What it's Really Like July 21, 2014

A woman wrote to me this week stating "Only someone who has lived with this disease knows what it is really like."

True enough, but those who are experiencing Alzheimer's disease in a loved one are surprised and disturbed by it every day. It is not "really like" anything else because it is not predictable, one cannot plan for the future. A new arrival at our support group tried to assess the time line of the other participants. "When did your spouse stop asking the same questions repeatedly? "When did he/she stop being able to order from a menu? recognize the food he was eating? Use the bathroom appropriately? stop hiding things all over the house? 

He was so upset that his wife of 47 years no longer knows who he is and asks who the man is that "just walked in?" He is her son.

There was lively discussion around the table. Each participant could identify not only with the behavioral changes of the afflicted person, but with the spouse's confusion and frustration.Everyone smiled indulgently, knowing that the denial was still present in this husband who was trying so hard not to lose his wife.

Not that he was afraid she was going to die, but that the relationship between them, the balance they had achieved with each other, the trust that neither one would do something that would jeopardize the family was in peril. Really it has long been gone, but he is only now beginning to realize the toll taking care of her is having on him, physically and emotionally and only now, five years after the diagnosis was he willing to reach out to a support group.

Another strong issue occurs when the person with Alzheimer's disease is no longer safe at home, cannot be left alone, does not recognize his or her surroundings. Family members feel so strongly that it is their responsibility to care for family members, they do not make adequate financial plans for this possibility. Emotionally family members cannot leave the person in the facility without remaining there themselves a great part of each day. They fear leaving their parent or spouse in the hands of "strangers." What if they don't do what the loved one wants? They feel responsible--and in so doing they actually delay the adjustment they so need to reduce their stress.

No, there is "nothing like" Alzheimer's disease but the comradery that support groups can offer each other helps us cope and begin to establish an individual identity for ourselves once again.