Boo at Thanksgiving

     Now that it's almost Christmas, I'm finally able to post Boo's Thanksgiving photo.  I guess anytime you tell him it's time for dinner, he gets excited.

We're Still Alive!

Yesterday with my son who was visiting.

Our inside cat

     I'm sorry it's been so long since I've posted anything.  Moving, getting used to the protocals with new doctors and clinics, adjusting to new medications and adjusting the dosages and timing of others have taken a toll on both of us.  Boo is adjusting well.  He has more good days than bad ones.  Our biggest struggle right now is adjusting to unexpected changes to Boo's routine---changes that seem small to me often seem huge to him. 

     Boudreaux is still Jim's companion.  Since we moved, Boudreaux has been an inside cat.  He managed to escape Thursday when I was at Duke.  Evidently he went out the bedroom window and right under the house.  When I came home, he came right to me and has refused to go near an open door or window.  Boo has spent hours telling Boudreaux how imporant he is and how much we love him and worrying that he'll run away again.  (A side note:  Boudreaux generally doesn't like to be held.  Boo can pick him up anytime and rub him.  Usually when Boo calls Boudreaux, he comes running.  Coming when called is not a reliable trick and it only works with Boo.  I guess he's always going to be Boo's cat.)

We'll Miss You!

Sacred Heart Catholic Mission

Boo after Mass

     This was our last Mass at Sacred Heart before we moved.  We will truly miss this warm, caring parish and will always treasure our wonderful friends.
     We have finally moved and are unpacking and settling in.  Boo is calm and happy.  He talked to some of his friends from Hillsborough last night.  Boo (and I) are enjoying our "adopted family" here.  Boo is quite content with a Chihuahua on his lap while he listens to the TV.  Boudreaux has not adjusted as well.  Bou spent the first day behind the sofa.  Today he's in our bedroom---calm, quiet and content in the knowledge the dogs are on the other side of the door. 
    I'll post pictures and further updates soon.  Back to unpacking!

Packing

     Please excuse my long "vacation."  Right now we are packing to move closer to Duke.  As much as I hate moving---chaos, disorganization, etc., we are both looking forward to being closer to some old friends. 
     Boo is handling all the packing and chaos well.  I've tried to confine most of the chaos to the front of the house which we don't use anyway.  Thus far, I've managed to continue with the same pharmacy for Boo.  They deliver to the house.  We  can still use the same service when we move---yeah!  I plan to have all his six month blood work completed before we move and a hard copy of his medical history in hand when we leave. 
     Although I will miss Boo's doctors here, there are two major medical centers within fifteen minutes of the new house.  So...I'm going to try to "interview" several practises for Boo on the phone to narrow the search for a reputable practise.  I've also called several friends in the area who are either RNs, work with the elderly or care for elderly parents to get some recommendations.  We'll see...
    

Break Time

Earlier this month.  He was in desperate need of a haircut!

     I know it's been too long since I've posted.  Somehow life seems to have a way of interfering with my best laid plans.
     Boo was hospitalized for a few days after one of his BP medications was omitted.  He's taking it again and his BP has responded.  We are taking a break from trying to reduce his BP meds right now.  He began losing some kidney function according to blood tests.  So, one of his diabetic medications was discontinued and a different one begun.  His BP and glucose levels are great!  I can't monitor his kidney function as well at home.  At his next doctor's appointment, his kidney function test will be repeated. 
     Boo's appetite has returned!  He is on a 2,000 calorie low salt, carb conscious, diabetic diet.  I use a spreadsheet to keep track of his sodium, carbohydrate and calorie intake daily.  It's become second nature now, though at first it seemed very regimented.  I keep a tray of raw veggies in the fridge with dip that he can eat anytime.  Fresh fruits I hide.  He'll eat every one in the house in one sitting if not monitored---and that plays havoc with his blood sugar.
     We have been attending Sacred Heart regularly.  At Boo's doctor's suggestion, Boo and I sit on the front row.  Being closer to the front helps him to focus and keeps him from seeing all the people present.  Father John comes over to give Boo communion before the other communicants and comes to bless him at the end.  Boo seems to be very comfortable with that routine.  Yesterday he actually talked to some of the parishioners as we were leaving!  He's never done that willing before and I haven't pushed him.  Sacred Heart is such a loving, welcoming community that I'm glad he's responding positively.  He definitely enjoys going to Mass.
     I probably won't be posting as regularly for three to four weeks.  I have a few health issues and I need to work out a treatment plan AND ease Boo into a new, hopefully brief, routine.  I will try to post when I can.

Another Power Outage

     For the second time in five days we've lost all power for several hours.  This first time was in the daytime and, while it did get hot, Boo managed the disruption quite well.  Because Boo is listed as disabled with the electric company, someone from the company calls with regular updates on the outage, someone comes to the house if the outage is more than an hour and a half to make physical contact and offer appropriate services (use of a generator, an ice chest with water and transportation to the emergency room or an air conditioned shelter).  I was impressed with their diligence.
      Last night the power went out again.  Once again, the electric company made repeated contact and offered services.  I thought everything was going well.  Boo had eaten dinner, bathed, was dressed for bed and very calm.  He went to bed with no problem and slept---at least I thought he was sleeping.  I stepped out on the back stoop to give one of our elderly neighbors batteries for their flashlight.  Boo got out of bed and walked out the front door with his rolling walker.  (How did he manage to open the front door?  It isn't easy.  How did he manage to get out the door so quietly?)  However he did it, he was out alone in the dark and I panicked!  Boo was safely found four doors from our house sitting on his rolling walker beside the Methodist church---by a utility worker who stayed with him until I got there.  Boo was on his way to Mom's house because he thought she had power.  We were given a ride to Mom's house where  Boo was checked by EMTs.  He was fine.  (That made one of us, I was a basketcase.)  Boo ate a snack and went to sleep in a recliner.  I have had enough power outages to last the rest of the summer. 
     Today Boo is calm, alert and happy.  He doesn't have clear memories of last night.  Some days and nights are more interesting than others.  I'm voting for less interesting days and nights for a while!

