In a beautiful book of poems called The Keeping Shelf, my friend, the late Muriel Blackwell explained where she got her title.  Her grandparents had made a special shelf in their house for grandchildren to use when they visited.  They placed their treasures on the shelf from which they could easily be retrieved, played with, and returned there for another day. Muriel explained that in her heart she had built a symbolic shelf for her treasured memories.  She turned them into a book of poetic treasures.  What a beautiful analogy for stored memories.

With a “memory keeping shelf” in mind, imagine the range of emotions an Alzheimer’s patient must feel when thoughts or memories cannot be retrieved.  The loved one reaches for a cherished experience, but it is elusive. She/he may hope for tomorrow, but can’t find a building block to start planning it.

In the early stages of Alzheimer’s disease, in many patients the most predictable reactions are anxiety and social withdrawal.  What is happening to me? I must not burden others with this problem.  What does the future hold?  In order to hide the possible onset of dementia, the person may begin to excuse himself/herself from: being with friends, going to church, or attending a family wedding.   

Our mother broke her arm, and because it was difficult for her to dress as she wished, she announced emphatically she wasn’t going to an upcoming wedding.  We offered ideas for helping her, but she could not be convinced. 

No behavioral response can be attributed to one isolated emotion.  Mother’s grief for her fading memory was inextricably blended with depression, anxiety about social expectations, fear about her changing identity, and the stress of not appearing “normal.”  So what does a family do in early stages when the memory shelf is there, but not dependably reachable? 

·         Stay tuned in to slight changes in a loved one’s moods, awareness level, and frustration with activities of daily living.

·         If the loved one has habitually dealt with problems openly, talk about the challenges and help her/him talk about their fears.

·         Reduce the presenting challenge to a few simple steps and guide the loved one through them. (e.g., This is a beautiful dress you can wear; I will drive you there; we will sit together and I’ll call the names of our friends.)

·         Encourage the loved one to stay active, but avoid insisting on doing difficult tasks. 

·         Remove clutter, noise, and any environmental stimuli that may be too intense to handle.

·         Reassure the loved one with warmth, patience and acceptance.

·         Speak calmly and in direct and simple sentences.

·         Use prompts in the house as they are needed.  For example, write reminders on post-its and provide phone numbers of friends and family near the telephone, etc.

·         Keep a routine schedule if possible.

·         Share with family and friends what may be happening, along with a few simple tips about the loved one’s needs (not a list of don’ts), and encouragement to visit, call, and take him/her out.

Helping the person be himself/herself as long as possible is the “gold standard” for giving care.

In other articles, I write about later emotional challenges with potentially more extreme acting out, such as aggression.  Reaching the memory shelf will inevitably be more difficult, the frustration and grief stronger, and the responses more threatening.