Grief and Loss in Alzheimer's Disease January 5, 2014

After spending holiday times with older relatives they see seldom, family members sometimes comment on the difference in their relatives, personality changes, behavior changes usually involving a loss of inhibition. Adult children are often somewhat upset and do not know the cause of the change in their older relatives--whether their mother is visiting the casinos frequently losing money or their father is making unecessary body noises in public or telling risque jokes he never would have before.

Quite often they put the blame on the second marriage spouse--they fear the influence of the newer person in their parent's life has changed their parent in some detrimental way.

The spouses and the adult children who live nearby are unaware or in denial of the changes which happen slowly; the changes are so much more apparent to folks who don't see each other often.

The diagnosis often comes two to three years later.DEMENTIA or MODERATE ALZHEIMER'S DISEASE. By this time the caring partner is already feeling the loss of a partner and has taken over the running of the couple's life--or the nearby adult child has.

When the healthy spouse or the nearby adult child  then inform the out of town relatives, their perceptions of their parent's partner don't change, but they, too, feel the loss of their one remaining parent very deeply and react with  one of two basic fear responses- fight or flight.The most basic response to fear is either to fight the idea-"Let's get another opinion." "Its your fault. You made my parent sick."  or flee "My parent is no longer there for me, I might as well forget about him/her."

It is so hard to realize we can no longer ask the person diagnosed with dementia or Alzheimer's disease for advice, we cannot share with him/her our memories of childhood or a good meal we shared at New Year's Eve in the past.

My spouse and I had annual season tickets to the NY Philharmonic Orchestra. This week PBS broadcasted a Live from LIncoln Center performance of the orchestra's opening gala last September. I saw that the musicians did not wear only black as they did when we attended; the women wore colorful gowns, some of the men wore colorful bow ties with their tuxes! How I wish I could share that fun information with my husband. The feelings of loss are constant, large or small daily reminders of the good life we had which is now so limited. 

We grieve, we mourn the losses, but we still can smile and know we are doing our best to see that he is well cared for, he recognizes us and looks forward to visits most days-when he is not napping or visiting in someone else's room.