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What Determines Quality of Life?

Dealing with Dad's dementia: This week, I talk about how to distinguish quality of care and life.

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?

 

RESOURCES

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

Bob M July 25, 2012 at 03:44 PM
Nicole, As people age they become less active and I think that trying to keep them active all the time puts undue pressure on them. In my opinion, the simple act of your being around with them (reading, talking to them, doing things around the house) does not go unnoticed or appreciated. Let their reactions tell you what they want and allow them to slow down with age, and as the disease progresses (because it will). We have noticed an increase in my mother-in-law's "sundowning" (increase in her memory problems, paranoria and fears) and so we try to get the active parts of her day in earlier when she feels more like being active. It is OK to let them be less active.
Anne Ernst July 25, 2012 at 07:07 PM
Bob M has a good point. Even my healthy 83-year-old mother has slowed down.
Frank Geefay July 25, 2012 at 08:58 PM
As an aging senior I have noticed that I can no longer be as physically active as before. It takes more effort for me to go out and do the things I used to love doing. I am starting to forget with greater regularity why I got up to do something. I try to keep my mind from its downward trend by writing articles like this. But even this is slowly becoming more laborious at time. I try not to watch TV so much but it seems to be gradually drawing me more into its hypnotic embrace. I have plenty of time to reflecting upon what quality of life means for me. It’s doing and thinking about things that bring pleasure and have value to me. I cannot be forced by others to improve my quality of life because it is an internal thing, something that has personal value to me. I might be convinced by others to improve my quality of life but as I age I find myself less excepting of encouragement from others. Quality of life is something I must want, not something others feel they must give to me. It is all about my needs, not the needs of others. But when I reach that age when I can no longer find pleasure or value in life, I hope to die quickly and peacefully and hope that my loved ones would respect me enough to let me go. But for the present, in spite of an aging body and a less than stellar mind, I still find pleasure in living and challenging myself, even if it is not to the degree of prior years.
Nicole Baldocchi July 25, 2012 at 10:41 PM
@Bob, Thank you for the advice and encouragement. I think you are right in there sometimes just being there is supportive. @Frank, Thank you for the thoughts. I agree that nobody can be forced to do what others think they should. Probably no matter the condition of the person, they still subconsciously know what is right for them. Thank you both for reading! @Anne, As usual, thanks for the support.

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