The awareness that a family member with Alzheimer’s needs some assistance usually develops gradually. As long as mild memory loss is the main challenge, we can practice some of the common sense memory aids that have been passed along among caregivers. Examples include: post-it notes, lists on the refrigerator, postings inside the closet about what to wear, etc. These are helpful provided the receiver is aware of the problems he faces and is receptive to gentle reminders. But this type of “rescue” will not last forever, and it is important to work on a framework for longer-term care planning with increments of the plan fleshed out over time. Ideally the framework for care should be determined while the loved one can participate in its development and can express his wishes about future decisions. Knowing the disease is progressive is threatening, but including the loved one in planning can work toward enhanced peace of mind for everyone.The elements of care planning are suggested here. I will discuss some of them in more detail in future articles.
1. Communicate as a family about what is going on. Be extremely sensitive to the feelings of the “patient” and the probable primary caregiver.
The tone of the conversation can be set by discussing values and how these values matter in how to face the years ahead. For example, the issue of independence is huge when dealing with the type of care to plan for. Is it important at first to use resources for assistance in the home rather than moving parents or one of them to assisted living? What does the afflicted loved one and the probable caregiver value in regard to continued medical treatment when quality of life is significantly diminished or non existent? How important is it to be near adult children as needs for help become more complex? Family planning may not be practical in every situation. Friction and rivalry may be too intense. However, sometimes a neutral facilitator can help with the discussion, and with planning. A facilitator can help identify ways all family members can be involved in assistance with what will most likely be a long journey. These heavy subjects cannot be handled in one or two settings, but do need to take place before a catastrophic event occurs. They must be considered in an atmosphere of trust, respect, and as little threat as possible.
2. Identify legal documents that will be needed to take care of the affairs of a family member who can no longer handle them.
These include such things as wills, health care proxy, living will (or advanced directives), and durable power of attorney. The discussion and preparation of these documents are stressful and time consuming. But trust me, having them is a lifesaver for a caregiver or other family member who is already struggling with weariness, grief, innumerable losses, and even isolation.
3. Evaluate financial capacity and wishes for longer term care.
The options include in-home care, continuing-care retirement communities, assisted living facilities with memory units, and total care health centers.
4. Assess community agencies and other less formal sources of help.
The Alzheimer’s Association (www.alz.org) and the area Agency on Aging (www.n4a.org) are primary sources. I will share others as well as breakthroughs in research and medical advances in the “Help and Hope” category of this website. Doug’s page on ElderCare at this website is also an excellent resource.
5. Map a plan suitable to the level of need and adjust it as needed along the way.
The disease is progressive, and the needs of everyone involved can change dramatically, even suddenly. Caregiving plans may need to be reassessed every 3-6 months.
In the face of all this heaviness, remember that although Alzheimer’s disease is not yet curable, it is treatable. Having a care plan is one of the pieces in a broader “treatment plan” for both the cared for and the caregiver(s).