As the caregiver, son, daughter, spouse, friend, or relative of a loved one with Alzheimer’s disease, there are many difficult decisions to be made. In the best of situations close relatives or perhaps the entire family have gathered to discuss the probability of upcoming choices. The loved one, the victim of the disease, is also present, expressing his or her wishes should s/he become incapacitated and unable to make life decisions. When everything is out in the open ahead of the rough venture down the Alzheimer’s trail, less stress and strain on the family is most likely to occur. Finances have been covered, health concerns made clear, and final wishes revealed. It is still not easy or simple, but knowledge and understanding are powerful tools.
If Dad requests no assisted living, Mom demands a move into long-term care, and Granny desires no heroic measures to extend her life, family members are better ready to comply when they know in advance. Even though some of these wishes may be difficult to grant later on, such as when Dad, a big burly man, has run off 37 caregivers, is angry and belligerent and in-home care has become impossible and other accommodations have been made, a communicating family helps ease the way.
Alzheimer’s choices are never black and white. As with any serious decision there are hundreds and thousands of shades of gray. The following are several possible situations/discussions that a spouse, caregiver, or adult children might have concerning the extended care of a victim:
• Let’s get a complete diagnosis from a qualified gerontologist/neurologist to rule out ____ and determine if ____. This is an important first step and is the best step if an appointment with a qualified doctor who listens and cares is scheduled, meticulous examinations are performed, careful diagnosis that rules out infection, illness, or stroke as causes of mental decline is provided, and when a plan of action for medication, care, and overall support for the victim is implemented.
• Let’s put Mom in Golden Acres. She is definitely not all right and it is wearing Dad out. I think if we pool our resources we can do this. This could be best step if an appointment with a qualified doctor who listens and cares is scheduled, meticulous examinations are performed, careful diagnosis that rules out infection, illness, or stroke as cause of mental decline is provided, and if Dad and Mom are a part of the conversation and they agree that this is the appropriate course of action. Now Mom may be at a point that she cannot communicate her wishes but what if, somewhere within the clouds of her mind she is aware, shouldn’t she know about decisions that will drastically alter her life?
• Let’s let Dad keep Mom at home like he has been. We need to all take turns coming to stay with them to relieve Dad and help with Mom. Dad could use some time off and maybe a vacation. We can do that. This could be best step if an appointment with a qualified doctor who listens and cares is scheduled, meticulous examinations are performed, careful diagnosis that rules out infection, illness, or stroke as cause of mental decline is provided, and the family rallies to help Mom and Dad with support and kindness. This can be very difficult when one child wants this and another wants that. Arguments rarely solve problems, they only make them worse. Also when the kids come to help they need to help, not criticize, complain, accuse, fight, interfere, or blame. They need to listen, learn, and offer support. Mom and Dad deserve this.
• Let’s move Mom and Dad closer to use so that we can keep an eye out for them and help more. This could be best step if an appointment with a qualified doctor who listens and cares is scheduled, meticulous examinations are performed, careful diagnosis that rules out infection, illness, or stroke as cause of mental decline is provided, and Dad and Mom are in the conversation. Moving can be nice, especially a downsize with less cleaning and upkeep. Moving can also be confusing, frightening, and horrible if parents are now more isolated and alone with old friends far away, children busy working, and familiar places gone.
• Let’s let Joey take care of it. He was always the favorite and he lives three doors down. He’s been checking on them for years anyway. This could be best step if an appointment with a qualified doctor who listens and cares is scheduled, meticulous examinations are performed, careful diagnosis that rules out infection, illness, or stroke as cause of mental decline is provided, and if Joey agrees to this additional responsibility and if the siblings concur that Joey has authority to make critical decisions. It is difficult enough to step in as caregiver for parents in this role-reversal scenario Joey should not also be forced to have every decision second-guessed.
• Let’s just wait and see. Maybe things aren’t as bad as they seem. This could be best step if an appointment with a qualified doctor who listens and cares is scheduled, meticulous examinations are performed, careful diagnosis that rules out infection, illness, illness, or stroke as cause of mental decline is provided, and if things really are fine. When children live close by they can check in and check up often; if however the children are scattered across the country or if there are no children at all, it could be exhausting, dangerous, and impossible for life to simply continue as if everything were “normal”.
The most important detail of each scenario is that family is communicating and trying to maintain the wishes of a loved one while also seeking solutions. Alzheimer’s disease is a wily critter with its long, tortuous descent over time. Families who talk and agree to disagree help assure that even after death, the remnants of family will remain alive.