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Carol Bradley Bursack, Published September 11 2011

Bursack: New woes compound Alzheimer’s problems

Dear Carol: My mom was recently diagnosed with ALS (Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease). She also has mid-to late-stage Alzheimer’s disease. Mom saw several doctors, but it took a long time to diagnose her ALS. Meanwhile, she’s lost most of her muscle control and can scarcely communicate. I know there are devices and medical interventions to help people with ALS, but because of her dementia, it’s hard to convince her of the need to have treatment or use helpful devices. She doesn’t really understand what’s going on. Maybe it will be a blessing in the end if her mind is not totally clear. The doctor says she only has a couple of months to live, but I get scared when I think about her life ending this way. – Sam

Dear Sam: I’ve witnessed ALS, and it’s a frightening disease for anyone to have. We find comfort where we can, and you do see some comfort in the fact that her Alzheimer’s disease will likely prevent her from projecting into her future. However, you are also right in seeing that she may not be able to understand helpful interventions that would be used for most ALS patients.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Patients in the later stages of the disease may become totally paralyzed.

You can get some specific advice from the ALS Association (www.alsa.org). I would strongly suggest that you contact the Alzheimer’s Association in your community (or www.alz.org), as well. When you find a contact person at each organization, explain your unique situation.

A serious secondary condition that involves physical intervention can be very distressing when a person has dementia, since any person who can’t understand that a physical device or a medical procedure is meant to increase their comfort will generally fight it off. This is true for people with AD and diabetes, AD and cancer, or nearly any other health problem needing uncomfortable interventions.

Please talk to your mom’s doctor about hospice care. She qualifies. Hospice staff can help your mom with the distressing loss of control. People with ALS will likely experience paralysis of their lungs – one of the most frightening things anyone can go through. Hospice care will help your mom live the best quality of life she can have. Also, hospice chaplains can help you cope as you go through this with your mom. My condolences to you both.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carol@mindingourelders.com.