The Ribbon - Care for Caregivers
Volume 5, Issue 13
June 27, 2001
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

We'd like to let everyone know that our website is back up and running. We give all the credit to Kevin, who worked tirelessly, to get it all fixed. He went through so much frustration getting the server changed. You no longer need to use the temporary Brinkster address. We are back at

By the way, you have helped the website have over 16,000 hits. Way To Go!

Do not forget to visit The Gathering Place Support Group. It is open all the time but hosted Monday-Friday from 9pm-11pm EST. You can get there by going to

Jane's Place @ The Ribbon

This is our Message Board. Here you may post questions, suggestions, book referrals, etc. You may meet new friends here and also you can get a quicker reply to your post. We still want your emails but we do know sometimes you need a reply right away from other caregivers. We may from time to time, use some of the postings in The Ribbon. We hope you will use Jane's Place on a regular basis.

Kevin has notified us that if you had already registered you will need to re-register due to the change in servers. It won't take but just a moment of your time. Let's make the Board a busy board.

Points to Ponder

I have a couple of questions I've been pondering.

#1 We all know that someone with dementia can try to fool people by trying to act "normal". Of course, those of us who deal with someone with a form of dementia can pick up on that very quickly.

What I need to know is this: When your loved one has had to "keep up their front" for a few days at a time, do you notice a decline right afterwards when they no longer are around company or strangers?

I ask this because my husband and I went this weekend to see my Mom who cares for her mother. Grandmother did fairly well the two days we were there but on Monday she went on a severe decline and pitched an all day long temper tantrum. Has anyone noticed this happening? Is this something we need to take into consideration when we visit or have visitors over to see Nanny, whom I care for?


#2 My brother is primary caregiver to my Mom and Grandmother. I consider myself a long-distance secondary caregiver. My sister also feels she is a secondary long-distance caregiver. We have been talking as to what we might be able to do to help out our brother more since we both live out of state. She is 2 hours away and I am 4 hours away from our Mom.

We thought we would go down once a month each to give my brother 2 weekends a month off. So that would be say the second and fourth weekends that he would be off.

What I need from you are suggestions as to what else we can do to help him as well as our Mom and Grandmother. Those of you who are primary caregivers and have secondary caregivers who live out of town or out of state, let us know what it is you need from us the secondaries. We do not wish to overstep but we find the need to help as we can.

-- Jamie

Dear Abby
Caregiver Stretched Too Thin Must Give Herself a Break

DEAR ABBY: I was disturbed to read the letter from "Exhausted and Angry", who is single-handedly raising her two children, working a 40-hour week, caring for her bedridden mother, and is now faced with demands to care for her obnoxious "Aunt Stella".

For nearly 15 years I was in a similar situation. I cared for my disabled parents, a disabled husband, raised my son and worked 40 hours a week. I say from experience that it will ruin "Exhausted's" health to live under so much constant stress. No matter how much you love someone, it is an absolutely crushing responsibility that will destroy not only her, but also her children. She owes herself and her children first consideration.

Nobody wants to go to a nursing home, but I was left with no alternative, and the relief was phenomenal. I wish I had done it sooner.

An admission to a nursing home is based on the patient's ability to pay -- not the caregiver's.

"Exhausted" shouldn't have to impoverish herself. I hope she doesn't feel total responsibility for this aunt. She will be around longer to raise her children and have some peace of mind if she doesn't try to do it all.


DEAR BEEN THERE: You have written a valuable letter. While spouses must pay for each other's care, extended family -- including children -- are not legally obligated to bear these expenses. Read on:

DEAR ABBY: As a director of an area agency on aging in Indiana, I empathize with the woman who signed her letter "Exhausted and Angry". Her ill mother asked her to also care for her difficult and surly aunt. She was desperate for ideas on where to find help and alternatives, and you suggested she contact her state or local agency on aging for assistance.

I want to share a nationwide toll-free phone number that might be of help during her search:

Elder Care Locator, 1-800-677-1116.

Many people who find themselves in similar situations may benefit from this information.


Making A "This Is Your Life" Book

While the person with dementia is being cared for within the family, the family is able to make up for many of his or her intellectual losses by taking over tasks the person can no longer manage. At the same time, they can remember what the person was like before he or she developed dementia.

