....is the title of the latest book that jumped out at me while taking Dad to the library. I'm reading it and thinking, "man, I wish we'd had this ten years ago." A recent book, it talks about how to have more say over the kind of care you receive as you age. What the medical establishment is set up to do is curative care...almost always, even with someone at the end of a long battle with a nasty disease like cancer. The two women who published this book in 2010 are sisters; one a lawyer and the other an ER doctor. They talk about how there are "exit events" in our lives that used to take us but no longer do because of all our medical advances. While this is really good news for those of us who are healthy and enjoying life; for the terminally ill they can drag out our lives much longer than we want them to. For instance, pneumonia used to be called "'the old man's friend' because it offered the very elderly a relatively quick and painless death."(pg 53) The same is true with urinary tract infections, but today we send the elderly to the ER for treatment (sound familiar?) What I've discovered is that doctors do this because that's how they get funding for the hospital. That is a whole 'nother topic...
Okay, so what does all this have to do with our situation? Besides being enlightening and a help for me in my preparations for death...very little. While mom will say that she wants to die (usually to get out of doing something she doesn't want to) she really doesn't. She isn't ready to and my job is to help her have the most quality of life possible and help her to be ready for death. She has quite a bit of fear and I think she needs a pastoral presence in her life which cannot be me. I am already wearing several hats that make this caregiving challenging. I think what she'd like is to spend as much time in bed as is possible and slowly drift away. Dad, on the other hand, does not want to spend so much time in bed and is fighting aging with all his strength. He needs to get out and experience life and feel strong even though he is slipping as well. They have different needs. and I'm struggling to find a balance that works for both of them. The adult day care is not working since Dad doesn't want to go without Mom and she refuses to get up to go. Two weeks ago I tried all my tricks and was trying to pull her to a sitting position when she started hollering "ow, ow, ow." That felt like elder abuse so I let her lay back down and she spent most of the day in bed. I can't make her get up and now I know how the caregivers at Aegis felt. I used to be able to persuasively talk her into getting up but now she just says "no." Her words to me this week were "no, I'm only going to do what pleases me." Alrighty then....
She's also increasingly disconnected from reality. Yesterday I heard her talking in the bedroom -"are you getting a book for Grandma?" is what I heard. When I asked her about it she said that Bekah was beside her bed and she kept asking me what she was doing. Sometimes I play along with her; sometimes I ask her questions and sometimes I try to reconnect her with reality. In this case, I tried all three and was still unable to get her mind off "that poor little thing under my bed." I finally got her to the bathroom and assured her I would look after Bekah.
Yesterday was also a new adventure in caring for Dad. While he likes to do pretty much everything for himself, he's having a harder time doing that. The adventure yesterday revolved around him being constipated and I will spare you from the details. Suffice it to say that I went a long way into the reality of "how much worse this could get." A fear that I've had to say "no" to since they moved in and I discovered that God gives me the strength and grace I need in very challenging situations. He has also given me a sister-in-law (nurse Heidi) who gets this in every conceivable way and who walked me through the necessary steps. What a gift. I choose to trust that He knows what I can handle and will provide in each moment. Just as He always has.
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