Hi, my name is Teri. I am a 3rd generation Alzheimer's Survivor and Co-Caregiver of a Loved One with Alzheimer's Disease. This week, I received a call from a friend of mine. I have not seen her, and we have not talked in about 8 years. However, through the magic of social media, she has seen my posts and read about my journey with Alzheimer's Disease.
About a year ago, she noticed that her sister seemed to be struggling to find the right word. At first, she thought her sister was having issues with her confidence. Until a couple of months ago, her sister frustratedly commented, "The word is on the tip of my tongue; I just can't get it out of my mouth." My friend realized there was more to it than a lack of confidence. She scheduled an appointment with an amazing neurologist at UCLA. She explained her concerns to her sister the day before the appointment.
As gently as she could, she told her sister that she was concerned about her memory, that she had called in a bunch of favors, and that she had scheduled this appointment. Her sister immediately began to cry, and soon they were crying together. Once her sister could talk again, she explained that she had been experiencing memory loss issues for about 2 ½ years. She pulled out her notebook and calendar and shared how hard she worked to organize her life.
Her sister was working so hard to hide her memory loss with reminders, notebooks, and alarms she did not slow down enough to consider what she could do to get help to stop her cognitive decline. They attended the appointment hand in hand together. The neurologist's team performed a cognitive assessment. It quickly determined they needed to send her in for more advanced testing to provide a more definitive diagnosis.
Soon, the insurance company inserted itself as they denied a PET scan. Leaving the neurologist and her team to negotiate with the insurance company about what test they would pay for. An MRI was ordered and denied. A cerebral spinal fluid test was ordered, but it was denied. The patient is only 51 years old. The insurance company could not believe that a 51-year-old healthy female could possibly have Alzheimer's Disease. Leaving the neurologist and her team to submit 30+ pages of documentation as a part of the Pre-Authorization report.
2 days later, they approved the CSP. It was scheduled, the test was performed, and the results came back positive for Alzheimer's Disease. At 51 years old!
My friend called upset, needing to talk and hopefully understand why this happened. Together, we reviewed Dr. Bredesen's list of insults that can lead to Alzheimer's. We identified 8 different issues that could have triggered her sister's Alzheimer's; instead of continuing to dwell on why, I pushed her to start thinking about what they needed to do to keep her sister safe.
Safety
Before you begin to research treatment solutions, change diet, or schedule additional assessments, you must stop and focus on the safety of your loved one. In this case, my friend's sister is in the very early stages. So, most of what I am about to discuss does not apply to them. Most families do not address memory loss until their loved one has advanced much further. These safety issues will apply to those families. Here are some guidelines and tips from the Alzheimer's Association:
If safety measures are in place, an individual living with Alzheimer's can live in the comfort of his or her own home or a caregiver's residence. As the disease progresses, the person's abilities will change. But with some creativity and flexibility, the home can be adapted to support these changes.
How dementia affects safety
Alzheimer's disease causes a number of changes in the brain and body that may affect safety. Depending on the stage of the disease, these can include:
Judgment: forgetting how to use household appliances
Sense of time and place: getting lost on one's own street
Behavior: becoming easily confused, suspicious or fearful
Physical ability: having trouble with balance
Senses: experiencing changes in vision, hearing, sensitivity to temperatures or depth perception
Home safety tips
Home Safety Checklist
- Evaluate your environment. A person living with dementia may be more prone to safety hazards in certain areas of the home or outdoors. Monitor garages, work rooms, basements and outside areas, where there are more likely to be tools, chemicals, cleaning supplies and other potentially hazardous items.
- Avoid safety hazards in the kitchen. Use appliances that have an automatic shut-off feature. Prevent unsafe stove usage by applying stove knob covers, removing knobs or turning off the gas when the stove is not in use. Disconnect the garbage disposal. Discard toxic plants and decorative fruits that may be mistaken for real food. Remove vitamins, prescription drugs, sugar substitutes and seasonings from the kitchen table and counters.
- Be prepared for emergencies. Keep a list of emergency phone numbers and addresses for local police and fire departments, hospitals and poison control helplines.
- Make sure safety devices are in working order. Make sure carbon monoxide and smoke detectors and fire extinguishers are available and inspected regularly. Replace batteries twice a year during daylight saving time.
- Install locks out of sight. Place a latch or deadbolt either above or below eye level on all doors. Remove locks on interior doors to prevent the person living with dementia from locking themselves in. Keep an extra set of keys hidden near the door for easy access.
- Keep walkways and rooms well-lit. Changes in levels of light can be disorienting. Create an even level by adding extra lights in entries, outside landings, and areas between rooms, stairways and bathrooms. Use night lights in hallways, bedrooms and bathrooms.
- Consider removing guns and other weapons from the home or storing them in a locked cabinet. If someone in the home is living with Alzheimer's or another dementia, firearms can pose a significant risk for everyone. For example, as the disease progresses, the person may not recognize someone he or she has known for years and view him or her as an intruder. With a gun accessible, the result could be disastrous.
- Place medications in a locked drawer or cabinet. To help ensure that medications are taken safely, use a pill box organizer or keep a daily list and check off each medication as it is taken.
- Remove tripping hazards. Remove throw rugs, extension cords and excessive clutter.
- Watch the temperature of water and food. It may be difficult for the person living with dementia to tell the difference between hot and cold. Consider installing an automatic thermometer for water temperature.
- Assess bedroom safety. Closely monitor the use of an electric blanket, heater or heating pad to prevent burns or other injuries. Provide seating near the bed to help with dressing. Ensure closet shelves are at an accessible height so that items are easy to reach, which may prevent the person from climbing shelves or objects falling from overhead.
- Secure large furniture. Check that book shelves, cabinets or large TVs are secured to prevent tipping. Ensure chairs have armrests to provide support when going from a sitting to standing position.
- Avoid injury in the bathroom. Install grab bars for the shower, tub and toilet to provide additional support. Apply textured stickers to slippery surfaces to prevent falls. Consider installing a walk-in shower.
- Improve laundry room safety. Keep all cleaning products — such as liquid laundry pacs and bleach — out of sight, secured and in the original (not decorative) storage containers to discourage someone from eating or touching harmful chemicals. Consider installing safety locks on washing machines and dryers to prevent inappropriate items being put in or taken out too early. Clean out lint screens and dryer ducts regularly to prevent fires.
- Assess safety hazards in the garage and/or basement. Limit access to large equipment such as lawn mowers, weed trimmers or snow blowers. Keep poisonous chemicals, such as gasoline or paint thinner, out of reach. Install a motion sensor on the garage door.
- Support the person's needs. Try not to create a home that feels too restrictive. The home should encourage independence and social interaction. Clear areas for activities.
Here is a pdf that you can print out as a reference guide: https://alz.org/media/Documents/alzheimers-dementia-home-safety-checklist.pdf
Join me next week when we talk about vacationing with a loved one with Alzheimer's Disease.
If you or your loved one are experiencing memory loss and need help, give me a call. I offer coaching services and in home consultations to help adjust to the changes that need to be made to survive Alzheimer's.
Teri
214-629-2509