10.16.2010

Struggling as an OT for my family

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.

9 comments:

Chris said...

The story has depth under your words - and I know that. There weren't just back to back hospitalizations and hospice referrals, because those are just things that the clinicians call them. Even when we are living the nightmare sometimes we call them those clinical names too - because we have some training and a mindset that drives in that direction.

If we were to 'lose' that clinical experience we would name them as they are: they were scary times, full of uncertainty and full of worry and full of sadness and probably even mourning. Those are tough places to walk - I know.

These are personal and professional quagmires. I suspect that at the end of the day if we can say that we did our best and that we loved as fully as we could then everything else can be left to the hope that time will heal, maybe some - but probably never enough.

Peace to you,

Chris

Christina said...

I commend you for sharing your personal story, knowing this is a subject that has been difficult for you to come to terms with.

I am an occupational therapy student and I appreciate your thoughts and opinions about your unique exerpience. I encourage you to not beat yourself up though. I think your right about being your own worst critic; however it is important to remember that you did your best. AD is a tough diagnosis when one is trying to educate new ideas such as safely walking with a walker because it is such an unfamiliar task.

I think you taking the time to be involved and supporting your mother was the best thing for her and I'm sure that is what made her comfortable.

Christina said...

I commend you for sharing your personal story, knowing this is a subject that has been difficult for you to come to terms with.

I am an occupational therapy student and I appreciate your thoughts and opinions about your unique exerpience. I encourage you to not beat yourself up though. I think your right about being your own worst critic; however it is important to remember that you did your best. AD is a tough diagnosis when one is trying to educate new ideas such as safely walking with a walker because it is such an unfamiliar task.

I think you taking the time to be involved and supporting your mother was the best thing for her and I'm sure that is what made her comfortable.

Jennifer said...

I'm an occupational therapy student at Utica College and I have to say it takes courage to talk about the struggles within your family that pertains to your profession. It seems to me that you are beating yourself way too much and not giving yourself enough credit.

I know those times were tough because I have a grandmother who has had 2 heart attack and a grandfather who has Parkinson's disease. To this day I really haven't been involved in helping my grandparents in the struggles they are facing. I know part of it is that I'm still in school and I really don't see them that much however, I know I could be doing more to help them.

There is only so much you can do. Everyone has their own lives and for you to help out your grandmother-in-law goes to show who you are as a person. Even though some of the techniques you tried to help her with didn't go as planned, it doesn't mean that you failed. Not everyone will be successful or have enough time with the task at hand.

I also want to point out that you gave one of the most beneficial pieces of information to your father-in law which was education on the community resources and to make sure he takes care of himself. A lot of people don't know the community resources available to them and many people don't take care of themselves if they have to take care of someone else. So, in that sense you have contributed more than you are giving yourself credit for.

Take Care,

Jennifer

Kaelynn said...

After reading your blog post I really found it very insightful and courageous to admit what you have written. Coming to terms with the reality facing a family member must be very difficult. I am an occupational therapy student, and I have honestly not been in this position thus far in life, so I can only try to imagine what it is that you are facing. Families are incredibly valuable to us and to feel as if you are not giving as much as you can to help them in their time of need must really feel discouraging. Due to the fact that you are an occupational therapist who has a strong presence in the health field, I can understand what you mean by feeling like you need to care for your family member just as you would your everyday clients, if not to a higher degree. When it comes to family members, it must be an entirely different boat though.
I really like the point that you made about making sure that your family member is receiving the best care possible. Due to the fact that you have experience in this area you sound like you have made great ‘on-target’ recommendations. You really made that point when you stated the example of your father receiving care following his heart attack. I think that as an OT we are lucky because we know what ‘best practice’ is, and we can be advocates for just that, for our family members, clients, and ourselves. From reading your post, I would like to remind you that we can’t always do everything, but what you have done for your family members is very commendable.
You make a great point by encouraging your father in-law to become involved in the community and to keep active and take time for himself. This is so crucial and I think that is the best advice that you could give him. We are all our own ‘toughest critic’ that’s for sure. I know the feeling of “I think I could have done more or better.” At the end of the day you just need to remind yourself that you did all that you could.
You really made great recommendations for your family members throughout this post. So, as the other bloggers have told you, don’t beat yourself up and be so hard on yourself. Rather, you should give yourself a pat on the back for advocating and offering the best advice that you can to your family members and those caring for them. I truly hope the best for your grandmother and family members who are going through this tough situation.
Take care,
Kaelynn

Kate said...

