Find Senior Care (City or Zip)
Join Now Log In
L
Lmlocke Asked November 2020

My mom is in end stage of Parkinson’s disease. She is no longer able to swallow laying down. What has your experience been like?

Bed ridden- unable to move- swallows only when sitting up but a struggle. She zones in and out.

Lmlocke Nov 2020
I should of explained a little more- I’m sorry. She’s on hospice and has been now since January. She has not eaten food since December and gets her nutrition from protein shakes that she drinks with assistance. She spend her life in a mechanical recliner chair and sleeps on her side propped. She can’t move at all my herself and is at the point where she just zones in and out. My sister is a nurse practitioner and takes care of her and so does hospice. Today was even harder for her to get her shakes down sitting up with assistance. She was in stage two Parkinson's a little over year ago- but strokes followed by days of seizing resulted in rapid deterioration. I know In my heart this is the start of the end- and i guess I an Just wanting to know what other people’s experiences were with their loved ones to try and prepare myself for how long i have Left with her. She lives across the country and i fly Every month to see her. I’m only 36 so I’m thinking just knowledge and others learned experience will help me cope and process this grief. I feel Like i am Grieving a death that hasn’t happened yet- if that makes sense. This all happened so quickly.
AlvaDeer Nov 2020
LM thanks so much for the extra information. That helps a lot. So sorry for your grief, and you explained it exactly as it is. On the Forum man caregivers are dealing, some 24/7 with elders who are but a shell of what they were. They are just as you said, grieving a death that hasn't happened. There are so many here who can identify with the grief you are going through.I am so very sorry. Just don't force stuff she no longer wants. Eating at this point is only prolonging her misery. Let it be now exactly as she wishes it to be, to the best of your ability to recognize that. I am so grateful for your Sister and that you and she are close in this loss, and grateful you are able to see her so often as you are. You have hospice. You are doing everything you are able. Heart out to you.
AlvaDeer Nov 2020
Very dangerous now to swallow laying down. And that would hold true for any elder, no matter having diagnosis or not. I am sorry it is so difficult to get her in the sitting position, but that is crucial. Has she had a swallow Eval from an OT person? What sort of food is she eating now and is her intake when all's said and done OK? Is there a great weight loss. Have you discussed end stage care with her doctor, a palliative care doctor or hospice?
So much now on your plate and I am so sorry, but do know at this stage aspiration pneumonia is a danger, and it can quickly kill.
Lmlocke Nov 2020
I should of explained a little more- I’m sorry. She’s on hospice and has been now since January. She has not eaten food since December and gets her nutrition from protein shakes that she drinks with assistance. She spend her life in a mechanical recliner chair and sleeps on her side propped. She can’t move at all my herself and is at the point where she just zones in and out. My sister is a nurse practitioner and takes care of her and so does hospice. Today was even harder for her to get her shakes down sitting up with assistance. She was in stage two Parkinson's a little over year ago- but strokes followed by days of seizing resulted in rapid deterioration.

ADVERTISEMENT


ADVERTISEMENT

Ask a Question

Subscribe to
Our Newsletter