Today, I have a hard question to ask that has been a battle in my mind for quite some time now; I’m sure other caregivers or loved ones experience this battle sometimes, too. The question: what is enough?
When I was a child, my parents had split schedules. Basically, most days my dad worked nights and my mom worked days so that there was always at least one adult with us children at all times. My dad would pick us up from school and there would be maybe two hours before he had to go to work (and mom came home from her job).
The majority of the school days, those few hours would be spent doing homework and my dad getting ready to leave. Once in awhile, we would play a game. Weekends would be when we would all go out together and such like that. Point is that there was not excitement every single day.
The roles have reversed now. My mom is with papa at night and I am with him on and off during the day, between all my jobs. Sometimes I have longer time periods with him, like six or seven hours. Other times, I have one to three hours with him.
My battle is that when either I do not have a whole lump of time or when he is too tired, what is quality time? How do we know we are helping if papa does not want to do much more than watch TV together?
Is this still considered quality time because at least we are sitting together? His mind seems to get him tired easily so he is asking to do less and less things. What is sufficient? Is it okay not to do something every day?
It is often encouraged for both patients and family members/caregivers to join a support group. There are support groups offered nearby in Mountain View, San Jose, or even telephone support groups. For support in your area, check out http://www.alz.org/norcal/in_my_community_support.asp