Difficult Wednesday

     Wednesday was one of Boo's more difficult days.  I woke Boo, went through our usual morning routine and made sure he was ready for a routine visit to his primary care doctor.  He complained that his legs felt weak, but seemed to walk normally---albeit more slowly than usual.  By the time Boo saw the doctor, he was obviously walking very slowly and complaining that his knees and legs felt weak.  His doctor eliminated another medication and examined him.  (OK, not in that order.)  Because Boo didn't want to be admitted to the hospital for observation, we went home with orders to report to the hospital immediately if his leg weakness worsened or if it had not improved this morning.  Boo slept Wednesday afternoon, woke for supper and a western, slept again until time for his bedtime medication, talked to Boudreaux for a little while and slept all night. 
     This morning Boo woke and did some gentle stretching exercises, ate breakfast and took his medication.  Then he announced that he was taking a walk before it got too hot.  I called one of my cousins to ensure that she'd be able to bring us back home if Boo overestimated his abilities.  Boo walked four blocks with no problems.  He did walk more slowly than usual.  Just what was going on yesterday?  I really don't know.  All I know for sure is that things seem to be back to normal.

Visit to Primary Care Doctor

     Yesterday Boo had a rough day.  After several weeks of few, if any, mobility problems, Boo had major issues standing and walking.  He kept telling me that his knees and legs felt weak.  He had a regularly scheduled visit to his primary care doctor yesterday

Dentist Visit

     Well, the good news is that nothing appears to be wrong with Boo's dentures and he's quit taking them in and out several times daily.  The bad news is that the dentist was definitely a BAD experience.  The dentist was impatient and yelled at Boo.  Naturally, we will never return there.  I wish there was a way that we as patients could rate medical professionals---ability to communicate with patient and family, time spent waiting in office for scheduled appoiintment, professionalism of office staff, knowledge of community resources and follow up with test results or patient questions.  I am more than willing to work with many less than ideal situations.  Knowing patient identified strengths and weakness of different doctors, medical practices and hospitals would help me be aware of what I need to follow up on myself.  For example, if there tends to be a long wait time in the doctor's office, I can schedule appointments first thing in the morning.  If follow up on test results is an issue, I know to ask how long it usually takes to get the results and then call myself.  Some things are not negotiable.  I expect a professional to behave in a professional manner.  I expect the doctor or nurse to be able to clearly communicate with Boo and with me.  I expect an effort to communicate with Boo.  Some days he can communicate better than others, but he needs to be acknowledged.  I expect to know what new medications are, hopefully, going to do and possible side effects (major ones).  I also expect either the doctor or the nurse to ask if there are any other issues or any questions.  End of complaints!  ***Most of Boo's doctors have been great.  There have only been a few really bad experiences.

A Long Night for Boo

     Last night was difficult for Boo.  He was restless and uneasy.  Even with medication to help him rest, he woke frequently and wanted assurance that everything was alright.  His blood pressure and glucose readings were both within normal limits.  He wasn't particularly hungry or thirsty---although he did finally agree to eat some yogurt and three peanut butter crackers about 3:00am.  He had no pain anywhere.  Who knows?
     This morning Boo took his dentures out four times.  There are no visible sores or blisters in his mouth and he says his dentures aren't bothering him.  Because  Boo can't always tell me what's bothering him, I try to pay attention to what he does.  I made an appointment for him to see a dentist.  It took three different dentists before I found one willing to examine Boo and take his disabilities into consideration.  Having learned the hard way that many medical professionals are (sadly) not very considerate of patients with disabilities, I question new doctors BEFORE they see Boo.  It's easier to avoid an unnecessary bad experience than to deal with the aftermath.  Tomorrow Boo will see the dentist.

Evening Walk

Starting his evening walk

Still smiling for the camera

     This evening Boo finally relented and let me take a couple of pictures.  It had cooled off a little and he was anxious to take a walk.  Tonight he was fascinated by Mom's sweet gum bush.  I think he just realized it smells good. 
     One of the neighborhood children demonstrated his bike riding skills.  The child had just learned to pop a wheelie---and Boo encouraged him!  I do hope his mother doesn't get upset about that.  Boo talked to the young Evil Knievel about fifteen minutes---which is a major accomplishment for Boo.  He's aware of the pauses in conversations when he searches for words and seldom initiates conversations with anyone he doesn't know for that reason.  An accomplishment a day for two days in a row!

Tying Shoes

     One of the things that Boo has been unable to do for himself since his second stroke is tie his shoes.  To facilitate self dressing, I've bought shoes that fasten with Velcro---and that usually works quite well.  Today I was making  Montessori inspired dressing blocks for a friend's toddler.  Boo picked up the one for lacing and tying.  After tying several knots in the laces (I have great difficulty untying knots!), he has retaught himself to tie his shoes.  OK, this may not seem like a great advancement, but I think it is.  He's had to develop the fine motor skills to physically tie bows again and, most difficult for him, he's had to learn to feel the laces rather than depend on seeing them as his vision continues to worsen.  Progress is made one small step at a time.

