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The Ribbon - Care for Caregivers
Volume 7, Issue 16
August 24, 2003

www.TheRibbon.com

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Are you stuck in the 3 H days like we are? Hot, humid and hazy are the words we are hearing every day. You go outside and it feels like your whole body can't breathe. Whew! I am really looking forward to Fall. Nick hasn't been doing too well the last couple of weeks. His neuropathy from the diabetes (nerve damage) and arthritis have had him hurting so bad. He takes Celebrex and Neurontin for these but they have seemed to quit working. He has taken Hydrocodone and that didn't help. The doctor put him on Oxycontin and pretty much all that does is make him sleep all the time. Wish us luck as we wean him back off the Oxycontin and see what the doctor wants to try next. The Oxycontin sure hasn't helped his memory. I'm hoping he will get back to the way he was before this med. My youngest grandson started kindergarten on Friday. It was a half day but for him it was the most important day! He is now a school ager! My daughter cried of course and my grandson told her "I'm okay!" He has been so looking forward to starting school. Now if the teacher will follow the advice my daughter gave her he will do great. He had a habit of sitting with the girls and conning them into doing his work for him. Needless to say, my daughter told the teacher to seat him away from the girls. (heehee)

I guess that's about all from the home front for now. I'm very busy getting things set up for GOF and I run around all the time with a smile on my face. I'm so jazzed!

Hugs,

Jamie


A Change of Direction

Those of us who are affected by the course of Alzheimer's Disease know all too well how this horrific illness can change or alter the plans of a lifetime. Sometimes these changes can be caused by the "normal" aging process and the realization that our elderly family members need our help. Whichever is the case, more and more families are being hard pressed to make momentous decisions about their own life styles.

A friend recently told me of a coworker of hers, living and working here in Florida, who is selling his home and relocating to Wisconsin. Why there, I asked, thinking of the obvious; cold, cruel winters and a different way of life for this young couple. "Her parents are getting older and need help. And they don't want to move here". So this young couple will sell what they can, pack up what they can carry and move 1200 miles to be there for their loved ones.

I could not help but think of how brave this was.....to change the course of your life to help another. And how sad. We have become a transient society. No longer are we born, live and die in the same neighborhood. We go where opportunity takes us, where the weather is kinder, where our hearts long to be. We make plans for the future and think fondly of family members far away. Then the day comes when we realize that the love and support of family is of the utmost importance and we must set our own needs aside and do what must be done. We must be there when loved ones need us.

I wonder how many of you have had to make that decision. I've done it and I know firsthand how hard a decision that is to make. Families make room in an already crowded home for Grandma, children learn about caregiving, and an elderly person learns, or tries to learn, how to adapt to a new environment. The resources for help are sought out. Everyone changes direction.

For those who put their own lives on hold while they reach out to care for a loved one, we salute you. Know that those of us who share the same path think of you as brave and loving. And we know that the rewards, eventually, are many.

Karen


Attention!

For all of our TheRibbon.com and The Gathering Place friends. When you submit articles or items of interest to be published or write emails to any of TheRibbon.com Staff, there are two things we would like to ask you to do.

If you could please type in the Subject Line: Information For TheRibbon, or something relevant so it does not replicate spam that would be a huge help. Linda@theribbon.com got a fantastic email (details will be forthcoming) and she almost deleted it for fear it might be spam. Had she deleted that email, a huge opportunity would have been missed (we will tell you more when we can pry it out of her).

Along that same line, if you could please put your information in the body of the email instead of an attachment, that would be ever so much appreciated.

In today's world of nasty computer viruses and worm attacks, there is a possibility you may unknowingly send an attachment that might have bitten your computer. We immensely appreciate your help!

