Oct 10, 2011

Understanding Living with Dementia

“Don't make me feel bad for not being the old me or remind me of what I used to be able to do. Just give me the space to be me”

By Monica Heltemes

Mary, a 70 year old woman, a former schoolteacher, church choir member, knitter, and mother of 3 enters a restaurant with her daughter.

Her daughter is looking forward to a nice chat and meal with her mother. Mary, though, is feeling very anxious. She is not sure about what she is wearing; “ Does it match okay? Am I missing anything?” she wonders. She wants to ask her daughter, so starts “Do I need a…….?

She wants to be sure she is warm, but cannot think what to ask for. “What do you want?” her daughter responds. The word won’t come, so is forced to say “Oh never mind, it’s not important.”

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Conversation in the car is difficult, as her daughter rattles on and on about one thing after another. Mary sits quietly and does not try to enter into conversation, lest she say something out of place.

When they reach the restaurant, the questions begin. “Where would you like to sit?” “Is the sun too bright over here?” her daughter asks. Mary replies, “Whatever you decide is fine”, not knowing how else to answer. After finding a table, her anxiety grows. The tables nearby are loud with conversation.

When the waitress arrives, she struggles to follow her. “The special of the day is….” She loses the rest. The waitress keeps talking about lunch options, but Mary cannot follow. The menu is no help to her; there are words everywhere, but no words that string together for Mary to describe an item for her.

Then more questions, “What would you like to eat? What would you like to drink?”, from the waitress. Then her daughter prodding – “go ahead mom, tell her what you want. She is waiting for you.” Mary is overwhelmed and tries to contain her frustration. She finally answers “the special”, although she has no idea what the special is. Mary cannot wait to leave this restaurant.

Mary has early stage Alzheimer’s disease. The symptoms she experienced in this scenario include memory loss, difficulty multi-tasking, difficulty decision making,communication and word-finding difficulty.

As the person living with dementia has more difficulties with thinking, they need more help from others. These helpers can be called care-partners and may include family, friends, and neighbors. Often, care-partners do not understand what the person with dementia may be experiencing, thinking, or feeling. Therefore, they may not know how to best help and may inadvertently make things worse.

I have had the fortune to hear from actual persons living with dementia. Their insights can help care-partners better understand the person’s experience and lead them to better plans and approaches.

Persons with dementia ask for respect. They ask to not be talked down to or reprimanded. They ask you to understand their memory and thinking limitations. One woman explained, ““If I ask you to repeat something please don't get upset with me. It is because I am trying to understand what you have just said to me.”

They ask for help in narrowing down choices; in other words, no “20 questions”. Also, help in choosing environments that are not too stimulating. Reassurance, they say, can go a long way. A gentleman pointed out “If you have to repeat something, or explain it again…just have patience because we are walking slow because even the ground itself betrays us.”

The person with dementia is changing. But with some subtle changes from the care-partners surrounding them, life with dementia can continue on. As another woman summed up “Don't make me feel bad for not being the old me or remind me of what I used to be able to do. Just give me the space to be me”

Monica Heltemes is a practicing occupational therapist and owner of MindStart™. MindStart designs hobby-style items, such as games and puzzles, specifically for persons with memory loss. They keep persons with dementia active, while giving support to caregivers, and are quick and easy to use. Visit MindStart (Activities for Persons with Memory Loss) to learn more.

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Original content Monica Heltemes, the Alzheimer's Reading Room