Dropping the Ball….Again.

Brad and Jim working on a puzzle. Jan 2016

Brad and Jim working on a puzzle. Jan 2016

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.failure-is-success-if-we-learn-from-it

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (18)

18 Responses to “Dropping the Ball….Again.”

  1. Kathy Pekar says:

    You have just passed on invaluable information to help others prepare. You are not a failure. You are a human being on an obstacle course with no directions.

  2. LaQuita says:

    I am so sorry that nothing is easy about Alzheimer’s and the simple act of donating his brain becomes one more hurdle.
    You haven’t failed him! You are sharing with the rest of us fighting the same EOAD battle.
    I am praying for you, Jim and your precious children that doors will open so his wish can be fulfilled.

  3. Lisa says:

    That is ridiculous! Never think you have failed Jim.

  4. Sue Wood says:

    No you haven’t screwed up, you have done the best you could given the information you were given. You always seem to try your hardest and that is to be applauded. Just carry on as you are, you are a great wife and mother who always does her best. We all drop the ball from time to time and you have an armful of balls to contend with!
    xxxxx

  5. Marchelle says:

    Karen, thank you for your hard work in getting answers that others can use. You have not failed anyone. You are a strong, compassionate wife and mother and I admire your strength. I pray that God opens a door for you and your sweet Jim. Keep the faith not in man but in God. Praying for you???

  6. Mary says:

    I am the widow of an Alzheimer patient….I have traveled many of the roads you talk about. I reach out to you. A friend of mine has donated her body to the UW in Wisconsin. To my knowledge she is not in any studies and at 86 in decent health.

  7. John says:

    The road of an Alzheimer’s,s caregiver is time consuming, difficult and frustrating. The medical community, insurance companies and others don’t seem to understand this. It is through your efforts and others like you that change will take place and advancements will be made. Thanks for advancing the cause. My wife passed away at 60 to this disease in 2014. I still 2nd guess my decisions and feel guilt. Seems this is normal.

  8. Karen, give yourself a break. We as humans and cannot do every thing for our lover. You are doing not just a great job as caregiver, mother, worker, but it is a superior-great job. It is our tendency to sell ourselves short, not you. Look in the mirror and you see superwoman. Love…………

  9. Judith Knight says:

    YOU did not fail! The system failed you. And it failed Jim. The system is so broken that it is unable to provide the TOTAL family care that Jim and you and your children deserve. As a “care partner” myself, I know only too well what you are going through and what you are up against. Give yourself a break, take a deep breath, and accept that you just can’t do it all. I worked in health care for 27 years and I can tell you that from the inside it is not
    designed to be user- friendly. You and your family are in my prayers.

  10. Jeri says:

    Karen, I’m sorry to hear of your latest struggles and obstacles. After Dwight was first diagnosed, I somehow (through the grapevine) heard that a woman I had once worked with was taking her husband…….who had alzheimer’s ……to a research center to participate in a clinical trial. I made it my mission to find her and get the info because it was something Dwight wanted to do. Soon I had made an appointment and was hoping he could get in on a trial of some kind but no suck luck. There wasnt one available for his stage of the disease and with his rapid decline he didn’t ever get to participate with any new drugs, but we did go every 6 months for them to test him and follow his progression. I was also seen every time by a lady whose job was to support the caregiver. …whether just letting me vent or giving me suggestions about whatevet issues we were having at the time. On the 1st visit he was told how to go about donating his brain and he filled out all the paperwork to do that upon his death. It requires lots of paperwork…copies for you, the hospital, nursing home etc. I would think if Jim is an organ donor that would also include the brain. If you want the info on the research center I can e mail it to you. They may be able to help you get this done buy suggesting a place close to you. It might be worth a try. Just let me know. Jeri

  11. Amy says:

    I appreciated yor blog while I was in the final months of my husband’s journey thru early age onset Alz (47). He wanted to donate his body & brain to science, and I came up against the same thing, although nobody explained the reasons to me; in fact I had trouble even getting them to return phone calls. Drew’s body did go to medical school, but Alz research missed out on the chance to study a 2nd generation early-age Alz. Brain. Karen, you did not drop the ball by any means! In fact you are making people aware, and I will take this info to support groups to let them know the steps involved. As advocates for Alz patients I guess WE need to ask the doctors & be proactive in setting up the process of research donation in timely manner. Thanks for sharing, Karen, & Blessings to you and your family, and to Jim.

