The phrase that a person thinks and G-d laughs means that a person plans and thinks they know how things will go, but life happens, horrible things happen. Yesterday eight people were murdered when an insane man with a death mission plowed into them with a rented truck in Manhattan. They were happily going about their business and they were killed suddenly. A mensch trakht und Got lacht is a sardonic way of saying we never know when our number is up and what will happen to us. One minute we’re fine, and the next, well….
In my little world, the reality of getting this disease has nearly destroyed me. I say nearly, because I am a fighter. I am fighting to stay alive and as functional as I can be. I’ve always been that way. I think I was born that way. I’m a child of Holocaust survivors, so the survival instinct in me is still strong. However this disease is a monster which requires everything I’ve got to keep fighting. I’m still here, and that means I am still fighting to remain alive and be heard and seen. I so want to remain communicative. I don’t know how long I will be able to do that, as Alzheimer’s affects the way we communicate– so while I can I will communicate with conviction, and impart what I am learning about others and about myself.
I met a man recently who is close to my age who has Alzheimer’s. He is in a wheelchair and can not speak. I was told that a year ago he was in a choir, was walking and fully engaged. I went over to him and introduced myself, and he turned to me and tried to say something which I didn’t understand. His name is Michael, and his health aide told me he had been a brilliant lawyer, and had been very successful. It was important to me to try and communicate him in some way, to speak with him and show him that I knew he was a whole person that was deserving of being spoken with. Too often the person who is progressed in dementia is thought of as a non-person. People with disabilities are so often viewed in that way, neglected by others, not spoken to and left alone in their world. It was good for me to be able to reach out to him, as limited as our communication was, and was great to also be able to speak with his caregiver, and find out what happened to this still handsome man, who could no longer speak for or take care of himself.
In two and a half years, I have gone from being a high functioning teacher, filmmaker and professional, with numerous commitments and a life I loved, to a near recluse without a career, an income and independence. I have progressed in this horrible disease, yet I am fighting to maintain what is left of my independence.
I treasured my independence when I was well. Independence now means being able to take a shower and dress myself, go for a walk myself and be able to know how to use my phone and computer. I can make it to the hairdresser and to my therapist’s office which are in walking distance to my home. Small things but important in maintaining my dignity and independence.
My social life has diminished and friends who were a regular part of my life have disappeared unfortunately. Rejection is commonplace in this disease. People are afraid of it, afraid they may have it, or may get it. It’s painful to be rejected and lose friends, even when one is well. But to be rejected when you have no recourse because of stigma and misunderstanding – is the worst. I gave heartily of myself to others, to my students, to my colleagues, my relatives and friends. I am saddened that at a time when I would so enjoy keeping up with these people, they have decided to cut off relations. I’m still a valuable person with insights and so much to offer others, yet because I am not what I was, these people have disappeared from my life. It makes me sad.
My social life now involves Zoom chats with my dementia mentor, which is a life line as she teaches me what maintaining independence in this disease means. Our regular chats helps me stay positive and loving and connected. I zoom chat with folks on Dementia Alliance International. That’s another life line which has become a mainstay in my routine. Every Thursday I go on Zoom chat and get to share with others who are also coping with the limitations that dementia has had on their lives. These folks have a variety of brain diseases. Some have aphasia (which means that they have loss of ability to express speech, caused by their brain damage), but I know now that even with aphasia these folks can understand and speak. It requires patience in listening. In this fast paced world most people do not have the patience to slow down and listen. Listening is what I am learning now to do. Slowing down and listening is what G-d is telling me to do. Be mindful. They share their tips for maintaining their lives and getting the word out that people with brain diseases are not crazy. They have a disease that is impairing in different ways, but they are still able to communicate. Communication is key. Even the man in the wheelchair, Michael, was able to turn his head and make eye contact and try and speak. It was extremely reduced communication, but he was trying, and I am glad that my acknowledgement of his trying had meaning for both of us.
I remember my late mother, Sonia, when she was in the hospital and in the late stage of what I now know was Alzheimer’s. I thought she was completely unaware of everyone and everything. She was not able to speak or walk. She would lay in the bed until the aides moved her to a chair and fed her, changed her, moved her, turned her. One day I came into the room with my young daughter. Suddenly she called out my daughter’s name loudly. I knew at that moment that things were registering in my mother, and that she knew what was happening to her. With that one utterance of my daughter’s name she showed us that she was still there.
