Preparing for Alzheimer's and Getting Organized

After my Alzheimer's diagnosis, we tried to imagine what we were facing and what our lives would look like in a year. After the first year passed, we thought about what our lives would be like in five to ten years. Imagining what preparing for Alzheimer's and my progression will look like.

Different concerns

My concerns were different than my husband’s. I wanted everything in order. I have always been very organized. You might not know it, but if I did not have it written down somewhere it was organized in my brain. My concern now was that I could no longer rely on my brain to keep things organized so I had to have everything written down. I have lists for everything - mailing lists, friends lists, to-do lists, Christmas gift lists, birthday lists. You name it. These lists are my fallback, and when I can no longer manage the lists then I hope they will help my husband.

Panic and flying blind

When my lists are not "in order," I panic. It's like I am flying blind. If I forget to put something on my to-do list I am sure I have forgotten something else. Then my mind goes into a spiral, and I can go into a full-blown panic attack in a New York minute. With my doctor’s help, I have learned to control my panic attacks somewhat but they are not fun to go through.

Photo memory project

One thing I knew I had to get in order after my diagnosis was to get all of our old photos organized. I had boxes and boxes of photos. I wanted to write on the back of each of the photos who was in them, where, and when they were taken before I forgot. I knew that my husband or son would have no idea so I started the process.

It took me about three months to go through, sort, and catalog them. I started scrapbooks and sent photos to old friends. In the long run, no one will probably care about all of this but me. I have told my family that I hope they will use them when I am much more advanced by showing them to me. I might not be able to communicate but they might also bring a smile to my face. You never know.

Preparing for Alzheimer's progression

Another thing that I wanted to get "in order" was our finances and legal "stuff." My husband kept telling me we had time, but I wanted it done. Everybody thinks they have time, but why not get it done? You can always change it later, but take care of things now - whether or not you have a life-end disease.

Setting up guidelines

I asked my husband and son to go with me to an attorney and get everything in order. We spent time outlining what would happen to me in case my husband was not capable of making those decisions, and what role my son would play.  I do not want my family to have to take care of me and I wanted that spelled out. I realize that they may change things in the end, but hopefully, my wishes will be followed. I have comfort in knowing that I at least set up some guidelines for them to follow.

Still not easy

All of this isn't easy, preparing for the progression of Alzheimer's, but it has to be done at some point. One advantage of getting an early diagnosis is having time to discuss important issues with your family and taking care of them together.