More about Maureen

I suddenly find myself on the verge of having to make life and death decisions for Maureen. I hate this.

The plan was for Maureen to leave the nursing home and return to her group home on June 1. The house has been remodeled to accommodate the wheelchair so she could live there though not really walking.

June 1 was the Tuesday after Memorial Day. On the preceding Friday she had a “swallow test.” That is, she was fed substances of varying thicknesses and her throat was x-rayed as she swallowed. She last had a swallow test just before she entered the nursing home from the hospital. She did fine. Swallowed everything. This time, not so much. This time she aspirated everything. That is, she breathed in some of everything she swallowed, no matter the thickness, from water to honey.That signifies the deterioration of her physical condition in eight months confined to bed and a wheelchair with minimal exercise during physical and occupational therapy that she didn’t cooperate with much.

The group home cannot take her back unless she has a feeding tube installed – that would mean no food by mouth because all the aspiration of food into her lungs raises the constant risk of pneumonia.

The director of the house claims this is an ethical decision, she can’t ask staff to give Maureen food with that risk. I think it is less the ethics than the constant hassle of treating the pneumonia. She’s had pneumonia once in the seven months in the nursing home. It did not require hospitalization and was treated quickly with antibiotics. Now, in the nursing home, when her breathing gets raspy there are nursing aides to alert the nurses who alert the on-call nurse practitioner or doctor. At the group home there are no medical personnel on site.

I think it should be possible to train a caregiver to be alert to her breathing status and take her to the doctor or Urgent Care but then, last time she was left to languish until her condition was very serious and she had a sharp and caring caregiver at the time so what the hell do I know? She’s remamins in the nursing home.

Her eating is supervised by aides. She is supposed to take small bites, set her fork down after each bite (the other day she asked me if I do that – of course I said, “of course.”) She must chew each bite thoroughly before swallowing. If she coughs she has to stop eating – yes, she had to be told not to continue eating while coughing.

Speech therapy, which was aimed at strengthening her swallow has been discontinued because the therapists believe they’ve done all they can and now she has to practice exercises on her own. The aides, the noble aides, supervise that, too because she won’t do it on her own. (Think of an oppositional 6 year old.)

I eight weeks she’ll have another swallow test. If she doesn’t aspirate the “honey thickened” substances, she can go home. If she does, we choose between the feeding tube and the rest of her life in the nursing home. Because of the constant threat of pneumonia, her life will be shortened.

About the feeding tube she says, “I’d rather die.” She means it. I believe her. For a person with Prader Willi Syndrome, which has as its most prominent feature, obsessive hunger, never feeling sated, always obsessive hunger, to live in a house with others who eat food that can be seen and smelled, without ever eating yourself, would be a fate worse than death. Maureen is not so cognitively impaired that she doesn’t realize what that would mean. Explosive outbursts of anger are another feature of PWS and I can see her ripping a feeding tube out of her body during one. She’s very strong when angry.

She’s going to get additional physical and occupational therapy at an excellent facility apart from the nursing home. I’m hoping against hope that the change will motivate her. She’s perfectly capable of walking, if with some difficulty because of all the weight she’s gained while not using her legs, but she’s not cooperative, she’s sure she’s going to fall and her reaction is to scream abuse at the therapists and demand to be allowed to sit.

When I’m being realistic, I don’t think she’s ever going to leave the nursing home. She’ll have one little case of pneumonia after another until the antibiotics don’t work any more and she gets a serious case and has to be intubated. She will be semi-conscious while on the ventilator and I’m afraid they’ll ask me to insert a feeding tube then. What do I do? She’d rather die.