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Huntington's Disease Caregiving

Caregiving For A Spouse
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
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  Caregiving For A Spouse 2pgs


Caregiving for a Spouse

Changing roles in the marriage

When one partner in a marriage becomes ill, the relationship between the
couple changes. Knowing what to expect can help ease that change and
make it less traumatic.

Both partners can expect to go through transitions not only in roles, but in
emotional states. Consider what it would feel like to no longer be able to
do the tasks that define your role in your marriage. For instance, when a
husband who was once the bill-payer, plumber, and garbage remover
becomes ill, he may no longer be the "man of the house" who provides both physical and emotional strength for his wife. Taking it one step further, how he might feel if he suddenly needed his wife's help with even the most basic personal hygiene tasks?

At the same time, how might this man's wife feel as caregiver? She faces
these new tasks while also dealing with her husband's grief over his illness
and its consequences. She may feel that since she's healthy she has to be
"the strong one," even though she may be experiencing her own grief.

In addition, both partners may begin to have feelings of helplessness, loss
of dignity, and loss of identity. Both may find themselves grieving the loss
of the way the relationship used to be. This is a difficult transition for both
spouses and could lead to depression.

Building and maintaining a good relationship

When one person becomes dependent on another, the existing relationship
changes and becomes more difficult, so all caregiver relationships require a lot of work.

Counseling sessions, family consultants, and any other type of proactive, constructive communication may help build a strong foundation in the household.

To maintain a good relationship, it is important to consider the following issues:
Loss of independence

When someone loses part or all of their independence, it can be very embarrassing, infuriating, and/or depressing. The caregiver needs to be patient and understanding of the pHD's feelings.
Feeling overwhelmed

When someone becomes dependent on one person, the caregiver can become overwhelmed and experience an array of emotions resulting from stress or burn out. It is important for the caregiver to have means of relaxation or venting to maintain his/her sanity.
Learning new skills
Outside of the emotional considerations, new tasks, responsibilities, and routines must be learned to accommodate both the caregiver and the pHD. This transition takes patience, communication and a lot of give-and-take.
Taking breaks

It is important to regularly take time alone to give the caregiver and the pHD a break away from each other. Be sure that the caregiver has a reliable support system so that when the relationship gets tough, each member can have some breathing room. The caregiver may consider including others in the care of their loved one. Examples of alternate caregivers include friends, other family members, adult day cares, and respite care.

The caregiver and the pHD need to be aware of and prepare for changes so that they both may deal with them effectively. Keeping the lines of communication open and being understanding are crucial factors to the maintenance of a working relationship.


What can I do to stay in a good relationship with the my spouse?

  • Be patient:

    Many pHD's get upset when they need more help. They aren't used to needing extra help so they get angry or sad. Talk openly to them, and be patient.
  • Relax:

    Caregiving isn't easy work and it can change your lifestyle. Find a way to relax and let go of stress.
  • Learn:

    You need to learn how to take care of them (these may be new skills). This takes time and energy.
  • Take a break:

    You both still need to have time on your own. Adult day care, respite care, or help from other family members may give you the break you both need.
Remember, talk to each other. Express how you feel. It will help you each day in your relationship. And, consider help from a family counselor.
Adapted from articles at: