Caregiving Decisions: All Day, Every Day

Decision fatigue can creep up on caregivers. I know when I can’t even decide what to make for dinner that my decision making ability is on overload. (I usually end up choosing breakfast for dinner at that point – easy and comforting!)

The pandemic has added even more decisions for caregivers to make.

Shortly before the stay-at-home order in California, I made the decision to keep Robert home from Day Program. They hadn’t yet closed but he is prone to pneumonia and it is virtually impossible to social distance at Day Program.

I decided it was safest for Robert to keep him home.

There’s no set reopening date for the Day Program but, at this point, I can’t send Robert back. Not any time soon anyway. He loves being with friends but I can’t jeopardize his already precarious health. I am not worried about his lack of socializing since, with the three of us home, Robert is more engaged in our conversations, enjoying watching shows with Richard while I work from the home office and loves petting Taz while telling him “I love ya a lot, Taz” several times a day. He sleeps in when he needs to and can take as long as he wants to eat a meal (now clocking in at close to three hours – per meal!). As an added bonus, my conversations with him involve phrases other than “hurry up, we’re late!”

For over two months, I decided it was best not only to keep him home from Day Program but also his weekly Physical Therapy appointments. However, I thought he would be fine since he walks more at home than he does being in a wheelchair all day at Day Program.

After about two weeks at home, though, he was having more trouble with his balance and with his legs “working.” Things got worse as the weeks went by. It took both Richard and I to get him out of the recliner to stand. It took both of us to help him walk down the hallway, all the while telling him how to walk and sometimes patting his leg to “cue” him. We had to literally tell him how to move.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Robert’s brain was having trouble communicating with his legs. I worried that it was because I didn’t take him to PT; I worried that it was permanent; I worried I would no longer be able to care for him like this.

I talked to his movement specialist and she thought it was a progression of his Parkinsonism. She felt going back to PT might help.

I wasn’t convinced it would be safe to take him so mulled it over a while longer.

Soon thereafter, Robert fell three times within a week. The third time landed him in the ER to get checked out (nothing broken; no concussion).

I called PT to see what their protocols were so I could weigh the risks. They provide everyone with masks, limit the number of people in the waiting room and gym area and thoroughly sanitize after each patient session.

I decided it was time to get him back to PT.

He was happy to return to “work out” and I was happy to learn that he still had muscle strength so I didn’t need to feel guilty about not taking him to PT.

(Guilt is so often an unwelcome companion of decision-making.)

The therapist mentioned that he should be sitting up instead of in a slouched position which makes me think the recliner might have had something to do with exacerbating his decline. I also decided to slightly reduce one of his anti-seizure meds that I know affects his mobility. It had been increased to the current dose in January but maybe a slight reduction would give him the “boost” his brain needed. The risk is that we will see an uptick in his seizures.

I have to decide between mobility and an increase in seizures.

For now, Robert is going to PT weekly again, his problematic medication was slightly reduced and he does not sit in the recliner (thankfully, he hasn’t even asked about it!).

All these decisions have helped. He is still not as mobile as he used to be and I haven’t dared see if he can walk down the hallway yet but he’s better at transferring and standing up.

With all the mobility issues, I decided to let go of his daily showers since he doesn’t have the stamina for that and I let go of the idea of putting him in pants and a shirt every day since I don’t have the stamina for that. Some days he is in pajamas all day and that’s fine for both of us.

These are just a few of the decisions Richard and I grapple with while caring for Robert during the pandemic. There are others, of course. Do we all wear masks when we venture out? (That’s a resounding yes.) Do we go out to eat? (No, that is not a good decision for us right now.) Do we order take-out? (We didn’t for a couple of months but we do occasionally now.) Do I keep Robert’s non-essential medical appointments? (No, it’s only essential appointments for now, of which PT is included.)

Caregivers make decisions every day, all day long. They may not be the decision that other caregivers would make but each caregiver knows what is best for them and their loved one.

