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.
Cognitive Problems: Appearance and Reality
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.
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.
Communication problems. If you’re a caregiver, communication with your loved one is crucial – it’s the only way to know if you’re giving him what he needs. But with conditions that cause cognitive problems, even basic communication may be difficult or impossible.
Children with ASD often have very delayed speech and some have lifelong difficulty communicating. As MS and Parkinson’s disease progress, they can also diminish a person’s ability to talk. A parent with dementia may be able to speak clearly, but what she says may no longer make much sense.
Caregivers are often forced to guess about what their loved ones with cognitive problems want. That can leave them constantly worried that they’re missing something -- that their loved ones are trying to tell them something that they can’t understand.
Behavior problems. Though behavior problems vary according to the condition and age of the person you’re caring for, people with cognitive disorders may have trouble self-regulating their behavior. Emotional outbursts are common with many cognitive problems. At its worst, a person’s behavior can become violent and dangerous, either to you or to himself.
Cognitive Problems: Tips for Caregivers
So what are some things you can do to improve your loved one’s care – and make things easier for yourself?
- Learn about the cause – and how to care for it. Read up on your loved one’s condition and specific caregiving strategies for it. Don’t just rely on instinct. The best caregiving approach will vary. Caring for a father with dementia will be very different from caring for a sister with cancer or a child with Down syndrome.
- Create a calm environment. A person with cognitive problems can be easily overwhelmed. So do your best to create a place where she feels safe and comfortable. When your loved one is trying to concentrate on something, limit other distractions like television.
- Keep things organized. This can make a big difference for your loved one with cognitive problems. A person with autism may find disorder to be stressful and overwhelming. A parent with dementia might have trouble finding things or quickly lose track of what he’s doing. Keep things uncluttered, with the essentials easy to find. Label drawers and cabinets, so your loved one knows at a glance what’s inside.
- Adopt a schedule. People with cognitive problems can really benefit from a routine – it gives them something to rely on in a world that might seem confusing and chaotic.
- Be open-minded. When you’re caring for a loved one with a cognitive problem, you might have to mix up your approach from time to time. Your loved one will change -- either as he grows or the disease advances – and some solutions may stop working. Don’t be too rigid to give up a tactic that’s not helping anymore.
- Keep it simple. If communicating is difficult, try to keep your language basic. Don’t subject your loved one to a barrage of questions. Ask one at a time and wait for an answer. You can also break down more complex requests into single steps.
- Remember that it’s the disease, not the person. Your loved one’s behavior is sure to frustrate, enrage, and hurt you sometimes. That’s natural. But try not to blame him for the changes the disease has caused in him.
Avoid Caregiver Burnout: Take Care of Yourself
Although it’s often the last thing on a caregiver’s mind, it’s important to focus on yourself, too. Remember that your physical and mental health are crucial to the well-being of both yourself and your loved one. If you push yourself too hard and burn out or get sick, who will take care of your loved one? Here are some tips:
- Get assistance. If you’re new at caregiving, don’t wait until you’re overwhelmed to ask for help. Talk to relatives, friends, and neighbors to see what they can offer. Find out what’s available from local resources, including your doctor and geriatric clinics in your area. Remember: You can’t do this on your own.
- Get support. You don’t only need support for your loved one with cognitive problems – you need it for yourself. So lean on your family and friends. Consider joining a local support group for caregivers. If you’re overwhelmed, call a hotline or consider scheduling an appointment with a therapist.
- Take breaks. Pace yourself. Try to take small breaks – even just a few minutes to yourself – every day. Then build longer periods of time away each week. Just going out with a friend for a walk or a bite to eat could give your mood a big boost.
- Forgive yourself. No matter how good and compassionate a caregiver you are, things won’t go smoothly all the time. You’re going to get angry and frustrated with your loved one. You’ll make mistakes and feel guilty. It’s inevitable, so when it happens, don’t beat yourself up. If you’re feeling down, remember that caregiving is always a tough and messy business. Your loved one may not be able to tell you, but you’re a good and courageous person for taking it on.