Category Archives: Blogging

Communication Among Caregivers

Communication Among Caregivers
Communication Among Caregivers

 

Communication among caregivers is very important  Rita called me (the Blogging Caregiver) to give me an update on Cindy’s Status.  I usually get nervous when she calls, but it wasn’t awful news.  Here is what she said:

Cindy has been having a problem with keeping food down for the past few days.  She had a scheduled appointment with her surgeon, Dr. Tsai, today.  He told her that she was having a problem with scarring on her esophagus or delayed gastric emptying – the stomach can’t empty food properly.  It is possible that she might have started eating solid foods too soon – such as bread and bagels.  These foods are too gummy and can be difficult for the stomach to digest after a surgery like she had.

Next week, when the surgeon’s assistant comes back, she will schedule an endoscopy to check the esophagus and a gastric emptying study.  If there is a problem with scarring on her esophagus, then he will widen her esophagus.  This is an outpatient procedure that can be done in his office.  If there is a gastric emptying problem, then it is possible that he tightened her stomach too much and he will have to surgically open the back of her stomach.

Until they find out what is wrong, Cindy has to go back on a liquid diet.  The good news?  She will probably lose more weight and is at the lowest she has been in many years.

The Blogging Caregiver appreciates all your comments.  Please let me know your thoughts below.

Blogging is a powerful outlet for caregivers

Family Caregivers – Finding Time

Family Caregivers - Finding Time
Family Caregivers – Finding Time

Where did all the time go?

I realized today that it’s a good thing I’m not working – I just don’t have the time.  You can see from my schedule above, I’m booked almost all day long.  The schedule doesn’t include shopping, cooking, schlepping and running various errands.

Pauline was supposed to go to physical therapy for her knee today, but didn’t feel well enough so she cancelled the appointment.  We did make it to her primary care doctor, Dr. Rhow, so she could figure out why Pauline is feeling so bad all the time.  Dr. Rhow believes that  she is suffering from vestibular toxicity – a problem in the inner ear.  To make sure this is what the problem is, Pauline is going to see a neurologist and a physical therapist who specializes in vestibular toxicity.  Meanwhile, she is taking Meclazine, a drug similar to Dramamine.  Thankfully, it is helping Pauline feel better.

On the way home, my neice called me asking how I was doing on the app we had talked about developing.  This is one of the projects I had planned on working on since I don’t have a job.  I told her that taking care of Pauline was more time consuming that a full day at the office.  I will be updating my calendar to schedule project ime for myself.

My next appointment was with my Rabbi to talk about helping with honors for the upcoming High Holidays.  We spent a few minutes talking business and spent the rest of our time together talking about life and laughing.  That was fun.

When I got home, I took a small break until my younger son got home.  I took him to open a bank account so he can learn more about budgeting money while Pauline and I manage the funds he has available.  I can tell this is going to be one of those trying times between parents and child.

My daughter was home from school by the time I walked in the door.  I thought I needed to do something with her, but – at the time – there was nothing on my schedule.  It turns out I missed her therapy appointment.  I sent an email to the therapist and apologized.  Then I put a recurring appointment on the calendar so this doesn’t happen again.

I was supposed to go out to dinner with a friend, but something came up and she cancelled.  So I made dinner for my kids and joined them.  After dinner I went for my usual walk.  When I went outside I was greeted by my neighbor who occasionally walks with me.  I hadn’t seen her for months and was pleased that she had time for a walk.  We had a great discussion on spirituality and the walk was enjoyable.  I was greeted by the smell of freshly baked cookies when I walked in the door.  My granddaughter waas making cookies for her class tomorrow in celebration of her birthday.  It was the best way to end my day.

 

The Blogging Caregiver Takes a Break

Taking a Break
Taking a Break

This week I tried to find more time for myself  Honestly, I’m not sure how I used to work full time – and that was only 3 weeks ago.  My calendar seems to be full.  Monday was a trip to the surgeon and labs for Pauline.  Tuesday was a trip to the doctor with Cindy.  Today was an appointment with Social Security to get Edgar him onto disability.  Tomorrow is physical therapy for Pauline and then we’re going to the doctor to beg her to find why Pauline feels so sick.  After that I’m going to work with the Rabbi to work on honors for the High Holidays.  Friday I drop my car off at the station.

But I also have time booked for me.  Almost every night I take a 3-5 mile walk.  I love getting exercise outside in the fresh air.  I also get to smile or talk to people on the street.  If I’m lucky, I see some interesting things in the neighborhood.  For instance, the two pictures in this post was taken a couple of nights ago.  This guy had his friend paing his truck with these images.  I was very impressed.  The driver was happy to let  me take pictures of the side panels of his truck.

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The Blogging Caregiver Takes a Break

Wednesday night is Mah Jong night.  There is very little I allow to interfere with Mah Jong.  Last night there was an extra treat.  My friend Marika brought her dog, Joey, to the game.  He sat on my lap and gave me lots of kisses.  He also told me which tiles to throw.  Unfortunately, they were exactly the ones that Marika needed.

