September is World Alzheimer’s Month. Alzheimer’s disease deserves the global attention. It is a complex global disease involving much more than mere memory decline. Closer to home, it is the sixth leading cause of death in the United States. It is among the top 10 diseases in the in the US that cannot be prevented, reversed, or cured. As overwhelming as these statistics are they do nothing to fully describe, or ease the pain of living with Alzheimer’s, or the fortitude required to do an end run around the despair of the disease to find the coping strategies.
The death rates for many major diseases — including stroke, prostate cancer, breast cancer, and heart disease have been declining. Yet as might be expected as the population ages and lives longer more are diagnosed with Alzheimer’s. The death rate from Alzheimer’s disease increases. The challenge for those dealing with it is how to remain fully alive understanding the future without allowing it to rob from the todays.
Relationships remain important throughout life, even when disease is present. An important factor to consider is what involvement the grandchildren and other children will continue to have with the sufferer. Some sufferers choose ahead of time not to have the children visit them once they do not recall who they are, for the sake of the children. When the sufferer changes his or her mind later the family has to choose between remembering the agreed upon agreement or adjusting their child inclusive practices.These are eventualities to discuss with all concerned, including the children. Some families chose to monitor the sufferer and the child for distress as the disease progresses.
The disease progresses at different rates. Those diagnosed with it may think in opposites as evidenced by their dressing in reverse. They wear morning wear for night, night wear for day. In the late stages they may walk with a tilt and knock their heads on a wall or walk in circles. Normally careful about their hygiene they may become afraid of showers and actually refuse to shower or wash their hair. An educated, formerly strong patriarch may stand and forget how to sit.
Support is key. Many are on the same journey, some ahead, some behind the newly diagnosed. The pain can be eased. Some therapies offer the hope of delaying the course of the disease and the research continues.
There are strategies and technological assists available. Proactive actions taken by the carers can make life easier for the sufferer and for themselves.
There are some unwritten rules. Eye contact and hugs are very important to the sufferer. Do not interrupt their verbal stream. Do not argue. Reality is as they call it. It won’t matter tomorrow anyway. Kindness is king. If you have to choose between being kind or being right, choose kind.
Keep the schedule simple and predictable. Consistency is the key. Stay patient. Remember they are not trying to wreck your day. It is the Alzheimer’s. Reassure yourself and them with that as they are as likely as you to be as upset by the upsetting event.
There are some low tech assists that make caring for someone with Alzheimer’s safer and more pleasant for all concerned.
Being oriented to the day, date and time are important. There are specialty clocks that indicate the day only. Other clocks indicate if it is morning or evening. Other clocks display the day, date and time and other clocks ‘talk’. Talking clocks and watches ‘tell’ time and can be programmed to verbally alert to the need to prepare for an appointment.
Often the sufferer can recall faces if not names. Cell phones have the option of inputting a photograph near a phone number. There are also photo phones designed for land lines. Photographs of loved ones can be inserted with a speed dial function. Pressing the photograph results in that person being called. They are available locally from The Alzheimer’s Store in the Atlanta area in Cumming.
Monitors come in many forms, a talking monitor at the door that reminds the one leaving to turn off the lights, lock the door, etc. While some technologies may be considered to be intrusive, the ones mentioned here do not cross that threshold and may make life a little easier, for a little longer. The desirability of the use of more intrusive technologies and monitors should be discussed with the sufferer and family while reason prevails.
Living fully in whatever joy the day affords is the surest way to “beat” the ravages of this disease.
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