Volume 6, Issue 15
July 28, 2002

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A Reminder.....

Yet again, I must ask our Ribbon readers for help. Since it is my job to send out The Ribbon via e-mail, I must ask that you keep me informed.

In sending the last issue, I experienced a bit of difficulty. Almost 16 issues were returned to me because the address is no longer valid. This slows up the process of sending The Ribbon, requiring me to do editing before it can be sent. I would again ask that if you decide that you no longer wish to receive The Ribbon, just send me an e-mail ....Karen@theribbon.com.....and I will remove your name from the mailing list.

Your understanding is appreciated,

Karen

The Caregiving Years

by Denise M. Brown

In previous issues, we have covered Stages 1, 2, and 3. Today we continue with the series.

Stage 4
The Pragmatic Caregiver

I am still helping my relative or friend!

Who are you?

You've been caregiver for more than five years. You've been through it all: hospital admission and discharges; short-term rehab stays in nursing homes; a vast array of community services. You may appear to doubt the advice given by health care professionals; you've just been through the health care system long enough to know that sometimes health care professionals may not seem to have your best interest in mind. Some family members and health care professionals worry about your ability to find humor in situations they find offensive. They view your attitude as "calloused" and "uncaring". Far from it, you have a very practical, very realistic approach toward your caregiving role--and your sense of humor has been a critical tool for your survival. Without your sense of humor, you would have given up a long time ago.

Your Keyword: Welcome

Welcome the joys of your relationship; welcome forgiveness (of yourself, of your care recipient, of other family members and friends); welcome shared activities.

Your Purpose:

To gain a better understanding of yourself and your care recipient. You've settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.

As a "pragmatic caregiver", what can you do?

1. Work on finding joy in your relationship with your caregiver.
   The biggest joy-killers are your hands-on duties: bathing, dressing, incontinence care. But these duties bring you together, this is your time together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.



2. Work on forgiving your care recipient for past hurts.
   Resentment toward past wrong and injustices will make your present caregiving role very difficult. Let go of what was and concentrate on making what is healthy and productive.



3. Develop a habit of enjoying shared activities.
   Develop a routine of time shared as husband-wife, mother-daughter, father-son rather than as just caregiver and care recipient. Releasing the roles of caregiver and care recipient allows you to enjoy each other.



4. Begin to think about your future.
   What goals have you yet to achieve? How can you achieve them? Can your care recipient help you achieve them?

Web Link
>>Resources that can help Stage 4 Caregivers

Stage 5
The Transitioning Caregiver

My role is changing.

Who are you?

You've been a caregiver over a period of several years and have recently made a decision about your role as caregiver. Or, your care recipient's condition has taken a turn for the worse and you know his time is very limited. As a result, you've changed your role--or are just about to.

Your Keyword: Allow.

Allow time to mourn and grieve; allow remembrances to remain; allow reflections of your experiences.

Your Purpose:

To walk with your care recipient during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage 1. This stage is about loving and feeling good about the shared journey. As you both feel the journey end, this is also a time to mourn and grieve. As you mourn, you might find yourself questioning what will be the next chapter in your life. You've been a caregiver for so long, how can you possibly do anything else?

As a "transitioning caregiver", what can you do?

1. Allow yourself time to mourn and grieve.
   A nursing home placement may have been as painful a loss as a death. Both experiences are tremendous losses--and need to be respected with time to process, and then heal, the emotions.



2. Remember your care recipient.
   You don't have to give away clothes or remove pictures--until you want to. When family and friends seem hesitant to talk about your care recipient (they worry they will upset you), assure them that sharing memories, laughs and stories brings you great comfort.



3. Reflect back on your caregiving responsibilities and decisions with pride.
   Find comfort in knowing that you did the best you could.



4. Review your journal
   How are you different today than you were on the day you first started writing in your journal? How will you use this experience to enhance your future relationships?

