A letter to the NJ Alzheimer’s Disease Study Commission – November 2014

This post was originally written for and read in its entirety before the NJ Alzheimer’s Disease Study Commission – a body of individuals charged with studying and making “projections about the future impact” of Alzheimer’s disease and related dementia disorders within the state of New Jersey. They convened several input sessions throughout the fall and winter of 2014/2015 to gather thoughts and stories from the public. I spoke before the Commission in November 2014 at Rowan University.

Good afternoon. My name is Elizabeth Brood. I am 34 years old and I am a full-time caregiver for my mom, Nancy, and my dad, Lou, who were both diagnosed with Alzheimer’s disease early in 2010. Presently, mom is 64 and dad is 80, and together we inhabit the home they’ve spent the past 40 years of their lives in, the home I was raised in.

Inside the dementia-world, it is easy to lose track of what’s happening in the bustling reality around us, so before I speak further, I want to thank you all so much for your work here on the outside to create a world, more specifically a New Jersey, that is easier for those living with dementia (and their caregivers) to be in. Thank you for your heart investment in this cause.

Here are a couple of points that I would like you to consider as you work across the next several months to develop our state plan:

Alzheimer’s disease presently has no cure nor any way to even stall the trajectory of devastation it promises to impose upon the lives of those living with it and their caregivers. With that said, I understand the importance of research dollar allocations toward such a cure, but the reality of the present for those of us already living inside the havoc must be considered. At the end of a long few days after my momma – who is much more like an 18 month old than a mom these days – has peed on the carpet twice, emptied the cat’s food all over the floor an uncountable number of times, punched our care aide in the side, shouted obscenities out the window at neighbors, and begged us to take her home a thousand times, and after my dad – my loving, kind, tender-hearted dad has paced the halls through all hours of the night with heartbreaking despair and confusion, I am NOT thinking about research. I am thinking we need help. Now.

What does that help look like?

  1. Improve outreach & circulation of information to families.  My parents were both diagnosed by a local neurologist, and I remember sitting in his office one morning waiting for him to come talk to us and feeling quite a bit reckless for answers. Ok, now that we have this diagnosis  – What do we do? Why is this happening? Who can help us? What resources are there? What next? So I asked him all these things. And do you know what he said? He said, “Go home and work on some crossword puzzles.” No pamphlets or info on local resources. No numbers to call. Not even a suggested organization we might reach out to. That, in my opinion, is utterly inhumane. If we can’t find you, find us. Please. Or create a better infrastructure – an exhaustively publicized and marketed clearinghouse of information – so that we, families like mine, are practically tripping over you. I had to gather resources piecemeal across the past 5 years and I’m still learning about new opportunities and programs to benefit my parents. We need a one-stop shop where we can explore a list of daycare facilities, home care agencies, assisted living residences, rehab service providers, elder care lawyers, social workers and doctors specialized to work with dementia, etc. At a single glance we need to know whether they are a for-profit or not-for-profit organization, whether they accept our insurance, where they’re located, how to reach them, etc. etc. And truth be told, more often than a visual or online resource, we need someone to hold our hand through the process, to help us evaluate our needs, to follow up on the steps we’ve taken, to take steps with us, and sometimes even for us, on our behalf. We need to know – where are the social workers specialized to work with dementia families? Who are the medical professionals whose primary function it is to help us through this diagnosis?
  2. Increase public awareness about dementia disorders.   We have a caregiver who helps take care of my parents and will occasionally take them around town on errands – to get mom a new pair of shoes, to get dad a haircut, to pick up a few groceries, whatever it is. There have been a number of occasions when they were in a public setting and suddenly my mom exhibited extremely noncompliant behavior – she was not willing to stay by the caregiver’s side,  was unwilling to get into the car, was attempting to cross a busy road by herself – much like a tantruming 2 year old except 140 pounds heavier. In those situations, it was necessary for the caregiver to grab hold of mom’s hand, or gently but firmly guide her toward the car. Well, my mom started screaming. “Help! Call the police! Call the cowboy!” and other sundry gibbering sounds. I’m telling you – if you want to increase public awareness, that’s the way to do it. But seriously, aren’t there more gentle ways to inform our communities at large about what it’s like to live with Alzheimer’s & dementia? In all the situations I mentioned above, the people in the vicinity of my parents and their caregiver didn’t understand what was happening. On one occasion, a man ran up to my mom and tried to rescue her from the caregiver. It is idealistic of me to think that we could ever achieve a world where everyone understands the intricacies of each other’s situation. But a little bit of public education could dispel the myths and partial truths – That dementia is a normal part of aging. That Alzheimer’s only means you forget things. That it only happens to the very elder members of our community. How about “living with Alzheimer’s letters to the editor”? Or a social column in some regional publications to promote public awareness?
  3. Increase Grant Programs.   My parents are not people of financial riches. They had a minimal savings coming into this disease and at present it has all been spent and then some. Therefore, increased grant programs for income-eligible families similar to JACC (Jersey Assistance for Community Caregivers), the state respite program, and the Alzheimer’s Adult Day Services program are A MUST. We could not survive without these programs. The nature of Medicaid’s 5 year look-back coupled with two adults who can’t remember their children’s’ names does not bode well for tracking financial records. I feel this also needs to be addressed for families like mine who are hovering at the edge of means.
  4. Commentary on Increased Training & Education Programs     I have heard several folks mention the need for increased education about Alzheimer’s and dementia within the medical community and I’m sure there are numerous best practice curricula and training programs out there and that you will determine thoughtfully what works best for NJ. In case this is not already emphasized within such programs, I want to highlight that, more than anything, these conditions require adaptability and innovation. The strategy one person uses to get their loved one in the shower may not work for the next person or the person after that. And even a strategy that has worked once may fail next time. We need to be creative, attentive and patient. And we need to persevere.  

Thank you.

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  • Reply Ashley Look December 5, 2015 at 8:23 am

    You are so right about the infrastructure!!! For me I have come across pamphlets galore but none of them existed as a guide or a series of steps on what you should do after the diagnosis. I too felt dropped in a foreign country and have had to learn everything in trial by fire. Ideally I would have been assigned both a social worker and a care manager/advocate that would work directly with me helping me put things into place and help me create an order of how I was going to approach this stuff. Much of my frustration exists in the lack of rhyme or reason in how I approach caregiving. It all seems to happen on impulse when I am desperate which leads to a series of decisions I later regret and amount to more work in the end as I then have to sift or reworks a step or process to now include, blah, blah, blah… Why can’t and ALZ diagnosis come in a similar package to a cancer diagnosis where you get a treatment plan, you are assign doctors and dates, a support network, etc. Ideally you get the diagnosis and then you have the next few months or years to get your affairs in order so when things really get bad, you can spend that time focusing on the actual care, instead of all the paperwork and legal BS that’s necessary in order to move forward. Blah…!!!!

    • Reply elizabethgracewolf December 8, 2015 at 7:21 pm

      Ashley, are you aware of the HOPE for Alzheimer’s Act? It would help to mainstream such care planning for families facing Alzheimer’s & dementia diagnoses by covering those kinds of preparatory and informational services under Medicare. I only learned about it once I got involved with my local chapter of the Alzheimer’s Association. When we were first gathering resources, I was essentially hopping from one social worker to the next collecting what little bits of information each had trying to assemble somewhat of a support system. Thank you for sharing your experience. In solidarity and love <3

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