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Huntington's Disease Caregiving

Miller Messages
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About Huntington's Disease
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Swallowing Diagnostic
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Early Advanced Stage
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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
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Adaptive Equipment-Mealtime Help
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When To Consider A Feeding Tube
Feeding Tube Decision in HD
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Articles by Jean Miller
 
Sorry, as I started including these under Personal Articles/Stories I realized I was quickly starting to hog the whole page!  I have written several  real life "stories" during my years caring for my daughter, Kelly.  I hope no one feels I'm being egotistical, but  I feel some of these may be of some help to others going through similar experiences.  There are many more I need to review and convert to Word documents.
Respite Care - Your First Time!
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:  Download document: Respite-Your First Time
Communication Book
The book I made up for those caring for Kelly was a big help to temporary carers especially when her speech was impeded, plus it made Kelly feel more secure knowing that there was a way for her to communicate her needs!  You can also see a few of the pictures I used in this book by clicking on: Picture Cards                   Download or read:  My HD Communication Book
A Crack In My Veneer
This is a post I made to Hunt-Dis in July 1998, 4 months before Kelly died telling what it was like for "superwoman" to come apart at the seams when depression hit me like a ton of bricks.  Contains some sensitive discussion on the horrendous bed sores Kelly had.  Download or read A Crack In My Veneer
Caregiver Depression-Let's Talk Honestly
A post I sent to Hunt-Dis talking about the seriousness of depression especially in caregivers, the signs to look for and a few excellent links to resources on depression. Download or read: Caregiver's Depression~Let's Talk Honestly By the way, the referenced articles are now available in these languages: English   Bengali  Punjabi   Hindi   Gujarati   Urdu  Chinese  Greek  Spanish  Turkish  and Welsh
Getting Some To Make Plans
What I did to get Kelly to agree to making advance directives, a will, burial plans, memorial service, etc. for herself that became a godsend for when she died 2 years later. Download or read
Giving Your Problems To God
My post written to another (male) caregiver discussing the frantic, endless pace caregivers go through in caring for a loved one in the later stages of HD, tne caregiver "burnout" and how turning your problems over to God helped me. Download or read: Giving Your Problems To God
Tell Me How To Cope
Letter 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 Juvenile Huntington's Disease.  My personal experiences with Kelly.  Download or read  Tell Me How To Cope