Web Link
>>Resources that can help Stage 5 Caregivers

Don't Feel Guilty!

by by Beverly Bigtree Murphy, MS., CRC., Caregiver

When love is not expressed or demonstrated by others to the person with Alzheimer's Disease, that lack of love deeply isolates the caregiver as well. What affects one has to be absorbed personally by the other because when you truly love someone, you want and need for them to be loved by others."

--"He Used To Be Somebody"

"George was an 80+ year old gentleman who had been caring for his wife (with late stage Alzheimer's Disease) at home until she became wheel chair bound at which time he was forced to institutionalize her. He was traumatized by the decision. He wanted to be a continuing force in her life, so he drove 60 miles a day to be with her. He arrived at his support group meeting in tears: The doctor at the home had yelled at him for spending too much time with his wife.

"What are you doing here? Why are you driving 60 miles a day to be here? There is no need for you to do that, you should be getting on with your life. She doesn't even know who you are"

Before anyone could respond to his plight and the insensitivity of that doctor, the group leader jumped in with this remark!

"Don't feel guilty! You've done all you could do for her. It is time for you to get on with your life. Besides, winter is coming and driving that distance every day is dangerous. There is no need to sacrifice yourself when she doesn't even know who you are anymore."

I believe the group leader was responding with what she thought was a positive and supportive thing to say, but how supportive was it? I think she missed the boat. This man was honoring his commitment to be with his wife in the only way he had left. He was determined that his wife shouldn't feel abandoned, and more importantly, that he hadn't abandoned her. What was missing from all the good advice was acknowledgement that his commitment gave him a sense of peace, and purpose, and resolution about his loss of her. His need to grieve and to let go in his fashion was totally ignored. He left this particular meeting feeling somewhat abused and even more isolated by yet another authority figure in his life.

Debi took her mother, Marjorie, who was in the mid-stages of Alzheimer's Disease, to a church event hoping she might respond to the familiarity of the service and rekindle memory of acquaintances in the congregation. It started out to be a simple afternoon with Mom. In Debi's words...

"My mom was still able to walk but she needed to be guided. I also had to help her sit and stand and hold her cake and coffee for her. While there, a stranger approached and identified herself as a family therapist. After ascertaining that I was caring for my mother at home and she did have Alzheimer's Disease, this stranger launched into a litany about co-dependency and why, for my own good, Mom should be in a nursing home.

Your mother's role,' she said, 'was to provide a place for you and to have no expectations of you owing her anything in return. If you've been made to feel this way then she has successfully manipulated you into a false sense of responsibility. You are operating out of guilt, and guilt is a useless emotion.'

She handed me her card, told me to call her if I needed help sorting that out, (presumably at an hourly rate,) and after forcing an unwanted hug on me she faded into the crowd from which she had sprung. All this said in front of my Mom. The questions I have are these:

• How do I defend myself from these people?
• What gives anyone the right to make assumptions about me or my family?
• Who asked her for her opinion?"

One can't help but wonder...

...what 'baggage' that 'therapist' was transferring to Debi.
...what over inflated sense of importance drove her to intrude on Debi that way.
...how her approach could possibly be considered helpful.

Grace is a long distance caregiver. Her father was moving into the late stages of Alzheimer's Disease, and she had just learned his wife (a second marriage) was looking for a nursing facility for him. It was Grace's first support group meeting. She had two siblings living near her father, who were a presence but unable to contribute much in help. Although unhappy about the wife's decision they nevertheless supported it. Grace was frustrated in many levels.

• She felt she was out of the loop and the last to know what was going on.
• She felt her father's symptoms were over blown and he wasn't 'that bad'.
• Most of all she felt cheated. Where her siblings had managed to eke out a relationship with their father while he could still relate to them, she missed out because she wasn't there.

She began to cry and the last words she uttered were these: "I feel so guilty."

The support group leader leaned forward in her chair and said in her most supportive tone, "Oh please, don't feel guilty."

Why Do Caregivers Face Guilt?

It seems to me we caregivers can't win no matter what choice in care we make.

• If we keep our person home we are guilty of martyrism or co-dependency.
• If we make the nursing home choice, our mixed feelings about that decision are devalued and we are still accused of being guilty of martyrism or co-dependency.