An Eventful Night

     Boo and I spent last night at Mom's house while she's away.  I thought I'd get more sleep if I set her security system so that I'd know if Boo openned an outside door.  (Usually he stays in at night, but he's been getting up during the night and watching TV or listening to an audio book.  Once in a while he'll head out the door.)  He set the alarm off twice after midnight last night.  Now he's afraid to touch the outside doors at Mom's because the alarm might sound.
     This morning Boo had an appointment with his family doctor.  Because his BP is so low now (What a change!), she eliminated another BP medication.  He was very alert and talkative---probably the first time the doctor has seen him like that.  Since Boo had the renal stint put in, we've been able to eliminate two of his BP medications and reduce the ammount of two others.  However, he has lost ten pounds since it was put in also.  His lack of appetite may be related to his lowered BP.  So, I'll work on increasing his caloric intake and reducing mine. 
     In two weeks, Boo will another appointment to reevaluate his medications for his blood pressure and also for dementia.  Before his family doctor makes further changes, she wants to talk to his cardiologist and his neurologist.  We'll see...

Rain Drops Keep Falling

     This is an interesting day.  It's raining, cold and rather dreary.  Guess who wants to take a walk?  We did take a brief walk when it was just sprinkling.  Both cats sat in the doorway, watched the crazy humans and refused to set foot outside.  Now it is POURING.  Boo wants to walk downtown and see what's happening.  This time of day there are probably a dozen and a half people downtown---and I'm being optimistic.  This is just not the most exciting time to check out the town.  Maybe Boo will be satisfied letting the cats chase a laser light inside.  Hopefully, the cats will burn off excess energy and it will keep all three (Boo, Boudreaux and Peggy Sue) occupied. 

A Sad Day

     This is a quiet day for Boo.  He's easily confused right now and twice in the last four hours has cried because "I can't remember things I know."  Boudreaux and Peggy Sue have taken turns sitting in Boo's lap.  Both of them seem to sense when he needs comfort and both are very good about accepting Boo rubbing their fur the wrong way or hugging them.  My job today is to help Boo reorient himself or distract him if he can't focus enough to reorient himself.  I have offered Boo medication to help calm him several times today, but he didn't want it.  Almost always he'll ask for medication when he realizes he's upset or confused---or at least accept it if I offer it.  After supper and a shower, I think it will be time for some medication unless things improve.
     I can't really imagine being confused as Boo often is.  It must be even more difficult to be confused and to be aware that you're confused.  There have been a few times when he seems to be grieving for the loss of his memory.  Today is one of those times.  Boo has accepted and learned to cope with so many disabilities---loss of sight, using a cane or walker, etc.  His attitude has been awesome through everything.  He's certainly entitled to grieve as he needs.  My concern is that he not become so bogged in sadness that he can't function. 
     On a brighter note:  Boo's blood pressure is still well under control.  In fact, his blood pressure tends to rise when he gets confused.  Today that did not happen.  

Failed Photo Shoot

Boo, unhappily outside

Peggy Sue, refusing to look at the camera

Boudreaux, refusing to look at the camera

Today was absolutely beautiful and I thought it would be a great photo opportunity for Boo and both cats.  From the beginning, Boo just wanted to go back inside.  He wasn't hot.  The sun wasn't too bright.  He wasn't tired.  Boo just wanted to go back inside and that was that.  He did allow one picture---and only one.  So, I decided to photograph the cats who were sitting side by side "chirping" to each other.  On no!  They promptly separated and refused to even look at the camera.  Maybe I'll wait til it rains again, hustle Boo and the cats outside for a photo shoot and see if that works better.

    

Weather Watch

     Last night Boo had to stay awake to monitor the weather channel until 1:30 or 2:00am.  He's intensely interested in unusual weather.  I suppose growing up in Louisiana he learned to pay close attention to the weather.  At one point, Boo gave the cats (We're cat sitting Boudreaux's mother.)  a very stern lecture about what they were to do if we had a tornado.  They sat about two feet apart and appeared to be listening.  Wonder what they were thinking?
     Boo's blood pressure is still much lower.  He is more alert and consistantly aware of his surroundings than he was before he had the stint inserted.  He is still unsteady at times, but that seems to be lessening with each day.

     This has been a very interesting day.  We are "cat sitting" for Boudreaux's mother, Peggy Sue.  Usually we take care of Peggy Sue at her home, but that isn't not an option this time.  Boo has spent most of the day trying

Happy Easter!

     This has been a blessed Easter.  We watched part of the Easter Vigil from Rome last night---until Boo went to sleep.  This morning two women from the local Catholic mission brought Boo Communion.  Later, we walked to Mom's house to spend time with part of my family.  Boo is sleeping in Mom's den.  Mom probably is too.
     Here is my long overdue update on Boo's stint.  Last Wednesday we went to the hospital to have a stint placed in Boo's right renal artery which almost completely blocked.  For once, everything that could possibly go right, went  right.  We were able to bring Boo home on Wednesday afternoon.  (This is usually done as an outpatient; but given Boo's medical history, the cardiologist was sure Boo would be admitted for a few days.)  The only "complication" has been his sleepiness.  Because of Boo's strokes, he is more sensitive to being sedated and it definitely took him longer to really stay awake. 
     So far, the renal stint seems to be helping to lower his blood pressure.  This morning, eleven hours after his last medication and before he'd had any of his morning medications, his blood pressure was 130/78.  Currently, he is off of two of his BP medications.  There's a good chance he'll be able to discontinue some others as well.  Boo is scheduled to visit his family doctor 4 May 2011.  He is also scheduled to visit a nephrologist to determine how much function he has in his right kidney and what else, if anything, needs to be done.  Maybe, just maybe, Boo's on the right track at last...

Genealogy

     Because yesterday was one of Boo's quiet, sort of needy days, I began researching Boo's genealogy.  At first I thought he'd easily remember some things.  Absolutely not!  However, as I found little bits of information, Boo was able to confirm them and add a little to what I'd found.  It's been VERY slow going, but we are making progress.  Thus far, he's been interested.  (It serves another purpose too.  If Boo focuses on remembering things he was told growing up, then he doesn't fixate on what he cannot remember right now.)  One interesting tidbit:  Boo's Cajun relatives took the biblical admonition to "be fruitful and multiply" extremely seriously.

