I Want to Learn

Remember, there are differences between normal forgetfulness as one ages and more serious memory problems.

It is important to see your doctor if you are worried about your memory issues. It is important to understand the cause of those issues and how they can be treated.

We have found many useful tools and videos from our friends at A Positive Approach to Brain Change.

By Dr. Holder, a specialist in Hospice and Palliative Care in Longview, Texas, who also served on the Board of Directors for the East Texas Alzheimer’s Alliance.

Carl was 68 years old when his wife, Helen, noticed he wasn’t remembering new people and events as he had in the past. He had complained of memory issues to her, but they both attributed the issues to normal aging. He had always been one to forget where he left his keys or wallet. She took notice, however, when he stopped engaging in their sometimes heated political discussions with family and close friends. In their 47 years of marriage, he had always been eloquent and well informed and the difference, although perhaps not noticeable to a stranger, was apparent to her. These differences led to a visit with their family physician which led to another and then eventual referral to a neurologist who confirmed their worst suspicions. Carl was diagnosed with early stage Alzheimer’s disease.

Alzheimer’s disease is the most common form of dementia, a progressive brain disease that slowly destroys memories and thinking skills. Alzheimer’s often starts 5, 10, or even 20 years before symptoms appear. Symptoms usually start with difficulty remembering new information. In advanced stages, symptoms include confusion, mood and behavior changes, and inability to care for one’s self and perform basic life tasks. Alzheimer’s disease not only affects a person’s mental faculties. Eventually a patient with Alzheimer’s loses the ability to walk and talk and eat. Alzheimer’s is ultimately fatal and is the fifth leading cause of death in the United States.

Helen is determined for Carl to have the best treatment available. Their days are spent going to different appointments with doctors and occupational therapists and social workers and attorneys. She researches the availability of clinical trials in the medical center of the largest city nearby, and they drive two hours to and fro for various assessments and treatments several times a month. Time passes. She misses their conversations, his ever-present reasonableness and his wit. She misses their banter. On the long car rides together, however, she still sees glimpses of him, the man she fell in love with 51 years before.

The journey through this disease is long and arduous. Initially the focus for the patient and family revolves around the treatment which will hopefully slow the progression of the disease. Advance care planning, which includes assigning medical and legal powers of attorney as well as establishing long term goals of care, is also a part of this stage. Participation in clinical trials is often initiated for those with interest. As the years progress, the symptoms worsen.

Helen had to cancel the last four appointments in Dallas. Carl is becoming increasingly agitated after the long rides in the car and the visits to strange places. She finds that he enjoys the calmness of being at home. Each morning after making breakfast and feeding him, she helps him shower and toilet then she dresses him. Most of his day is spent in the living room recliner, but they still venture outside for a daily walk. The distance of their walks has been shortened considerably. His shuffling gait makes even small cracks in the asphalt and sidewalk treacherous.

Caregivers of patients with Alzheimer’s disease often suffer from caregiver burnout. The demands of the patient are high. From arguments over driving to bouts of uncontrolled agitation to the devastation of watching the person you treasure slowly disappear, the mental struggle is exhausting. The physical demands are taxing as well. Initially the tasks include administering daily medication, but eventually the job becomes total care. Cooking, cleaning, dressing, bathing 24/7. While the patient is able to ambulate the concern for wandering is very real. Constant vigilance is required.

Helen starts the day feeling tired already. She doesn’t accept help from her friends who offer. Carl is her husband, and he would do the same for her. She can’t give up. She finds that he still enjoys music on some level so she plays music while he sits. And while he sits, she cries.

The East Texas Alzheimer’s Alliance (ETAA) was founded in February 2017 to help patients with Alzheimer’s disease and the people who love and care for them. The above scenario and hundreds like it play out in our community every day. The focus of ETAA is community education and respite care. Our free conferences have provided education about the disease itself as well as information pertaining to elder care law, caregiver burnout, palliative care, hospice care, and respite care. Respite care provides relief from caregiving duties. This care may be in an adult care center, a nursing facility, and even in the home. Our goal is to have several options for day respite during the week, usually for four to five hours at a time. Having a few free hours during the day provides caregivers time for their own doctor’s appointment or a quick visit to the grocery store or maybe just a nap.

Overnight respite occurs in skilled nursing facilities. There are many reasons to use overnight respite. For instance, there may be a family wedding several hours away. The trip would be too difficult for the patient, and no one would be home to tend to their needs. In this example, the patient may stay for a couple of nights in an approved facility. This type of care allows families to attend such events while confident that the patient is being supervised by professional caregivers who are trained in treating patients with dementia. Sometimes an elderly spouse, the caregiver themselves, are hospitalized for their own medical problem. Respite care in this situation is invaluable. The goal for ETAA is to arrange and pay for these respite services as much as possible.

Our board is comprised of various professionals in the area who all have a passion for helping people affected by Alzheimer’s disease. The money we raise stays in our community.

Stacey Holder, MD