Guilt: The act or state of having done a wrong or committed an offense; culpability, legal or ethical. 1. Conduct that involves guilt; wrong doing; crime; sin. --Webster's New Universal Dictionary of the English Language

The phrase: "Don't feel guilty," is a conundrum that carries the same intent as asking a man if he's stopped beating his wife yet. Being told not to feel guilty is in and of itself an affirmation that the caregiver has reason to feel 'guilt.'

It is as if 'guilt' is the only explanation with which outsiders can categorize the connection we caregivers continue to feel towards our people in spite of their loss of cognitive abilities. That attitude results from bias. It does not the result from an intimate understanding of what guilt is.

Having been through the entire range of feelings that accompany this disease in the care of my husband, I can say that 'guilt' is probably the last attribute that should be attached to those of us facing this level of care.

• Caregivers are people who are dealing with regret, feelings of failure, of anger and grieving.
• Caregivers also suffer from a vague indefinable sense of wondering if they were given more respite, more tools, more encouragement and more help, that perhaps they might be able to keep their person home longer.
• They wrestle with vows, obligations and promises they may not be able to keep.
• They are painfully aware that care expenses define who can and who cannot afford help at home. For vast numbers, the cost of nursing home-care leaves caregivers literally trapped at home regardless of their preference in care. For many others it dictates placement in facilities that are far below the standard we want for our loved ones.
• They live in homes, the structures of which make home-care exceedingly difficult for our people if not impossible.
• They have family members and friends who have a great deal to say about how they do the job but who also abandon them during their greatest time of need.
• They are inundated with nothing but negativity and reinforcement of a bias that many just aren't able to question let alone fight.
• They also deal with a feeling of relief that is very difficult to admit let alone integrate, a feeling that goes hand in hand with getting a good night's sleep after making the nursing home choice and knowing they have also begun to say goodbye at the same time.
• And, for what it is worth, those who make the nursing home decision are far from removed from the continued care of their family members. In many ways the care becomes more demanding and more involved because it is removed from the home. It isn't as if you just drive them up and drop them off and you are 'off the hook.'

What a demeaning act to tie all of that emotion up into three little words: "Don't feel guilty."

'Guilt' is nothing more than another one of those cliched labels, imposed on caregivers by people unprepared to deal with those dying of this disease and those of us who care for these dying. Personally, I think the word is not only overused, it is so glib a comment that it should be eliminated from the counseling language entirely. Its use shuts the door on any significant dialogue.

If It Isn't Guilt, Then What Is It?

"I would remember and recall in minute detail the day Tom could no longer tie his tie, the first day he walked into the living room with his shoes on the wrong feet and the first day he lifted the telephone receiver upside down and couldn't figure where the voice was coming from. The hardest part was the expression on his face when those things happened. I came to refer to those events as the 'little deaths.' 'Little deaths' that were mourned completely in their own right when they happened and 'little deaths' we faced together until Tom was blissfully let loose of his awareness of those passings. I wasn't as lucky as he; I got to see it all. What he had been and how he must feel took over me at times sometimes leaving little room for my own feelings. I was the one who got to watch and mourn the loss of every nuance, of every motion, of every task that allowed him to function independently on the most basic of levels and the final event, death, wasn't even in the picture yet."

--Excerpt, "He Used To Be Somebody," by Beverly Bigtree Murphy, Chapter 6

Make no mistake about this; Alzheimer's Disease is a terminal illness and perhaps the one emotion that bogs us down the most is that of Grieving. It is the main emotion that drives this train from the moment that first loss is noted until the person dies.

Dealing with the grieving is a very necessary part of this caregiving task and you cannot deal with it until you recognize its existence. How we process our grief is what lies behind the anger, the depression, the feelings of helplessness and the feelings of abandonment. We not only mourn the physical loss of our person, we also mourn what might have been, what should have been and unresolved differences that are felt to be out of reach now. In the process we face our own mortality, sometimes for the first time in our lives.

