Make your own free website on

Huntington's Disease Caregiving

Temporary List of Resources
What Is A Caregiver?
What Is An HD Caregiver?
Caregiving For A Spouse
Caregivers Bill of Rights
Helping Your Loved One
Your pHD Is Unique!
About Huntington's Disease
HD Articles of Interest
HD Guidebooks
Post Emergency Info
Early/ Early Intermediate Stages
Late Intermediate Stage
Swallowing Diagnostic
Speech & Language in HD
Swallowing Safety in HD
Early Advanced Stage
Swallowing Difficulties~Physician's Guide
Warning Signs of Swallowing Problems
Swallowing, Coughing, Choking & Pneumonia
Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
Diet & Nutrition in HD
Nutrition and Huntington's Disease
Nutrition Information for the Care Giver
Texture & Consistency/Thining & Thickening Foods
Drinks/Shakes Recipes
Adaptive Equipment-Mealtime Help
Food Thickners
What Is A Feeding Tube?
When To Consider A Feeding Tube
Feeding Tube Decision in HD
Feeding Tube Resources
Advanced Stage
Late Stage Care
Commom Problems Encountered~Hospice Care
Temporary List of Resources
Personality Issues
Legal Issues
Disability Issues
At Home Care
Outside Care
Caregiver Tips
Caregiver Support
HD Facts
Helpful Forms-Download
Personal Articles/Stories
Miller Messages
HD Links
Fix It-R-Us?
How-To Tips
Have An HD Question?
Beautiful Memories
Caregiver's Chat Room
HD Caregiver Newsletter
Daily Humor & Health News
Dreams & Signs (Fun Stuff)
Share A Link
Send An HD Greeting Card
Location Map
Blank page

Just a "starter" page to add things from the old HD Caregivers Web Directory and newer resources.  Site will most likely be changed to include these "Sections" when more items are listed.  Jean
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.
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. Living
HD Activities of Daily Living Rating Chart 4pgs
Assessment in Daily Living for Huntington's Disease patients.  This chart can be printed out and used to measure noticable changes to discuss with your physician.
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 orservice is available.
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.
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. In most cases, long-term home care also requires family members who can fill in gaps that the outside care services do not cover. For many people without such family assistance, long-term home care is simply not an option...
Hospice article on what to do when hiring outside help, interviews, references, putting in writing what you expect from them, etc.
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
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.
I remember the day I heard the news: terminally ill. Since that time, my emotions have been on a roller coaster. Shock first, then disbelief, I just knew a mistake had been made. When it was inevitable that one hadnt been made, the anger began to surface. First, at what I perceived as inadequacy of the physicians, then at God.


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 .....
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.


Food & Drinks
When people are very ill, the smell of food cooking and the size of portions often turns off the delicate digestive system and makes the patient nauseous. I realized food had to be prepared from the most nutritious and fresh ingredients -- in under 10 minutes. That way the the patient could receive all of the life-giving nutrients long before nausea set in. I also wanted this cooking to be the freshest possible -- with no imitations, additives or preservatives, and nothing out of a can...
AARP article:  Caregivers must be able to handle both the practical and emotional aspects of caring. This article offers some factors to consider...
How To's


Hospice article: Journaling provides you with a way to reflect on what is happening to you.  Unlike keeping a diary, journaling does not ask you to focus simply on what happened during the day. 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.
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.


Also see: LegalDivorce Issues

If you are someone's power of attorney, what is the correct and legal way to sign documents -- for example, checks?


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.

Caregiving: Longterm care & self-care. - It is a delicate balance: organizing a life in such a way as to sleep enough, work enough, connect with others enough, and still enjoy time alone for the things we love or need to do.

FamilyCare America: important questions to ask and consider in long-distance caring.Crisis, Setting Up An Emergency Plan; etc.




I've written this to assist you in finding the answers you seek. I've made a few assumptions along the way. I've assumed 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. I believe the basic twelve principles, however, are universal.
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.
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.
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. Here is an example of one adjustment I witnessed:
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


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.




