Uncertainty

I’m used to uncertainty. Never knowing when Robert will have a seizure or how long they will last. Is he sick and will he end up in the hospital? Epilepsy is full of uncertainty but I eventually felt some level of comfort when I recognized Robert’s triggers (too much excitement, caffeine, getting sick) and knew that his clusters happened every 2 – 3 weeks. I took his vitals twice a day to watch for an increased temperature or pulse rate. An increased pulse rate usually indicated a seizure cluster was coming or he was getting sick.

When Robert lived with us, there was still plenty of uncertainty but I could at least help him avoid the triggers and I could look at the calendar and know that he was “due” for a cluster of seizures. I could (usually) tell if something was working on him and if he was getting sick.

Still. There was a lot of uncertainty.

And stress.

Robert is now living his best life in a wonderful facility and I have comfort they see when he is sick and can start antibiotics when needed in order to keep him out of the hospital. Unfortunately, his lungs have gotten worse over time so an aspiration event or a bout with the flu, Covid or RSV will almost certainly land him in the hospital.

There is still uncertainty how he will handle another hit to his lungs and it is still stressful but I at least know he has medical professionals watching over him and sending him to the hospital when needed. I am grateful for that.

Now there is a new uncertainty.

When Richard went into cardiac arrest in November it was a complete shock. It wasn’t on our radar at all. He came home from getting coffee and gas one Sunday morning and told me he had a little pain in his chest and some jaw pain. I had read that jaw pain can be indicative of a heart attack but he wasn’t in extreme pain, clutching his chest like in an episode of Sanford & Sons – “I’m coming Elizabeth!”. (The millennials and Gen Z’s will need to look up that reference.)

We drove to the hospital and we thought it might be indigestion. Richard even suggested going to CVS to get antacids. I told him let’s just go to the hospital – the consequences of not going are going to be much worse than if we did go and just waste a day at the ER.

When he collapsed as we walked to the ER, it was a shock. There was no uncertainty except my brain not fully realizing what had just happened. Richard was on the ground completely passed out and seemed to even have a seizure because his body convulsed a couple of times. Thankfully, Jo (the nurse who saved Richard) was arriving to work and jumped into action. She saw the convulsions and thought it was a seizure but his lips started to turn blue so she started CPR.

In that moment, I felt great uncertainty. Jo asked the security guard to feel for a pulse. He didn’t know how so I tried but just fumbled around on Richard’s wrist. I must have been in shock but remember thinking he can’t die because we want to go on more cruises! (The brain works in funny ways during stress.)

Two emergency response teams came from the hospital and put him on a gurney. I don’t even remember someone on the gurney with him giving him CPR. I only learned that happened later. I was right there so must have blocked that out. They worked on him for what seemed like forever in the ER.

At one point, one of the team noted he had been without a pulse for 35 minutes. Our daughter was there soon after all this happened and it only occurred to me much later that Richard was out for so long that in that time I had called the kids, Rachel and her husband put the baby in the car and drove to the hospital and she was escorted to the back to be with me.

That whole time Richard was without a pulse.

I was in the room because I told the doctor assigned to be with me that I had to be there with him if he passed away. At one point, I just blurted out “please don’t call it.” (I clearly watch too many medical and crime dramas.)

They continued CPR, they eventually were able to use the paddles all while no less than 50 people were packed in this ER trauma room, all doing their specific assigned tasks.

The uncertainty hung in the room.

Finally, they got a pulse. The lead doctor used a clot busting drug that is normally used in rural hospitals on people to buy them time to get to a cath lab. This was the first time they used it in this situation and it worked. It did what it was supposed to do and they were able to get a pulse.

The relief was felt by all of us.

There was still the uncertainty though. He was still out so we didn’t know what damage had been done or what he would be like when he was no longer sedated. He was sedated for four days so the uncertainty dragged on.

Thankfully, he had two stents inserted and over the next several days showed signs of improvement. He was released 10 days after the drive to the hospital where we joked about him going to the ER for indigestion.

Now, you would never know what he went through just by looking at him.                                                                                                       

But there is still uncertainty. He wore a life vest (a portable defibrillator) for three months which would alarm if the leads were not connected properly. Waking up to an alarm such as that wasn’t good for any of our hearts!

He still has chest pain but is it from all the broken ribs or is it a problem with his heart? He recently had both chest pain and jaw pain so we went to the ER (again, the consequences are worse if you don’t go than if you do!) and he was admitted for a few days. The tests came back showing no new heart attack but no good explanation for the pain.

So we live with the uncertainty.

