Recently, I met with a couple in the their late 60s. The husband has been living with dementia for about seven years, and he is now living in an assisted living facility that specializes in memory care. The wife is living at home and still piecing together her own life. I was struck and saddened by the cruelty of this disease. Perhaps the wife still seems familiar to the man, but I am not sure he still knows her or even himself. Their marriage looks nothing like what we think of as a marriage. The partners sleep in separate beds, in separate areas of town. She handles all of their finances, house maintenance, and family matters; he spends his days walking the halls of the assisted living community.
When I first met this man, he was a tall, strong man; within two years, he has lost about 60 pounds and has a stooped posture. His appetite is good, he sleeps regularly, and his moods are stable--this is about the best we can hope for. In reality, his situation is as good as it gets. The aids at his assisted living facility know him and keep him clean and well-groomed. The psychiatrist's nurse practitioner is able to see him there and manage his medications, keeping his mood stable and is agitation abated. So, this is what the disease gives us, a new set of expectations for a good life, a new reality.
Sometimes I feel there is nothing I can say to the wife. How can I address the magnitude of this kind of grief and long-term stress? I try to accompany her along this journey, validating her feelings, encouraging her to take care of herself, and troubleshooting issues that arise. I am glad they have money to pay for his care and enough left over for her to go see her family and take trips. She has so much life ahead of her, and it seemed as if he would be with her along the way. This disease stole those dreams, and I often find myself dumbstruck by that kind of cruelty. My heart ached for them, and I feared ever having to face the shadow this disease could create of someone I love.