As a patient in the late stage of Alzheimers continues to decline, they will reach what the medical word has named End Stage Alzheimers Disease.
End Stage Alzheimers is recognized by the following signs.
Speech: They are unable to speak more than 5-6 words a day and the words they do speak do not make any sense.
Mobility: They are unable to walk, sit up on the side of the bed without assist, or even hold their head up. At this point they are in bed most of the time.They have difficulty moving themselves in bed and will need help repositioning every couple of hours to prevent their skin from breaking down.
Sleep: They spend most of their time sleeping. It is common for them to sleep 20-22 hours a day.
Nutrition: They eat very little now and may go several days at a time without eating. This is the body's natural process and is often very hard for family members. Often our way of nurturing those we love is to feed them.
Bowel & Bladder: They are incontinent of bowel and bladder at all times now.
They require 24 hour complete total care. This becomes very physically demanding and the caregiver will need help.
Comfort care is simply letting the disease run it's natural course. The time for any type of aggressive treatment has passed. The focus is on keeping your loved one comfortable.
I worked in the hospice field for several years and was surprised at how many people do not understand what hospice is and the benefits it provides to the patient and the family.
Hospice care is usually a team of end of life experts who come in and help guide the patient and loved ones through the dying process. They help with providing medical equipment, pain management, emotional support, spiritual support, and assist with coordinating other resources which may be needed.
I have often compared it to the beginning of life. When it is time for a new life to come into this world, there is a team of experts to help with the birth process. Hospice is the team at the opposite end of the life spectrum.
Hospice is covered by Medicare and most insurances. There are guidelines for an Alzheimers patient to be eligible. They must have a physician determine the disease will probably run it's course within the next 6 months and they do not expect the patient to live longer than 6 months. There usually needs to be more medical issues involved also. If your loved one has the above signs, it may be time to consult hospice. If it is not time yet they will let you know. Too often people wait until the last week of life to consult hospice when they could have the extra support from the hospice team for several months prior.
Do you need help keeping track of appointments, medicines, vital signs, weights, meals, bowels, and behaviors?
Do you know what stage of Alzheimer's Disease your loved one is in?
Do you know what to watch for next?
Do you have sitters coming in and need to have a better system to help them provide the best care?
Does your loved one have behaviors that you should be tracking?
Do you have all of the information written down you need when you go to your doctor visits to help them understand what needs you may have?
The Caregivers Notebook will help you organize and document the care needed in your home and provide clear direction to those who help you care for your loved one.