People living with cognitive deterioration, whether caused by a brain injury, stroke, Alzheimer’s disease or dementia, face many challenges, and their families face many more. Rivka Black explains how the Brain Care Center in Jerusalem helps people living with Alzheimer’s and supports their families.
I often wonder what it is like to slowly lose control of one’s faculties, and I hope and pray that I will never find out. For thirty years I have worked with people showing different degrees of deterioration, first as a volunteer and now as director of the Brain Care Center at Beit Tovei Ha’ir in Jerusalem. The main thing that I have learned is that every case is different, because every individual has different physical, mental and environmental challenges.
The second life lesson that I have learned through my work here is that the person we treat is not the only one suffering. Alzheimer’s impacts the entire family. Watching your loved one suffering, forgetting names and faces, struggling to complete simple tasks, and becoming angry and frustrated, is extremely painful. It can drive their spouse to distraction, and put huge strains on their relationship with their children, and on the relationship between siblings, who may have different ways of coping with their parent’s deterioration.
Yesterday I had a conversation with a daughter of one of our Brain Care Center participants who has Alzheimer’s. The mother often confused her daughter with her own late mother, and the daughter didn’t know how to respond. Correcting her mistake was not helpful, because contradicting her just made her confused and angry. Instead, I suggested that she encourage her mother to talk about her grandmother, by saying: “Mom was always there for everyone, and we really miss her. I am glad that I can be here for you. What do you remember about her? What are some of the wonderful things she did for us?” By validating her memories instead of correcting her, she could encourage her to reminisce about her beloved mother, and at the same time show that she loved and appreciated her in her own right.
I recently met with the husband of a woman has undergone brain surgery. She has moments of anger which he does not know how to deal with, and he is embarrassed by her behavior. She has lost her independence, being confined to a wheelchair, and she needs assistance with all her physical needs. He understands that she has lost her autonomy and her ability to control events, and the only way she can express her frustration is by shouting, but the intensity of her outbursts upset him.
I suggested that in such instances he should apologize and say to her: “This is really difficult, I am sorry” and take a step back. Of course, there is no reason for him to apologize, since he is helping her selflessly, but it’s a way of defusing the situation and showing her that he cares for her and appreciates her frustration. In addition to bringing her to the Brain Care Center, we encouraged him to organize help from a care assistant through Bituach Leumi, so that he can take a break from caring for her and have time to himself. We also offered to sit with their children to discuss their mother’s condition and how to behave with her.
One of our goals at the Brain Care Center is to treat our participants with dignity, by giving them activity, purpose and security. They love coming to the Center, and our staff are trained to calm them and stimulate them with different therapies. Families often tell us that their loved ones are easier to spend time with after a few hours in our Center, and the day care sessions also give caregivers and spouses a chance to take time out and refresh their energies. When struggling to cope with the extremely challenging physical and emotional situations that Alzheimer’s can create, they know that we are there to help and advise them. The families of our participants are as important to us as their loved ones. We are here for them too, guiding them through the journey of dementia.