TheRibbon.com Staff


Life is a Bowl of Cherries

The immortal Erma Bombeck wrote a book titled If Life is a Bowl of Cherries What am I Doing in the Pits? . Her humorous look at life's ups and downs brings true meaning to the saying 'attitude is everything'. For every milestone we celebrate in life whether it is a marriage, the birth of a child, or a 50th wedding anniversary we have chewed on a few pits along the way. It's the foolish person who thinks there will never be a cloudy day or a sleepless night, just ask a caregiver.

Caregivers are remarkable people doing a job they never imagined: a job they didn't volunteer for; a job no else wants. They came into their roles unexpectedly with neither tools nor a handbook. They continue to learn through trial and error and tears of frustration. They learn to spit out the pits and enjoy the cherries and are adept at savoring the flavor and hanging onto the sweet memories.

Cherries abound in the everyday life of a caregiver: Mom wearing her bra over her blouse or a husband using the flower pot as a urinal. These behaviors may sound shameful to you but are priceless memories to caregivers. I have heard many a caregiver story and am always heartened by their sense of wisdom and humor. Granted, the humor of a situation isn't always realized until later. During one of my workshops a woman in the group had a revelation about the cause of her husband's inappropriate behavior. They had traveled to a seaside resort for a vacation and were relaxing from a long journey when he got up and started checking all the door knobs. He opened the sliding door and walked out to the balcony. She didn't think much of it until she heard a ruckus from down below and saw him urinating over the railing! She now understands that he had been looking for the bathroom. We laughed with her at the mental image of her reaction but she said it wasn't so funny when the police arrived! This brave woman could have chewed on the pit of embarrassment but chose to spit it out and enjoy the juicy fruit of humor instead.

A veteran caregiver told me the story of her father. He had always been a proud man in full control of every situation but this trait did not make him a very warm person. Later in life he suffered from Alzheimer's disease and in the final stage of dying he gave her a gift she will never forget. By allowing her to feed him, comfort him, and nurture him she felt a connection to him that she had never felt before. The memory of it makes her smile and gives her peace. Although the bitter pit of losing her father was unpleasant to taste, the sweet nectar of the gift was, and still is, delicious.

Not long ago I lost a dear friend to cancer. She struggled hard to survive while caring for her elderly mother. She had her good days and bad, but always kept her sense of humor. While on the phone with me one evening her mother came down the stairs clad in nothing but a pair pantyhose. They had been packing to go to a wedding and her mother wanted to know if the pantyhose would matched her outfit. Her daughter didn't miss a beat, whistled at her and said, "Yes, mother they're nude, they'll do just fine. We had a good chuckle that evening and the memory still makes me laugh. My friend could have focused on the pit of frustration of packing for two and keeping Mom on track. Instead she chose to enjoy the fruit of the moment for what is was and savor the sweet cherry of absurdity.

A long distance caregiver shared tales with me of her father's adventures in a nursing home. His dementia had progressed to the point where his wife could no longer care for him. He was still quite social so settled in well. His wife visited often and on one of these occasions witnessed a female resident pat him on the behind. She jokingly said, "Don't do that, he's my husband" to which her husband responded, "She can if she wants to." His wife was momentarily taken aback then chuckled at the thought that he could still enjoy the attention of a woman. This clever woman could have bit hard on the pit of hurt feelings and rejection but chose to enjoy the fruit of nostalgia instead.

Life isn't easy and attitude may not be everything but a positive attitude helps us to see the good, embrace the moments, and enjoy the fruits of life. So enjoy the bowl of cherries and don't spend a lot of time chewing on pits - life is just too short.

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.


"Resistance to Care"

by Risa Levovsky
Caregiver-Journalist-Advocate for Successful Aging
www.alzheimers-tips.com

Although you may have your own ideas what type of physician is best for your loved one, you may encounter some resistance on the part of other direct caregivers.

Caregivers often choose a physician, and then cancel their appointments at the last minute. This behavior may be frustrating and upsetting to the entire family.

