Seeking Help when there is none….
i am on a ledge…. Dan has taken to refusing his meds , eating and drinking although i will hook the IV up later tonight …. He is feeling done with Life -- I don't know why , i really don't other than the control i have taken from him in terms of returning to work… yes he wants me home, but the constant pallor was not a environment for anyone to live in full time 24/7 … Even my Beth is seeking refuge elsewhere - she has decided to move out on her own…. which i completely understand. my son and daughter and law have been up helping as much as possible - the new gal is learning quick - sink or swim style….. and the " family is so sucked dry of "life" that what do we do? - I took him to a nuero appt and not much accomplished since he was non verbal and we talked on how the psych evals went back about a year ago - since no one in ND specializes in dDans communication issues and is highly specialized what do you do? a trip to MN is another undertaking that never ends up going well… and i have found there are no elusive unicorns out there in terms of a person who can help… Dan is on a 24 hour medication strike as in he has missed 3 doses of all of his meds 3 meds times in a row….. he won't eat, and as i said i will see how the hydration in the port goes … i am not anxious to flush his system sot much thinking what ever residual meds are floating might be providing some sort of benefit to him? These are big ( way to big) life changing decisions he is making and i don't know what to do…. i can't get him in to see his pcp for about a month ( really - that helps no one - Docs here are dropping like flies with them all leaving the current healthcare systems provided in ND) so all the docs are being taxed to the brink of what to do- i mean how can any decent level of care be provided to an acute/ chronic situation like dans -- its not the docs fault she does her best but with dans issues has to see dan physically and can't just rubber stamp anything… i have an appointment with his nurse case manager tomorrow and we can discuss - who knows?? --- Dan will start having some fairly large seizures soon since he is refusing his meds ---- and the plan of action for that will be call 911 - since these won't be the break through these will be the full blown seizures … So now i am back to peg tube - do I don't I ???? what is ethically right , ethically wrong? i am struggling with being part of anyones end of life decisions - but also understanding the importance of his "rights" --- but Dans life in reality can be much better when he chooses it to be … or can it ? i don't know, i am not walking in his shoes ….. i know the pain and dispaire he is / has caused this family is almost daily is real and affecting my health tremedously . I feel so crappy and tired and stressed … I am so fortunate for the kindness of my employer but even for his sake - i am subpar - not who i intend to be- he has made a investment in me and i honestly want my job ----- so maybe my next move is hospice ? Debbie when you have time call me -- so few people read my actual blog i feel comfortable writing my # but if it gets taken down and you no longer have it call colleen --- please pm for phone number ---- help --- SOS -- SOS… and Beth has her graduation party this weekend - i have promised her repeatedly and invites are out there , so i can't take another thing away from her ??
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