Caregiving, especially for individuals diagnosed with memory loss or Alzheimer’s, is hard work especially when the loved one receiving care no longer recognizes the caregiver. Many caregivers feel better if they maintain tight control over the caregiving situation — meaning controlling their loved ones’ physical behaviors and actions. In this type of caregiving situation tight control is the opposite of what’s needed.
While visiting with a wife caregiving for her husband, she repeatedly told her husband to sit down, when all he wanted to do was walk circles around the living room and kitchen. She felt it important to regulate everything her husband ate. Including not allowing him to have foods he would actually eat like cookies and ice cream, yet she wondered why he was losing weight. She wanted her husband to read books that he could no longer mentally follow, because previously he read all the time.
In these caregiving situations, control relates more to the wish of a spouse to not lose the person they married. Even though by this time, the person may be physically present but mentally there is little recognition. Wanting to maintain control in caregiving situations where memory loss exists is more about the caregiver spouse grieving the loss of a loved one than the needs of the spouse requiring care. Many times we forget that caregiving is about the person for whom we’re providing care. Caregiving is not and should not be about the caregiver, although boundaries do need to be set about the type of care we are able and willing to provide.
This is where caregiving education is important. Many caregivers care for a loved one with memory loss or Alzheimer’s disease and never become educated or attend a support group. Their actions toward their loved one may be seen by educated outsiders as abusive because the caregiver really doesn’t understand that their actions are resulting in behaviors that are more extreme like anxiety, pacing, crying, wringing of hands and other disturbances.
The Caring Generation provides education for caregivers so that relationships, rather than being burdensome or filled with guilt, remind us that life is precious and time on earth short. There are also many organizations, like The Care Navigator, that provide care coordination and support to caregiving families on a local basis.