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The Ribbon - Care for Caregivers
Volume 7, Issue 21
November 2, 2003

www.TheRibbon.com

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

Hello and Welcome to my new life. I start on a new journey with ties to the past as of tomorrow. I will be starting Certified Nurse Technician School tomorrow and when I finish and pass the State exam, I will be qualified to work as a caregiver again! The difference being that this time I will be employed and earn a paycheck.(smiling) I know where I want to work and hopefully once I am certified, they will be able to hire me.

My fingers and hands are cramped from so much writing this week. Our advance homework has been to learn the 25 skills we will need to pass the exam. The best way we were told is to write each one and the steps involved five times each...well some of these skills have as much as 28 steps! This all seems simple to me except that the steps have to be done in exact order...so...I do have some learning to do.

I do want to work on an Alzheimer's unit as I feel a special bond there. I know the work will be harder but I just feel I have a talent in working with these special people.I would like to be one of the workers that makes a difference. Who knows, someday I may be helping one of your loved ones!

My husband has been more alert this week and does not seem so depressed. He had an MRI done on his shoulder on Friday to see if there is possibly a torn rotator cuff there that can be fixed so he can use his arm again. He was taken off Zocor since he was having a lot of muscle pain in his arms also. Now if he can start lifting his arms, he sees that he may be able to go back to work. It's like he feels a bit of the weight being lifted off his shoulders.

We have both been stressing a lot because we know at my age, and having been out of the work force for so long, there is no way I can make the kind of money he makes. If he can go back to work even part time it will lessen the stress level around here a lot.

So sit back and relax, and watch for my updates as my new life gets started!

Hugs,

Jamie


Do unto others as you want done unto you... Treat others as you want to be treated...

by Risa Levovsky

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

"You cannot imagine how difficult it would be to live your life looking into a snowstorm."

Each person you meet with Alzheimer's disease or other forms of memory loss is an individual with an individual brain and individual set of behaviors.

Don't use names such as dumb, stupid, or crazy to describe adults who have led full lives. They do not deserve to be treated like children, even if there behavior appears childlike. Do not punish a person with Alzheimer's disease or other forms of memory loss for being nasty, mean or using curse words.

These behaviors are not intentional.

Do not take obscene remarks or foul language personally. Separate the person from the effects of the disease. Treat people with dignity and respect, even if their behavior is obscure.

They would be very ashamed if they could actually comprehend their actions.

Do not argue with a person with Alzheimer's disease or other forms of memory loss. You will not win and you will just get frustrated. Never talk in front them as if they are not there. They may still be able to understand more that they are able to express through words. Do not expect people with Alzheimer's disease to live in your world, get into their reality at all times.

Be willing to learn new ways of communicating with a person with Alzheimer's disease or other forms of memory loss.


Read Alzheimer's Tips-Revealed: Successful Caregiving in the 21st Century
"Education is the key to understanding an incurable illness such as Alzheimer's disease."
Go to www.alzheimers-tips.com


Invite those who judge to try a few steps in your shoes

Dear Miss Manners:

After about two years of dealing with my father-in-law's dementia and other old-age issues, trying to keep him in his home (by hiring a cook, housekeeper, etc.), my husband and I moved him into an assisted-living facility where he was very familiar with the staff and many residents. He at times said he knows he needs to be there.

We've put much time and energy into this process, including talking with his family doctor and friends and other people in the community in order to do all this in the most humane, dignified and safest way possible. We make a 16-hour round-trip, monthly visit to try to give him personal attention as well as deal with his property and business affairs.

I feel satisfied with how we've done this, and only hope we get such treatment when we're in our 80s.

The support and kindness of his community has been one of the positive things to come out of this messy situation. However, a few people continue to offer unasked-for critiques of what we have done wrong and what we should have done. The worst is when we're told that we should have kept him at home and that the speaker would have done this, especially when the speaker doesn't know we did try to keep him at home.

Obviously, the thing to do is to just let it go and recognize that I cannot teach these people manners, much less empathy. But it does hurt and I have to admit I'd like to express this. I find myself thinking, "I know Miss Manners would have just the perfect response." Do you?


Gentle Reader:

"I know; it was painful for us to realize he needs more care than we were able to provide. You are kind to take an interest. And you are so right that being in a home atmosphere is comforting. If you were to invite him to stay with you for a few days now and then, I'm sure it would be good for him."


Miss Manners can be reached at MissManners@unitedmedia.comor write to: Miss Manners, United Media, 200 Madison Avenue, New York, NY 10016


In Passing: Those We Must Remember

Dear Friends:

It is with immense sadness that I write this to you this evening. Impegret or Peg/Margaret to us, let us know that she lost her mother, Eileen, Sunday morning, October 26, after her long battle with Alzheimer's. Her mother was surrounded by her children and grandchildren.

Many of us got to meet Peg in Nashville just a few short weeks ago. Peg instantly melted all of our hearts; she became a little sister to many of us. Nashville was to be a respite break for Peg; however, that respite took on a new meaning. It became the boost Peg would need to go home and help her mother make her ultimate journey.