While accusing someone of feeling guilty doesn't help very much – and trust me on this one, it is an accusation – acknowledging the grieving does. This is something friends, professionals and family members alike can relate to and help process. Unfortunately, few do. Instead we are violated with unwanted hugs, sad looks and language that only shuts down the need to talk. Grace's support group leader was a prime example of this.

As a member of that group I offered Grace the possibility that what she was really feeling was more akin to grieving than guilt. The decision to institutionalize her father meant that her father was getting worse. She was being faced with his dying and she wasn't ready for it, and, her inability to be there with him only heightened those feelings.

I noted that each and every member of her family was also dealing with grieving issues in their own way. The long-standing family dynamics were more a response to how that was unfolding than anything else. Her whole body language changed and she said she had never thought of it in those terms, but it made sense and she began to weep, as did many of us in the group. We launched into a poignant but healthy discussion of loss and personal fears of the event we were all facing. It was one of the most enriching meetings I've ever attended. The lessons to be learned are these:

1. It is time to stop telling us to not feel guilty about choices we don't want to make even though we may have to make them.
2. It is time to throw the word 'guilt' out of the jargon and start listening to what caregivers are really groping for, a forum where they can express their frustration, their loss, their grieving and their anger without fear of reprisal or judgment and where they can expect information, tools and resources instead of myths and clichés.

Something holds us in these relationships and that needs to be supported if we are to survive intact. The bottom line is that we are faced with a long road that always ends in the death of the person we care for. Platitudes and empty clichés simply don't cut it. We need something more.

"Let me not pray to be sheltered from dangers but to be fearless in facing them."

Rabindranath Tagore, Fruit-Gathering

Books I Recommend

C.S. Lewis Through the Shadowlands by Brian Sibley. Lewis chronicled meeting and falling in love with Joy Gresham, who died after a long battle with Cancer in this book. (There were also two movies made with the title, "Shadowlands," either of which I recommend).

A Grief Observed by C.S. Lewis. This book continues the story after Joy's death. It is the most poetic deeply personal account of what it means to watch and grieve over someone you love that I have ever encountered. It is rare that a volume such as this one enters one's life. It gave form to feelings I was unable to express and provided the words that will remain in my heart as my expression of my loss of Tom.

Necessary Losses by Judith Viorst. Ms. Viorst covers the range of losses that occur in life. Dying is not the only loss we face in life. Every change we experience in life brings with it an element of grieving. I found this particularly helpful in recognizing the grieving process in the loses that occurred throughout Tom's illness.

On Death And Dying by Elisabeth Kubler-Ross. This book is essential. It was one of the first written about the grieving process and I maintain that to understand the true feelings we experience as long-term caregivers, we must also understand the grieving process that permeates every aspect of care, every change we witness, and every step that leads to the final process of the dying.

On the Internet

National Hospice and Palliative Care Organization: This agency is a constant source of information, support groups, and services available to caregivers facing terminal illness, including Alzheimer's Disease. Hospice was a lifesaver for me and I cannot encourage caregivers to reach out to them soon enough. Frankly speaking they were the only organization that understood what I was feeling and supported me in my decisions regarding Tom's care.

Understanding and Acknowledging Negative Emotions by Avrene Brandt
Overcoming Negative Emotions by Avrene Brandt

Available from ElderCare Online™ — www.ec-online.net — ©2000 Prism Innovations, Inc.

Beverly Bigtree Murphy is a certified rehabilitation counselor and former caregiver to her husband who had Alzheimer's Disease. She is the author of "He Used to Be Somebody: A Journey Through Alzheimer's Disease Through the Eyes of a Caregiver. ". Her unique experience as a mental health professional and hands-on caregiver is combined with a spiritual orientation that is both practical and insightful. Beverly often brings ideas and examples from her Native American heritage to help caregivers understand themselves and their roles as caregivers. She also publishes articles on her own website, www.bigtreemurphy.com

From the Recipe Corner

We are still looking for all those GREAT recipes you have, so please send them into micki@theribbon.com.

Here is a sample of one of the recipes you will find, it's easy and a wonderful summer meal.

Please visit our new Recipe Corner. There you will find delicious 'family favorite' recipes. Please help add to our collection by submitting one (or more!) of your favorites.

