I have a friend, Mary Ann, whose mother is getting steadily worse. She has dementia or Alzheimers. Well this friend worked as a DSP for me during a time when I desperately needed the help.
Mary Ann tells me regularly how thankful she is that she worked with my daugher. It is helping her in this time with her own mother. One of the issues Mary Ann and I discuss is keeping your options open.
The rest of the family does not understand or maybe does not want to understand how badly their mother is doing. She's not sick but she does have all of the willful characteristics of Autism and Alzheimers. She wants to take off, wander, and argue.
The family, ie the Circle of Support, do not want to get on any of the waiting lists for in home care. They need to have some discussion around long term supports. I describe this to the families I interact with as 'not leaving their options open'.
If you do not get on the various lists for help you do not have the choice of using it when you need to when your loved one's name comes to the top. OR of saying we want to go back to the bottom of the list because we do not need the help now. OR even of saying we want and need this little bit of services but no more than that.
I have the same conversation with parents of young children with Autism. If you do not get on the list now. You are not keeping your options open!