Peg has been in contact almost every evening. She is doing well, taking great comfort in knowing that her mother is at rest, not having to fight any longer. When asked what we could do for her, Peg's reply was to keep her and her family in our prayers.

Please join with me in extending our thoughts to Peg and her family during this difficult time.

Love Always,

Linda

The Gathering Place @TheRibbon.com
http://www.theribbon.com/GatherPlace/.
Linda@theribbon.com


Exchange of Letters with Vital Information

From JLATA
To KMenges581
10/20/03

HI, I am sorry to barge in in your email - I have this thru your wonderful newsletter, The Ribbon. I really appreciate your efforts and want you to know how much strength and encouragement you provide for we caregivers.

I am hoping you can quickly point me to someone that can help with an urgent issue.

My father (70) has severe AD and was hospitalized 3 weeks ago with Renal failure. He ended up having a TURP (prostate surgery)and is still recovering from that. In the hospital, they are restraining his wrists to keep him from pulling out his Foley Catheter (which would result in a urologic emergency). He needs it while he recovers from the operation and will not urinate on his own. The hospital wants to discharge him to a rehab unit of a nursing home, but I have been told no one will take him if he requires wrist restraints.This has to be something other male patients with AD have faced (they can't remember to not pull on it and get so agitated and combative that it's the first thing they go for).

He could go home, but will require nursing care as my mom will not be able to handle him, or the foley care. Is there anyone you can refer me to that might be able to help us negotiate thru this mess. He is in a hospital in Lakewood, NJ (whose alzheimers center was shut down due to budget constraints).

Thank you so much,

Jen L.


From KMenges581
10/23/03

I sent Jen some links to the Agency on Aging in her state plus a few other links I thought might be helpful. This was her response:

From JLATA

Dear Karen,

Thank you so much for your help. I did call the DOA and they assisted by having an MD call the hospital and question dad's medical condition. Unfortunately, the information given out by the case worker (social worker) did not accurately reflect his true condition. I have the option to open a full 'investigation' but it's really not going to help dad in the short term, which is what is required.

The way I see it is that Medicare is woefully ignorant when it comes to AD. A patient with severe dementia is always going to require extra time for healing and special care. An AD patient is not going to understand that pulling out ones Foley catheter or IV is bad for them. Medicare is applying limits of coverage that apply to patients with intact cognitive function and it just does not apply in this case. It is so frustrating and sad.

We have been blessed with the help of an excellent gerontologist in NJ who is trying to assist as much as possible. But fighting a hospital that has internists who will discharge based on Medicare recommendations vs. a true medical assessment is impossible.

Thanks again. I really do appreciate your efforts on The Ribbon. It is a God send and you and Jamie must be true angels.

Best wishes,

Jen L


From KMenges581
To JLATA
10/23/03

Dear Jen,

I am so sorry that you did not get the help you needed. Your evaluation of the situation with Medicare is right on target. It is one of the many reasons that The Ribbon is in existence. The medical community, Medicare and those who are in the position to make decisions for AD patients (hospitals, social workers, etc.) do not understand the dynamics of the illness. Hence, the rules that apply to those of us who can make health decisions apply to the AD patient as well when, obviously, an AD patient's needs are very different.

I live in Florida not far from where national news is happening regarding a young woman, who is comatose, is the center of a controversy about removing a feeding tube and artificial means to keep her alive. A perfect example of ignorance as to what is happening to her body and a total disregard to her dignity and quality of life.

I would like to ask your permission to include your e-mails to me in The Ribbon. I think that, if nothing else, it would raise the awareness of other caregivers of the pitfalls of medical treatment for their loved ones. So many times these issues do not present themselves until a time of crisis and then the caregiver learns how few options they actually have.

Please keep me posted on your situation and on your dad's progress. You and your family are in my thoughts and prayers,

Karen
The Ribbon


From JLATA
To KMenges581

Dear Karen,

By all means include my correspondences in The Ribbon. If we can help others anticipate and troubleshoot the medical situations that may arise with their loved ones, all the better. One bright spot here is that we are fortunate to have the guidance and care of an excellent 'Geriatrician' in NJ. Heis simply wonderful. His hands are tied with regard to the Medicare quagmire, but he has been tremendously accurate and supportive.

I agree with you totally about the Schiavo woman. She is originally from very near to where I live and her case is getting a lot of local media coverage. My area of research (drug development) is in Spinal Cord Injury and Stroke and for some reason people seem to want to know what I think about this. It is very sad to see her situation used this way.

I am on my way to the hospital to see if I can argue for more 'healing' time for dad.

I appreciate your concern and support,

Jen Lata


Snail Mail Bag

Dear Ribbon Staff,

If you have a moment to lend an ear to a friend, I need some advice for a friend of mine. This friend is 82 years old. She had a husband in the Veterans Administration Nursing Home in Murfreesboro and she got sick for a few days over the winter and couldn't go to see him. In her absence the staff there overdosed him on a very strong and mean drug: Haldol. When she got back to him; he was lifeless. He couldn't hold himself up. He couldn't walk or talk. He couldn't even open his eyes much less bat his eye lashes. The dose was supposed to be 1/2 of a teaspoon and the staff gave him 2 teaspoons for eighteen days in a row.