However, when the person with dementia requires care outside the family a practical way to help maintain their identity and individuality is to use a "This is Your Life" book. This type of book is also useful for reminiscing and conversation regardless of where the person with dementia lives.

Care Outside The Family

When the family reach the point of needing help, they will probably look to a nursing home (or other organisation) which can provide day care, short term or permanent residential care. The staff of the organisation can take over much of the practical day-to-day care the family has been giving, but they have two big disadvantages. The first is that the person does not know them. This can only be overcome by the passage of time. The second, and bigger disadvantage is that the staff do not know the person.

The Need For Information

Staff members who are caring for a demented person must have information about the person in order to meet his or her needs. Information can be obtained from the doctor and from relatives, but neither you or the doctor can be on hand whenever necessary. A book about the person with dementia provides this information at all times and alerts staff to the positive aspects of the person they are caring for. It also reminds them of the person inside "the patient".

A "This is Your Life" Book

Following are some suggestions for how to prepare such a book:

Imagine that the person with dementia was to be the guest of honour on the television show, "This is Your Life", and that you need to provide the producers with information about his or her life. This is the sort of information that carers outside the family need, and only the family can provide. It includes information about any day-to-day preferences and "quirks" particular to the person with dementia.

In order to be useful to the TV producer or carers, the information needs to be presented clearly and briefly. There are two ways of organising the information that are particularly helpful.

  1. As an information sheet, preferably typed.

  2. As a "This is Your Life" photograph album, with all the photos clearly labelled, arranged in chronological order, include as many photos as possible from the early part of the person's life. (The earlier the memory, the later it seems to be forgotten.)

The information sheet is important because all staff can refer to it quickly. It helps them to make sense of what the person is saying, and to find activities that give him or her pleasure. It does not take long to complete, and should always go with the person when they need to be cared for by people who don't know them.

Ideally, the information sheet and album should both be used. The album is potentially used as a tool for reminiscing and enabling the person with dementia to relive old memories which they may still recall.

Helpful Information

  • Name preferred:
  • Date of Birth:
  • Where born:
  • Original Language:
  • Time lived in Australia:
  • Language Spoken Now:
  • Names of parents (and dates of death, if applicable):
  • Names of brothers and sisters in order of age (and dates of death, if applicable):
  • Educational Background:
  • Occupational History:
  • Name of Spouse (and date of death, if applicable):
  • Date and place of marriage:
  • Places lived in:
  • Names of children (in age order), their spouses and children (i.e. grandchildren):
  • War Service (where and when):
  • Names ofspecial friends:
  • Hobbies and interests:
  • Skills in the past:
  • Skills in the present:
  • Favourite music:
  • Favourite programmes - radio:
  • Favourite programmes- TV:
  • Favourite Activities:
  • Favourite foods:
  • Any other points of interest:

While there is nothing yet known that can restore the memory of a person with dementia, these suggestions may help families to ensure that the person's identity is not lost. Making others aware of the person's past; their likes and dislikes, can only help in ensuring that the best possible care is provided.

--Author Unknown By Me
Nursing Home Issues from Alzheimer's Outreach

Clinical Trials


A Phase I Study of Ex Vivo Nerve Growth
Factor Gene Therapy for Alzheimer's Disease

This Phase I clinical trial is the first step in testing gene therapy. This study is called a Safety/Toxicity study by the Food and Drug Administration, and primarily aims to determine whether the experimental protocol is safe for humans. It will determine whether the study procedure causes side effects in humans, and may also give us a preliminary sense of whether this will be effective in combating Alzheimer's disease (AD) in humans.

It should be noted that the study investigators are proceeding with this human clinical trial because the identical procedure in non-human primates has been safe and has not produced negative side effects at the cell doses that are planned for this study.

However, animals do not suffer from AD. Thus, this experimental procedure has not been tested in AD. The eventual goal of this clinical program will be to determine whether growth factor gene therapy will be a useful in AD. This approach has prevented cell loss in animal models that mimic some aspects of the cell loss that occurs in AD, but has not been tested in AD.

Not all of the cells in the brain that are affected by AD are expected to respond to growth factor gene therapy. One class of cell in particular, called a basal forebrain cholinergic neuron, is expected to respond. This type of cell undergoes extensive loss in AD; preventing loss of this cell type could help to slow down intellectual decline.

