What is the best single thing you can say or do for a caregiver taking care of someone with dementia or mental illness?

Two things come to mind. The first is to recognize that you are going through a process called anticipatory grief. Let me explain. One of the most difficult skills that a caregiver learns with caring for a loved one with dementia, is the recognition that the relationship you had with that person has changed. I am expecting that you are talking about a specific family member, but if not, the same is also true. The person has his or her own unique human dignity that needs to be nourished and respected. On the other hand, the roles change, a son or daughter, as caregivers for one or two parents, discover the expectations and communications you had earlier are no longer useful. While there are two adults in the room, one of these can no longer respond the way you might expect them to. Thus, the caregiver may become frustrated or ever angry. What is lost is the adult relationship, adult to adult. Not to diminish the respect due to the one with dementia, but the communication has changed. A dear friend of mine would talk about how he could no longer share all the stories and human interest he had with his mother, because of her severe dementia due to cardiac arteriosclerosis disease. He at one time cherished these human-interest stories, and now could no longer experience them with his mother.
 
I remember my mother, who had experienced many mini strokes that caused increased dementia, coming to the screen door and wanting to go to the market. Her caregiver was concerned and trying to convince my mother to go back inside. I was out in the garage and saw her at the back door. “ What’s up Mom?” She wanted to go to the outdoor market. Now the market had been closed for many years, but we would go there when I was young. “OK Mom, Let’s go.” I took her to the car, and she sat in the back seat. I then told her; I would be back in a few minutes as I had to get the car keys. I deliberately waited an extra few minutes and the then came to the car, opened the back door, and said “Mom, Eli (my sister) already went and we don’t have to go.” I then helped her out of the car and back into the house. The point is that you don’t argue with a person with dementia. I went along with it, and she was OK. Now there are many different levels of dementia, and each is different. Set simple rules and boundaries. Speak gently so as not to arouse fears or resistance.
 
The second point which I feel is part of the first and maybe more important is building skills of self-care yourself. All caregivers experience compassion fatigue because they care. Building compassion resilience, according to Eric Grundy, demands a willingness to follow these three simple rules. The first is to admit, “Houston we have a problem.” None of us are gods, as we acknowledge our work is sacred. We have boundaries and limitations. Recognizing that you are at your wit’s ends is not admitting you are a failure, but rather that you need help and that your feelings are appropriate. The second skill is to share your story with someone who will listen. Not to give advice, but to listen. Sharing your story is healing and allows you hear for yourself and develop some compassion for yourself. The third skill is to develop a self-care practice. Something simple, like a boy’s or girl’s night out, walking your dog, hiking or taking that fishing trip, asking others for help, taking that long-deserved vacation. Developing a spiritual practice of journaling, reflection, meditation, of waking, swimming, or going to the gym.
 
In summary, the relationship you have with the one you love has changed and you are experiencing compassion fatigue. Learn the skills of self-care. This is the most important think you can do as a caregiver taking care of one with dementia.
Thank you for listening.
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