Betty,

You sister is so fortunate to have you by her side right now, comforting her, hugging her! You are truly a special person for taking on this so important role right now. I know it must be quite a shock to see her like this as it is just as rough for her to be going through all she is right now. Your presence will do great things...for both of you.

You might want to take the time now before it gets a little rougher and sort of negotiate what your sister needs and wants right now. Let her determine (and communicate) what she wants to do and what she would like help with. Sometimes as things get a little rougher, tempers flare and in the case of my mother, we were all doting over her and she resented it because she thought we saw her as helpless. As a caregiver we always want to do so much but I have found it is so much easier to give than to receive. In my case, I reached out to some of my close friends at church and asked them to help me with my lawn. You can ask my wife, this is forbidden territory, usually. Four friends showed up every Saturday and cut my grass, trimmed, edged, etc., and I was so grateful.

I know this is so difficult right now and will perhaps get a little rougher. In time, though, things will get much better. I am praying for a quick recovery and continued healing.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023