What have I lost for which I need support – can’t manipulate or understand numbers, get confused and bewildered in crowds and unfamiliar surroundings (especially airports!), can’t follow conversations involving more than one or two people, lose my train of thought –easily, sometimes in mid sentence, sometimes while I am speaking, am not as confident in myself, seem to have a delay in some of my oral responses, frequently initiate or join conversation in mid thought – others don’t know my context, can’t find words and can’t describe them, talk too much – lack economy and specificity in conversation, swear, increasingly wander away from people and off on my own.

What do I want to do: continue speaking and writing about what it is like to have alzheimer’s disease (it’s my newly discovered sense of purpose), serve as a role model for others with the disease, show another side to caregivers of their issues, open the minds of professionals from a patient’s perspective. Become closer to my family and friends – spend more time with them, share more activities with them, speak a little less and listen a lot more to others, be more open and less defensive and sometimes aggressive when I perceive others are making decisions for me without first consulting me, understand how I am growing rather than concentrating on what I am losing, show my love more for others regardless of their response to me,

How can you help me do it:provide attention and support to details that now escape me, anticipate my safety needs (falling, wandering), work with me to limit and realize when I am talking too much, off point, inappropriately).

Talk more to me, listen to me and reflect back to my satisfaction that you understand what I have just said, suggest solutions and avoid defensiveness, blame, debates, and deflective responses, provide more feedback, less judgmental, more creative responses, more “I” messages, more solutions, help me solve problems rather than understand or explore them. Keep me focused on my larger goals and how best I can accomplish (get to wrapped up in the confusing and confused details of the day, or a conversation, of an immediate need. Lost the perspective of a big picture, of my life. Help me find it, define it, point it out to me when I am neglecting or straying from it. Cheer me on when I am realizing it. I don’t always stay in the moment. I wander back into the past. I am influenced by my fears. I am fearful of tomorrow. Find me when this happens. Point this out to me. Help me come back to hear and now. Assure me you are here to work with me, that you accept me as is, that you love me today and tomorrow as you did yesterday and the day before that.  I’m more insecure than I ever was. I’m more in denial about some old issues, and lots of new issues. Gently help me understand and deal with these issues. Accept we don’t understand, we can’t understand each other like we did, or thought and acted like we did yesterday. Live with me, celebrate with me today.  Be more of a cheerleader for me than ever before. Always give me the benefit of the doubt. Trust my intentions more! Talk about things before you argue and debate things. Look for underlying and sometimes obtuse motivators. Look first to me and what’s going on. Honest sometimes I don’t know. Learn not to mourn. Look for joy in today, and help me do the same. Eat more fruit. Worry less about the future, about money, and death.

What are new barriers for me: I have lots more fears, lots more deep fears, lots more fears I can’t explain. So do many of you, but they are seldom the same.

We don’t listen in constructive ways. We don’t provide feedback in constructive ways. We aren’t solution focused. We take turns denying I have this or that problem. We don’t realize how fears have changed who we are as individuals, as a family, friends, as a couple. We have many more insights,  and a few better insights into each other than ourselves.  We are increasingly isolated from sharing feelings with others, with being vulnerable in front of others, with depending on others to take care of us, with today and tomorrow.  Living through this disease is mandatory for all of us. Living as close or closer to each other is not. Changing how we relate to each other is mandatory. Becoming closer or even staying the same is not. Let me share your feelings and fears. Let me into your heart. Don’t expect either of us to be able to solve or even address all that we did in the past, but trust that we are doing our best.

I now believe all of the issues that will face PWD begin to impact them in one way or another way before anyone talks about them. We need to start enabling, planning enabling, understanding and taking responsibility for it long before we really need it. You are here (wherever that is) and you will end up here. It’s not a question of if, but when. Not a question of If, but what will you do about it when the symptom appears.

Waiting for shoes to drop is the wrong way. We shouldn’t wait for anything.

~Richard