My loved one, G., is a poster child for learning to live with whatever situation you find yourself in. He was totally blinded in an army training accident in 1955 but has led a successful professional life and enjoyed several careers Some of G’s success was due to rehabilitation training through the VA which gave him the tools to travel independently, read braille, and use electronic devices. A big component of his success was constant learning, thinking outside the box, and maintaining his independence so that he could care for his family.
Retirement was enjoyable and G pursued hobbies such as wood and clay sculpture until he began to experience accidents with his tools. Something was happening to his spatial perception and G noted he was getting lost in his own home where previously he had moved freely within the house and around the wooded acreage to do chores. In addition he was experiencing hallucinations which he attributed to Charles Bonnet Syndrome which is common among the visually impaired. He knew the hallucinations were obviously not real and they were not frightening for the most part. Added to the hallucinations, he began to thrash around in his sleep and to act out his dreams. He tried to prevent himself from injuring me by devising a surgical tubing “handcuff” to wear in the night. He could turn in bed but was no longer able to throw his arms out to punch.
In 2008 he was diagnosed by a neurologist with probable LBD. No longer safe with using tools, he turned to writing and was able to produce a novel that he had been researching for 20 years. He sometimes went six months with being unable to work on the novel due to lack of executive function, extreme fatigue and long period of sleep. His ability to use the computer was also being compromised by the dementia so he turned to me to type in the corrections and we worked in very short sessions to keep focused.
The other major problem had to do with extreme fall risk. G is always very dizzy and that, and the blindness made it problematic to walk around the house, even with a walker. He began to use a wheelchair in the house, not an easy thing to learn for a blind person. “It’s only paint.” became the new mantra around the house as he developed new skills in navigating.
Our social life changed from attending concerts, traveling, movies, dinner parties, to quiet home life, occasional matinee concerts , and twice a week sessions with a personal fitness coach. The goal with the exercise is to enable him to be able to assist in his own care and transfers as long as possible, and for me to have the improved strength to be able to care for him at home. Day trips out of town to see the doctor become opportunities to eat a meal out. We invited Amazon’s Echo AI device into our home so now “Alexa” can answer his frequent inquires as to day, time, weather, news, etc. Our next adventure in LBD is the addition of a sheltie service dog, DeDee, who is being trained to join our family. DeDee comes with our daughter who is a professional dog trainer to have an overnight lesson every other week for the next few months. DeDee is qualified to herd sheep so we are waiting to see how effective he will be kin helping G to find the bathroom, pick up a dropped object, or calm him when he feels agitated.
We know LBD will only worsen but we are always seeking ways to maintain quality of life. We are partners.
Dec 20, 2017