What works for someone else may not work for you. Sometimes we might even make a decision and then change our mind! That’s allowed!

And sometimes you can give your brain a break and let someone else decide what is for dinner (let me help you: breakfast for dinner is always a good decision!).

Making Decisions: A Lesson From Dad

The topic of "decisions" has been on my mind lately and I now realize why. 

Dad died ten years ago today and he made his own decisions about treatment for his kidney failure (deciding against it). It was not the decision I would have made for him but, strangely enough, I have to make a similar decision about my puppy, Taz (he's 7 but always my puppy). Taz doesn't have cancer but he has a parathyroid tumor causing hypercalcemia, requiring surgery. Without it, Taz could eventually go in to kidney failure.

Taz is the most temperamental dog (or cat for that matter) that I've ever had. He's picky about his food, doesn't like to be disturbed when he's asleep (but loves to hog the bed), gets grumpy with other dogs when his tummy hurts and absolutely refuses to take medication. Both our vet and dog walker said he is the original social distancer but if you're in his tribe (or eventually lets you in to his tribe), he adores you, cuddles with you and makes you feel like you’re his favorite person in the whole world!

The surgery requires a several day stay in the doggie ICU after surgery and, quite possibly,

medication for life.

I honestly don't know that I want to put my little sensitive guy through all that.

For a long time, I was upset with Dad for choosing not to investigate the cause of his kidney failure (most likely, his cancer had returned) much less treat it. I have come to realize that was the best choice for him.

We all have to make our own decisions.

We haven't decided about Taz yet but I am enjoying each day with him while I mull over the options.

As for Dad, he was an avid individualist full of contradictions which was both maddening and fascinating. He would never listen to reason but he was one of those people who would light up a room with his presence. He adored his kids and grandkids but was married and divorced more than a couple of times. He made and lost a boatload of money and then made it again (and lost it). He didn’t have a lot of friends but people loved to be around him!

He had the bluest eyes I've ever seen and a mischievous grin that he flashed not only throughout his life but at his granddaughter, Rachel, as he was dying.

I used to get so mad at him for a million different things (all absolutely legit, believe me) but I also recognize that I have wonderful memories of him and wouldn’t be the person I am today without his influence (whether it was negative or positive).

Of one thing I am sure and Rachel reminded me of this today: I was his favorite daughter.

(As his only daughter, it was a fun little running joke we had my entire life.)

Make the decisions that are right for you. Enjoy every moment with the people (and animals) in your life and every now and then, flash a mischievous grin – just for the heck of it.

Miss you, Dad. Don't cause too much trouble up there. 

Leave Room for a Little Sunshine

Rock, meet Hard Place but leave some room for a little bit of sunshine.

Robert’s nighttime cough was worse by Friday even though he was on cough medicine. He was not sleeping well. The coughing and congestion was so severe he threw up a few times in the middle of the night. 

Photo Credit: Matt Stevens, "Flow"

(He made it into the bucket about half the time and since I’m a glass half-full kind of gal, I consider that a win.) 

Every day I take Robert’s vitals: blood pressure, blood ox level, pulse and temperature.  Everything was in his normal range and by Friday he still hadn’t run a fever.  Great news but what I saw was the cough getting worse and the weekend upon us.  Is that a train up ahead?  It feels like Robert is on the tracks and I’m racing to rescue him before the pneumonia train runs him over. 

His cough has been subsiding during the day so he seemed well enough to go to Program. I sent him on Friday but explained I was going to call his doctor to get an appointment.

A few minutes later: “You’re going to pick me up at 1:30?”

Um, no.  It’s only 7:30 a.m. now and the doctor’s office isn’t open yet.  I have to call for an appointment.  Just go to Program and once I have the appointment, I will have the staff at Program let you know when I will be there.

“Thank you.”  He went back to looking out the window for the bus. 

I called the doctor’s office the previous week, too, but spoke to the advice nurse. I explained what was going on: cough, no fever, no other sign of infection.  “Bring him in” advised the nurse and doctor.

