Of the millions of people who provide care for their loved one with dementia, I suspect very few volunteer for the job. Most find themselves in a position of having to step up to a task that suddenly needs attention. This task, though normally considered to be an end of life issue, is not very different from what Mom faced when Lyn was born.
You see, when you're pregnant, you hope and dream that your child will be healthy and happy. You believe that the demands of infancy will ease as the child grows into a more and more independent person. While this is true for the vast majority of us, it was not the case for Lyn or for others who are born with chronic physical or mental challenges. When this happens, the parent is suddenly faced with a daunting task that needs attention.
Lyn was born premature and struggled through infancy. Her developmental marks, such as walking, were all eventually met though all were on the late side of things. There were skills that she didn't acquire for years, however. For example, she didn't sleep through the night until she was 16 years old. Parents brag about their babies sleeping through the night by the time they are 6 months old. Imagine being disturbed every night for 26 years because your child is awake and checking in with you.
Now, at 40, Lyn's dementia is causing changes which are evocative of her early years. Her shadowing of Mom is an example of this. We've heard from Mom about how she's facing a loss of privacy. Mom's facing a daunting task with providing the care for my sister. While I can help, it is at a distance and that is not always sufficient.
As a result, Mom and other similar care providers may benefit from supporting each other or receiving support from local third parties. Mom is fortunate that Lyn is part of a program which provides Lyn a respite provider and a speech therapist. While these resources are greatly valued and tremendously important to Lyn, they are not targeted at supporting Mom.
Resources which are available include, but are not limited to, the following: