ALS: Staying Together When Your Spouse Has A Chronic Disease

When one spouse develops a chronic disease, it’s almost as if a third party has entered the marriage. Serious illness changes the couple’s normal dynamic. Both spouses have to reorganize around this uninvited guest who forces them to change the way they work, run the household, have sex, spend their free time, and communicate.

ALS (amyotrophic lateral sclerosis) is one such guest. A progressive neurodegenerative disease, ALS affects nerve cells in the brain and spinal cord. As the neurons in the brain die, the brain loses the ability to control muscle movements. When this happens, people have difficulty speaking, moving, eating, and breathing. In the late state of the disease, ALS sufferers may be totally paralyzed.

Who gets ALS?

Some statistics, according to the ALS Association:

  • A little more than 6000 people in the US are diagnosed with the disease each year.
  • It’s estimated that 20,000 people in the US have the disease at any given time.
  • 60% of people with ALS are men; 93% are Caucasian.
  • Most people who develop the condition are between the ages of 40 and 70; the average age of diagnosis is 55.
  • Veterans, especially those deployed during Gulf War, are twice as likely to get ALS.
  • Half of people diagnosed live three or more years after diagnosis; 20% live five or more years, and 10% live more than 10 years.
  • Two of the most famous people with ALS were baseball legend Lou Gehrig – the condition is often referred to as Lou Gehrig’s disease — and physicist Stephen Hawking.

Is there treatment for ALS?

There is no cure for ALS but there is currently one FDA-approved drug, Riluzole, that slows the progression of the disease for some people. Couples challenged by ALS may experience a better quality of life by attending support groups and recognized ALS Treatment Centers.

How ALS can affects marriage

  • Physical challenges. ALS takes a physical toll on the caregiver, who may be faced with the following tasks: feeding, help with toileting, lifting, and taking on all household chores. The physical stress and fatigue may result in medical issues for the caregiver (muscle injuries, headaches, stress-related somatic complaints).
  • Psychological challenges. Both people grieve for what was: specifically,  ALS spouses mourn the loss of their former capabilities; non ALS-spouses mourn the loss of their former role and expectations, and both people grieve the loss of their previous relationship. Stress and unprocessed grief can cause both to experience depression and anxiety.
  • Sex.  ALS affects the nerves and muscles used to have and enjoy sex. The change in mobility and sexual response may decrease the ALS sufferer’s desire to have sex, which then leads to diminished sexual intimacy between the couple. If the spouse with ALS loses the ability to speak, discussing sex can be difficult and both people may misunderstand each other. Although sex is no longer the same, it doesn’t have to stop. Sex changes for all couples as they age, and the ones who continue to enjoy physical intimacy explore new ways to experience sex: a change in sexual roles, sexual positions, and erotic acts.

How To Cope

  • Accept what you can’t control. Your house is not going to be as organized. Sex will be different. Socializing will be more challenging. You won’t be able to engage in some of the activities you once enjoyed together, i.e. athletic activities. It’s normal to be sad or resentful because of these changes, but if you allow negative feelings to predominate, you will have a hard time moving on and dealing with reality.
  • Focus on what you can control. If you can afford it, get a housekeeper to come in to help clean, cook meals, or run errands. If money’s an issue, ask friends to help (your good friends want you to tell them how they can help). Explore your new sexuality; yes, it’s different, but experiencing this transition together will offer a new kind of intimacy.
  • Attend all doctor visits together. If your marriage is going to survive, you need to be a team in managing ALS treatment. Attend all doctor and hospital visits together. The ALS spouse needs support and the non-ALS spouse needs to ask questions and be kept in the loop.
  • Self-care. If you’re the non-ALS spouse, it’s easy to focus so much on your partner’s illness that you neglect your own physical and emotional well-being. Your health is important too! Get regular medical and dental check-ups. Exercise. Eat well. If you find you can’t shake depression and anxiety, see a psychiatrist for medication.
  • Get support. Living with a chronic disease is isolating. Stay connected to others by attending ALS support groups; this goes for the non-ALS spouse as well. If your marriage is suffering, see a therapist.
  • Explore your legal options. Mounting health care costs can add worries about the well spouse being left impoverished or children being left without resources. Becoming eligible for Medicaid assistance might help alleviate some of these concerns, but Medicaid eligibility is based on strict criteria that many married couples are not able to meet. In some cases, even happily married spouses consider divorce as a possible tool to help manage the financial burden of a serious health crisis. Learn about the option of Medicaid divorce.

Life is unpredictable, but change is inevitable. People who live fulfilling lives are not necessarily the “lucky” ones; they’re the ones who have made the best out of circumstances beyond their control. You didn’t choose to invite this disease into your marriage, but you can choose to manage the way you and your spouse face this challenge.

This is a difficult time and you deserve support. If you would like to speak to an attorneys about your options for securing your family’s future, please call us at 888-888-0919 or email us to schedule a free and completely initial consultation.

Read More:

Medicaid Divorce as a Health Crisis Planning Tool

 The Medicaid Divorce: How Splitting Up (On Paper) May Protect Your Partnership