Quiet, Unsettled Day

     Boo has had a very quiet day.  Two wonderful women from Sacred Heart brought him Communion this morning.  Afterwards, he napped for a while.  He ate lunch when he woke, but wasn't sure where he was.  We have a routine to help him reorient himself---it's usually effective.  Today, however, he just wanted to sit beside me and hold Boudreaux.  Boudreaux has been absolutely a gem.  He has allowed Boo to hold him for hours and has tolerated having his fur rubbed the wrong way.  Thank heavens for Boudreaux!  Now if I could only convience Boo to eat some supper...

A Wonderful Day!

     Boo has had one of the best days he's had in a very long time.  He was alert and talkative for several hours---which is not always the case.  Of course, his lovely daughter and granddaughters provided great motivation.  Thank you so much for your visit! 
     Boo's sleeping now and probably will for a while.  His last words before drifting off were, "This was better than Christmas!"

Renal Arterial Gram

     Unless they call us in sooner, Boo is scheduled for a renal arterial gram and a possible stint on Wednesday, April 20th.  I'll post more information as I have it.

Allergies

     I think we'd better buy stock in Kleenex!  Boo has been sneezing and coughing since supper last night.  After checking with the pharmacist to determine what over the counter medications Boo could take, I tried to make him more comfortable.  That was three hours ago.  Thus far, he is miserable still---but he's no longer coughing.  All he wants to do is curl up on the sofa or day bed and rest.  I've been pushing fluids and keeping a close check on his blood pressure.  We'll see...

Enjoying the Outdoors

Boo enjoying the lovely weather.

I love the dogwood!

Boo sat outside and ate a sandwich---which he shared with Boudreaux.

Boudreaux watching for some of Boo's peanut butter sandwich.  You should watch him trying to eat it!

The last few days have been absolutely gorgeous!  Boo walks in the early morning or in the evening to avoid the heat.  He seems to have a low tolerance for heat.  There is a woodpecker across the street from our house that is very active when we walk.  Boo knows that he is close to home when he hears the woodpecker.  (Of course, he is sometimes wrong because there is another woodpecker near my mother's house.)  There's also a bunny in our side yard.  On Boo's good days, he can see the bunny hopping from one of the dogwoods to near the hedge.  Boudreaux is terrified of the bunny and runs to Boo's lap when the bunny is on the move.  We seem to have more squirrels than anything else.  Boo sometimes notices a blur when they're running from tree to tree.  He can hear them chatter and has been talking back to them.  When they hear him, there is dead silence for a while and then they start again.
Yesterday Boo and I ate sandwiches and fruit in our yard.  Boo fed Boudreaux pieces of his sandwich.  If you've never seen a cat eat peanut butter, you are missing a treat.  Boudreaux chews and chews and chews and finally spits it out.  I guess Boudreaux thought that if Boo was eating the sandwich, it must be good.  He's a silly cat!

Graduation---Again!!!

He's tired after all his PT assessments!

Yesterday at my sister's, Boo had to tell Peggy Sue all about Boudreaux (her son).

Boo is tired and cranky---a rare thing indeed.  (Well, tired is not rare, but cranky is.)  We walked 2.5 blocks this morning right after breakfast.  Then a couple of hour later his physical therapist came to reevaluate his progress.  He has now met all of his pt goals.  The changes in his medications made a big difference in his alertness and his stamina. Now he can walk and exercise without lack of stamina and balance being a huge issue. He has quite a ways to go, but he is definitely on the way! 
LIFE IS GOOD!!!

Spring Weather---at last!!!

Boo loves this weather---bright, sunny and not too hot.

Daisy resting beside Boo.

Boo seems fascinated by all the flowering plants. It's hard to convince him to come inside.

     This lovely weather has chased us outdoors. We're also "babysitting" my sister's dog, Daisy, and her cat, Peggy.  Daisy has had a lot of fun walking with Boo.  The two of them spent an hour in Mom's backyard.  Daisy stayed beside Boo and listened to him talk.  I'm not sure what one says to a dog for an hour, but Daisy seemed to enjoy it.
     Boo is doing a little better.  His cardiologist adjusted some of his medications.  For a while afterwards, his BP fluctuated greatly and we kept the home health nurse and his doctor busy.  Things seem to be smoothing out finally.  Boo is more alert, more active and definitely more opinionated.  He is walking 3.5 to 4 blocks daily and doing PT exercises with no problem.  Boo tends to become unsteady in the evening still, but at least it's not all day anymore.  Schedule changes remain an issue.  I really have to be careful not to overload his days.  Right now he can handle more physically than he can emotionally. 

Birthday Party

Enjoying dinner!

Last night we went to a Chinese buffet in Rockingham for a birthday dinner. Boo thoroughly enjoyed himself. He had hot and sour soup, two kinds of shrimp, steamed crab, spare ribs, lots of stir fried vegetables, part of my piece of chocolate cake and a fortune cookie. He slept on the way home and then went to bed early---about 8:30pm. He woke only to take medication and eat a snack. This morning he informed me that he likes eating out, but it’s too tiring. Oh well…


This morning after Mary brought Boo Communion, we found a Latin Mass on TV. Boo remembered the responses and what they meant. He has talked nonstop about praying the Mass in Latin growing up. I wish I’d had the foresight to record it for him. Maybe we can do that next time.

Boo seems to be adjusting well to the changes in his medications. He is far less unsteady and dizzy. However, his stamina is poor. We are working to improve that---slowly and steadily. Most days he tolerates three twelve-minute standing exercise periods and at least one walk outside. His walk varies from 1.5 blocks to 2.5 blocks depending on weather, his steadiness and his BP.

