Tips For Caregivers

Caring for a loved one with HD can be difficult in the best of times and as the disease progresses, the caregiver often feels as though it is them against the world. This page is for you, the caregiver.

We will be sharing tips and ideas from other caregivers to help provide your Phd (person with Huntington's Disease) with a better quality of life. Remember that no two people with HD are the same, and what works for one person may not work for another. If you have a caregiving idea or tip that has worked for you, please share it with us.

Contact: Susie Hodgson.

Five tips on how to check a nursing home

1. Review the home's most recent annual inspection report, which must be posted at the facility. Also review previous inspection reports and complaint investigations. Facilities must make them available.

2. To compare nursing homes, check out the star ratings at http://www.medicare.gov/NHCompare/.

3. To check if a nursing home has been fined, go to www.idph.state.il.us and search for "nursing home violators."

4. Registered nurses per resident--a good indicator of quality care--is rated for each home at http://www.medicare.gov/NHCompare/ under "Nursing Home Staffing."

5. If care is poor, consult the home's director of nursing. Review the resident's care plan and doctor's orders. File complaints with the Illinois Department of Public Health, the home's ombudsman or, in cases of suspected abuse, the police.

Gary and Jean Schmidt

HD Prayer

For Those That We Love with Huntington’s Disease

by Jean Schmidt

Some may not know it, but as time goes by, he’s still the same person, but in disguise.

They think he’s changed and not who he used to be, but he just can’t show it to you and me.

He may seem disinterested and never excited, but you should know, that inside he’s smiling.

He still loves us all and is happy to see us, but his limitations don’t allow him to show us.

So give him some time and just be patient, communications, for him, has a new definition.

We may get frustrated, impatient and weak, but we continue to care for those more meek.

God offers us the “Fruit of the Spirit”, and we must remember that He is there for us.

He won’t give us more than we can handle, and for all of us, He lights a special candle.

So try to stay calm and take it day to day, and more than anything, remember to pray.

(Frut of the Spirit – love, joy, peace, patience, kindness, goodness, faithfulness, gentleness & self-control)

This page attempts to report items of interest related to caring for individuals with HD. HDSA and the Illinois Chapter do not provide medical advice, nor do they promote, endorse or recommend any product, therapy or institute. Please check all drugs, treatment, therapies and products with your physician. Statements and opinions expressed on this page are not necessarily those of HDSA or the Illinois Chapter.