Well, no.  I knew I would take him in and they wouldn’t be able to do anything because it isn’t a full-blown infection.  The only thing that would come of it would be me feeling guilty for missing more work.  So I made the decision a week ago to not take him in.

The coughing got worse through the next week and I thought I saw just a tinge of yellow in the mucus. The cough was disrupting Robert’s sleep more and more. The vomiting started.

Robert went to Day Program and this time I called the doctor’s office for an appointment. I was still torn – still no fever, not sure what they could do but I needed guidance.  I needed a doctor to help me out since I was struggling with how to keep Robert healthy. I was wishing my brain would have been able to comprehend science because I would like to be a doctor right about now.

We had a late morning appointment so I picked up Robert from Day Program after handling some morning emails from work.

Not surprisingly, Robert’s vitals are fine at the doctor’s office. We are escorted into the office by a young woman who is always very sweet to Robert.  She calls him “Mr. Wright” and gets no argument from him about “I prefer to be called Robert.”  It sounds very official and important so I understand why Robert doesn’t mind.

Maybe I’ll start calling him that when he is in a cranky mood. 

Robert promptly falls asleep in a chair and the doctor soon walks in.  He looks at me and at Robert (he is the one who diagnosed bronchitis in February). He is clearly wondering why we’re back.

I explained my dilemma: Robert’s congestion is worsening and he’s throwing up at night from it yet his vitals are fine.  I do not want to over-use antibiotics since Robert is already resistant to some.  We need to hold those in our arsenal. 

“Doctor, I’m struggling with this.”

We discussed the pulmonary doctor visit, discussed the situation and he listened to Robert’s lungs. He went back to the computer and read over more notes and looked at a loss.

It was strangely comforting to know the doctor was struggling with what to do as much as I was. 

We are both in agreement that we don’t want Robert on antibiotics prematurely. He was concerned about us going into the weekend, though. He decided to order antibiotics for me to have on hand but to only give to Robert if he started to show signs of an infection.  He then punted to the lung doctor.

“Call him today to see what he recommends.”

We finished up; I thanked the doctor for his help and shook his hand.  He is someone who really does care and strikes me as someone who gets frustrated when he can’t find the answer or come up with a good solution.  As far as I was concerned, this was the best solution available.

At least until my magic wand gets out of the shop.

Robert and I went home and I got him settled with his lunch. Richard took over for the afternoon while I went in to work for a few hours. 

I called the pulmonary doctor and left a message for his advice nurse.  I explained the situation and the “just in case” antibiotics.  The advice nurse called me back after talking to the pulmonary doctor and said he recommends giving Robert the antibiotics.  Don’t wait for the fever.

As much as I struggle with keeping antibiotics in our back pocket in order to prolong Robert’s resistance to them as long as possible, it was a relief to be able to give them. Waiting for the fever is risky – once that happens it is a short trip to pneumonia and sepsis.

Robert has been on the antibiotics for a day and a half.  He coughed last night but didn’t throw up. We let him sleep until noon yesterday; waking him only for his medications (Taz gets extra credit for letting him sleep!). We are letting him sleep late again today.  He has a lot of sleep to catch up on after all that coughing the past few weeks.

It’s been a beautiful weekend of sunshine and Robert seems to be on the mend.  I am not going to think about whether or not this latest round of antibiotics will contribute to him being resistant in the future.  I can’t worry about the future.

These are difficult decisions but, for now, the train has slowed down. Heck, if I am being really optimistic, I will even say Mr. Wright is off the tracks.

I can even see a glimmer of sunshine through that rock and hard place. 

Burying the Lead

Robert has lived in New Home for two years.

Before that, beginning in 2009, he lived in an assisted living facility for older adults (he had an exemption since he was under 50 years old) for two years.

Cards, anyone? 

