There is no easy answer on coping with a loved one who suffers from Alzheimer’s at any stage of the disease. As a family caregiver who recently lost my loved one to the complications of Alzheimer’s dementia, I can say with conviction that without my Mom’s loving and nurturing long-distance caregiver, my Mom wouldn’t have been able to live at home with dignity until her dying day. But other caregivers before Yvette had no clue how to meet her needs. This filled me with anxiety. I was living in another country at the time. I could only hope and pray that things would get easier. I cried almost every night.
Caretakers would come and go until I had no choice but fly to the States and put in a request for twenty four hour care. Her teeth rotted. She wore a diaper. She told her case worker, “I don’t need any extra help. I’m fine!” while her sleeve rested in the tuna fish salad. The Caregiver who would change everything One day, in 2000, after a slew of different caregivers, the agency sent Yvette Mascary, a first generation American from a town near Haiti. From the first day, she looked at me straight in the eye and said, "Your Mom understands everything. You just need to talk to her." Before Mom fully lost her ability read, write, speak and walk, she and Yvette would go on long walks alongside the Hudson River.
Yvette would take Mom to get a haircut and they would go shopping to buy fresh fruits and vegetables that would find their way into Yvette's spicy and zesty home cooked dishes. It was hard to not fall in love with this brown skinned, plump and young looking cheery woman of 55 years who had a robust laugh, enjoyed preparing foods and kept an engaging conversation going. One day, Yvette fished through an old shoebox of Mom's recital and concert tapes back in the days when Mom was in her prime piano playing years as she was a classical pianist of note. In that shoebox was a tape of Mom playing Argentinian tangoes at Carnegie Hall in New York City in the 1960's. I had never heard that tape before. "
She knows what's going on." Yvette said. "She understands everything. You have to talk to her! You have to play these tapes for her!" Yvette held up the shoebox. She popped one in the cassette player and exclaimed, “Hello Carmelita (nickname for Carmen). How are you? Don’t you remember this piece? It’s you! Yes, you played it. Why don’t you play it for me again?” Yvette taught me how to emotionally connect with my mother and the evidence of those “lessons” are outlined below.
1. Know there is no shame in talking to a loved one who no longer has the verbal ability. Even if they cannot verbalize their emotions, wishes and desires, they are often well aware of what they need. In mom’s case, she would often nod her head or soften her eyes as a way to communicate. It’s important to talk as much as possible with your loved one to help stimulate the brain. Even though the brain activity degenerates over time, those who suffer from Alzheimers need to be in a loving environment where there is constant communication. Educating your caregiver on how to work with the disease Many caregivers from agencies may be loving and understanding, but very few know how to work with Alzheimers. Our Yvette was prepared to find ways to work with our mom at all stages of the disease. It was also because of Yvette’s high level of care and skill that our mother was able to stay at home without being admitted to a nursing home.
1. Have a friendly but helpful conversation with the new caregiver on how you see the needs of your loved one. What does s/he need? If you don’t want your loved one to be propped up in front of the television, explain that music and talking are the two ways to stimulate the brain. Explain how important it is for your loved one to be stimulated. This means joyful interaction and not being ignored half the day. For example, Yvette would often talk while she would prepare food or prepare my mom for her bathtime or she would help my mom recount some earlier memory. Making this extra effort can also build a caregiving-family team effort.
2. If it’s hard to get the caregivers to play music, suggest the idea of humor-related activities. Using different kinds of funny humor with Alzheimer's patients to help reconnect them to that pleasurable sensation or trigger off an emotional rection.
When Ronald Regan was diagnosed with Alzheimer's disease, people became more aware of the importance of seeking out resources to get help while caring for someone with Alzheimer's. Humor can often play a big role in care. Caregivers have joined laughter clubs for Alzheimer's in order to feel more comfortable with their own inhibitions about dealing with this difficult disease.
Final Words It is no secret that by providing stimulating and nurturing activities for an Alzheimer's patient, one can actually see the love and build a connection, which is so vital and critical as the loved one progresses from one stage to another.