Tomorrow night I’m going to dinner and drinks with a friend – after I make dinner for the family.  I think that’s a fair proposition.  Whenever we go out together, we spend most of the evening laughing and having a great time.  I can’t wait.

The walks, Mah Jong, and spending time with friends are great ideas for caregivers.  Everyone needs a break from taking care of someone else.  Both Pauline and Cindy encourage their caregivers to take time for themselves.  They know it is good to be able to rely on someone who feels refreshed.

And then there is the numbing of the mind.  I enjoy watching detective shows for an hour or so.  In the evenings Pauline and I often watch our favorite shows together.

But now it’s time to publish this post.  Good night everyone!

 

What is a Finger Oximeter?

What is a finger oximeter?
What is a finger oximeter?

I took Cindy to her new primary care doctor today.  She is getting stronger and is walking better than she did when she left the hospital.  Her balance isn’t great yet and she needs to use a walker or hold onto something while she’s walking.  If she is walking for a while, her oxygen level goes down and she relys on an oxygen tank to help her breath.   Her oxygen tank is good for an hour.  The ride is 1/2 hour each way and the appointment is usually about 15 minutes.  Thankfully she didn’t need to use the oxygen tank.

Getting into the car wasn’t too bad.  When I got to the doctor’s office, I parked the car six parking spots from the front door.   Cindy used her walker and did well.  But by the time she got in and registered with the front desk, she was having a problem breathing.  She tested the oxygen level in her blood by using the finger oximeter that you see in the picture above (it also measures your heart rate).  The one that Cindy has comes with a cool carrying case – also seen in the picture.  She clipped the device onto her finger and within a few seconds your saturation level (percentage of oxygen in your blood) and pulse are displayed.

When Cindy finally sat down her saturation level was 84 (should be 90 – 100) and her pulse was 81 (normal for her).  She took some deep breaths and her saturation level went up to 91.  We were not terribly impressed with the new doctor.  Thankfully, her pulmonary doctor is very good at managing her total health plan.  By the time we got back to her house, Cindy seemed a little tired.  The car was parked close to the door but walking was a little more difficult.  When Cindy got into the house, she  used the finger oximeter again to tell measure her saturation level.  Again, it was low – 84 – and this time her pulse was 156.  She was able to get the saturation level up by taking deep breaths again.  Sitting still helped her heart rate come down.

As for Pauline, her lab results came back.  As usual with her, the results were all normal.  This is pretty disappointing for her because she is still feeling so sick.  The doctor hasn’t figured out what’s going on yet, so getting any relief isn’t in sight yet.  She has an appointment to see her primary care doctor after she finishes physical therapy on Thursday morning.

In case you’re wondering whose measurements are being displayed in the picture above, they are mine.

 

Knee Replacement Surgery – The Knee Looks Great!

The knee replacement surgery went very well.  The doctor was pleased with his work and there were no complications.  Now all that

Knee Replacement Surgery
Knee Replacement Surgery

Today Pauline went for her follow-up appointment with the orthopedic surgeon.  He said her knee looked great and she was recovering better than he expected.  That was great news.  He also said it would take a year for her knee to be totally healed.  She should be able to drive in about two weeks or so.  Tomorrow she will see the physical therapist at home for the last time.  After that, she will start to go to the hospital for physical therapy.

Pauine has been having other health issues.  She has had problems with her adrenal glands in the past and it is possible she has had an adrenal crisis that was triggered by the surgery.  Her primary doctor ordered a special test to check this out.  She had to get a cortisol shot and exactly an hour later, have her blood taken.  She should get her lab results by tomorrow.

Cindy is also recovering nicely.  She continues to get stronger and was able to walk a little bit without her walker.  Tomorrow she goes to her new primary care doctor for the first time.

That’s the update for now.

A Steamy Day

A Steamy Day
A Steamy Day

Trying to stay cool

The weather in the San Francisco Bay Area is pretty temperate.  It’s usually pretty comfortable all year long,  but some days it goes outside the normal temperature. Today was one of them.  It was a steamy day. Here in Oakland it the low 90’s.  Almost no one has air conditioning so you try to stay comfortable as best as you can.

Pauline continues to have non-knee surgery issues which give her pain, dizziness, nausea, and sweats.  Around 4 PM, she decides she wants to take a shower and then tries many times to get up and finally makes it.  She took a short shower, but it wiped her out.  She felt hot and not refreshed, needed assistance getting out of the shower and felt light-headed, almost passing out.  Pauline almost fell over and needed to sit and rest many times.

A few hours after that, I got a call from Rita.  She said that Cindy had taken a shower and didn’t feel well after she was done, saying she was hot.  Cindy had a hard time walking into the living room. Rita helped her sit down and then went into the kitchen.  A few minute later. She heard a loud crash and found Cindy passed out (she’s fine), and some equipment knocked over.

Coincidence?

Babysitting the Baby Sister

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Watch out for the babysitter!

Yes. Cindy is feeling weak while at home.  That is understandable since she had been in bed for ten days.  She feels that she was not ready to go home, that the doctors released her too soon.  But since there was no medical reason to keep her in the hospital, she had to choose between rehab and home.  The rehab she would go to is not ideal.  Cindy is well enough to walk a bit, so being at home was the better choice. That left me babysitting the baby sister.