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.  Several resources for caregivers have been set up on the internet.  These include the following articles by
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.
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. For information about the services offered by each agency, call the agency. 
Caregiving Articles-AARP Click on "Caregiving" up top
Managing Stress, Long Distance Caring, Involving Others, Hands-On Care, etc.
Caregivers Journal
Some tips for setting up a notebook to keep track of your caregiving situation.
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. list of top ten things.
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. In the meantime, use these suggestions for whatever theyre worth to you. If a particular idea doesnt feel right, dont do it. The key is simply to keep obstacles to a minimum so your writing will flow out of you as naturally as possible.
Caregiving is a journey of six stages. Where are you? What next?
By Denise M. Brown

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. Remember, as with all new ideas, keep an open mind.  After all, the name of the game is falling asleep. Just give at least one of these non-traditional ideas a try.  The worst thing that could happen is that you might actually get more than three hours of sleep tonight. You are a caregiver and the last thing you need is to fight with your pillow another night.


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. And they almost always come with time pressures, emotional pressures, and stress.
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 
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.
A scale to evaluate your level of caregiving. It is an excellent effort to provide some guidelines for caregivers and to evaluate your level of care and value which you give your carereceiver and yourself. The scale is a 1-10 continuum which describes the various styles of caring. Circle the number or numbers which best describe your level of care
A magazine dedicated to caregivers.  Go to site, type in your email address and click on subscribe in the e-newsletter box. Subscription is  free. 
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. Since so much care is provided in the home and few physicians make home visits, the following principles should serve as a guide to some of the things caregivers need from doctors.


Twenty Ways to Care for Caregivers

Note: On flex-time: most major companies will permit salaried employees to arrange a flex schedule to care for a seriously ill family member.  I worked for Honeywell, Inc. who approved a flex schedule allowing me to work in the office mornings and telecommute from home in the afternoons in order to care for Kelly when the Hospice shift ended.
AWS Appendix B- Models of Flexible Work Schedules
Handbook On Alternative Work Schedules, Appendix B Models of Flexible Work Schedules  for US Government Employees
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
Double Dipping" Debacle
In more than 20 states, Social Security offsets to unemployment benefits
deliver a rude awakening to older workers.
Family and Medical Leave
You may be legally required to give your employees unpaid
time off to care for a seriously ill family member, to recuperate from their own serious illness or to care for a new child.
Family and Medical Leave Act (FMLA) provides for up to 12 weeks of unpaid leave for certain medical situations for either the employee or a member of the employee's immediate family; however, in many instances paid leave may be substituted for unpaid FMLA leave. From the U.S. Department of Labor  Also see: FORMS These forms are only available in PDF format. See "Tools For Viewing" this website.
FMLA provides for unpaid sick leave. Look here for specific information
about FMLA leave from the U.S. Department of Labor

Family & Medical Leave Act Resources From National Partnership:

Flextime - how to get your boss to say YES

Flextime - how to get your boss to say YES to your proposal.
Other resources here:

Flexible Work Options For Moms: How To Negotiate A Flexib...

Flexible Work Options For Moms: How To Negotiate A Flexible Schedule, Keep Your Job & Career. Written for mothers, but good ideas to use.
U.S. Department of Labor rules and regulations regarding flexible hours in the work place. 
Striking the right balance between the demands of work and the desire for more time at home can be tough. You may find you need flexibility to devote time to care-giving or other family responsibilities. To make any change to
your work/life time proportion, planning and flexibility are key. With the right plan in place, you may be able to increase the time you spend away from the workplace while still fulfilling job requirements and satisfying your employer.  What You Should Know 
On your desktop so that by tomorrow you can have a persuasive plan and proposal to help you get approval Flex Success is a fast (download it) and easy (fill-in-the-blanks) proposal template and strategy guide, now in its ninth year of convincing bosses click here  Cost is $25.00 but time saving!

Flex Time - Sample Telecommuting Policies and Forms

State of Washington's Executive Order on Flex Schedules.
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.