One of the things we will begin to change this week is the timing of his walks. Because he doesn’t tolerate the heat in the summer, we walk in the early morning and late evening. Boo has been less open to changing his exercise routine and his schedule recently. So, I have begun to discuss the upcoming week with him and remind him of things that are going to be different for him. Those changes that are inevitable, I try to make SLOWLY and with as much explanation as possible.

Doctor's Visit

He SAYS he's watching westerns!

I think he's sleeping.

Boo has had a very busy day.  First thing this morning, he had a physical therapy session.  Then, we got dressed to go to the doctor, had lunch and went to the doctor's office.  We're back home now and Boo is exhausted---not that he will admit that. He is watching westerns with his eyes closed and snoring.

Boo's primary care physician has altered the ammounts of two of his medications.  Hopefully that will help decrease his vertigo episodes.  If not, we'll try somethihng else.  At the doctor's office, Boo's left foot was fine.  PT had not yet faxed his doctor their evaluation.  So, we'll have to wait on that.

Lazy Day---for one of us!

23 February 2011

Boo has managed to sleep until 11:00 this morning. He woke to take his 7:00am medication and eat a light breakfast. Then he decided to go back to bed while I caught up on a few chores. I neglected to set an alarm to remind myself to awaken him. Here it is 11:00 and I am definitely having trouble convincing him to GET UP. He wants to sleep a little longer. When lunch is almost ready, he must tear himself out of bed. He’s due a second round of meds at noon and needs to eat before taking them.


Yesterday Boo began rolling his left foot towards the inside when he stands or walks. His left side is the most affected by his last two strokes. Until now, his left-sided weakness only manifested itself when he was tired or sick. At those times he is prone to drag his left foot when walking, have difficulty lifting his left foot to dress himself and, once in a while, bumps into things---as though he is less aware of his left side. Neither his physical therapy assistant nor I can determine what is causing this new issue. All the usual culprits---elevated or abnormally low BP or glucose levels, overexertion, illness---don’t seem to apply. Tomorrow Boo has an appointment with his primary care doctor. I guess she’ll evaluate this then. His physical therapist will visit either tomorrow or Friday to see what she thinks can be done to correct his foot turning.

Boo, Grumpy and Grumpy's long suffering wife

We had a wonderful visit from some friends that have known Boo for years and years.  It's always a joy to spend time with Grumpy and his wife.  Boo was rather quiet and seemed to need to search for words when he did talk.  Now that they've gone home, he can think of things to say.  Oh well...

Reevaluation and Improvement

Boo walking with physical therapist

Yesterday was assessment and evaluation day for Boo with Home Health. He was discharged from occupational therapy. Even with his recent vertigo problems, he met his goals for self-care. Besides his usual morning and evening routines which include dressing, bathing or washing off and mouth care, he is helping with some meal preparation and housecleaning. OT had not set any goals for Boo beyond dressing and basic hygiene because neither they nor his doctors thought he’d be capable of anything else. Yesterday he demonstrated to his occupational therapist his sandwich and snack making skills. He also showed her how he sweeps the house (with a carpet sweeper) and cleans the bathroom sinks and mirrors.


Boo has not yet met his physical therapy goals---although he has made a lot of progress since his last hospitalization. PT will continue to work with him to improve his balance and stamina. Intermittent vertigo has been a real issue. On the positive side, Boo has not lost muscle tone even though he hasn’t been able to walk or do his standing exercises as much as we’d hoped. His persistence in doing his seated and lying exercises twice a day when he couldn’t walk definitely made a difference.

Yesterday Boo had few vertigo episodes. He walked a total of five blocks all day (total from three separate walks.) Last night he was tired and went to bed early, but he’s fine today.

***********************************************************************************

Ok, maybe he’s not quite fine. Boo walked two blocks this morning, ate lunch and took a nap. He’s a little confused now---not remembering that my mother is at the beach, not remembering that his father died. He is alert and remembers the day to day things that most concern him---where the coffee carafe is, where his snacks are, how to find westerns on TV.

Necessary Medical Information

Alright Patty, this is for you. Here is all the basic information you need when you call an ambulance, go to the ER or a new doctor. When you’re dealing with a sick child (or spouse) and you’re upset too, it is so much easier to have all the important information right in front of you. I use a Home Health notebook for day to day information, a Medical Information notebook for emergency and new medical providers and several flash drives with medical information (easier to stash in a purse than a notebook.)




Home Health Notebook

Daily Log sheets

Current Medication List

Medical Provider Phone List

Calendar pages to record appointments



Boo’s Home Health Notebook is my brain. All the information I need when talking to Boo’s doctors or his home health nurse is at hand. On his Daily Log sheets, I record his BP and glucose readings, the exact times he takes his medications, physical and occupational therapy exercises completed and anything else I think needs to be recorded. The absolute minimum that must be recorded daily for Boo is 3 BP readings, 1 glucose reading, the exact times medication is given and exercises completed. I also record any behavior that is abnormal for him. From time to time, I have recorded his intake and output---if he is confused for more than a day, runs a fever, etc. If he has nausea or diarrhea, I’ll take several glucose readings during the day to ensure that his blood sugar remains as constant as possible.

Medical Information Notebook



Medical History

Current Medication List

Medication Changes within the last 6 months

Medical Provider List with complete contact information

Family Medical History

Medical Power of Attorney form, notarized copy

Living Will or Right to Life form, notarized copy

Copy of insurance cards, front and back

Copies of medical tests for last 6 months

Medical Information Flash Drive

Same information that is in the notebook

At the hospital or a new doctor’s office, all the basic information that is generally needed is right in the notebook or flash drive. Of course, copies of medical tests need to be obtained from the original source. The copies in the notebook provide immediate information---that has been very useful for Boo when it took longer than expected to get records during a past hospitalization. About the NC Medical Power of Attorney, Living Will and Right to Life forms: (1) They must be notarized. (2) There is a website for filing these forms with the state. Filing them is not required, but would provide medical providers immediate access.


