sometimes doing the right thing isn’t what i want to do

“the two top reasons a parkinson’s patient ends up in the hospital – falling and choking.”

my mom’s new speech therapist, jim, is nice enough, but his manner is rough, direct and no nonsense.  nothing he said was what i wanted to hear.

we are now supposed to be pureeing her food or cutting it up into teeny tiny pieces.  but my mom loves to eat!  she loves the feeling of chewing her food, and being able to savor the textures and the densities of the different foods. she likes to taste the juice as it oozes from the bite.

we’re no longer to let her feed herself.  we have to spoon feed her. but she loves her independence and likes to pick which food she wants to put in her mouth next.

we’re not to let her take two hours to eat.  we should be spoon feeding her, and moving the process along. but my mom enjoys the eating experience.  it’s not a ‘process’, it’s precious appreciation for one of the few activities she has to enjoy.

we’re not to let her drink from a straw any longer.  we have to give her tiny sips from a tiny cup. but she likes being able to manage her sips through a straw. she’s not a lover of water and we’ve found that she drinks so much more water if it’s through a straw.

no, she can’t have a straw and she can have any liquid she wants, including coke.  are you serious?  “give her any liquids that will get her to drink.”  maybe that’s her reward for having to give up all her independence.

‘drink and eat whatever unhealthy foods she wants, at least she won’t choke while it’s going down.’

who was this guy? honestly, i wanted to stomp my feet and ask him to leave, but i knew in my heart that he was trying to help us, help me, prepare for the inevitable.

i had to be in a place of acceptance.  my mom’s parkinson’s is progressing, and she’s losing her ability to swallow, and she’s choking on her own saliva.

i love my mom so much and of course i want to keep her safe, but actively taking away what little independence she has left, just breaks my heart.  “at some point you have to take the keys away from the driver” – we’re in the driver’s seat now, only she doesn’t even get to tell us where she wants to go.

4 thoughts on “sometimes doing the right thing isn’t what i want to do

  1. I’ll be praying for you Manette to be able to let go and know we are not in control and just give Love and more Love!!! That’s what she will need more of while she is still with you! I think a mom is the only One we have that gives us Unconditional Love!!! Love you and reflect on the good times you had with her…

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  2. Dear Manette, of course you know I’m on the PD journey with you. Dave is 15 years out now and thankfully is able to have some, though tiny, level of independence. Forget what the “support” person told you. Life is short and any little bit of happiness should be applauded. Let your mom live her life the way that brings her the most comfort and joy, so that when she leaves this world she will do so knowing that the she was loved and allowed to live life on her own terms. The need to protective and over-protect is huge…..but, my advise is to surrender to life. Let each day play out the way it is suppose to and to allow your mom to do the same. I love you dearly and care about you immensely. I pray that you and your family find peace and love along this difficult path.

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    1. oh dear sweet tracey…thank you so much for your precious advice. I agree with you!…my dad so wants to over protect, but if she’s not enjoying her time here, what’s the point? I think about you often and hope you and Dave are doing well. How’s lisa? You are one amazing woman Tracey and I so appreciate your advice! thank you thank you thank you!

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