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Personal Articles
 
All of the below articles are in Word97 and can be printed and shared.
Articles by Jean Miller
 
Tell Me How To Cope -This was written in response to a mother who has asked for advice on how to cope with the emotional strain of caring for a child in the late stages of JHD.
 
...A Crack In My Veneer - Even super-caregivers can go into a tale-spin with depression.  This is my story when life became more then I could handle.
 

Giving Your Problems To God -  Remember that old saying, "When the student is ready the teacher appears"? I must have read or been told a million times we need to put our lives in God's hands. I would think "good, I'll do that" and before you know it you're doing everything yourself again.

Getting Someone To Make Plans - How I got my daughter Kelly to want to share her thoughts on Advance Care Directives, Power of Attorney, Funeral Arrangement, Memorial Services, etc.

 
Without recognizing the signs of caregiver stress or burnout, we subject our minds and bodies to the damaging consequences of illnesses, lack of patience, the inability to concentrate and focus, and sometimes-even numbness to emotional feelings. All of these are things that are essential for the very job you are trying to do .....caring for someone you love.
 
I think the apprehension, guilt etc. come as part of the overall caregiver package and the first time you have an opportunity to use respite care for your loved one, sometimes that guilt can be overwhelming. When you DO get some respite time away for a day or more, here are some things that might help your loved one (and you) adjust.
 
The communication book I made for my daughter, Kelly,
was fairly uncomplicated! Some of the pictures were cut
from magazines, some from clip art. It was broken out
into separate sections for any temporary caregivers .
 
Other Articles
 
by Betty Ann McDorman
Queen Elizabeth had finished her walk-a-bout. The door to her limousine was held open. When suddenly she changed her course...turned... and walked straight to where Michael was crushed in the crowd. The Queen had no way of knowing that this compassionate young man with a large heart was a strong hockey player only three years ago ... and today is terminally ill with Juvenile Huntington's Disease, a disorder that causes most people to shun him.
 
By Louise Wilkinson
I couldn't stand it! I spoke up and, of course, started crying. I said that I admire caregivers so much for being there for us, being the warriors and volunteers and spouses, mothers, daughters, husbands, fathers or brothers, etc. Tiptoeing around us when we're miserable.
 
 
by Pat Kaufman
A loss is a death of sorts, and the natural reaction to loss is to grieve. For caregivers, whose losses are sustained over a long period of time, grieving itself can become a long-term process. "Illnesses that keep changing can bring grieving and re-grieving."
Imbedded Articles
 
The following articles or links are imbedded here and used on other webpages
Burnout
by Dr. M. Ross Seligson Being able to cope with the strains and stresses of being a Caregiver is part of the art of caregiving. In order to remain healthy so that we can continue to be Caregivers, we must be able to see our own limitations and learn to care for ourselves as well as others.
 

Caregiver 101 Basic Help

Caregiving Decision Questionaire
A brief list of questions to help you set prioities and solve caregiving problems.

Caregivers Document Organizer
A form that will help you identify, locate, and organize the important documents your will need as a primary caregiver.

Whatever the specifics of your situation, there are some important basic guidelines to remember when you provide care for a loved one. Describes: Preserve dignity; Involve your loved one; Promote independence; Ask for help; Be an advocate and Take care of yourself 
 
...who are on similar courses, whether the patient is terminally ill or not.
 
Doing Now -  Caregiver.com list of top ten things.

Caregiver Support

Ask The Experts - The decisions you make on behalf of your care recipient can make you feel like screaming. Pulling your hair out. Running away. We've got a better idea. Ask one of our experts (Site lists 9 experts with email addresses you can send a question for support to.)
 
Caregiving decisions can be hard to make. They are often complicated, involving many different, sometimes conflicting, factors. Consequences can affect other peoples lives and health....usually people who are very important to you. They often involve unfamiliar, unexpected circumstances.
 
Caregivers Log
Use copies of this form to monitor daily changes and help with communication among care providers working in shifts.
 
How does it work?Answer a few simple questions to create and maintain an
Action Plan that will help you provide better care for a loved one. What does
it do? The CarePlanner generates specific information based on your situation so you dont have to waste time sifting through irrelevent content. Point your mouse on the buttons to the right to find out more about the CarePlanners features.
 
This is what happens when a member of the family or a friend is experiencing the dying process; those close to that person must adjust their life styles to fit the needs of the dying one. This adjustment comes in many forms.
 
What You Can Do To Be a Supportive Caregiver - Hospice article:  Create a climate that encourages and supports sharing feelings. Understand that men and women often communicate in different ways, and make allowances for those differences. Be realistic and flexible about what you hope to agree on or communicate. Help the patient to deal with anxiety and depression. When you and the patient disagree on important issues. Explain your needs openly. Choose your battles carefully. Let the patient make as many of his or her decisions as possible. Support the patients spiritual concerns. Help to resolve the patients unfinished business. Working with Health Professionals.  Anger, Fear, Loss and Sorrow, Guilt, Obstacles, etc.
 
What's your beef?  - Do you have a gripe to air about the healthcare industry? A frustrating experience that you want to vent about? A situation you'd love to warn other caregivers about? Here's the place to do it!

Children
Hospice article: Children Are Aware, Communication Barriers, Not Having All the Answers, Overcoming Taboos, Developmental Stages,  Challenges of Talking To Your child, Religion and Death, Unemotional Opportunity,  Some Children's Reactions, Should A Child Visit the Dying? Attend funerals? Sending children away from home.  Children's mourning.

Depression/Stress

Caregiving Articles-AARP Click on "Caregiving" up top - Managing Stress, Long Distance Caring, Involving Others, Hands-On Care, etc.
Sometimes life hurts us. Sometimes it robs us of something, or someone, very dear.  Sometimes it causes us pain a pain we did not choose and do not want. Sometimes life severely restricts us. When that happens, we feel out of control.
 
There are times when the hours you work are too long, or when the demands you face are too many, or when the rewards you receive seem too few. And still, you are a caregiver, and you know that someone is counting on you and you do what you've learned to do and what you believe is right to do. There are days when the person in your care is not easy to care forperhaps they're angry and they take it out on you, or perhaps they're depressed and they refuse to respond to your efforts. There are days when you've gone .....

Guilt

 

Helping A Caregiver

Twenty Ways to Care for Caregivers

Respite

Respite Care-Caregiving For A Spouse; A Parent - When a family member enters the role of caregiver, their whole life changes.  This can be especially stressful if the caregiver has additional health problems of their own. The goal of of hospice is to maintain quality of life for the terminally ill and their family.  Because of this, respite care is one of the services available from many hospices. 

A short article written by Jean Miller listing 9 things which might  help your loved one (and you) adjust to your first respite break.
 
The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area. The service is also useful when a family travels or must move to another state.  How to Use This Service- Click on your state in the table below to see a list of respite providers.

Respite Care Spells Relief for Stressed Out Caregivers -Caregivers who take care of someone in their home must deal with the needs of their loved one 24 hours a day. The only way to keep this stress from debilitating you, the caregiver, is for you to catch a break. Respite care might just be the relief you need.

Sleep

Insomnia: The Caregivers Role

Not Another Sleepless Night  -Some caregivers exert enough energy during the day to power a small nuclear submarine, but sleep deprivation is a common problem among a large percentage of caregivers. If common sleep inducing measures don't work for you, its time to try some unconventional methods.

Help - Inside The Home
Adult Day Service Directory
This directory will help you in your search for quality, community Adult Day Services. Use it in conjunction with the checklist provided in the NADSA Guide to Selecting an Adult Day Center to find a center that suits your family's needs.
 
Assessment Worksheet-To Access Needs For Daily-General - This ADL worksheet will help you and other family members determine what types of assistance your loved ones needs to discuss with doctors, social workers, etc. 
 
 
Doctors - What Caregivers Need - Those who provide care for ill family members or friends are vital members of the health care team. Most of them have no formal training and rely to a great degree on what they learn from the attending physician and other healthcare professionals. These principles should serve as a guide to some of the things caregivers need from doctors.
 
Getting the help you need-Handbook For Mortals -Coping with a serious illness, our own or a loved one's, causes a lot of anxiety and confusion. This can be made worse by our health care system - 
which  is really not a system, but a
mix of disconnected, and sometimes dysfunctional, groups, plans, services, and professionals. If what you need is a little help for a short amount of time, you might find that no program or service is available.
 
Hands-on Care: practical things to think about -AARP article:  Caregivers must be able to handle both the practical and emotional aspects of caring. This article offers some factors to consider....
 