I am also an occupational therapy student. Your story hits home in some ways and also makes me think. My mom had MS (and passed away before I graduated high school). Her courageous battle with the illness was what motivated me to go into occupational therapy.

It is not always easy to discuss our personal issues but I really appreciate your discussing this story. It is a reality that many of us who are occupational therapists or going to be occupational therapists are likely to encounter situations like what you have shared. By you sharing this story I imagined myself in this situation. I am sure I will encounter something much like this and I know it will be hard.

By sharing your story, I'm sure you have brought some comfort to other OTs who have gone through similar situations but may be too uncomfortable to share their story with others.

I know from my personal experience, it is so easy to look back and think, "I could have done this" or "Would the outcome have been different if I did this?" It is so easy to get caught up in the what if's and should have's, but remember that you are only human and there is only so much you can do. I am sure it was hard to juggle being an OT, taking care of a family and caring for a family member on so many different levels. It is admirable how much you did do for your grandmother-in-law and I think you need to really focus on the things you did do as opposed to what you could have done differently. From what you wrote, it appears you really put in a lot of time and effort to be her advocate and provide the best possible care. She was very lucky to have you on her side.

By posting your story, I am sure you have brought some comfort to other individuals who have gone through this situation. You may never know how many people this story has effected.

Kate said...

I am also an occupational therapy student. Your story hits home in some ways and also makes me think. My mom had MS (and passed away before I graduated high school). Her courageous battle with the illness was what motivated me to go into occupational therapy.

It is not always easy to discuss our personal issues but I really appreciate your discussing this story. It is a reality that many of us who are occupational therapists or going to be occupational therapists are likely to encounter situations like what you have shared. By you sharing this story I imagined myself in this situation. I am sure I will encounter something much like this and I know it will be hard.

By sharing your story, I'm sure you have brought some comfort to other OTs who have gone through similar situations but may be too uncomfortable to share their story with others.

I know from my personal experience, it is so easy to look back and think, "I could have done this" or "Would the outcome have been different if I did this?" It is so easy to get caught up in the what if's and should have's, but remember that you are only human and there is only so much you can do. I am sure it was hard to juggle being an OT, taking care of a family and caring for a family member on so many different levels. It is admirable how much you did do for your grandmother-in-law and I think you need to really focus on the things you did do as opposed to what you could have done differently. From what you wrote, it appears you really put in a lot of time and effort to be her advocate and provide the best possible care. She was very lucky to have you on her side.

By posting your story, I am sure you have brought some comfort to other individuals who have gone through this situation. You may never know how many people this story has effected.

alhite said...

First I want to say thank you for sharing your personal story as a way for other OT's to reflect on your actions and their own. I also agree that you are being very hard on yourself and you did provide good care to your family in their time of need.

I am a Utica College OT graduate student and I understand what you mean when you said that once you declare a major the health questions do start coming. Many of them I am either afraid to answer or embarrassed if I can't answer but then I try and remind myself that I am still learning and every person is different.
There were several main thought that came to my mind as I read your post and I want to say that I can sort of relate to your story because my mother has MS. Though she doesn’t often ask for my input I always feel like I should be doing something to help her. Why is that? It seems so different with family members. We are taught in school how to recommend help to patient’s family members and treat patient of our own so what makes it different when your family asks for help?

I don’t know about anyone else but I try to keep in mind that whenever I interact with a person that they are people and they are someone’s family. This brings a whole new meaning to my thought when you consider that you or I is the professional as well as the family member. So which role do we take the professional or the family member? Maybe it up to your own personal judgment and you don’t really know the right answer, buy we do the best we can.

Thank you for sharing,
Alisha

Cheryl said...

Thank you everyone for your thoughtful comments and emails. Obviously, this was a tough situation and I appreciate the support.