One most dear friend remains from my past and that is Harry. He was the editor of my films and now he visits me in my home. He is of course aghast that this has happened to me, but he understands well that shit happens. He is funny and is so caring, and we laugh when we’re together. He lets me talk about the ways in which my life has changed in this disease. He says he is learning about the disease and encourages me to think about what I can still do, and one of those things that is the most important is being able to communicate. Communication is the last thing to go in Alzheimer’s. It terrifies me that my communication skills may go in this disease, but I see that communication can take many forms.
Another very important person who has made time for me is my rabbi. He has come to my home and devoted time to understanding what is happening with me. He’s reached out to others in my community and as a result one lovely woman who I will identify as Z. visited me and brought flowers. The community at the synagogue has ultimately been my source of renewed friendship, and I am hoping it remains a source of support and social engagement.
Last but not least is my new companion, Jill, who is only 28 who my rabbi sent my way. She is a blessing, a delightful young woman who has also been through a lot with illness, that she has recovered from. She helps me get my tasks done. I write a list for the next day every night before bed and she helps me complete these tasks, which include getting out to exercise at the gym. We talk and she understands that I am coping with a lot of anxiety about what is happening to me. I treasure her and hope she sticks around.
I’m still me and can still talk and listen, but I’ve changed. Accept me and love me for who I am now and I will love you back. Understand that I didn’t cause this disease. It just happened.
I’m one of a very small segment of people with early Alzheimer’s. There are around 200,000 younger onset people with the disease in the USA, so it’s extremely devastating to us who were in the midst of careers and active busy lives, to be sidelined with a disease that robs us of our formerly high functioning selves. Understand that it’s a disease.
A mensch trakht und Got lacht. I guess my number was chosen, but I will fight with all I’ve got left. I will dance with this horrible disease until it or something else takes me home.
Here are some tips from an article about communicating well with a person who has Alzheimer’s. I don’t agree with all of them and have interjected some commentary.
Do not argue with a person living with Alzheimer’s. It gets you nowhere.
Ever feel like you just weren’t getting through or able to deal effectively with a person living with Alzheimer’s or a related dementia?
Try some of these tips to see if they help
1. Make eye contact (I AGREE WITH THIS. EYE CONTACT IS CRITICALLY IMPORTANT)
Always approach them face-to-face and make eye contact. Use their name if you need to. It is vital that they actually see you and that their attention is focused on you.
1 Read their eyes.
Always approach from the front as approaching and speaking from the side or from behind can startle them.
2. Be at their level
Move your head to be at the same level as their head.
Bend your knees or sit down to reach their level. Do not stand or hover over them – it is intimidating and scary. They can’t focus on you and what you are saying if they are focused on their fear.
3. Tell them what you are going to do before you do it
Particularly if you are going to touch them.
Always speak in a calm manner with an upbeat tone of voice, even if you don’t feel that way. If you sound angry or agitated, they will often mirror that feeling back to you and then some.5. Speak slowly (ACTUALLY THIS IS NOT ALWAYS NECESSARY. It’s infuriating to have someone speak to you more slowly than normal, so this depends on how progressed they are).
The suggestion is to speak at one half of your normal speed when talking to them. To take a breath between each sentence. They can not process words as fast as non-diseased people can. Give them a chance to catch up to your words is always a good idea. Just don’t be condescending about it. BE PATIENT AND MAKE SURE THE PERSON IS PROCESSING YOUR WORDS)
6. Speak in short sentences
Speak in short direct sentences with only one idea to a sentence. Usually they can only focus on only one idea at a time. THIS IS BS. YOU DON’T HAVE TO SPEAK IN SHORT SENTENCES.
7. Only ask one question at a time THIS IS TRUE. ONE QUESTION AT A TIME OR THE PERSON MAY NOT BE ABLE TO ANSWER OR REMEMBER MORE THAN ONE THING AT A TIME.
Let them answer it before you ask another question. You can ask who, what, where and when, but NOT why. Why is too complicated. They will try to answer, fail and get frustrated.
8. Don’t say “remember”
Many times they will not be able to do so, and you are just pointing out to them their shortcomings. THIS IS MORE BS. NOT EVERYONE WITH ALZHEIMER’S CAN’T REMEMBER. GOOD TO JARR THE MEMORY AND TRY TO REMEMBER TOGETHER.
That is insulting, and can cause anger and/or embarrassment.
9. Turn negatives into positives
For example say “Let’s go here” instead of “Don’t go there”. Be inclusive and don’t talking down to them as if they were a child. Respect the fact that they are an adult, and treat them as such.
10. Do not argue with them. I SO AGREE WITH THIS. ARGUMENTS GO NOWHERE.
Instead, validate their feelings, by saying” I see that you are angry (sad, upset, etc…). It lets them know that they are not alone.