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Statement Of Meryl Comer, board member, National Capital Area Chapter, Alzheimer Association Presented to the Bipartisan Congressional Task Force On Alzheimer’s Disease May 3, 2005I am honored to be here today to be part of this briefing for the Congressional Task Force on Alzheimer’s disease. I’d like to thank Representatives Edward Markey and Christopher Smith, for their critical leadership in Congress on this issue. My appearance is a bit of a role reversal. For years I interviewed many members here during appearances on my debate show. Today I appear before you as the “ultimate desperate housewife” and a caregiver for my husband with Early-Onset Alzheimer’s. I am just one among the legions that are part of the statistic which assesses the Economic Value of Informal care-giving estimated at $257 billion dollars annually. (2/24/02 Amer. Assoc for Geriatric Psychiatry). How did I get there? The diagnosis: Alzheimer’s with a behavior disorder. You are not sure what the future holds. My physician husband was 58 years old when diagnosed. You cling to the appearance of normalcy, then hide out to protect their dignity and disguise reality. Alzheimer’s was then and still is my reality, my nightmare. Now ten years later and counting, he is late-stage dementia. 24/7 care. And still at home. That’s just a snapshot. Every caregiver’s story is unique, yet somewhat the same. But when the onset is early, it is like being witness to a future that will ravage our baby boom generation. I am terrified for all of us. As “informal” caregivers, we have juggled work and care-giving, abandoned careers for part-time employment, been forced into early retirement and jeopardized our own retirement futures. None of us thinks of ourselves as martyrs or selfless. We are just doing what needs to be done for a loved one. But what happens to them if something happens to us? And what happens to this disguised societal cost when ten years out, irrespective of a cure, there will be more than 13.5 million people suffering from Alzheimer’s who need care, specialized care. It is clear: families cannot do it alone. According to a recent survey of 1,247 unpaid caregivers, conducted through a collaboration between the Alzheimer’s Association and the National Alliance for Caregiving:
What we need to recognize is that when a family member with Alzheimer’s ends up in an institution, it is not because the spouse or family hasn’t tried to take care of them at home. It is because it has become too physically and emotionally difficult, the caregiver gets sick, children are at psychological risk, or it is just too dangerous to keep them at home. In our case, my physician husband was young, strong, in denial about being sick, fighting to hold on. In the early stages, the first warning from the doctors was “Call 911 if he gets too dangerous”(so I put away all sharp objects, hid the car keys and locked the garage so he couldn’t endanger others). The second warning, after a two month hospital stay was, “Your husband is too dangerous to come home”. But no institution wanted us, not even at $100,000 private pay. Consider the reality. My husband was too much trouble. A simple blood draw required pre-sedation and four strong nursing aides to hold him. The institutional solution for my husband was overmedication and restraints PRN. So I brought him home and have been working it out ever since. Alzheimer’s abuses and tests a caregiver’s endurance. It demands the most basic of care, despite their resistance, and just gets harder and harder as the disease progresses. Name it. We do it. And there is nothing that I ask the nursing aides to do that they haven’t seen me do for my husband. He cannot be left alone. He is moved from room to a room in a wheelchair; Medicare reimbursement denied because he is still somewhat ambulatory. You live in the shadow of the illness. Their isolation is your isolation. Their reality is your reality. When my husband calls out for his Mother, I am the one who answers, “Here I am”. Alzheimer’s is cruel. It robs you and your family of the present and the future. More devastating than “lost memories”, Alzheimer’s slowly steals one’s intellect, one’s ability to communicate, one’s independence and one’s dignity. Together we are trapped in a “long goodbye” that may last for years because he is young and healthy. I apply to have my husband participate in clinical trials... so vital to basic research on the disease. We are not even wanted there. So I run a mini-institution at home. Custom care. Despite elaborate marketing brochures, there is no institutional equivalent. I wish there were. Instead of the 2 and a half hours of skilled nursing care offered in facilities and the one-to- seven staff to patient ratios which invite neglect, we never rush care. His behavior disorder will not permit it. Ironically, my husband is “still in charge”. We play to every function that is still intact – special meals because olfactory senses are the last to go and stimulate multiple sites in the brain. We play Beethoven and Brahms in the morning and new age music at night to calm him in lieu of medication. We read his research papers aloud to him hoping for a connection. We keep elaborate records on daily care and behavior. In desperation to preserve function so that I can manage him at home, I have even gone on the Internet to purchase a drug, used successfully in Europe for late-stage dementia over the last decade, prior to FDA approval here. 44% of dementia caregivers surveyed report they do not use any support services. No surprise. Despite their mission statements, most support services hand us off to other institutions. Therapies are trial and error. Doctors, fearing liability, prefer not to release patients from the hospital back to home care. Social workers are just as intimidated. And the dearth of specialized nursing aide training for dementia patients in facilities is appalling. No financial planning ever projected the cost or the pain. The estimates for care are grossly understated and the pressing need for long term care insurance ignored. Harvey is still young – 68. The average life span from diagnosis to death is 8years – the range 3 to 20. We’re into year 10… the first 5… I managed alone until the doctors became concerned about my health and physical safety. Most Alzheimer’s patients die from secondary infections in nursing facilities. At home, he’ll live a long time. He’ll outlast our finances. 
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