I also have all the information in his Medical Info notebook saved on a flash drive as jpeg or Word documents that I keep in my purse. If we are away from home and Boo needs medical care, most hospitals can download information from your flash drive.



Emergency Backpack


Medical Information Notebook

Complete change of clothes for Boo

Comb, toothpaste, toothbrush, denture cleanser and adhesive

Rosary

CD/Walkman (not sure what it’s called)

Batteries

2 or 3 CDs

Spare phone charger

Extra pair of socks for me

Sunflower seeds

A few dollars (Our local hospital doesn’t accept ATM cards.)

1 Junk food book (You know one of those books you can pick up and read with no concentration required.)



I keep Boo’s Medical Information Notebook in his ER backpack so that I always know exactly where it is. We store his backpack in the sunroom closet, filled and ready. I do try to remember Boo’s Home Health Notebook on the way out the door because that gives his daily information.



A word to the wise about calling 911:


Be sure to have not only your physical address written down, but also the closest intersection. It’s amazing what you can’t remember when you’re upset! I’d post an emergency info card by each phone so you’re always prepared.

I’ll try to post forms and links as soon as I can.  Hope this helps!

Vertigo

15 February 2011




We just came home from our second visit to Boo’s family doctor in two weeks and he’ll see her again next week. Vertigo is no fun---and I’ve never had it. Boo is definitely less stable now than he was two weeks ago. I appreciate his doctor’s attentiveness and the time she takes electing information from him. It’s possible that the combination of his nightly stuffy nose, brain damage from his three strokes and his medications are all contributing to his intermittent vertigo. She has prescribed a mild nasal spray to help alleviate one possible problem. We’ll see…

This past week has been very difficult. Boo absolutely doesn’t like feeling like he is going backwards, but this dizziness has shaken him. He is so unstable first thing in the morning and just before bed, that he needs both a gait belt and a walker. There have been several days when Boo was unable to do his standing exercises because of his balance. He still does his seated exercises. With his physical therapist, Boo has worked out a series of exercises he can do in bed. Thank you Jamie! He is so much more content when he is able to exercise. It also helps strengthen muscles that he isn’t using as much right now.

Boudreaux to the Rescue!!!

11 February 2011




Once again Boudreaux saved the day! This morning, while I was changing our bed linens and Boo was watching the news in the den, Boudreaux started howling. I ran to the den to find Boo trying to walk without assistance (no cane, no walker). Boudreaux was standing in front of him howling at the top of his lungs. With Boo’s intermittent vertigo and general instability, he MUST use a cane or walker. I’d rather he let me know when he’s getting up---and he usually does. Who knows what he was thinking this time? Thank goodness for Boudreaux!

Inner Ear Problems

10 February 2011






This has been a difficult week. Beginning late Friday night, Boo has had major issues with balance. Saturday and Sunday were the worst days he’s had so far---walking just a few feet in the house required a gait belt and a walker. He complained of being dizzy and “weak in the knees.” After talking to the on-call nurse for his home health and determining that his BP, temperature and blood sugar were normal, we decided to wait until Monday morning to visit his family doctor.

His family doctor ran a few tests and spent an hour, on and off, with Boo. She took the time to ask him questions, wait for his response and then ask for clarification. I was properly impressed. Questioning Boo like that and allowing time for him to recoup between questions, she elicited more information from him than I had. She determined that he probably had benign vertigo.

Boo is better than he was over the weekend. Balance is still a problem, but he is using his cane instead of the walker inside while he is awake. When he gets up after going to bed, he needs his walker. His wonderful physical therapy aid and occupational therapist have really worked with balance and safety this week. Boo seems to respond well to them. When they suggest---strongly---that he use a walker at night and first thing in the morning, he willing does so.

Until his balance is resolved, Boo requires more vigilant care and more help than usual. I need to stay very close so that I lend a hand every time he stands or walks. Boo does ask for help when he realizes that he needs it. He just doesn’t always realize he needs help quickly enough for me to respond unless I'm close by. I guess ALMOST falling a few times has made him more cautious.


On a very positive note, Boo’s A1C level is 5.8. Last August it was 6.1. In December of 2007, after his first stroke, his A1C was 8.1. Following an appropriate diet, taking his medication as prescribed and exercising has made a difference. Yeah Boo!

Cold, Wet and Rainy

4 February 2011




All this lovely, needed rain is definitely putting a damper on Boo’s outdoor walks. Were wet, slippery surfaces not a major safety risk, we’d bundle up and walk anyway. We did attempt to walk on our large, covered front porch earlier. While the porch floor is wet, there is good traction. Unfortunately, Boo kept trying to maneuver off the porch. When that man is determined to take a walk, he is DETERMINED!!! He has repeatedly told me this morning, “I’m got to keep getting better. I’m going to take a walk for endurance.” I admire his determination and his attitude. Just now I wish he could grasp the wisdom of waiting. Even in dry weather, Boo’s balance is precarious on uneven surfaces. With rain added to the equation, I’m not willing to risk it.

Boo will repeat his physical therapy exercises later today to attempt to make up for missing his morning walk. Right now, he’s sweeping the floors with a carpet sweeper---and he is happy. I had started vacuuming and Boo tried to take over. The vacuum is unwieldy and he couldn’t manage it, which was very frustrating for him---just one more thing he can’t do. However, the carpet sweeper is lightweight and perfect for him. He can even use his cane and still maneuver it. Why didn’t I think of this before now? It provides a way for Boo to be genuinely helpful and eliminates one of my chores. Now I must remember to keep the sweeper charged…

************************************************************************

Boy, oh boy, am I in trouble---and this time I’m innocent! It’s been raining all day. Both Boo and Boudreaux are upset with me. One keeps hopefully presenting good reasons to take a walk. The other looks out the window, looks at me and fusses. According the news, we’ve gotten 2 inches of rain today. That’s two inches that we really need. So, my two fussy young men are just going to have to deal with it.