Helping Family & Loved Ones-Handbook For Mortals  - During your illness, family and loved ones will have to make decisions and support one another. And they will have to make practical arrangements to help you. It would help if everyone recognized that families and close friends are really "going through it" with a seriously ill or dying loved one. Here you will find some stories and advice about family togetherness and caregiving.
    ones
    out of control?
    overwhelmed
 
Hospice article on what to do when hiring outside help, interviews, references, putting in writing what you expect from them, etc.
 
Hiring In-Home Help - Hospice article:  Exploring Home-Care Options; Writing A Job Description; Looking For Help At Home; Interviewing The Applicant; Investigating Legal Issues;  Making Your Home Care Situation Work
Home Care-Is It An Option? - Unfortunately, though, long-term home care is not always a practical solution. Home care may be sufficient and affordable if one needs help with some physical movements around the home -- bathing and getting meals, for example -- or with exercise or physical therapy or monitoring a chronic health condition. But if one needs extensive medical treatment, or close monitoring for many hours each day, the difficulty of arranging different types of care may make home care impractical -- and the cost may become prohibitive.
 
Pallative Care-Five Principals(PDF format)
Describes what care can and should be like for everyone facing the end of life.  Some  of theses ideas may seem simple or just common sense.  But all together, they give a new and more complete way to look at end-of-life care.
 
Power of Attorney-How Do I Sign Checks Under One? -  If you are someone's power of attorney, what is the correct and legal way to sign documents -- for example, checks?
 
Practical Care for the Dying-Natural Death Handbook Chapter 5 - Long but excellent article covering a mirade of situations: Hospitals: attitudes;  doctor's withdrawing from the dying; nurses too busy.  Dying at home-the legal situation.  Making decisions etc.
 
Hospice article:  Finances, Settling up emotional, Role of advocate, Drawing an Ethical Will, funeral, one-stop--shop A safe place to talk,  A need to know, Guides and other special people
 
When You're the Caregiver of One Who's Ill - You may have become a caregiver only recently, or you may have begun a long time ago. You may have taken on this role temporarily, or you may expect to have it as long as both you and the one for whom you are caring are alive. The two of you may live under the same roof, or you may not. You may be close, or you may be at a distance. This experience may be a labor of love, or a labor of loss, or a labor of obligation, or hardly a labor at all. Whatever your situation, you know that being a caregiver can be a demanding task.
 
Help - Outside The Home

Assisted Living and Supportive Housing Fact Sheet - Between Home and Nursing Home-Assisted living and other forms of supportive housing are specifically designed for those who need extra help in their day-to-day lives but who do not require the 24-hour skilled nursing care found in traditional nursing homes.
 
Information and tools that can make caregiving easier. Enter this site by entering the ZIP code of the area that most interests you and clicking GO. This will localize resource listings to that community.
 
Long Distance Caregiving-Questions To Consider - FamilyCare America: important questions to ask and consider in long-distance caring. Crisis, Setting Up An Emergency Plan; etc.
 
Ideas
 
Caregivers Journal
Some tips for setting up a notebook to keep track of your caregiving situation.
 
Mr. Miller wrote this to assist you in finding the answers you seek making a few assumptions along the way. It assumes you're close to the one who's dying--they're your spouse or lover, your parent or sibling or child, your close friend or trusted colleague. If your relationship is more distant, some of the specific ideas presented here may not ring true for you. Basic twelve principles are universal.
 
Journaling-Making a Journal for your loved one - Hospice article: Journaling provides you with a way to reflect on what is happening to you.  Through journaling, you are invited to look inward at how you are affected by these struggles. Your journal will give you a place to express your pain, frustration, fear, loneliness... It will soon become your friend in the middle of the night as you keep watch
 
Sixteen suggestions for keeping a journal. They have come from my own experiences and from what others have shared with me. These ideas are only a starttheres ever so much more you can do as you expand upon this practice.

Where Are You? Caregiving Stages/Caregiving Years - Caregiving is a journey of six stages. Where are you? What next?By Denise M. Brown

Working
 
Balancing Work and Caregiving-What You Should Know/Coping with Double Demands - Your loved one  needs full-time care, but you can't afford to quit your job or take time off. What You Should Know
 
Your Rights Under the Family & Medical Leave Act - Hospice article: FMLA requires covered employers to provide up to 12 weeks of unpaid, job-protected leave to eligible employees for certain family and medical reasons.  Article explains what you need to do.