I gave a talk on being a caregiver at TEDx Ubud on May 28, 2016 . The talk is now on You Tube and you can see it here:
My caregiver days for my husband have been over for two years but the effects of those fourteen years of caring for him will be with me forever. Caregiving is a lonely business with families and friends often easing into the background, leaving the primary caregiver on their own. People with Alzheimer’s have a completely different operating system than we do. Family and friends may be uncomfortable being with a person living in Alz World, it may trigger their own fears about their later years, or they may feel that it’s too big a responsibility to step in and give respite to the primary caregiver.
Dealing with dementia on a day to day basis is exhausting no matter how loving you are to the person with it. Encourage the people around you to come, even for an hour or two. Encourage them to enter Alz World to communicate with the person and have fun with it. Tell them to redirect the person’s attention if they stray into uncomfortable territory. You need the break for your very own health and sanity.
Try to start this support system early on in the disease to ease your friends and family into Alz World. That way it won't seem so foreign.
If you know a caregiver, volunteer to give them a break. It's one of the best gifts you can give.