Coping with Loss as a Caregiver

Taking care of a loved one with Huntington's Disease is never easy no matter whether it is a parent, a spouse, a child, or a friend. All along the journey there are triumphs and grace periods and lots of love, but there are also losses to be grieved. We lose our plans for the future, we watch our loved ones lose the ability to do things that once came naturally, and often we appear to lose the people they once were as the disease takes over. And sadly, we may be caring for more than one perso

Marsha L. Miller

Self Advocacy - Equipping Yourself and Preparing Your Approach

A diagnosis of Huntington's Disease in the family can be so devastating and life changing that it seems as if there would be a team of people ready to step in and help you find the resources you need for yourself or your loved one. Unfortunately, there is not. Resources are available but they are often hard to discover and there is no continuity of care - you have to put it together service by service. You will find people who have never heard of the disease or - sometimes worse - have just a li
Marsha Miller, Ph.D.

Trudy's Story

Huntington's Disease has been mentioned, or should I say whispered in my family my entire life. My grandfather on my mother's side had it but he died years before I was born. He had four children: my uncle Darrell, Aunt Connie, Uncle Rick and my mom, Trudy. Growing up and seeing Darrell, I always knew he was "different." He was the only grown man in his forties I had ever seen that still lived at home. He was also a chain smoker, loved game shows and would laugh hysterically at anything I s
Miranda Adkins

Here she comes... Miss America!

Let me introduce you to two families touched by Huntington's Disease that I've met in the last six months. A mobile home in a trailer park. Could be anywhere in the United States. But this one is in the suburbs of a small city in the Northeast. End to end on the couch lies a woman with her head and feet propped up with large pillows. All but her face is covered by a quilt. Her husband rocks in a recliner close by holding her hand under the quilt. The house is very orderly. It's also very
Jim Pollard

Wanting What Once Was

I have lived with H.D. for over twenty years. My Father had it back in the early 40's or 50's. Nobody knew anything about it then. They thought at that time it was alcoholism, as my father was always drunk. Eventually the town committed him to a mental hospital. He later died of jaundice and strangulation. It was years later in the early 80's that my oldest sister was diagnosed with H.D. Only then did we know that it was our father who carried the gene. My oldest sister was placed in vari

Story of a Caregiver

His face is care-worn. Deep worry lines speak of the sadness he harbors. His back is bent under the weight of the burden he bears. His life, his love, his soul mate. His responsibility. He feeds her, bathes her, dresses her. He makes sure she gets her medications when she needs them, makes sure she gets to the bathroom when she needs to go. Sometimes, when she's lost in the fog of her far away world, she just "goes" wherever she sits. He gently and patiently cleans her. He cleans
Vicky Pratt

Please tell me how to cope!

This is not so much as a difficult subject for me any more, as it is for someone who is going through this with their child as you are. First, you DO HAVE the most important thing to give.....LOVE. This does not come freely and not all people have it to give!!! My heart and soul died several times every day in the last few years of Kelly's care and especially the last 6 months of her life since she went downhill so very quickly. To have to tell your child that it is okay to let go, i
Jean Miller

Another 5 Minutes

Listen to the sounds of early morning. The birds are chirping while the gentle breeze welcomes the morning. The squeal of school bus tires gathering the children for the fun day ahead. You yawn, stretch, look at the alarm clock and whisper, "Just five more minutes." However, when your child calls out -- "MOM !!" -- five minutes extra sleep will be a treat for another day. What mother doesn't delight in cuddling, washing, feeding, dressing, and powdering her child. The soft scent and fresh a
Loretta Church
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