Links

AOL News: Heart Disease, Alzheimer's Linked [Only on AOL]
LONDON (July 18) - Mounting evidence indicates the risk factors for heart disease - high blood pressure, diabetes, excess weight, high cholesterol and lack of exercise - also may play a role in Alzheimer's disease.

AOL News: Alzheimer's Cases May Triple by 2050 [Only on AOL]
The number of Americans with Alzheimer's disease could more than triple to 16 million by 2050, new research indicates.

Clinical Trials

M2 Receptor Measurements in Aging and in Alzheimer's Disease & Immune-modulating and Anti-inflammatory Therapy in Alzheimer's Disease

PROTOCOL NUMBER
IA0036

BRIEF TITLE
M2 Receptor Measurements in Aging and in
Alzheimer's Disease

OFFICIAL TITLE
Neurotransmitter Receptor Measurements in Elderly People and Patients with Alzheimer's Disease

SPONORING AGENCY:
National Institute of Mental Health (NIMH)

CONTACT PERSON:
NIMH Patient Recruitment and Public Liaison
Office 800-411-1222 prpl@mail.cc.nih.gov
Bethesda Maryland 20892

DRUG(S) (GENERIC NAME [BRAND NAME]):
[F-18] FP-TZTP

INCLUSION CRITERIA

1. Healthy males and females between 20-100 years old and volunteers with Alzheimer's Disease(AD).
2. AD volunteers must meet the NINCDS-ADRDA criteria for possible, probable, or definite AD.
3. All subjects will be required to be off all prescription medications which could effect the PET scan, such as medications with anticholinergic effects, for two weeks to one month prior to the PET scan, and off psychotropic medications for one month.
4. Subjects will be cautioned not to consume alcohol, marijuana, or psychotropic drugs while on the study, nor to smoke, use caffeinated beverages, or take over-the-counter medications such as cold medications (ie: Benadryl, Sudafed) for at least 12 hours prior to the PET scan.

INCLUSION SEX
Both

EXCLUSION CRITERIA:

1. Patients with significant cardiovascular disease, history of alcoholism, significant head trauma, uncontrolled hypertension, diabetes, bleeding disorders or other medical conditions which would make it medically unsafe to perform any part of the PET scan or would confound data analysis.
2. Subjects with evidence of significant chronic disease to be accepted into the healthy control group.
3. Subjects must not be pregnant.

CONDITION(S) STUDIED
Alzheimer's Disease
Healthy

DESCRIPTION FOR THE PUBLIC
The brain is made up of millions of cells called neurons. In order for a neuron to communicate with other neighboring neurons it uses chemicals called neurotransmitters. The chemicals are secreted from the neuron and bind to specific sites on other neurons called neurotransmitter receptors.
In order for normal communication to occur between brain cells, there has to be adequate amounts of neurotransmitter and receptors.

One specific neurotransmitter is Acetylcholine (ACh). ACh binds to acetylcholine receptors. Acetylcholine receptors are affected by the aging process and by Alzheimer's Disease. In both aging and Alzheimer's Disease the number of neurons secreting ACh decreases, and the function of some acetylcholine receptors is changed. The effect of Alzheimer's Disease is much more severe than the effect of aging.

Researchers want to study the effects of aging and Alzheimer's Disease on a specific type of acetylcholine receptor (muscarinic type 2 [M2]). In order to do this, researchers will use a technique called Positron Emission Tomography (PET scan). Positron Emission Tomography (PET) is a technique used to investigate the functional activity of the brain. The PET technique allows doctors to study the normal biochemical and metabolic processes of the central nervous system of normal individuals and patients with neurologic illnesses without physical/structural damage to the brain.

In this study patients will be given a radioactive tracer (ligand [F-18] FP-TZTP) by injection. The radioactive tracer will bind to acetylcholine receptors and allow researchers to see them under PET scan.

