Barbara

Barbara Boyle, CEO

Coping With the Hospitalization of a Family Member with HD

From the Rush Manual for Caregivers

Sometimes a serious illness requires that caregivers take a person with HD to the hospital or emergency room.  This is an extremely stressful time for the person with HD and the caregivers. Hospital staffs do not understand HD.  If your person cannot talk clearly, it may be assumed he is “out of it” mentally.  The acute illness my temporarily worsen problems with memory, thinking, judgment, language and behavior. All the confusion of a strange place and dozens of strange people may result in agitation, which can interfere with diagnosis and treatment.  Medications may be prescribed to control behavior which can further impair thinking and behavior.  If you know to expect these difficulties and realize your person will return to his previous level of functioning in a few weeks, it won’t be as upsetting for the caregiver.  If you or another family member or friend who understands him try to be with him at the hospital most of the time, you can be his voice and can explain HD to the staff.  They need you.  You are the expert for your person with HD!

Fall Prevention – How To Stay On Your Feet:

Talk by Sue Imbrigilo at 2008 Convention

Causes of falls are:

Weakness Hip, knee and ankle muscles all effect balance.

Strength is lost with inactivity.

Poor balance People with HD have decreased reaction time, decreased coordination of movements, decreased speed of movement, decreased ability to do two things at once.

Medication Side effects from medication may be dizziness, drowsiness, unsteadiness and low blood pressure.

Fatigue Don’t underestimate this.  It is not always recognized.

Perceptual impairments People with HD have difficulty visually scanning.  They adapt slowly to darkness.

What to do to prevent falls:

Exercise.

Monitor medications.

Preserve vision – wear glasses if necessary, increase lighting.

Rest muscles – take frequent breaks.

Safety at home:

Clean up clutter.

Limit furniture and obstacles.

Take up throw rugs.

Limit stair climbing.

Turn on lights.

Bathroom safety:

Use a shower seat.

Use grab bars.

Use a non-slip mat.

Connecting With Your Inner Spirit

Strengthens HD Family Members

Pat Donelli, Chaplain for Prime Time Adult Day Program, talked about how connecting with your inner spirit brings happiness in spite of HD.

She said many people suffer from Spiritual Deficiency Syndrome or loss of a sense of soul.  Our constitution states the we have a right to “Life, Liberty and the Pursuit of Happiness. Pat says that “When we betray our spiritual nature, we pay a great price.”

To find our spiritual side, we must realize we are in charge of our own behavior.  We have to determine what is important to us and work on character defects that undermine spirituality.  We need to keep things in perspective. (Think, fifty years from now will this matter.)

Pat suggested spending 10 quiet minutes each day.  Empty your mind of the day’s worries and problems.  If we sit quietly we will receive answers that come from inner vibes.

We are each endowed with a human spirit and the ability to make the most of our circumstances.  It’s not about what happens in your life, it’s what you do with it.  The spirit rises above adverse conditions.