Rita and Mary needed to help Rita’s sister and asked me to stay with Cindy for a few hours.  I felt like I was babysitting again.  We sat and watched TV together.   We also talked for a while.   When it was her nap time, I watched her sleep.  Nothing different than when we were kids.  And just like when we were little, I didn’t get paid to keep an eye on her.

My son, Paul, is staying with us for a little while.  This is a great help.  I feel better that someone is with Pauline when I’m not home.  She is not feeling well.  Sometimes her knee hurts, but her pain, nausea, dizziness, and sweats are getting worse.  She even cancelled the physical therapist today.  Pauline talked to her doctor who said that she wanted to check Pauline’s adrenal glands on Monday when Pauline goes to see the surgeon for a checkup on her knee.

Mom’s Home!

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These are all the critters that have been waiting for Cindy to come home.

Mom’s Home

Cindy got the green light to go home today.  All the critters are thrilled that mom’s home.  The case manager taking care of her discharge made sure that Cindy had everything she needed to continue her recovery at home.  Rita confirmed that all the equipment and supplies were in place.  The only other services that Cindy would require when she returned home would be physical therapy and pulmonary therapy. These treatments would probably start at home for a week or two and then continue on an outpatient basis.

Discharge happened this afternoon.  By the time Cindy got home, she was tired and had a difficult time getting herself situated at home. Spending all that time in the hospital for the past month put a damper on her spirits.  Hopefully getting back into a routine will help.

Pauline continues in her recovery.  Part of her physical therapy is to do more things that she would normally do.  When I got home from visiting with Cindy today, Pauline was sweeping the floor.  I thought that was a good way to spend her exercise time.

Physical Therapy for All

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Physical therapy for all

There was physical therapy for all today.  Cindy is feeling so much better today and able to get out of bed.   The doctor removed the tube from her chest.  Her lung capacity has increased by 45% after draining 75% of the fluid in her chest.  The surgeon is hoping that the sac does not fill back up and absorbs back into her body.  They will be doing another chest x-ray Tuesday morning to make sure things look right.  They are trying to avoid another surgery.  If it does fill up or doesn’t absorb then, there will be another surgery in a couple of weeks.

The next step for Cindy is to begin physical therapy.  She was able to sit in a chair for about an hour and a half along with her friends Tangy and Blueberry.  If she does well, she should be able to go home soon, probably on Thursday.  If not, she will have to go to a rehab.

Reggie, Pauline’s physical therapist, came to the house for a session.  He said that Pauline was doing very well.  She was able to do all her exercises, walk around the house and doing some minor activities.  He will be back on Thursday.

Another glitch in communication

Sunday night was difficult for Cindy.  The surgeon had changed her diet but didn’t write that in his notes.  That meant that Cindy didn’t get what she wanted.  After spending days in bed pain without being able to move, Cindy got very frustrated and anxious.  Rita went to the hospital that night to be with her and did everything she could to calm her down.  It seems the surgeon wrote the change on the board and not on the computer. The nurses never called or texted him.

This doesn’t seem like a big deal, but for the patient, comfort and dignity are critical to their recovery.  When the hospital admits a patient, they are given (or should be) a Patient’s Bill of Rights.  Use it when necessary.  I remember one time about 15-20 years when Pauline was in agony and I took her to the Emergency Room.   We were in the waiting area.  Pauline was too uncomfortable to sit and needed to lie down.  The security guard came around and said that she couldn’t like down in the waiting area.

It seemed that homeless people were coming into the ER and sleeping on the floor, so they “banned” lying on the floor.  I had the Patient’s Bill of Rights in my hand.  I opened the booklet and saw that it said that each patient has the right to be comfortable.  So I found a pillow and blanket and made Pauline as comfortable as possible.  When the security guard came over again, I handed him the pamphlet and pointed out that she had a right to be comfortable and he could either bring over a gurney or leave her alone.  He walked away and never came back.

 

Going in the Right Direction

Arrow Up

Things seem to be going well for the patients.  Pauline’s knee is definitely on the mend. She and her walker are getting around really well.  That makes me happy.

Cindy is also on the mend.   She is feeling much better today.  Her surgeon did an x-ray and CT scan yesterday and found that the fluid in the sac in her chest is down 40%.  If things keep going this way, she will not need another surgery.  Then she’ll be ready for physical therapy to get her back on her feet and then out the door.  Hopefully everything wll go as planned and Cindy will be home by the end of next week.

So the only thing not going to plan is my life.  I haven’t done anything about signing up for unemployment, looking into COBRA, figuring out our new budget, updating my LinkedIn profile or writing (except for this blog).  I’m too busy shopping, cooking, doing laundry, miscelaneous errands, and I’m not sure what else.  By the end of the day, I’m exhausted.  I used to go to work all day, come home and possibly shop/cook depending on how Pualine was doing and that was it. I was the Dad guy.  This week, I’ve turned into the Mommy.

I DON’T WANT TO BE THE MOMMY!!!

It’s too hard.

I want to go back to work.