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.
Money
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.
Time
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.
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3 comments:
There's nothing to say, I think. I'm sorry it's so hard.
*hugs*
So sorry. I wish I could you all more of even one of those. I hope it will help a teeny tiny amount to know there's someone listening (reading)
I'm reading too, and also wishing I could do more... but I'm thousands of miles away, as I imagine are most of the blog-regulars, so all I can do is read, comment, send the occasional postcard and buy stuff from the wishlist now and then. You are there when it counts, Cheryl, which has probably been literally a life-saver.
Meeting Beth and Linda, when I was visiting my relatives, back in September, was wonderful. I'll never forget it. My relatives were somewhat puzzled that I wanted to go into Victoria to visit someone I'd never met (I was staying on Salt Spring Island) but I explained them about Beth, our online friendship over such a long time, and my cousin drove me all the way there.
I do hope the Christmas prezzie I ordered from the wishlist arrives / arrived in good time, and that it gives Beth a little pleasure. Hopefully lots of friends have been on the wishlist and bought things to help.
Love & peace
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