That was one of the topics at the most recent HDSA Convention. Debbie Pausig hosted a workshop called Managing Marital Relationships in HD. In this workshop, she discussed the various ways to show intimacy to your spouse as the disease progresses. She herself is the widow of somebody who lost the battle with Huntington's Disease.
In this workshop, she takes everybody through the various stages of the disease and how they affect the relationship. All of the changes to the relationship at each stage. Not just when it comes to having a sexual relationship with your spouse, but all of the different areas of the relationship from raising the kids to handling the finances and cleaning the house. The reality of this disease is that it will affect all aspects of your life together.
Intimacy is about more than just the sex part of the relationship. It is about loving a person for their mind, body and soul even when the physical aspects may not be present. So, how do you do that?
Ms. Pausig has some advice. First, remember what it is that you fell in love with and why you still love him today. Even in the late stages. Learn to just "be" with your spouse. Take the time you have to just sit together and be in the moment. What things do you love about him today that you may not have seen or known in the beginning? The most common thing the non-HD spouses told her during the workshop was the grace and courage that a spouse was handling the progress the loved one was handling the disease without complaining or doing the "Whoa is me" mantra.
She also gave ways to be intimate without having sex. This is a big one because there will come a time when your spouse can no longer be sexually intimate and you have to find a way to keep that love and intimacy alive. There are some great ways to show intimacy that go far beyond what happens in the bedroom:
In this workshop, she takes everybody through the various stages of the disease and how they affect the relationship. All of the changes to the relationship at each stage. Not just when it comes to having a sexual relationship with your spouse, but all of the different areas of the relationship from raising the kids to handling the finances and cleaning the house. The reality of this disease is that it will affect all aspects of your life together.
Intimacy is about more than just the sex part of the relationship. It is about loving a person for their mind, body and soul even when the physical aspects may not be present. So, how do you do that?
Ms. Pausig has some advice. First, remember what it is that you fell in love with and why you still love him today. Even in the late stages. Learn to just "be" with your spouse. Take the time you have to just sit together and be in the moment. What things do you love about him today that you may not have seen or known in the beginning? The most common thing the non-HD spouses told her during the workshop was the grace and courage that a spouse was handling the progress the loved one was handling the disease without complaining or doing the "Whoa is me" mantra.
She also gave ways to be intimate without having sex. This is a big one because there will come a time when your spouse can no longer be sexually intimate and you have to find a way to keep that love and intimacy alive. There are some great ways to show intimacy that go far beyond what happens in the bedroom:
Kiss your spouse on the forehead or cheek.
Say "I love you" and wait for the response - even if it takes some time and is hard to understand.
Hold hands while watching a movie
Look into his eyes while feeding him and helping him drink
Lean up against her while sitting together on the couch
Stroke his cheek with your finger
Rest your head on her shoulder
Run your fingers through his hair
These are great options for anybody to show intimacy and communicate your love for your spouse, even if he or she is not in the later stages of Huntington's Disease or any other disease that might affect the intimate side of your relationship.
Being intimate is an very important part of the marriage relationship. Many studies have shown that once that piece of the relationship is gone, the rest of the marriage falters. Sharing intimacy on any level with your spouse can help strengthen you both and face the many obstacles that you will face as you progress down the road that is Huntington's Disease.
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