Monday, December 14, 2009

Not Enough, Never Enough…

Go ahead and fill in the blank after enough. There are many words that will do. In my case I will just look at the three that I feel are having the biggest impact on our reality.

Help or Assistance

From the medical community we get delays and excuses, “You are too complicated. It’s not my area. I just feel we need to run more tests before I can sign off on anything.” No effort is made to address symptoms or provide for basic relief from pain, anemia or a hundred other things that detract from quality of life and therefore from quantity of live.

From the caregiver agency we get told, “This is all the hours you are allowed. Family has to fill in for the rest of your needs.” The fact that there isn’t an extended family available to help doesn’t matter. There are two of us in this family who are regularly here helping. Linda provides the majority of care as she also works full time. I come on weekends and do what I can to help Beth and give Linda a chance to have some non-caregiver time. The non-caregiver time for Linda often doesn’t work out as it takes both of us to care for Beth.


If we had enough money we could have taken Beth to specialists early on in this illness and possibly have some treatments and diagnosis. If we had enough money we could provide a more disability friendly home environment. If we had enough money we could have all the hours of quality care giving we need. If we had enough money we could make more dreams realities and have more moments of joy. If we had enough money Linda and I could be on leaves of absence to be with Beth.


There is never enough time. There’s not enough time to just spend together. There’s not enough time to help Beth complete tasks she wants to do. There’s not enough time outside of work when I can be here. There’s not enough time to know this amazing person. There’s not enough time to not feel constantly pressed for time and resentful of things/circumstances that use what time there is. There is never enough time for Linda and Beth to just be together. No matter how much time there is, it is never enough.