
Live in gratefulness and wonder

My appreciation to you both for your teriffic efforts... shellie aka bean2591

Introductions to our Support Group Hosts

BHostRidl

My name is BHostRidl. I live in Missouri with my husband, a teenaged son who is learning how to drive (HELP!), and a pre-teen daughter. I am a teacher's assistant at a high school and I care for my mother and father who are in seperate nursing homes. I have been responsible for them since 1996. My mom has AD and my dad is a diabetic double amputee. I have been a member of this group for over a year now.

BHostSTS

I live in Massachusetts with my husband and three dachshunds. I have two grown sons who live in the Boston area. I am a part time medical secretary. My Dad was diagnosed with AD 11 years ago and probably had the early signs going back about 15 yrs. He has been in a nursing home the last eight years (two of which he was in PA and then I moved him to a nursing home close to me). I have been a regular member of the Alzheimer's and Dementia Support Group since January, 1997.

Caregiver Web Sites

katesdrm.home.mindspring.com
here is one very good site.....

Welcome to The Elderly Place

Note in Passing

From the Desk of Grief & Healing
KathyBMom@aol.com

I originally sent this email on December 22nd to BHBill and have just had time to figure out that you all didn't get this yet. I knew you couldn't have or you would have responded. I hadn't received a newsletter recently and wasn't sure. I'm just still trying to find my way out of the fog....it is slowly lifting. My grandmother died on December 20th and I miss her terribly! But I am going through the grief process and with fond memories, aside from the years of Alzheimer's and finally the cancer - I am healing and feeling much better.

I really am so sad today and although I new that time was running out.....I didn't anticipate the feelings of loss I would feel. My grandmother passed away on Saturday morning almost 8 weeks after her surgery which removed the massive tumor from cancer. Although I was able to prepare myself during those weeks, it still seems far too sudden to me. Prior to her diagnosis and emergency surgery, she was in perfect physical health aside from her mid to early late stage Alzheimers and I always thought that she'd be around for a long time. I realize that life isn't to be taken for granted and that each of us is only here for awhile (only God knows how long) and that dying is part of that life. On Friday evening I checked her temp and for the first time since the surgery she had one....and her breathing had changed. I felt strange and knew something was going on. I talked on the phone with the Hospice nurse, read through my Hospice book about the signs of near death......and cried a lot (again) knowing in my heart of hearts that her time was here. The hardest thing for me to do was to let her know it was okay to leave us now. They say it's important to give permission to the dying person. I did ask her if she could to hang on for a few days, because everyone was coming to see her - but I that I understood how tired she was and that she may not be able to. And that if she wanted to go be with Grandfather and Mikie (my brother) now then it was okay. I didn't want to leave her side that night, but the Hospice nurse and my body talked me into much needed sleep as I was emotionally and physically exhausted. As it turned out I needed that strength the next day. When I woke in the morning I saw her breathing on the monitor.....I layed there for about 15 minutes or more crying because I knew how sick she was and wished I could make her better. I got up and went into her room and spoke to her, placing my hands around her precious face calling out her name. She was still so nice and warm She didn't even stir. Again I called out her name. Oh God, is she gone I thought? I quickly grabbed a hand mirror and held it in front of her mouth to see if the moisture from her breath would be there. Nothing. No pulse either. She must have died just moments or minutes ago! I called my neighbor and friend who is a nurse to confirm for me that she was indeed gone. I was still thinking that perhaps there was a mistake and she'd wake up. And I didn't want to call my mom to tell her unless it was true. And it was.....that was very, very hard to do.....my poor mother was devastated. I wanted to reach through the telephone and hold her. Soon all of my family arrived and we began the process of grieving, healing and sharing wonderful memories of our lives together. That was and will continue to be the key factor over the coming days, weeks and months for all of us. My grandmother was such a huge part of my life always.....from the moment I was born through each day of my childhood into adolescence and young adulthood.....she was an integral part of who I was becoming. Once I settled into nurturing and raising my own family the love, respect and communication we had with each other only bonded stronger. My grandmother was a woman who loved and lived for her family each and every day. If any of you read the bible and read Proverbs 31 about the woman who is worth more than jewels, it perfectly describes her. Although it is just days before Christmas and it has put a damper on the holiday season, I have to believe and hold onto the gift that she left all of her children, grandchildren and great-grandchildren - the love she gave to us. It's in our hearts today and always will be! And her legacy will live on as we in turn continue to share the love she gave to each of us. How we will all miss her! I want to take this opportunity to thank you Bill and each of you who has supported me in the Alzheimer Support Group during this past year. It was very special to me to have all of you to turn to for help and advice and most of all for understanding. I want you to know that I will never forget you.....you'll always be in my thoughts. I also wanted to let you know that we have asked that donations be made to the Alzheimers Association of Western Washington as we will continue to support this very important cause anyway that we can. Although in the end she died of cancer, it was the Alzheimers disease that devastated her life during the past 4+ years. She hated this disease and all you all will agree we wouldn't wish it upon anyone. I also thank God that I had the privelege to care for my dear gradmother here in my home! Just as she did for me all those years ago..... I am sorry this was so long, but I needed to pour out my feelings on "paper" as part of my healing process. I wish all of you continued support from this wonderful forum that Bill Maitre has put together for us......keep the faith and hope alive! Lots of love during this holy season of love, KathyBMom

From FTSEFFECT

Please include in your newsletter that i have a bed alarm and will donate it to the neediest party if they drop me an email. This alarm cost 300 dollars..........Suzanne

A Thought to Ponder from NKEARN

Just a quick noteto say thank you for the newsletter and I think you did a wonderful job. I know you have a big job ahead of you and your first newsletter shows how well you will do. Would you be interested in sharing this in the next newsletter? Actually this is something I received from another member Lbueno9843 and I wanted to share with others.

"Happiness isn't about what happens to us -- it's about how we perceive what happens to us. It's the knack of finding a positive for every negative, and viewing a setback as a challenge. It's not wishing for what we don't have, but enjoying what we do possess."

We hope this issue has helped and given you a bit of needed information. Our next issue will be about Senior Law and Nursing Homes. Any info that you have that might be of some use to someone else is welcomed. Be sure to email it in. See you in the next issue in two weeks.

Karen and Jamie