Progress!!!

Boo has made major progress with stamina and far more quickly than any of us had anticipated. Yesterday, after walking no more than three quarters of a block daily since his last hospitalization, Boo walked a total of four and a half blocks! He wanted to go with me to check on my sister’s pets, two and a quarter blocks each way. I thought it was probably too much too soon, but arranged with a cousin to be ready to pick us up when he’d gone as far as he could. One of the things I’ve learned is to allow Boo to try as much as he wants---with appropriate safeguards. If he doesn’t succeed, he has at least tried and we can usually figure out how to better enable him to reach his goals. I am SO proud of him.


Boo’s occupational therapist updated his upper body exercises today. In about a week he’ll have them memorized and will do them himself. He does his seated physical therapy exercises daily without reminders. Boo is determined to all that he can on his own and has an awesome attitude. I did make 5x7 cards with his new exercises on them---though their main purpose is to remind him to remind me to work with him until he memorizes them. His vision usually prohibits him from reading anything.

After all Boo’s walking yesterday, I was prepared for a rough night. Usually he is confused at night when he’s over worked himself and I was ready. We had an extremely calm, quiet evening following our night time routine and I had medication ready for anxiety (which he didn’t need.) We need days like today to bolster our spirits sometimes.

Working Out a New Routine

30 January 2011




We are slowly working out a routine that gives Boo both the stimulation and the rest that he needs and sometimes allows me to get all the little household things done that pile up so quickly. Mornings are not Boo’s best time of day. He is groggy and easily upset by new things---a different physical therapist, an unexpected appointment, even deviled eggs with paprika on top. (Maybe I’d not made them that way before, who knows!) We have breakfast, Boo’s first round of medication for the day, morning prayers and then, if all goes well, Boo will “listen” to an audio book or TV. That is my time to get as many of my household chores completed as possible. You know, all those little things that have to be done and simply won’t do themselves---laundry, changing bed linens, preparing meals and snacks, paying bills, cleaning the bathroom. If Boo is upset or agitated, I read to him or try to interest him in the cat or bread baking, whatever comes to mind and works.

Afternoons Boo is usually ready for some exercise and stimulation. We take a short walk. He’s only up to a half to three quarters of a block right now. If it’s nice outside, we’ll listen to the birds or watch Boudreaux while Boo rests. Then, if he hasn’t done his physical therapy exercises in the morning, we do them then. Back inside, he has a half sandwich and a serving of fruit or a small salad and a breadstick and his third round of medication. Boo definitely naps between now and about five thirty.


In the evenings, I try to keep things VERY calm. We have a small supper and talk, play with Boudreaux, listen to an audio book or do something quiet together. No matter what else, I try to eliminate all unexpected or loud activities. Boo cannot adjust himself to change or noise easily at night.

Daily Routine

25 January 2011




Well, we’re back in the daily grind---nursing visits, occupational therapy visits, physical therapy visits, going for doctor visits, medication six times a day, small meals and snacks five times a day, laundry and other mundane household chores and organizing, always organizing. It seems like a treadmill with no end in sight sometimes. Still, with organization, routine and persistence---none of which come easily to me, I think we can have a great home life.

Last night I picked up A Mother’s Rule of Life, by Holly Pierlot. Admittedly Holly’s book is geared toward young mothers, but there were many wonderful ideas that I think I can incorporate into our life that will enrich and bless us. After reading parts of it to Boo, he asked to start the day with a decade of the rosary. Usually when we discuss things, I have to prod him to participate. This time he had quite a few ideas of his own. We came up with a tentative schedule. Let me stress that this is only a tentative schedule. Boo tires very easily and is still easily overwhelmed. So I must adapt to his needs---and right now they seem to change on a daily basis.

This morning we prayed a decade of the rosary, had omelets and whole wheat herb bread and Boo had a bath (still a major ordeal). Now, he’s resting and I’ve cleaned the kitchen, started lunch, cleaned the bathroom, started laundry and made the necessary phone calls for today. The only snag so far has been Boo’s apprehension about having a new physical therapist today. His last one moved. Everyone this home health agency has sent has been great. So, based on past experience this therapist will likely be good also. Unfortunately, logic doesn’t work so well when emotions are involved and Boo will likely need some more reassurance when he wakes.

Home Again!

18 January 2011




This is an overdue post. Boo has been home about two and a half days now. Make that two and a half VERY busy days. He was discharged on Sunday. Monday morning his RN from the home health agency, Cathy, came and we went over all his medications. She set up PT and OT evaluations. We discussed safety issues, diet and basic care. This is certainly not the first time we’ve been through this process and yet I still have questions. She also helped us deal with a minor reaction to his medications.

Our daily life is moving very slowly right now. Everyday things are taking quite a toll on his strength. Just sitting up to eat breakfast today was an effort for him. He took a shower this afternoon and is now exhausted. I haven’t shaved him yet. All things in time, I guess.

Boudreaux is very protective of Boo. He believes his purpose in life is to supervise all aspects of Boo’s care. He watches Boo eat and “talks” to Boo if he gets distracted. During Boo’s shower today, Boudreaux eased himself into the far corner of the shower to watch. If I leave Boo too long---folding clothes, preparing a meal, getting myself dressed, the cat fusses at me and runs back to Boo. I never thought this cat would become so attached to Boo nor Boo to the cat.

Tomorrow is Boo’s first appointment with his family doctor since his hospitalization. I’ve prepared all I can for this excursion: discharge papers from the hospital, all medications, Boo’s daily log of blood pressure and glucose readings, a snack, a change of clothes, my list of questions, and his rolling walker. Before bed, I’ll get out tomorrow’s clothes. These ordinary outings just don't feel very ordinary anymore.

