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Maintaining Personal Relationships Through an ALS Journey

February 13, 2013

The impact of an ALS diagnosis has a rippling effect:  Everything changes, and this often affects familial roles and relationships.  Effort contributed toward adapting to and cultivating new personal and intimate relationships can result in stronger, expanded or renewed emotional connections involving the person diagnosed with ALS, their loved ones, and the relationships they hold dear. 

The physical and financial changes brought about by ALS impacts the familiar roles that families and couples have come to know.  For family members, expanding the scope of responsibilities may yield frustration, and spouses whose shared dreams require adjustment may become resentful.  The individual receiving the diagnosis might experience all the above emotions and be angry that they are faced with challenges associated with a progressive loss of motor control.

As the search for a cure continues, technology and equipment address the mobility, nutrition, respiratory and communication challenges common in ALS.  While these aids assist with tangible quality of life issues, much personal effort is required to cultivate and maintain personal relationships throughout an ALS journey.

The initial response to a diagnosis of Lou Gehrig’s Disease typically focuses everyone’s thoughts on dealing with numerous new and time-sensitive issues. Little time is left for strategic planning or maintaining the balance experienced in life before the diagnosis.  To maintain their relationships, spouses and other family members can acknowledge the value of familiar roles and activities prior to an ALS diagnosis but recognize the need to adjust activities and responsibilities associated with those roles as circumstances unfold.  

Family members now providing personal care to a spouse, parent, adult child or sibling may find themselves in “new territory.”  Likewise, independent adults, now dependent on receiving personal care from a family member, are typically thrust into a new role—that of unprepared recipient. Experts agree that communication is key to acknowledging the basis for changing roles and for adapting activities that allow caregivers and those with the disease to maintain strong relationships.

Merida Polak, R.N., BSN, Emory ALS Clinic Team Research Manager, reminds couples that in ALS, emotional intimacy is something that is not taken away from you, unless you let it go.  Acknowledge the fact that roles, activities and responsibilities will change as ALS progresses, while at the same time recognize the need to actively invest the time and effort to cultivate the evolving emotional, intimate relationship.

Palliative care experts associated with The ALS Association Certified Centers of Excellence remind couples that a disability itself does not change the essence of the emotional thoughts and feelings between partners.  Sharing is an essential aspect of intimacy, so communicate, verbally, in writing, via text message, or even via the wink of an eye. Recognize common obstacles, such as of fatigue on the part of the caregiver or care recipient along with lack of privacy or mobility issues.  Take advantage of the opportunity to try something new and adapt your intimate activities to your current needs, desires and abilities.  Meanwhile, don’t forget to continue those activities that you have enjoyed as a couple.  If you enjoyed Saturday night date night, have dinner delivered and serve it with candle-light or music. Hold hands, cuddle or kiss during your favorite date night movie.”

Although your personal and intimate relations remain private, sharing the challenges related to fatigue, frustration or new circumstances with a member of your ALS care team, social worker, support group members, or trusted advisor may open the door to potential valuable ideas or options.  Physical circumstances may have indeed “changed”; however, you may now be in a position to maximize your assets and efforts toward growing your relationship in a newly satisfying manner.

If you need additional information about how ALS can affect familial relationships, contact any member of your ALS clinic team. People with ALS and their families not working with an ALS multidisciplinary clinic can contact the Care Services Coordinator at our chapter. Local palliative care organizations should also be able to provide additional information and resources related to cultivating personal or intimate relationships during an ALS journey.




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