In the last part of 2008 and early part of 2009, Robert had a long-term stay in a hospital due to a life-threatening infection which was perilously close to invading his brain.  Robert had been in a study at UC San Francisco for the Deep Brain Stimulator and the piece in his chest had become infected.  That piece of the device was removed but the leads going deep into the brain remained, in the hopes he could continue in the study. (We later learned Robert was in the “active” group and the DBS was actually helping to control his seizures). 

The infection returned with a vengeance and since these leads were a pipeline directly into the brain for this infection, Robert underwent emergency surgery to remove them. 

Before these events and recurring infections, Robert had lived independently (with some family oversight and a live-in companion) for many years.

Once he recovered from the infection (which took a couple of months of intravenous antibiotics and a stay at a Skilled Nursing Facility), a decision needed to be made about his living situation. 

It was a difficult decision but one which had to be made.  

Caregiving is a series of decisions.  How serious is the infection?  Does he need to go to the ER?  Where should Robert stay while he is on the intravenous antibiotics?  Will it be safe for him to live independently again?  What Skilled Nursing Facility is the best fit for him?  Should he be moved from his home an hour and a half away to a facility closer to me and my family?

And that was in the first few months of caring for Robert.   

Deep end of the pool – meet Robert’s Sister.  Sink or swim – go!

The decisions have not stopped since then but I’ve become more accustomed to fielding them.  The placement decision is one I haven’t ever been completely happy with.  I did all the right things when searching for facilities for him: created checklists, conducted interviews, had Robert visit the facilities, but there were always one or two (or several) issues that I had to deal with during his stays at the facilities.

I never found him the perfect home. 

My husband and I thought a solution would be to turn our garage into a bedroom for Robert.  That wasn’t as easy as it seemed (although my city is now aware they have a “Reasonable Accommodation”  code which, by law, they have to follow). 

Reluctantly, due to construction issues and costs, we gave up on that idea and I resigned myself to Robert living at a facility 40 minutes from my house with a few people on staff I had issues with.  (I’m not normally a difficult person but when the nurse tries to change Robert’s medication schedule because it will be easier for her, then I become quite difficult).  

I decided Robert would live with us on the weekends.  We didn’t have a room but we have a sofa sleeper and a freezer full of Rocky Road ice cream.  Robert enjoyed his visits (and ice cream) from Saturday morning through Monday morning (and all holidays) and we enjoyed his company.

Until I was informed we were allowed to have only 73 overnight visits a year (unless we paid a ridiculous amount of money to have him stay with us).  I had about 20 days left in the year when told this in the middle of summer – and we hadn’t hit any of the major holidays!   

Super.

During this time, the issues at New Home were really piling up.  I had to find a doctor for Robert not affiliated with New Home because their doctor was incompetent (and I do not say that arbitrarily).  The previous House Manager didn’t order briefs timely so Robert ran out (and she called me for assistance).  Seizure logs were not accurately kept and, worse, suspiciously looked made up when I did get them. 

Nurse Ratchet (who was amazingly still employed by New Home) was not doing her job and neglected to prepare the proper paperwork for Robert’s new doctor in order for him to get his medication.   (She was eventually let go after three of these incidents).

Fortunately, the floor staff were all wonderful and I could count on them to keep me apprised of anything going on with Robert. 

Management changes were made (thank you!) but I still was not completely satisfied with Robert’s care.

I created a pros/cons list of Robert living with us.  He wouldn’t have his own room but he was comfortable enough on the weekends so that didn’t seem to matter.  He needed to have his social needs met but his Regional Center confirmed he could keep going to the same Day Program if he lived with us.  I would have to keep track of his medications and incontinent supplies which actually terrifies me but, as my best friend said, “You can’t do any worse than his care facility did.” 

So true.

For months, my husband and I discussed Robert living with us.  We reviewed the pros/cons list over and over.  We discussed the idea some more.

Then I picked Robert up at New Home and, as we walked out the door, I noticed a used brief stuck halfway inside his jeans and the other half sticking out over the top of his waist band.  I changed his pants (he was wearing his own brief so I have no idea where the other brief came from unless it was his nighttime brief) but he had a terrible rash from where it had been against his skin.

