When I say a caregiving journal, I don't necessarily mean a diary, a book where you can write your frustrations, challenges, or a tool to vent. Although that would be a great idea also, you may want to consider writing one of those separately. I'm talking about a journal where you the main caregiver of Alzheimer's or Dementia individuals will take note of any significant changes that may occur with your loved one. What changes do I mean? well, loss of appetite, mood changes, bowel movements, doctor's appointments, diet, changes in medication, the dosage, sleeping patterns, vital signs, etcetera.
in such a journal you will write detailed notes of changes that are important and affect the individual's care. it becomes a great resource when you are visiting the doctor's office and you are sitting there trying to remember all the questions that you had. It's a great way to keep track of new medication, how it helped or not. It will be a great resource for anyone new caring for the individual if you are not available, giving them valuable insight into your loved one's needs.
When you take time to write down your loved ones' daily routine, what works what does not work, make sure you write the date, time of day and any details that you might think are worth noting. it also helps keep track of the progression of the disease. This may become a valuable resource for when you are trying to communicate with your doctor that "they are having outbursts" it is very hard to really explain in a coherent manner what we consider an outburst, versus what the doctor considers an outburst. It might be time to change medications, keeping track of changes in behaviors and the time of day they take place will help the doctor have a better understanding of your loved one's needs.
If you decide you need to take a break ( which you should) the journal will help the substitute caregiver figure out how to best help your loved one.
When you are in the midst of being an Alzheimer's or Dementia caregiver you may not see the progression of the disease from one stage to the next, when it's written on paper it is a lot easier to track and notice. Maybe its' time to get more help in the home, maybe there is a need for extra helping hands or certain medical equipment is needed in this stage.
It doesn't need to be complicated, make sure that there is a copy of a DNR if you have one. Of course, the essential information primary doctor's information, any allergies, preferred hospital, emergency contacts, current med list, this one is very important to make sure it is up to date. If they have any other doctors taking care of them, like a neurologist, cardiologist make sure their info is there. a copy of their medical insurance cards and any other information that you think would be important. keep this journal always in the same spot, make sure everybody in the household and other family members know that you have this journal and where it is kept.
