Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts

Thursday, November 10, 2011

Piecing Together the Puzzle of the Brain

Robert has had uncontrolled epilepsy his whole life.  At 46 years old now, after numerous head injuries (even with a helmet – yeah, that’s a neat trick), surgeries and medications, Robert is not quite the person he used to be. 

Robert finished high school and even took a few community college courses many, many years ago.  Now, he falls asleep reading a book after two pages (I’m trying to not take that personally since it was my book) but he can finish word search puzzles like there’s no tomorrow.  Most days he can’t remember what he had for lunch and sometimes he even forgets he ate lunch (even though he always enjoys eating it).
Robert was able to ride bikes when we were kids, figure out the bus system as he got older (he never was allowed to drive although our dad let him drive once because he was irresponsible that way) and was able to walk for miles to the mall or to the movies.  Today, he uses a walker to keep his balance, drags his right foot while walking and occasionally (okay, often) trips. 

For many years, Robert was able to manage his own medications (taking them and picking them up from the pharmacy) and all of his doctor appointments.  That would be virtually impossible today and so he has people give him his meds on time and I take him to his appointments. 
The decline in his motor function and cognitive ability has been dramatic when comparing him at age 20 to now at age 46. 

I want to know why.  Is it the uncontrolled seizures?  They can, after all, cause brain damage.  Is it all the head injuries?  Perhaps the medications are clouding his “normal” functioning?  Maybe it’s something else completely.   
Robert’s neurologist gave us a referral to a Memory Specialist and to a Neuropsychologist.  The appointment with the Memory Specialist was on Halloween; we see the Neuropsych in a couple of weeks. 

We (as in I) filled out a lengthy form before the visit and answered a gazillion (I counted) questions about family history, present behavior, past accidents and surgeries, current medications and goodness knows what else. 
The Memory Specialist arrived in the tiny exam room with another neurologist and a med student.  The three of them sat across from us and asked Robert several questions, glancing over in my direction every now and then for confirmation of his answers.  They asked him to remember 3 words but he only remembered one after being given multiple choice answers.  He couldn’t remember the city he lived in but remembered his brother lived in Danville.  He knew the date but thought it was Sunday instead of Monday.  He didn’t know the party affiliation of the president but guessed it was “the American party.”  He did some math problems (subtracting backwards, mainly) and I was a little worried about this section myself (because, of course, I was silently answering all the questions and remembering all the words just to be sure I could).

Robert was asked to write a sentence.  I had no idea what he would write or if he would be able to do so and I was fretting like he was taking the SAT and his college career depended on it, but as I glanced over at his glacially slow handwriting, I saw a sentence take shape.  “God loves you.”
Of course.  What else would he write except maybe, “God Bless You?”

The doctor then did the physical exam and it became very obvious very quickly that Robert has a huge vision gap on his right side (that explains so much – running into people, doors, anything on his right side!).   The field of vision on Robert’s right side is so compromised that he couldn’t see the doctor’s fingers when he held them up.  This was probably the most useful information I got out of the appointment because it’s information all of us can use in order to help Robert make safe decisions when walking around.   Heads up to those visiting: don’t stand to his right!

Monday, June 27, 2011

Tools for Your Caregiving Tool Belt – Navigating Care Facilities and In-Home Care

Yesterday, we added education to your caregiving tool belt (and I’d like to thank Denise Brown of Caregiving.com for coming up with the awesome concept of a “caregiver’s tool belt”). It’s reassuring to know when caring for your loved one you are not alone and there are resources out there to educate you about the particular disease or condition your loved one is living with. Knowing as much as possible about what you and your loved one is dealing with will help so much when talking to medical professionals – throw intimidation out the window!

The focus today is on resources available when searching for additional care for your loved one. This can include either in-home care or a care facility.

But first comes the decision . . .

The Decision.

The first decision to be made is the type of care needed at this time. It’s important to remember the phrase “at this time” because carees will have different needs as their disease or condition progresses and our ability to help may change over time as well. It’s okay to admit this. All you can do is manage what is happening “at this time.”

Family Support. Although you, as the primary caregiver, are the one making the decisions regarding care it is important to seek out others to help make the best possible decision. If feasible, enlist the support of other family members to help decide if additional in-home care is needed or if it’s time to move your parent (or sibling or grandparent or other caree) into a care facility.

Each family is different but keep in mind offers of help may not come streaming in. As the primary caregiver, it may be necessary to set forth specific tasks each family member can help with. Many people will make vague offers of assistance but unless given a specific task (“please call three care facilities by Wednesday”) it won’t get done.

Wednesday, June 22, 2011

Potato. Table. Green.

Potato. Table. Green.

Remember those words (there’s a quiz later!).

The countdown is over! Robert saw his fabulous neurologist with the awesome Canadian accent today and the results are in (although so are a lot more questions).

The MRI showed no stroke (yay!!) and actually indicated no change whatsoever since his MRI of two years ago (there goes my medical career). The “large area of encephalomalacia” that sounded so concerning was due to his brain surgeries of several years ago so wasn’t anything new.

Phew!

So am I nuts for thinking Robert has declined? (For those who do think I am nuts, sorry to disappoint you but this isn’t your proof). Lady Neuro notices the change, too, when Robert can’t walk across the room to get to the examination table without a great deal of assistance. She puts Robert through a battery of physical and mental tests with me hovering, ready to jump out of my skin to help (but somehow restraining myself).

I’ve moved from Helicopter Parent to Helicopter Sister.