Raising a child with autism spectrum disorder (ASD) and caring for a parent with end-stage Alzheimer’s disease are obviously very different experiences. But for the caregiver, there’s a lot of common ground, too.
The fact is, taking care of someone who suffers from cognitive problems -- rather than physical ones -- requires different expectations and a special set of caregiving skills. So whether it’s autism, Down syndrome, dementia, or a brain injury, what makes caring for a person with cognitive problems distinct? And as a caregiver, what do you need to know? Here are some answers.
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Seeing a family member become sick and physically disabled is terribly difficult. But being with a loved one who is in good physical health but has serious cognitive problems is devastating in its own particular way.
When your mom with Alzheimer’s disease sits across from you at the table, she might look perfectly normal – the same as she always did. But she isn’t the same anymore. The gulf between the appearance and the reality can be difficult to handle, and it’s something that caregivers are faced with daily.
It can also be difficult to get sympathy or understanding from friends or family members for what you’re going through as a caregiver. There may be no outward sign of your loved one’s illness -- no wheelchair or crutches or oxygen tank to help them understand. After talking to him for a few minutes, your neighbors might think your dad with dementia seems as sharp and funny as ever. Your friends may say that your son with autism or daughter with Down syndrome seems like any other kid.
You know differently. You know the backbreaking effort that goes into caregiving, and you know the pain of having a loved one suffering from a cognitive problem. Not getting that recognition and validation can make caregiving especially difficult and lonely.
Cognitive Problems and Caregiving: Specific Issues
There are several other issues that caregivers of people with cognitive problems need to cope with.
Memory problems.Alzheimer’s disease, Parkinson’s disease, strokes, brain injuries, and other conditions that cause dementia can devastate a person’s memories. Conditions such as multiple sclerosis can also cause memory problems, although they may be subtler.
For a caregiver, memory problems can be incredibly frustrating. You can no longer rely on the person for basic information – when she last took her medications, or saw a doctor, or had a shower. With severe dementia, the memory loss becomes so extensive that a person can no longer care for herself.