My Mom has had PPMS since 1999, and is a quadriplegic. In the past year and a half her swallowing and breathing function has become more impaired. Her voice is a forced whisper, and she battled with aspiration pneumonia back in July which she has since recovered from.
A continuing challenge since she returned from the hospital, is to regain the weight she has lost. Her body has always been thin since she became a quadriplegic, with no muscle tissue and little fat, however now she is so thin that even with a special air mattress, all of the bony protrusions on her body have developed stage III - IV pressure ulcers that have worsened over 5 months despite careful maintenance from home care nurses.
The wound specialist tells us that she will not be able to heal unless she puts on weight so there is fat between her bones and the air mattress. The other day I spent 12 hours with her, feeding her every meal via straw and small amounts of soft foods via a spoon. Even with me pushing her she could only take in 1000 calories in the entire day (including 60 grams protein), which is still a 600 calorie deficit to maintain even an 80 pound body.
My Mom would like to live, and we have recently become aware of TPN, or parental nutrition where they put a PIC line into your chest and put nutrients directly into your bloodstream. But it will be two weeks until the doctors have a conference call to discuss this possibility.
In the meantime, I have asked my Dad to provide her PSW's with two bottles of Ensure protein drink to feed her along with every meal, but he balked at that amount of food. He said "that seems like a lot of work and food, just to add 3 or 4 pounds of weight". But three of four pounds of weight could mean EVERYTHING at this point.
I know that he is exhausted and overwhelmed, and has long since lost his sense of urgency for any emergency situations (he never really did have any, even before she got sick), but this could really mean the difference between her life and death.
She is only 62, but essentially now looks like the woman who died of MS, whose family shared photos of her when she was near death: Floria Lormier dailymail.co.uk/health/arti...
Perhaps her quality is reduced horribly, and I should just allow this to happen? Perhaps the TPN nutrition and weight gain would only drag out the healing of the wounds for additional months or years, and cause additional suffering? Should I sound the alarm bells that my Dad is refusing to try to feed her enough to get well?