The one part of being submerged in the Alzheimer’s world I never get used to is the amount of time I seem to waste on the phone or searching for answers online.
When Jim was first getting tested and diagnosed, I did research online because the doctor didn’t tell us much other than he had Mild Cognitive Impairment with the probability of advancing to Alzheimer’s Disease. I had no idea what that really meant.
Then when I asked during a follow up visit about support groups and the doctor recommended a group sponsored through his hospital for head trauma victims, I went back online and found The Alzheimer’s Association and their support groups. And I found a new neurologist.
I turned to the internet to read up on the latest treatments and research. Then I stayed up countless nights searching in vain for a clinical trial for Jim to participate in (he was too young and ended up being part of a diagnostic study).
Throughout the years, there have been times where I needed to understand so much more than I felt capable of without any help from a more knowledgeable source. I still feel this way; inadequate and dimwitted.
Filing for Social Security Disability for Jim took hours. Applying for Medicaid took hours. Filling out the Aid and Attendance paperwork, meeting with attorneys, social workers, government and veteran organizations….hours and hours and hours.
This past summer, I spent Jim’s last months at home on the phone probing for answers that never appeared. I made call after call, desperate for help with his care, assistance transporting him back from Connecticut, dealing with the VA, looking for a new home for him and trying to get some answers about what all of our options are (or in reality aren’t).
Now, I find myself back at my desk, searching online and making calls. This time to fulfill Jim’s wish to continue helping find a cure. He wants to donate his brain/body to research when he passes away. Sounds simple enough. I am sure there are many options and I can just tell his doctor and they can set it up. Wrong again.
In order to donate your brain tissue for research, you must be participating in a study before you die. You need to go to that location, have them evaluate you and become enrolled in the research program. If you wait until you can no longer travel, it is too late. The ironic part of this is of course that for many years Jim was too young to participate in trials. Even though he is the perfect research specimen, having no other medical issues other than Younger Onset Alzheimer’s and he was willing and able to participate, possibly assisting a researcher somewhere to understand something that could change the course of this horrific disease, no one mentioned donation after death. No one asked if he would participate later. No one told me the timeframe and what needed to be done. I didn’t ask. And now I have failed him. There are only a limited number of brain banks around the country. Most are not even close to us, which is another problem. Several places would not take him because he is too far away. One study needs another family member to be involved in their program. One study, in New York, needs him to come in person to be evaluated. Maybe if he was having a good day, we had a private plane and the stars aligned just right.… It is so difficult to just accept “not possible” as an answer.
So, I tell you all of this to educate. If you or your loved one wants to donate brain tissue, start working the process now. It is not as simple as making a quick call. I am feeling like I have not fulfilled Jim’s wishes and wasting what his atrophied brain could teach. By not doing this last year, when Jim was capable of traveling and verbalizing his desire to participate, I have let him down and I have let down many others, including our children. Again.