The goal of this study is to provide information about how well [F-18] FP-TZTP binds to acetylcholine receptors in young and old healthy volunteers and patients with Alzheimer's Disease. This information can be used later in other studies to design experiments to improve the understanding of the effects of aging and Alzheimer's Disease on the nervous (cholinergic) system.

TRIAL SITES:
9000 Rockville Pike, Bethesda, Maryland 1-800-411-1222

PROTOCOL NUMBER
IA0037

BRIEF TITLE
Immune-modulating and Anti-inflammatory Therapy in Alzheimer's Disease

OFFICIAL TITLE
Pilot Study of Immunomodulatory Antiinflammatory Therapy in Alzheimer's
Disease

SPONORING AGENCY:
National Institute of Mental Health (NIMH)

CONTACT PERSON:
Patient Recruitment and Public Liaison Office 1-
800-411-1222, TTY 1-866-411-1010
prpl@mail.cc.nih.gov

DRUG(S) (GENERIC NAME [BRAND NAME]):
Cyclophosphamide [Cytoxan]
Rofecoxib [Vioxx]

MANUFACTURER(S):
Bristol-Myers Squibb (Cytoxan)
Merck (Rofecoxib)

PHASE
Phase I

INCLUSION CRITERIA
1. Patients with Alzheimer's Disease who have mild-to-moderate dementia may be eligible.
2. Candidates must be able to assign a durable power of attorney (or already have done so) and give informed consent for this trial.

INCLUSION SEX
Both

INPATIENT-OUTPATIENT
Outpatient

CONDITION(S) STUDIED
Alzheimer's Disease

STUDY DESIGN
Study subjects will include 40 male and female patients with mild-moderate AD. In a randomized, placebo-controlled trial, two doses of CY placebo will be compared over a 6-month period. Those subjects who receive placebo over the first six months will have the option of receiving CY for a second six months. Three times during the study candidates will have a physical examination, cognitive testing for memory and thought processes, functional evaluation, blood tests, electrocardiogram and lumbar puncture (spinal tap) to monitor their health, side effects of medication and effects of the medication on disease progression. These tests will be done at baseline (before starting medication), at 3 months (in the middle of the study), and at 6 months (the end of the study). Patients will have DNA testing of a blood sample to study the genetic influences on Alzheimer's Disease, and magnetic resonance imaging (MRI) of the brain.

While the primary outcome measures will be safety and immunologic data, cognitive and other behavioral measures will also be collected. The biological outcome measures will include measures of brain volume (assessed by magnetic resonance imaging) and cerebrospinal fluid biomarkers of neurodegeneration, neuroinflammation, and neuroimmune activation. In addition, peripheral lymphocyte subsets and peripheral markers of inflammation will be assessed. This design is meant to provide dose-finding data to help design a more definitive efficacy trial with CY if the safety/tolerability parameters are acceptable in this pilot study.

DESCRIPTION FOR THE PUBLIC
The protocol is focused on the immune and inflammatory reactions in Alzheimer's disease (AD) and the possibility that blocking the inflammatory response may alter the course of the illness. The specific plan is to evaluate the biologic and clinical effects of two doses of cyclophosphamide (CY) immunotherapy in AD patients compared to placebo.

TRIAL SITES:
9000 Rockville Pike, Bethesda, Maryland Tel: 1-800-411-1222, TTY: 1-866-411-1010

Email Bag

From Bubbierg@aol.com

Hubby Ed at 75 is getting close to the end, I am told.
We are able to care for him at home with the help of a lift and stand device and a wonderful adult day care facility where he gets his showers and shampoos. He cannot speak or hold anything and hardly changes his facial expression. But he seems to be enjoying his little life. We have a minivan that holds his wheelchair and he goes on many outings. A hospice nurse sees him each week and she says his vital signs are very good.

But lately his swallowing reflex doesn't always work. We give him Ensure, but he enjoys a variety of foods. He chews very well but doesn't alway swallow. He drinks well but sometimes the chewed food remains in his mouth even when he takes a good drink. Anybody know any good tricks? Also any ideas for buying or preparing special food?

Thanks,
Rosalie in Milwaukee.

Hugs and Peace,
Karen and Jamie

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