Dear Annie: My dear mother-in-law has suffered with dementia for 10 years. This wonderful, loving woman did not receive the care she could have, and as a result, her quality of life is worse than it needed to be. I have some advice for family members when a loved one receives the dreaded diagnosis of dementia or Alzheimer's:
You need to learn about the illness, and you need to make a plan. Pretending the person is not sick doesn't help. It makes life harder for them. I never realized how powerful a force denial could be until I witnessed my father-in-law's absolute refusal to change anything about their life. Expecting her to keep cooking, leaving her alone, etc., were truly acts of cruelty.
Realize that your loved one is not going to get better. He or she may stay the same for a long time, or may steadily get worse, but they are not going to improve.
You need to keep them safe and anticipate that they may do things they have never done before - like wander, take the wrong medicine or let a stranger into the house.
If you live out of town, consider the possibility that those who live near your loved one may know more about the day-to-day situation than you do. When you visit and keep Mom company all day and do fun activities with her, yes, she's going to seem better, but it doesn't reflect the reality of her normal day when she's alone for hours at a time. If the locals say Mom needs more care, they may be right.
Get help. Join a support group or contact your council on aging. We hired a wonderful dementia coach who helps families figure out what to do. It is possible for the sick person to enjoy the things that they are able to do if they are given support.
Consider that the person's spouse might not be the best caregiver. Observe what is really happening in the household. You may need to hire helpers. In day care, assisted living or other facilities, there is trained staff, always rested and fresh.
Try to avoid isolation, for the sick person as well as the caregiver. Don't turn down offers of help. I called some of my mother-in-law's friends to ask whether they would come over and learned that they had been turned away by my father-in-law.
Someday I hope there is a cure for this horrible illness, but until then we have to do the best we can to manage life for those who are dependent on us.
- The In-Law
Dear In-Law: Thank you for taking the time to write and guide others who are in a similar situation. We hope anyone affected by this dreadful disease will contact the Alzheimer's Association at alz.org. Their website has a wealth of information for dementia and Alzheimer's. There is also a 24/7 Helpline at 800-272-3900.