Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Therapy - Brain Infections and Rehabilitiation Expectations

Question:

Dear Kathy M.,

My mother had a brain infection two months ago. She survived the experience after undergoing a brain biopsy. After the biopsy, her cognitive abilities went further downhill. She has just finished her antibiotics but for the last four weeks was given tablet form instead of IV antibiotics due to removing her pick line several times. I was told by a nurse that the tablet form is not as effective as the IV antibiotics. Is this true? Her speech is unaffected but she has dysfunction on her left side and would need retraining to use this side of her body.

Also, she is being discharged to a long term care facility and her rehab is being discontinued because they say she has "plateued" the last two weeks. Her participation in rehab is spotty. She is still very confused, cannot control bowel movements, walks 20 paces with a walker at most on occasion, needs assistance to get from the bed to the wheel chair, doesn't remember from one rehab session to the next what she's learned, etc. When I visited her about a week ago she had been conversational to some degree -- more progress than I had seen in her since the biopsy. The subsequent visit she was less interested in her surroundings and my visit. I want to help but am not sure what I can do. She is a MediCal patient and this makes it more difficult to get care.

I would like to be able to contact other people who have worked with patients who have had brain infections and find out what worked for them when the patient was deemed no longer eligible for rehab. Also, any resources specific to brain infection would be welcome. FYI, my mom does need 24 hour care.

Thanks. Risa


Kathy's Response:

Dear Risa,

Thanks for writing. I can answer some of your questions and not others.

Decreased cognitive abilities

After brain surgery, many people notice (or their loved ones notice) a decrease in a variety of cognitive functions, whether this be in the area of short-term memory, orientation, speech, or other things. Did you notice specific areas that were worse? Noting this could be helpful for her rehabilitation team.

Method of medication delivery

You stated, "I was told by a nurse that the tablet form is not as effective as the IV antibiotics," and you asked, "Is this true?"

I am COMPLETELY out of my element her, as I have no medical training. Is your mother being treated by a physiatrist (physical rehabilitation physician) or a neurologist? They should be able to answer this question.

Next step for rehabilitation

You wrote, "she is being discharged to a long term care facility and her rehab is being discontinued because they say she has "plateaued" the last two weeks. Her participation in rehab is spotty."

This is an all-too common response on the part of insurance companies to what I call "BI-Time" ("Brain Injury Time"). You see, those of us with brain injury often recover very slowly; recovery is very often spotty; and insurance claims examiners are inclined to deny services unless we operate on a timetime they consider to be "reasonable."

I was fortunate in the sense that ten years ago, when I received rehabilitation treatment, the insurance company that footed my bill was operating in timeframes of months, not weeks. I understand most insurance companies no longer operate that way. When I was in rehab., I would go for MANY weeks without observable improvement, but over 14 months of rehabilitation treatment, I had recovered enough to start trying to live on my own and work again (five months as an inpatient and nine months as an outpatient). If my therapy had been cut short, I would not likely have gotten back to work and quite possibly may not have been able to live independently again.

I wish I could give you advice on how to deal with/reverse all this. However, in my view, until the insurance business stops calling the shots with respect to brain-injury rehabilitation issues, there will not likely be financial support for as much rehabilitation as a person needs or would benefit from.

Issues

You wrote: "She is still very confused, cannot control bowel movements, walks 20 paces with a walker at most on occasion, needs assistance to get from the bed to the wheel chair, doesn't remember from one rehab session to the next what she's learned, etc."

I don't mean to sound like Pollyanna, but I know a number of people who started out with these kinds of symptoms, and several years later were doing well. Some are doing *very* well. In my view, their progress was directly related to the quality of rehabilitation they received.

What Families Can Do

You wrote, "When I visited her about a week ago she had been conversational to some degree -- more progress than I had seen in her since the biopsy. The subsequent visit she was less interested in her surroundings and my visit. I want to help but am not sure what I can do. She is a MediCal patient and this makes it more difficult to get care."

You may have to initiate a home-based, family-run rehabilitation (funded) program for her. This may or may not include professional therapists. You may or may not be in a position to do this, but if you contact other families who have done so, you will be in a better position to judge. Unfortunately, many families are often left with this as their only viable option (to long-term nursing home care).

Each family approaches home-based rehabilitation differently, and to find out more, I would suggest that you join one or more caregiver support and discussion lists on the internet. I facilitate one called ASSIST-TBI. Sign-up information for this list and others can be found at this site's support group list section. See: http://tbimo.org/groups.asp#internet

Networking

You wrote: "I would like to be able to contact other people who have worked with patients who have had brain infections and find out what worked for them when the patient was deemed no longer eligible for rehab. Also, any resources specific to brain infection would be welcome."

By participating on one or more e-mail discussion and support lists you will be in immediate contact with other families (worldwide) who have "walked the walk." Whether your interest is in brain infections, cognitive rehabilitation, physical rehabiltation, MediCal payment, or home-based rehabilitation programs, odds are that you will find people who can help you.

I wish you the best, and also wish I had better news for you in terms of rehabilitation options. Maybe a family member on one of the lists has better news or more up-to-date information.

Hope this helps,
Kathy M.

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