When his wife got where she could go back to see him it was almost too late. The doctor told her that if she had waited one more day that he would have been dead. What do you think that did to her ego? This just shot her out of the water.

He went back to the Veterans Nursing Home from the hospital. When they worked with him for eleven days of continuous therapy. She found another Nursing Home close by the house for her husband.

My question to you is: What can I do to help my friend to help her husband? We have been praying about the matter. Now is there any legal action that can be taken against the Veterans Administration Nursing Home? They need to be stopped before they do kill someone's loved one.

Thanks for your help!

A Loved Ones Friend


EMail Bag

From IMpegret@aol.com

I wanted to share with everyone what the Ribbon, the Gathering Place and GOF means/meant to me. I went to Nashville with a knot in my stomach because of leaving Mom home with my sisters. You see, they really had no experience with the day to day caregiving. I was worried not only about her but also Jeff, Matt and Mark. You know, no one can take care of your family like you can!!!

I got lost in Cincinnati but alas I was not angry. I found someone who took me right to Lavern's high rise! What a warm and welcoming embrace I shared with Lavern when we met! I already felt the excitement and still had 4.5 hours to travel.

Once I got to Nashville, it was kind of easy to put Toledo in the back of my mind. I felt love and kindness with the first look at the back of Jamie's shirt in the hotel office. I just knew it was her without ever seeing a picture of her! The weekend rolled by way to fast but it was just what the Doctor, from above, ordered.

When I returned home I walked into my house and there was my Mom, Eileen, in her bed with the most beautiful smile on her face and such joy in her eyes when she saw me. I jumped right on top of her and gave her what was probably the BIGGEST hug I had ever given her. In return, she began to belly laugh. She had not done this in at least one year. It was like when I left my children when they were less than toddlers and I returned. The delight in her eyes, smile and laugh are what is carrying me through what is now a very sad time.

Little did I know that my Mom would pass away less than two weeks away from leaving Nashville. I suppose she showed me no signs because she knew I needed the renewed spirit to carry me through the final thirteen days of her life.

Upon returning home there was just one more surprise that arrived just 6 days before my Mom died. I received a quilt from Martha that she sewed with love for me. I placed the quilt on my mom's casket at the funeral home so that I would have Martha, as well as all of my GP family, with me at the funeral home. I felt each and every one of you at the funeral home everytime I looked at it! What a tribute to our family of caregivers!

I will be eternally grateful to all my friends at The Ribbon and in The Gathering Place for helping through this incredible journey. I salute all of you and will be here to help you and share with you for many years to come.

Love and BIG hugs,

Margaret (Peg)


From AZUREE1650@aol.com

Dear Jamie and Karen:

After the passing of my dear mother last February, I had considered canceling my issues of THE RIBBON, yet continued on the mailing list. After nine years of care taking, I didn't think I wanted to hear anymore about Alzheimer's.

While reading Stages by Mary C. Fridley, RN, BC, in this issue, I have a healthier understanding of what has been for me, a long mourning process. I have experienced most of the stages that she so eloquently described and haven't felt as though I have moved on.

I didn't have contributions from siblings while caring for my Mother and I was so consumed and fatigued, I was not prepared for the day's, weeks or months after her passing.

My caregiver's journey was arduous, yet I'll never regret "the journey."

Thank you, Ms. Fridley, for your profound contribution to caretakers and your continued support for those who have lost loved ones. Your article has encouraged me to discover "the new me."

Sincerely,
Charlene


From bchaver@charter.net

Hi Mary,

Just wanted to drop you a note to let you know how much I appreciated your Stages article in the latest The Ribbon. Your article, without all of the relating emotions, pretty well summed up what our lives have been like for the past 13 years caring for my mother with major health problems, including Alzheimer's. My husband, young son and I cared for my mom for 12 years, 10 of which were under the same household and the last 2 with her in a nursing home. Last week (October 15) marked one year since her passing.

We are just now beginning to come out from under the fog of caregiving for this terrible disease. We have found ourselves having to defend ourselves against terrible verbal attacks, after she was gone, from one of my brothers, sister-in-law, aunt and neighbors that stood on the outside of the caregiving circle the entire time, and then had the nerve to judge us for the way we did the caregiving all those years. Looking back, we didn't do everything right, but at least we did something rather than nothing!

Your article gave us the peace and confirmation to know that we "have done a remarkable job that, given the choice, most people would never undertake" . . . and a lot of people in our lives didn't. We are beginning to like and love ourselves again, putting down all of the "hindsight guilt" that is associated with caregiving for a parent. We are now also working to "seek the joys in life and allow each day to unfold with hopeful expectation". We are thankful that we survived those years, even on days that we just wanted to pull the covers over our heads and stay in bed.

On to rebuilding our own emotional, physical and financial well-being. God Bless you and your work on behalf of caregivers everywhere!

Respectfully,

Bev


Remember November 11th is Veterans Day! Find a Vet and tell him/her Thank You for serving our country so that we continue to enjoy our freedoms.

Hugs and Peace,

Karen and Jamie

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