Any medical professional can tell you the hardest patients are the ones you're related to. Once you express interest in a degree, the health questions start coming in from all sides. I remember using my special tests book to r/o fracture after my brother punched a wall, digging through an orthopedic text to find the painful ROM arc of my mom's shoulder over the phone, and trying to diagnose a no-longer-present-but-still-bothersome-that-it-had-ever-appeared nodule for my dad- incredulous that this didn't involve a trip to the doctor. But there are limits to what anyone can do, especially from far away.
My dad had a heart attack after I finished my final OT fieldwork. I had several weeks that I was able to spend at home while he recovered. I don't recall doing much during that time except for just trying to keep a close watch on the recovery process, driving him to appts, and encouraging a gradual return to activity. I do remember questioning the MD about the quality of the hospital's cardiac rehab- I didn't want him doing dowel exercises to 90* and 20 mins UBE only- but they had a very good program able to help him return to playing football, teaching full time, etc.
My mom had an injury lately that exacerbated chronic back pain and forced a laminectomy. While I could answer some questions about spinal precautions, home adaptations, I couldn't help her with the insurance issues or prognostic questions like when she could go back to work. It was very hard for me to to counsel her by phone after her surgery despite the fact that I do that for non-relatives everyday.
But the most difficult has been my grandmother-in-law. I can't remember whether it was before or after the wedding that she asked her MD about Aricept because she felt she had memory problems. She had self-diagnosed Alzheimer's Disease (AD) correctly, unfortunately. Our visits were limited due to time and travel constraints, and initially she appeared to have only mild deficits. However, when the disease began to progress, I felt it moved quickly. Environmental modifications went from un-needed to un-beneficial quickly. We made some changes later, like raising the table legs so a wheelchair could fit underneath and relaying ramp specifications for her son to install. The home health agency actually responsible for her care got her a toilet seat with arms and a shower chair. I sent lots of activities and descriptions of how to grade tasks for her caregivers, but they were often too strapped for time to engage.
I got her a bright flowered walker bag as soon as she required a mobility device. However, she never could master the walker usage, and would lean backwards precariously while someone held the walker in front of her- very frightening. It is strange to transfer a family member. Sometimes I tell my patients that OT is "up close and personal" because of the lack of distance required for some activities. Anyway, despite initially being regarded as 'the expert' her caregivers and family that were there everyday were much more effective at her transfers than I was, even if I had to bite my tongue as they were less safe.
I had multiple discussions with my father-in-law about her ongoing need for care- pushing for 24 hour daily caregivers to relieve family and be safest. When her MD pushed for outpatient PT (WHY?!), I tried to relay that home health therapy was invented for the homebound and that bumping her in a wheelchair down a flight of stairs constituted excessive burden. We discussed that PT was not a cure all and that ambulation was getting unrealistic (despite what the doctor thought), but they pushed ahead. It was still sad for me when I heard she was d/c from PT due to plateauing, though I knew it was coming.
From there, the decline moved rapidly. She was already unable to hold a phone conversation, but became unable to stay awake for any activity in front of her. She had a few back-to-back hospitalizations and was sent home on hospice. A few short weeks later, one of the most loving and vibrant individuals I have ever known succumbed to one of the worst diseases of our time. Even though this outcome was expected and in fact certain, I still felt that I had failed along the way. I hadn't been able to adapt the walker to make it easier to use, conduct training with the caregivers, or give her a robust home program so that she could continue to participate. I can't even say that I did my best, as usually I had forgotten planned efforts- like sending her one of my violets. And I felt like I had failed the sweet and loving woman who gladly accepted me into the family.
My best efforts overall were probably with the rest of the family. I tried to encourage my stressed and overworked father-in-law to take care of his health and take time for himself, educate him on resources that were available in the community. I tried to address the frustration of my mother-in-law and explain behaviors that were related to the disease process and no longer under grandma's control. I tried to add perspective in general since the person we had loved was already gone due to AD. But I often felt more like an outside intruder than anything. Her daily caregivers, who had received some minimal education on working with the elderly, were able to handle the entire family's needs very well. Knowing that she was comfortable with "the girls" and the hospice workers is of great comfort and another testament that you should never consider yourself 'above' anyone, they have much to teach you and much that they are capable of beyond you.
I know that failure is a strong word, but I have always been a tough critic of my work. And in this case, where I know that I could've done better and that she deserved better, the sting is especially sharp. It's hard to be the therapist in the family and walk the line between personal and professional. It's hard to do all that should be done and still maintain roles. This is a difficult topic for me since I know the situation will only increase in frequency as the years go by. The health stability of the family is always tenuous, and I just hope each day that my expertise won't be needed.