Dealing with difficult family situation

Hey Guys….we’re almost there!!! I hope you’re all going well with PCR prep.

I’m going to discuss my patient who has been diagnosed with hereditary spastic paresis. I have written a previous blog about her condition, but I will give a quick review to her situation. She has been noticing a decline in her functional abilities over the past 12 months due to progressively diminishing strength and increasing tone, particularly in her lower limbs. She has remained independent with her mobility, using a manual wheel chair while at home and doing all transfers and bed mobility on her own. However, these tasks are getting more and more difficult as she gets weaker. Her husband has been helping with her ADL’s (dressing, personal care, etc.), but is quite frail and has been told he should no longer assist.

Over our last 2 weeks working together she has mentioned, and demonstrated an increase in tone and decrease in strength in her hands (L)>(R). This has caused further problems with her functional ability as she can no longer rely on her upper limbs with transferring (which was a very large part of her transfers). She is also having trouble feeding herself as she can’t hold her utensils very well. This progression to her upper limbs was sudden and unexpected, as she was told that this progression would not occur for ~30yrs after her diagnosis and initial deterioration of her LL’s. Thus, she would most likely not have to deal with it as she was diagnosed when she was ~70 yrs old.

As her condition is becoming vastly worse in a short period of time, my patient is very interested in going into a nursing home, as she can no longer care for herself and her husband isn’t fit to help her. She has carers come to help her bath and dress, but are not there 24hrs. She feels she now needs 24hr care, to ensure she can maintain adequate safety and hygiene.

Unfortunately, her daughters and husband do not agree and feel she would be much happier remaining at home. We would spend a large portion of our sessions discussing her need for extra care and the benefits, both physically and emotionally, of being in a nursing home where she could be at ease and not worry if she was going to make it to the toilet on time, for example.

I discussed this situation with my supervisor, who then got in contact with her specialist regarding her further deterioration, but I’m not sure what will be done with regards to her living arrangements. I am not sure what my position is, as a physio student, to recommend to her family that she investigate a nursing home. I’m also not sure how I would handle this recommendation to a family who is strongly against it. They don’t seem to listen to her when she says that she would be happier there, would they listen to me? How would you guys handle this situation?