  12. Sandy says:

    Mortifying

  13. Andi says:

    Husband missed out on two clinical trails due to too advanced disease. Was able to donate brain to Harvard Brain Research though. No one should go through the Alzheimer’s living hell.

  14. Denise says:

    I’m so sorry you are going through all of this, and I do understand how frustrating (and at times infuriating) this whole process can be.
    As far as donating Jim’s brain for research, I know that is what we did with my mom’s brain after she passed in 2014. I honestly do not know what steps were taken in order to make that happen, but I know that I had seen a letter that the Mayo Clinic had sent my father a few years before my mom died asking his permission to turn her brain over to them following her death and he was to sign the form and send it back to them. Is there a Mayo Clinic near to you? Perhaps you can contact them and ask how you’d go about getting one of those forms. Even if the nearest Mayo is not in your home state, I’d think that when the time came, any donated organs (brain included) could be harvested from any hospital, preserved in a cooler, and transported to Mayo, or whatever research facility you may find that will appreciate and want your donation. I’m sorry I don’t have more specific info on whom to contact, and I also apologize for being a tad morbid. Unfortunately, as this awful disease progresses, dealing with the morbid becomes a necessary reality.
    My heart goes out to you, it really does. You and your family are in my thoughts and prayers always.

  15. Lee Ann says:

    You haven’t failed anybody. You are struggling, sure. But you are taking care of two kids, Jim and his needs, and trying to go through the minefield of Alzheimers care without a map. It would be great if we could just take a class in this . But you only get to go to that exclusive college when you get into the caregiving system. You are learning. You are learning things that will make you a valuable person in the future for the next group of caregivers that will inevitably come along. You can make Jim’s struggles meaningful, his life will have added meaning because it can help people in the future.

  16. Ann says:

    Oh Karen, you haven’t failed Jim. How could you possibly have known – even under the best of circumstances? And you were neck deep in managing a job and household, being a mom, wife, and caregiver. This was something I had thought of many times. Although my mom hadn’t specifically requested it, I know she would have wanted to help in any way possible. But I never pursued for one reason or another – because life got in the way, I suppose – until it was too late. When I contacted Dr. Scharre at OSU, they couldn’t accept my mom’s brain. I was upset – it felt like I had wasted such a wonderful opportunity to do the right thing. Eventually, I had to let it go and forgive myself. I didn’t know… now I do. So is the case for you, you simply didn’t know. Now you do and you’re doing the right thing by sharing your knowledge with others who may need it. Sending you love and prayers, my friend.

  17. Alessandro Machi says:

    Jim was too young for a study? It’s almost like a scam. When my father was dying from prostate cancer, I looked for clinical trials, and my father was too old for all of them. Now you have the opposite, unreal.

  18. In California, MediCAID offers In Home Supportive Services. This is a program where caregiver hours are assessed per month and the caregiver is paid a modest amount of around 10 to 12 dollars an hour. There is an hours cap, and the program seems to underestimate many first time enrollees. What makes my blood boil is impoverished elderly homeowners are not allowed to deduct their home property tax payment from their stated income, nor can they deduct their incontinence related expenses. Then if the enrollee is just a couple of dollars over, they suddenly either have a 700 dollar a month share of cost, or are not told that for 200 dollars a month they can buy supplemental insurance and reduce their share of cost to zero dollars. I have tried for a year nd a half via a facebook ad to draw the interest of an attorney, I even focused the demographic to attorneys, not one attorney has ever contacted me even though the facebook ad has over over 3,700 likes and over 2 thousand shares and almost 200 comments of concern. if i could pass a law, it would be that all salaried attorneys be mandated to donate 3 weeks a year to pro bono causes.

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