Early Onset: A Challenge to Diagnose

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     On Thursday, the Alzheimer’s Association is pushing for a new bill in the state of Maine, LD 1072, that will require doctors and other medical staff to be trained in dementia, hospitals to develop a care plan before discharging a dementia patient, and that doctors always disclose a dementia diagnosis.
     This is our story.
     In May of 2002, my husband (age 36) went to a weekend Men’s Retreat at Camp Fair Haven. It was there, that he had a terrible accident. He rolled his four-wheeler going down a steep hill, holding on for 2 of the 3 rotations. Thankfully, he was wearing safety gear and had a helmet on. However, he remained in Trauma Care for 14 days suffering with multiple injuries that included a shattered ankle, broken collarbone, broken ribs, and a punctured lung.
     In hindsight, I do believe that this is where our Dementia story began.
     My husband is a clutz. If he can trip over, fall off, run into, or drop anything, he does. He has never accepted his limitations and has a very strong work ethic. As a result, he has sustained many injuries over time. I lovingly joke that, “He is the reason we have health insurance”.
     That same year we lost the matriarch of the family to cancer: his mother. He hit rock bottom. He could not get his bearings. It was at that time that the doctor put him on the first of many antidepressants. Many made him worse. So we would slowly wean him off one set, and wean him on another. We blamed his mood, social, and cognitive glitches on the loss of the mother that he adored.
     Over time, he has sustained 3 more significant blows to the head, participated in unsafe behavior, began self-medicating with alcohol and had what doctors classified as a classic “Midlife Crisis” in 2009. Our marriage of 22 years nearly dissolved.
     In 2010, my husband lost his father to cancer. Again, doctors continued to treat the obvious: depression. He attended counseling and weekly support groups.
     In 2013, he abruptly lost his job of 17 years after making an error on an insurance claim for a customer, submitting the claim as a “final bill” instead of a “final quote.” He had no idea that the error had been made, until a private investigator knocked on the front door to our home.
     We were denied unemployment, despite hiring lawyer #1 on half-salary, and appealing the decision twice.  His employer insisted that he made the error on purpose, although my husband clearly had nothing to gain.  It was cruel and humiliating. At that time, he was 47 years old.
     Seven months later, he was hired at a competitive company, and worked just 5 months before employers let him go. His employers thought there might be something wrong with his memory and encouraged him to see a doctor. So, a year later, to the date, my husband lost his second job.
     This is when we got serious with doctors and insisted on extensive testing.
     
It took two and a half years to get Social Security Disability. We were denied twice and forced to testify at a hearing with lawyer #2 for $6,000 despite medical paperwork 2 inches thick.
     In March of 2016 my husband had a stroke, which left him in a wheelchair for 10 months.
     
Much of what we have learned, we have learned on our own. Doctors are reluctant to answer questions because “every case is different”, and patients and caregivers are forced to reach and grab at straws. Thankfully, a specialized support group for early-onset coached us.
     
However, the most frustrating part of the diagnosis is that I feel like I have to be a strong advocate and educator to medical professionals and personnel. When I take him to the ER, which we frequent for Urinary Tract Infections and spikes in Blood Pressures, I have to be right by his side. I carry a fist full of papers which include his medical history, the history of his family, his multiple medication list, Medical and Financial Power of Attorney, and a DNR. This was as a result of lawyer #3 & #4, Eldercare Lawyers hired to prepare end of life paperwork & Wills.
     I have to remind professionals to talk to him and look at him while I listen. I have to coach them to put him in a quiet space, to speak slowly and simply, to dim the lights, and keep me with him as much as possible, because Dementia is huge and complicated, and nobody knows how to support and quiet nerves more than the caregiver. A huge part of the diagnosis is FEAR: fear of crowds, people, everything.
     At one point, our Primary Care Physician discussed the possibility of Home Visits. I would like to recommend that as something medical professionals consider. My husband is a very different person at home. If medical professionals want to see an accurate representation of where those diagnosed are at in their progression, I would highly recommend a home visit.
     After both his accident and his stroke, Home Health Care was fantastic. PT, OT, nursing, and social workers came to our home during the day, allowing me to continue to work full-time.
     We are young and many health care facilities aren’t accustomed to working with those diagnosed with Dementia in their late 40’s/early 50’s. As a result, many people have difficulty getting diagnosed, and are misdiagnosed for an extended period of time. At his highest point, my husband was taking 27 pills a day. I worry about the time that we are not longer able to care for him in our home. Thankfully, our youngest daughter and her family were able to move in with us and care for him by day so that I can continue to work full-time. She is taking on-line classes with a focus on Gerontology, with the hope that as he progresses, she will be better equipped to care for him and keep me working. (I’m not eligible for retirement for another 10 years.) Our older daughter has extensive training and has been an additional coach/support system for us. Although her home base is in Arkansas, she comes home for nearly every school break. I often wonder what would happen to my husband if he didn’t have such a strong support system.
     Today he is 53. We are nearing the 6 year anniversary of his diagnosis, and we are told that on average those diagnosed with Frontotemporal Dementia live 7-8 years from the time of onset. At this point, he isn’t receiving any extra medical care: no more specialists. Initially, we reached out to the Brain Center for testing, Dementia Specialist, Neurologist, PT, OT, and saw a multitude of specialists. Although he remains fairly high functioning, he just wants to live his life. Thankfully his PCP has been very supportive of our decision.
     We just need to know that when the time comes, medical personnel are adequately trained in dementia care, a care plan is provided before sending us to next steps, and that professionals are equipped to help caregivers fill out necessary paperwork for long-term care. We need to be able to access local memory care facilities equipped to work with those of early onset Dementia, so that our loved one is not housed in the same area as the elderly or those with differing mental health diagnosis. In the end, we want to easily access our loved one, and be provided the quality and affordable care that he deserves.
    Please consider testifying on behalf of those diagnosed and contact your local representatives regarding LD 1072. I did.
     Cynthia Higgins
Waldo County, Maine
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     Here is a copy of the bill:
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