Nonetheless, it should be noted that the animals in which this gene therapy approach has been tested do not have AD, and it remains to be established whether this procedure will be effective in humans with AD.

This study will involve brain surgery. Each person's own cells will be genetically modified to produce a natural substance called Nerve Growth Factor (NGF). A person's cells, called fibroblasts, will be obtained from skin biopsies. The fibroblasts will be genetically modified in the test tube, and will then be implanted into either 5 or 10 locations in the person's brain. The eventual goal of this research effort will be to determine whether NGF produced by the cells implanted into the brain can prevent the death of some nerve cells that are affected in AD, and enhance the function of some remaining brain cells. However, the primary goal of this first study in eight people will be to determine whether this gene therapy procedure is safe.

In animal studies, fibroblasts genetically modified to produce NGF have been shown to prevent the death of certain nerve cells in the brain. This effectiveness has been shown in both the rat brain and the monkey brain. The genetically modified cells prevent cell death after injury, and prevent cell atrophy that is a natural consequence of aging in primates.


CATIE Alzheimer's Disease Trial

The CATIE Alzheimer's Disease Trial is part of the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) Project.

The study is for people with Alzheimer's disease who are having trouble with their thinking or behavior. In particular, this study is trying to find out the best treatment for people who have hallucinations (seeing or hearing things that aren't there), delusions (false beliefs), or agitation. The design of the trial helps to increase the chance that participants in the study receive a medication that helps them. The study uses three medications known as atypical antipsychotics (olanzapine, quetiapine, risperidone), which are the newest medications that are currently available for treating these problems.

Participants may also receive an antidepressant (citalopram). The trial lasts for 36 weeks. Participants are given a thorough evaluation at no cost to ensure that this study is appropriate. In addition, the caregiver, family member, or friend who comes with the participant will be offered an educational program about Alzheimer's disease.


US said to be unprepared for Alzheimer's epidemic,4800,258840,00.html

As if we didn't know...sighing....

Book Nook

"For the Caregivers" ---M.A. Harper

Hill Street Press invites you to discover a refreshing new novel about the caregivers' experience: The Worst Day of My Life, So Far by M.A. Harper. In these pages, we follow an Alzheimer's caregiver as she struggles to lead her mother through the long and twisting maze brought on by the disease, a maze that Harper explored with her own mother. At times filled with frustration and anger, at others with lightheartedness and hilarity, the story is a breath of fresh air for anyone who has come face to face with Alzheimer's Disease, especially the caregivers.

More information at
Available now at all neighborhood and online bookstores

This title is NOW available at The Ribbon Bookstore! Click here for more information!

Email Bag

From RubyRubyD

Thanks so much for sending this newsletter. I get no professional help for myself nor my Mother. I'm starting to wear a little thin. Reading this truly helps me.


From PatMackie

"Be careful of what you ask for might get it!" I thought of this, when I read the last part asking for e-mail and just laughed to myself. You might have 100's of e-mails now.

I have not written really before, I'm one of those who just suck up the lessons of others. But I find myself compelled to write and to just catch you up on what's been happening in my life. My father was recently convinced to allow my mother to go to a skilled care facility. My 90 yr old father has refused to allow her to stay in any type of nursing facility. My brother and Dad both still live in the family home and were "taking" care of mother. I came over every Saturday a.m. to help bath her and take her out for a hamburger. This has been our challenging pattern for the past 10 years. Every time I tried to approach my father with that this was too much he would get angry to the point I thought he might do something to prevent me from seeing my mother. I had some suspicion of abuse, I tried to talk to Dad, I tried to see if mother was afraid of him or if she had been hurt, I called the state Adult Protection agency only to have no real support.

I just received a call that the facility saw my dad slap my mother twice in her face, while it validates what I had suspected all along, it just hurts more to think of my mother, this child like woman (not withstanding that she could have her mean moments due to the disease) had to withstand what I am convinced were not falls but rather abuse, the black-eyes, the broken leg and arm all blamed on her falling. Can we spell G-U-I-L-T ? Guilt that I in some way failed to protect her. A-N-G-E-R that the system was not there to support me, a system whose workers should have been more atuned than myself and anger at myself that I was not more forceful. I am wise enough to let my logic take place and assume that I did as much as possible, but I still cry when I think of the terror and pain my mother has had to experience. There is so much more that she had to go through that would fill a book, but I can say I'm glad she's safe -- the facility will not let my father be alone with her any more.I have warned them that he may attempt to remove her from the facility and everyone is getting their act in order to prepare for this. Between trying to be there for mother, trying to understand my father and his feelings as a frustrated ex-care-taker and my brother's apathy toward everything, sometimes I just want to scream.