It’s still early in this new health journey so I am sure we will be able to manage these issues much like we learned to manage Robert’s health uncertainties.

In the meantime, we are certain in our quest for good health for both of us. We walk most every day, we are eating healthy (notwithstanding the Cinnabon I had this morning) and are grateful to have more time with each other and our family. And, hopefully, a cruise and a trip to Disneyland is in our future!

Catching Up

It has been quite a while since I posted in this space.

I miss it.

I miss writing. I miss sharing my caregiving journey in the hopes of helping others. I miss the connections with those who grace me with their time reading my random thoughts and I miss the comments people share.

I miss getting these random thoughts out of my head. If you have ever struggled with a decision (and, frankly, who hasn’t) you most likely know it helps to write down your thoughts and (my personal favorite) a pros & cons list.

Writing helps sort through what is swirling in our brain and usually gives me some clarity.

So here I am. I am back! My plan is to not wait another two years to write another post.

Let’s get caught up.

My last post was about our decision to place Robert in a facility. That was in May of 2022.

We searched and searched for facilities for Robert. We used his Regional Center to help us find the right facility for him. We toured several and Robert was enthusiastic about each one.

We searched for almost two years and were rejected by every facility. “He has too many seizures.” “He is big and needs a lot of physical assistance and we have small staff.” “Our hallways are too small to accommodate any more people in wheelchairs.” “He requires too much care.”

In the middle of our search, Robert was hospitalized for aspiration pneumonia. I explained our situation to the nurses and they were very sympathetic. They suggested I discuss finding a facility with the discharge planner once Robert was ready to go home.

I did as they suggested and talked to the discharge planner. She was unable to find a facility for long-term care. I asked her to find a place for short-term rehab since he would need it after being hospitalized for ten days and she pushed back and asked if I would take him home after that. I told her if I could but that I would find out from them at that time if they could take him long-term. She said that is called “dumping” if I didn’t plan to take him home and she couldn’t risk her reputation with these facilities if I did that. At that point she refused to look for short-term rehab options and only came up with a couple of very low rated long-term options for me.

I was sick to my stomach. I would never abandon Robert but I knew I could no longer care for him. I had been trying to find a facility for him for almost two years! I was so angry that I just had him released back home – without the rehab he needed – so we were in a worse position than when we started.

Robert eventually got up to baseline with the help of outside PT and Richard and I using the lift during the worst of it.

Several months later, I needed to have a few minor surgeries so I found a Skilled Nursing Facility to keep him for a month while I had the surgeries and recovered without having to do the physical care Robert needed. I ended up needing more “respite” time because of infections after my MOHS surgeries and needing cataract surgery on my other eye. Robert ended up in the hospital with Covid that he contracted in the facility and was able to return to the facility once he recovered so he could have physical therapy to get stronger.

Robert then contracted RSV and was again hospitalized, recovered and returned to the facility again for rehab.

In the meantime, we welcomed our first grandson and have since welcomed another along with our granddaughter! 

One day while cleaning out the closet at Robert’s facility, I read the care notes left for the CNAs. “Two person assist.”

Oof.

I was doing Robert’s care at home by myself (although Richard helped as much as he could) so seeing “two person assist” in writing really hit me.

I told the facility I was unable to care for Robert in our home any longer. I had the hospital discharge nurse’s words in my head: this is “dumping.”

It is pretty typical to experience guilt after placing a loved one in a facility but to think you are now doing something called “dumping” increases that guilt exponentially.

I really wasn’t dumping him. I was doing what was best for all of us and had no other option.

Robert has been in the same facility now for almost a year and a half and gets very good care. Yes, I still have to stay on them for various issues but, to be honest, he is living his best life. Everyone loves him there (residents and staff alike) and he participates in all the activities. He’s the bingo king and even has former residents sending him gifts and cards. As he likes to say, he is doing “super, amazing, excellent and great, great, great!”

For almost every day of that year and a half I wondered if I did the right thing by moving Robert to the facility. Friends and family assured me it was for the best but I still had that nagging doubt. Seeing him so happy and well cared for helped. Being able to spend time with our new grandson without worrying about Robert was amazing. Going on vacation with Richard without the worry of finding respite care was a welcome relief.

Still, my doubts always found a way to creep in.

Until Richard had his cardiac arrest.

I now really truly know in my heart Robert is in the best place for him but that it is also the best situation for us.

While I will continue to write about Robert and spread awareness about epilepsy, I will also write about the experience with Richard’s cardiac arrest and his recovery in the hopes it will help other caregivers.

Thank you again for your time and your support!