This message was posted by a user wishing to remain anonymous
Recently admitted a 69 yr old with Parkinson’s to hospice care. Pt/fam have lived with the diseases for many years. He recently was admitted to the only SNF in our little town due to wife not being able to care for him on her own at home. The SNF staff do the best they can but sometimes it’s not the best care. It is difficult for spouse when she visits him and his needs aren’t met; wife feels guilty for placing him; they have young adult children who visit but live hours away are struggling; one of the children is getting married in a month; pt won’t likely be able to go to the wedding and family doesn’t know if they want him to go either; pain/behavior is somewhat managed.
I have spoken with wife around feelings of lack of control and helplessness. Wife is able to verbalize anger that they are being robbed of their retirement years together; it is hard to assist wife with what to anticipate as far as the disease process as people don’t die from Parkinsons but from symptoms related ie falls, pneumonia. Of course, we never know truly how long someone has to live but can give estimates based on symptoms we see; however PD is a whole different beast.
Feeling inadequate on how to help/support this family in their hospice journey. Thoughts?