Through all this, though, thank you for being there -- being there so I knew others had experiences that was challenging and most difficult. -- Pat

From NannyDean

The book by Pam Heisman was one of the first books I ordered. As you say it is highlighted from cover to cover. I found it inspiring, helpful and uplifting at times but reality was also not omitted. Coping With Caring has been my gift to others for about two years now. I helped the advertising director of Coty Cosmetics wife with her thesis on Alzheimer's and she sent me that book as a gift. Her husband has very graciously kept John supplied with his favorite cologne, Preferred Stock for 4 years now. I had no knowledge of the book until then. I just recently parted with my last copy that had been signed by the author to my dearest friend. Now I need to order more. There are a lot of helpful books but I have been more disappointed at the way so many have written their person experiences and it just seems to be capitalization on the disease because everyone seems to want to sugar coat it. If I ever get my book written it will not have anything left out, no matter how dirty it is. That is the reality of the disease. But so far I have read nothing where anyone will ever admit to their emotions and the devastation this disease causes. When we do get any kind of television exposure, you see sitting there talking these women with suits on, their hair and nails immaculate, talking as if it were a tea party. No one has ever depicted AZ the way it truly is. I don't understand. My friends say I write from the heart. Perhaps that is the problem. Writing from the heart is hard, its sad and it brings back memories you want to forget but it is reality. Unless you have actually walked in our shoes, you will never understand. Not because you haven't the brain capacity to understand but because unless you have actually had this relentless monster in your life there is no way you can understand. Not that you aren't bright enough, it's just one of those things that has to be lived to comprehend. The saddest part is the longevity of this particular disease. It isn't finished with you and your loved one until it has stripped every single sense of dignity from them and render them helpless and it takes its own good time in doing this. We, on the other hand are forced to watch and experience this long, slow death and are in a constant grieving process. We know there is no cure, there is no magic pill, they won't have a remission, they only have death to look forward to. We as the caregivers are the ones who suffer because if AZ only does one good thing, it's the inability for them to know what is happening to them. You see on top of everything else that too is our burden to carry alone. We are in a constant grieving process for years. You try to hold every single precious memory in your heart because we know where this road ends. We know that memories are eventually the only thing we will have. I personally think it is much harder on spouses. Spending the past 6 days in the same room with John in the hospital has been hard but it has also enabled me to be close to him again and I am already thinking about and dreading the separation. It will be like leaving him all over again. Someone was talking about time just going by so quickly. I have had 4 years go by and it seems as if it were yesterday. The pain never lessens, the hurt never stops, and the loneliness never ceases. I live for the next visit to him and I don't seem to care about much more. I never imagined being alone would ever be this difficult. I still after four years remain in this comfort zone. I rarely go to any other parts of this house. He is everywhere, yet he isn't anywhere. Just memories of times gone by that I wish I could recapture. At the time I never realized that those memories would be the only thing I have left of him. Had I known, I know I would have somehow made them more special, more often and told him so much more how much I loved him. But going back is something I can't do because that time has passed. What I can do now and am doing is acts of love daily. Staying with him has been a blessing because I have been able to show him how special he is and how much I love him and he understands. It's just when he talks about the future and the plans he has when he gets well from AZ, I literally am crushed inside. I know we will never get to live in Santa Fe. I know we will never get to do the traveling he so desperately wants to do. You see I know but he doesn't. Those are the times you feel your heart breaking into tiny pieces and know it will never be the same. Unrealistic dreams unfilled for him but he doesn't know that. I do. That is the hardest part of all.


Sorry for the delay in getting the newsletter out to you this time. I got frustrated when every time I would get almost to the end, my computer would freeze for some reason. I learned the hard way (being told by my son) to save after I added each article. I think I have that lesson down pat now.

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Happy Fourth of July!!Hugs and Peace

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