A limit of 73 Days. Incompetent doctor.  Self-centered nurse. Running out of supplies.

The Dirty Brief Incident.

It was too much.  This seriously put me over the edge.

My husband and I asked Robert if he would like to live with us and he said yes.  He hesitated when I asked him if he would miss his roommate so that means, “yes” but I’ve already asked New Home if I can contact his roommate’s mom so they can visit each other.  The Wonderful New House Manager has offered to help care for Robert if we need her and she said we could bring Robert to visit his old roommate.

We don’t have a definite move-in date yet but it will be sometime in April.  (I just have to make sure his medication is transferred seamlessly).

I suggest you buy stock in whoever makes Rocky Road ice cream!

(Now that’s how you bury a lead).

Decisions in Caregiving

Everyone makes decisions day in, day out.  Small decisions (hmm, should I really eat that piece of chocolate right now?) to big decisions (which school should I send my child to?) to everything in between.

(Of course, the answer to the first question is always: Yes! How can I turn down chocolate?)

Decisions in caregiving can be much more serious with the possibility of significant consequences. 

What treatment should I get for my caree?

Is it time to step in to help my loved one or is it too soon?  Will they want my help or see it as an intrusion?

Is it time to find a care facility for my family member?

Do we try new medications to help with [insert condition/disease/disorder here]? 

In Robert’s case, he was on the same medication for years and still having seizures.  A few months after I took over his care, I not only had taken over his care after he lived independently with slight family oversight for years but I had moved him to a new city, placed him in a care facility, changed his neurologist and primary care physician.

Quite a few decisions which were not made lightly but which could have involved dire consequences if I hadn’t stepped in when I did.  (Short version: Robert and his companion had taken in a homeless woman to live with them and she got into a physical argument with Robert, giving him a black eye.  Other Brother and I got the woman out of the house and, because of a series of other events (recurring infections, the main one), Robert was moved out of the house he lived in for 20+ years.)

Long version can  be found here.

Did my Other Brother and I act too late?  Should we have stepped in before Robert got all those infections and the black eye?  Or did we act too hastily in not letting Robert live independently any longer? 

The timing of these types of moments is never lit up on the calendar with a big arrow pointing to a date and a note saying, “THIS is the day to step in.”

No.  We have to make decisions and we grapple with them and sometimes caregivers still question whether or not this was the time to step in with more help.  Or try the new treatment.  Or place a loved one in a care facility. 

Shortly after starting with a new neurologist, she had a great plan.  Let’s try New Meds!  The seizures may be stopped with this New Med!  The New Meds just came on the market and could work! 

After 45 years of Robert having uncontrolled seizures it was hard not to get caught up in the excitement.  A medication that might relieve Robert from having seizures?  I was reluctant to try something new because even though he still had seizures, he seemed stable enough.  However, I agreed. 

This was three years ago and he was on the new medication for a short amount of time.  Unfortunately, he had such a reaction to the medication (losing his balance, actually not being able to walk), he landed in the hospital. 

Okay, not the best decision but that’s how decisions in caregiving go.  We grapple with them and sometimes they work out and sometimes they don’t.  Robert was immediately taken off the New Med and left on the medication regimen that we know worked as well as could be hoped.  Robert’s balance continued to suffer so we made the decision to get him a walker which he still uses.

Other caregivers go through decisions about placement or treatment every day, giving them great thought, care and always, always doubting if it’s the “right” time or the “right” decision. 

I have invited a few fellow caregivers to be my guest here and share with you the decisions they are wrestling with now.  Over the next week or so, we will share what they are going through when making caregiving decisions. 

I’m interested to know what decisions have you had to make for your caree, your loved one.  Please share in the comment section below or contact me at robertssister@att.net if you're interested in sharing the struggle you've had with a caregiving decision. 

Now, about that chocolate . . . decisions, decisions.