To some extend we have settled into a routine and Lois and I share caregiving responsibilities. Now that we have figured out how and when to give pain meds we have had a very good 24 hour period so far; Meaning it was good for Will and for us. I want to run away when he is folding double with pain and I cannot make it stop. At least he lets me rub his back when he is in pain – it sooths both of us. Not having all the hospice support agreements in place is also a source of frustration for me. We are in need of strong leadership to guide us in unity in doing the right thing for Will. Our instincts prompt us to do one thing and yet at this time we are supposed to ignore those instincts. Will is also frustrated (Bored? Scared? Angry?) and is more often moody and rude. In my heart is huge conflict about how to handle him. By nature he is a funny, kind and smart boy, and I am thinking his mood swings must be because of the pain and the different narcotics. Lois reminded me of Dr Andersen’s words two weeks ago ‘ we should continue as normal and discipline him if necessary’. Really? I mean REALLY? Have the ones that have made these rules been in a situation like this? It is getting harder and harder to remind him of his manners – it is easier on my own emotions to remain kind and patient; Just the thought of making him cry close up my throat. Making him cry is not the kind of memory I want for myself! Is it really important to expect him (and hence us) to behave normal when nothing else is normal?
I know there are folks reading this blog who have walked a similar road in the past. Let’s hear it first hand from you, please. And I can reasonably understand that there are no one solution or way to react, but please let me hear from you.
Grandma Sally