Here are some of the reasons why caregivers may cancel doctor's appointments:

  1. Many caregivers are in severe denial that their loved one has Alzheimer's disease. After a "probable" diagnosis is made, they cancel future appointments hoping that the doctor made a mistake.
  2. Many caregivers equate good physical health with good mental health. Since they still see their loved one as physically healthy, they assume that their memory will not get worse over time.
  3. Many caregivers don't want to burden the physician with the fact that the person's behavior and memory loss have only declined minimally.
  4. Many caregivers are unaware that major advances have been made in the behavioral and medication interventions that will help people with Alzheimer's disease and other forms of memory loss.

A caregiver shares some insight:

"Two years ago, my husband was diagnosed with Mild Cognitive Impairment. Although our neurologist recommends that we see him every six months, I only take my husband to see him once a year. I am so afraid of what the neurologist will say. I'd rather just wait until we really need him."

A word to the wise:

This attitude prevents the person with memory loss from getting the care he/she needs and deserves throughout the illness. In addition, it may limit the physician from aggressively treating the symptoms as they occur. Never wait until the last moment to obtain quality care for yourself or a loved one!


White Wolf

Many, many moons ago, there was a magnificent white wolf. She was a loyal and gentle soul. She stood so tall and proud. To look at her you felt as if her very essence reached out and touched you. The wolf thought she pretty much had everything, but she still felt lost. All she could do was wander around in the mist looking for something that could make her feel whole.

The wolf wandered around for how long...she did not know. All she knew was that it felt like a lifetime. One day, she allowed herself to step out of the safety and cover of the mist. By doing so, she stumbled on a tiny bird. The bird was so small and defenseless it seemed. He had no wings. A bird that could not fly. It didn't matter what he looked like, even his faults didn't matter to the white wolf. She knew his essence and that was all that mattered.

Time went by and they had great fun together. One day the white wolf noticed a change in their friendship. She saw a sad, distant look in the bird's eyes. She knew he couldn't hurt her by saying goodbye. With her heart weighing heavily, she wondered what she could do to make it easier on the tiny bird. Going away she went to think on it. Then it came to her, " a pair of wings!" It was then that she knew that she could give him a pair of wings, and it suddenly dawned on her that friendship was freedom.

She had seen the eagles fly, and watched the hawks soar. To be given wings, his freedom, he could fly. It was with a heavy heart that she gave her tiny friend the most valuable and precious gift of all. Being ever so careful, ever so tender, bending over to attach the wings, she kissed him on the beak and wished him a safe flight.

Turning to walk back into the cover of the mist, she wiped at one lone, rolling tear. It was then that she realized she had not lost anything, but had gained. She still had her memories, they were hers and hers alone to keep. With that she was able to turn back and give the friend she had grown to love a huge smile. She hoped in her heart he would find what he was looking for. Her wish for him was that he find true love and happiness.

The White Wolf was wise beyond her years. She knew that to really love is to be able to let go.

When I think of my Mom, I remember the person she was. I do not think about the person she had become. My Mom loved me enough to let me go seek my own way. I loved her enough to let her go when it was time.

Diana
Dglennox1019


Helpful Links

BW Online | September 1, 2003 | "I Can't Remember"

This is an excellent article about the strides in finding medication for AD. I was particularly surprised to see the statement that AD is the "number one cause of institutionalization" in the US.


Gathering of Friends

T-Shirts, Paperwork and the Grand Ole Opry

Ok gang, we need your help. Jamie needs to hear from you. I have to say I am the biggest offender in not replying to emails (but she does know I'm attending...snicker...snicker). Our Jamie has been working her hiney off trying to make arrangements for our huge respite weekend in Nashville...The Gathering Of Friends 2003!

And do you know, that Jamie is so nice she won't come right out and say it, but only a few folks have come right out and said they are attending. There have been numerous emails sent asking for information: where you are from for name tags, what shirt sizes you might need, if you want to go to the Grand Old Opry (need $24 a person in advance for that one), or even the simple fact of going online to e-sign the waiver for attending the walk.

