Hi
I don't know if i can be a great deal of help here as the hospice system in the UK seems to be slightly different to the USA but i will try.

Firstly in the UK Hospices are in patient units dedicated to pain management,therapy and end of life care.They also have day therapy units where patients are brought in once or twice a week for respite,lymphoedema treatment and counselling.

A fairly new addition to this service is hospice home care for people who want to remain in their own homes.

Am i right in thinking your hospice care is undertaken at home?

When hospice takes over the first thing that should be undertaken is a full patient history,review of medication and details of family and particular needs and wishes of the patient.Every hospice employs a pain management consultant,and these doctors are specialists in the field of every possible combination of drugs to ensure the comfort both physically and mentally of your loved one,and in the case of terminal care,to ensure the most peaceful,painfree transition that is possible.


Any previous drug regime may be completely abandoned and replaced with one decided by the consultant,taking into account the needs and wishes of the patient,ie wether or not they want to stay fully conscious and aware,wether they prefer to be partially sedated and worse case scenario,full sedation where awareness is suspended.

Terminal cancer and its related anxiety brings with it exceptionally high levels of pain,and what you or i would consider dangerously high levels of medication are in fact the norm,and are well tolerated.I couldn't even begin to comprehend how Robin got out of bed every day and functioned with the levels of fentanyl,morphine,and related meds he was on,but function he did,and was more or less pain free for the majority of his 21 days in the hospice,but his meds were reviewed every day and adjusted if they were seen to be coming less effective.

Robin did not spend one day in bed until the day before he died when he chose to opt for full sedtation because of the size of the hole in his face,the smell,and the intense anxiety brought about by the high risk of thoracic artery rupture.

Linda all i can say to you is that you need to trust in hospice and hard as it may be you need to let go and step back just a little,and let them do what they do best.It may seem strange at first,and for sure if you don't think what they are doing is having a positive effect on carol then question it,but the first few days/weeks may be trial and error until they find the best regime to make her comfortable.

Good hospice care treats the whole family and your well being should be just as important as carols,a good hospice nurse should take the time to sit with you,talk to you,take on board your feedback from carol,discuss you worries and reassure you about treatment plans you may be worried about,but ultimately it should be the best way for you both to travel this most distressing of roads together and in peace.

My thoughts are with you and i will pray you have the strength to do this last thing for Carol xx