People with dementia often cannot articulate their feelings; they may have aphasia, which makes it difficult for them to form sentences. When something is frustrating, disturbing, or scary, they may have no other way of expressing their feelings than with agitation. As caregivers and family members we have a lot more control than most of us realize over these situations and our interactions with our care partners. In my experience, most of these problems come from the language we use, what we do and how we act, as caregivers.
Empathy. Your care partner needs reassurance from you in various ways that she’s safe, loved, and respected. When she does something that feels odd to you or she repeats the same question over and over again, she needs for you to remember that she has a brain disease (Alzheimer’s or another dementia,) and cannot help herself. I hear people suggest that their loved ones are “doing it on purpose to annoy me” – trust me! They are not! They doesn’t choose to forget or to be confused. It’s a disease. If you give her a chance, she’ll do her best.
Take a deep breath and go with the flow.
Patience. If your care partner is anxious or agitated, she may be confused or feel under pressure. I've learned to "lend" myself to my care partner's pace, which means she needs more time to do anything and everything, whether it’s eating, changing clothes, or using the bathroom.
For instance, I’ll routinely make sure to have a bathroom visit before taking my care partner for a drive and of course we have to stop and chat with everyone we pass to let them know why we’re wearing coats and where we are going. Inevitably she’ll want to use the bathroom again in the last minute. I have become accustomed to allowing at least an hour extra for any drive, outing, or appointment. There’s no such thing as a quick trip to the corner store. Everything is a major event and I choose to make it as positive as possible.
Eye contact. Make sure you always make eye contact before you say or do anything. You can usually tell that she’s with you and chances are good that she will hear you. This is especially important when you need to mover her chair or wheelchair; straighten out blankets, pillows or bedding; putting on or removing a piece of clothing or shoes; buttoning something the person is wearing; or performing a grooming action, such as combing hair or wiping hands. Always talk through your actions so she’s not startled.
Warn her: If you are about to do something that may disturb her, briefly tell her what you’re about to do. First you want to make sure to get her full attention. If she’s asleep, you want to avoid startling her. You can stroke or pat her lower arm or hand and say, “Sorry to wake you-“ Then calmly tell her step by step what you need to do.