Gang, we need to help our Jamie, or whomever that might send an email regarding GOF '03 information, post hastisly. Time is now drawing near! Counts and information are now becoming crucial! Please, oh please, oh please, respond as soon as you get your emails. Oh...and by the way...please put something in the Subject Line with GOF '03!

Thanks gang! I knew you would understand.

Love Always,

Linda@theribbon.com


Email Bag

From elliewalls@webtv.net

I love receiving the ribbon. My friend sent it to me. My husband has the alz. I have three monitors over the house and i`m writing to say they are great. Thank you for the ribbon. And my sympathy to all who has lost there loved one. Coping in FL.

ewalls


From meemawmoe@beggstelco.net

Hello to all,

I haven't written to The Ribbon in a long time, but I have been reading it and as always, I appreciate the great information that you provide. I also want to thank all of you that are involved in putting the Ribbon together and getting it sent out. You have done a great job.

Those of you that know me, know that I have been around formany years now. My husband was diagnosed with EOAD in 1995. He is 56 now and (very unexpectedly and unwillingly), I had to make the decision to place him in a facility. He became combative and impossible to care for. I dealt with it for a few months, trying to keep everything together and thinking that I was suppose to do the caregiving. I believed that no one could love and care for him as I did.

During that time, I felt I was living in a nightmare. I have never actually admitted this, only to a few close friends, but I did entertain the thought of suicide. My faith in the Lord gave me strength and wisdom to get through the crises. I am living proof that it can be done. I do feel that I did my best, which wasn't perfect by any means, but it was my best. In my head and in my heart, I had always planned to care for him at home, but as we know with Alzheimer's, things do change and sometimes it can be very sudden and not at all what we expect.

It has been over a year now since he has not lived here at home. He is being taken care of much better than I can do. There are many times when I wish that I could bring him home. I have to stop and think of how I could care for him properly. He is in the late stages and can do nothing for himself. We have been married for 35 years and my heart still aches to have him here.

I wanted to let you all know that I understand the stress, frustration and pain that you are going through, and as you know by now, there are many others going through the same things that you are. You can make some wonderful friends and obtain an over-whelming amount of info in the chat room, The Gathering Place. You will meet friends who will listen, advise, and love you. Some of you probably go to a live support group, and those groups are wonderful. But, the chat room is a place you can go to almost every night and find someone there who will listen and try to help. There are set rules to handle some situations, but the chat room will provide you with great information and ideas, some alternative, that come from real and personal life experiences.

I want to offer my sympathy to those who have already lost loved ones. Finally, I realize that there can be a blessing from the death of a loved one with Alzheimer's. Although we grieve and mourn for their loss, we know they are not sick anymore, not confused, not scared, but at peace and in a better place. I could never talk about my husband dying until a few months ago, and not understanding, I didn't want to hear about it from anyone else. That is because his quality of life, from my point of view, was still "ok". But who am I to judge? I have no idea what he thinks now. My point is that I have accepted the possibility of death and that is a huge step for me.

It has been a while since I have been to the chat room. I felt I didn't have anything to offer anyone and my pain was so severe I couldn't share it. We all handle these things inour own way and inour own time. I am getting my life back together, slowly but surely, and I hope that I can eventually be helpful to some of you. I don't have all the answers, but I can listen and understand your feelings. I want to thank my wonderful onlinefriends thatI have made through the years. Many of them I have met in person. Thank you for your love, your support, your kindness, and your sharing. And most of all, thank you for your friendship and your prayers. I pray that you all will have wisdom, strength, and patience throughout your journey with Alz. Keep your faith and you will survive.

Love, hugs, and prayers,

Sharon


We never know where our caregiving journey will take us. Even though we are weary and worn at the end, it is my prayer that caregiving has made us each a better, stronger, and more compassionate person.

Peace and Hugs,

Jamie and Karen

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