Wonderful Experience

Sat, 15 Jan 2011




Although I was VERY uncertain about Boo’s stay in our small local hospital, I have been more than satisfied with his care. He is currently one of five patients. The Rns and CNAs have been very attentive and knowledgeable. Not only has each RN taken the time to briefly review Boo’s medical history with us (This has never happened anywhere else!), but they explain to me what drugs are being given, why, possible side effects, how the various drugs work AND when Boo is awake, they explain it to him. The staff has taken a similar approach when explaining diet and exercise. They’ve provided me with lots of written information, some good websites and referrals to community resources. I expected most of this information in a very condensed form as a part of Boo’s discharge instructions. Because they have given it to us all along, we can ask questions now and better prepare for Boo’s homecoming. I so wish other hospitals had taken this approach. I understand his care far better now than I ever have---and with 18 different medications taken at six different times, some with food, others not, coming up with an appropriate exercise program that he can tolerate and a diet that meets his dietary needs and is tasty, I want and need all the information I can get.

Unexpected Hospitalization

Thursday, 13 Jan 2011




Yesterday morning, Boo’s blood pressure began steadily climbing. Given the road conditions, I didn’t feel comfortable waiting at home to see if it would come down with small medication changes. So, we made a trip to our local ER. I expected, and prepared for, a several hour visit to the ER until his BP was lowered. Boo’s body proved uncooperative and while his BP did begin coming down, its downward progress was SLOW. The ER and family doctors recommended that he be admitted---not because he was critical, but because of his history. Because he seemed stable, we elected to stay at our local hospital instead of being transferred to a larger hospital in a neighboring town. ( Of course, he’ll be transferred elsewhere if his condition worsens.)

Boo has never been admitted as a medical patient to this hospital. He has had extremely positive experiences in the ER and the physical therapy departments. Had I realized just how small the hospital was, I’d have wanted him transferred, no questions asked. And he would have missed the very best care he’s ever received in a hospital! Guess I need to rethink some of my preconceived notions…He was one of 19 adult patients and they were busier than usual. His RN was awesome. She not only took the most thorough medical history anyone has yet, she also took the time to talk to him and had the time to wait for him to talk to her. In the hospital Boo takes much longer than usual to communicate. I guess we’ll see how this goes…

Rosary Dilema

     One of Boo's almost daily struggles involves praying the rosary. After his stroke in December 2007, he asked me to pray the rosary with him occasionally. For someone who didn't grow up Catholic and who knows little about the rosary, it was a bit of a stretch. He always led it and I found it a very peaceful prayer. In August 2009, after his second stroke, Boo couldn't remember all the prayers alone. So, I downloaded instructions on how to pray the rosary and bought a rosary on CD. That was helpful and I came to treasure our prayers. Now, however, that is not enough.
     Boo's attention span varies from day to day. Most days he simply cannot pray a whole rosary at once. We often pray a decade several times a day. This may be the wrong way to do it, but it is the only way I've found that enables him to still be able to include this prayer in his life on a daily basis.
     The next issue developed around Thanksgiving this year. Boo became very upset that he couldn't remember the mystery all the way through the decade. We tried a number of different things, but nothing really seemed effective. Last week I stumbled across an old blog posting about praying with children. Some of the ideas seemed doable and not so childish as to be offensive. I showed Boo the blog post( http://ponderedinmyheart.typepad.com/pondered_in_my_heart/2009/04/praying-the-rosary-with-little-ones.html/ ) and he liked the idea of having a picture of the mystery that he could see and hold. So, I downloaded the cards, printed and laminated them This has been so helpful!
     Actually holding and manipulating rosary beads has become an increasing problem. At first, I thought this was related to his attention span---and it is to an extent. In the morning, Boo can usually handle a large knotted cord decade rosary. That's really the only time any more. The rest of the time he'll hold the decade rosary, but won't attempt to manipulate it. Tonight he asked when I was going to make the roses for him like the children used in the blog, that he wants to have something to hold for each prayer.  I thought that would be too childish, but he evidently didn't. I suppose I'll crochet 11 roses in the next few days and we'll try some more.
   

Snowbound!!!

     We've received just over six inches of beautiful, beautiful snow and a thin crust of ice.The picture of the church, I took yesterday as the snow was falling.  Because we anticipated snow and ice and because my sister is away for a few days, Boo and I are with my mother. It's so much easier to keep tabs on Mom without having to get someone to stay with Boo while I run three blocks several times a day to make sure she's OK. Mom has actually been just fine. All I've really done that she couldn't was get her newspaper and take out the trash.
     Boo misses going out in the snow. He must watch from inside and that has been difficult for him. He wants to go out and do all the things he used to do---shovel the walks and driveway, feed the birds, take out the trash. The ice presents a major safety issue for him. So, inside he stays.
      Boo and Mom have kept each other company. While checking on Mom's cat this afternoon, I heard the two of them laughing in the den. Given Mom's normal propensity for jokes, I was NOT asking what was funny. I'm just grateful they enjoy being together.
     Although I left Boudreaux at home, he does enjoy playing in the snow. The picture of him coming up the steps was taken yesterday afternoon before any ice. I went home to check on him (and the house) and let him out to play. I know cats are not supposed to like snow, but he seems to. He likes to run, kick up the snow and growl at it or lick it and shake his head. Yesterday I finally had to pick him up and make him come inside. Boudreaux is a strange little cat.
     The last picture is Boo and Mom a couple of weeks ago at a restaurant. The two of them are dangerous together! There have been times when Boo has been discouraged or just very quiet. A little while around Mom and he's perked up---or maybe he's just wondering what kind of crazy family he's married into.