A friend’s dad was recently diagnosed with ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s disease, a usually rapidly progressive neurological deterioration of the body. It can present in many different ways but unfortunately for him, it started with difficulty in swallowing and speech. Usually this is the last step and patients and families have time to adjust and decide on feeding tubes. Because he is physically feeling fine except for the speech, he does not feel he needs the feeding tube. He is adamantly opposed to the feeding tube and his family is not comfortable with this decision because he is otherwise healthy.
The most devastating aspect of this disease is that while the body is failing, the mind is intact. Even as the body slowly gets weaker until the person becomes paralyzed, the mind can still think. And if the speech is affected, the person cannot express his thoughts adequately. This causes frustration and anxiety and may cause the person to become mean and agitated.
My friend is having a hard time coming to terms with this disease. But the worst part for her is having to be the go-between for her family. She is suffering stress-related anxiety, not just in helping him physically but also mentally. We have joked about taking Ativan and Xanax, and doing meditation and yoga, but in truth, coping strategies are sorely needed.
As expected, he is in some denial. Her mother wants her to talk to him about getting his affairs in order, which is an important consideration for everyone, but especially for those whose life expectancy is short. She has already spoken to him about Hospice but it is unclear whether he comprehends the situation. The family knows he only wants comfort care, but each member of the family seems to have a different idea of comfort. He enjoys going out, especially to the auctions. We’ve met him and his wife at the auctions numerous times and always conspire not to outbid each other. He has collected so many odds and ends that he has several storage tents on his property. (I’ve told my friend that he would be happiest if he died not at home, but at the auction.) He likes to be helpful and hates being helpless. He still remembers coming with me to buy a used van. A young (and petite) female always needs a man to lend her some credibility and avoid being hustled. He is very generous, always offering food from his garden or his cellars. Already, my friend misses him.
It is a frustrating situation as anyone who has ever had a loved one suffering a terminal disease will know. Because there is no cure and not many options for treatment, there are few places to turn for help. My friend has contact names for the ALS Society but I don’t know how helpful they will be.