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!

The Perfect Day; the Not So Perfect Respite

My daughter’s wedding was the perfect day. Absolutely perfect.

Rachel and her fiancé (ack! Husband!) planned every last detail to perfection. Matt (her husband – see? I’m starting to get the hang of that), even called it a “Pinterest Perfect” wedding. And it was!

Rachel and Matt
First Dance

Every mom wants her daughter to have the best day on her wedding day and I am very confident Rachel did. Everyone felt the love and joy and had a wonderful, lovely, fun, laughter-filled  – yes, even excellent – time.

A week after the wedding they still have that after-wedding glow. (Pretty good since they’ve been together for eleven years – high school sweethearts!)  Sigh.

I just love love!

I have to add I was quite proud when I realized Rach was using spreadsheets to plan her special day. Yep, that’s my girl!

I did my share of planning for the care of Robert and our pets since we would be out of town for a few days for the wedding.

We used pet sitters referred by a friend and introduced all the animals to them several times before we left. I labeled all the cupboards with post-it notes, labeled the medications and supplements and also created an “About” document for each dog (and even the turtle!). The staff at Peaceful Pets was amazing! The two sitters who visited and stayed with our babies sent photos and an update every day and I was so thrilled (and a little amazed) there were no issues – just lots of loving care.

Planning for Robert’s respite care started last fall. Since Robert is a client of the local Regional Center, we get 14 days of respite care per year.  

In theory.

In reality, we haven’t had a respite day in two years. Robert’s case worker tells me that finding a care home to temporarily take a male, mostly non-mobile client (Robert needs assistance if walking with a walker and when transferring from his wheelchair) is pretty much impossible.

I accepted that and realize I am luckier than many since Robert has a terrific day program to go to during the day while I am at work. However, I really wanted to spend a few days (and a few overnights) of non-caregiving time to help Rach with the last minute details of her wedding and to fully enjoy and experience this important life event.

I felt a little guilty not including Robert but I knew he would be just as happy hearing about the wedding and seeing the pictures. Those who know Robert know this to be true.

So last fall, I asked Robert’s case worker to please find a place for him for five nights.

I knew this was not a sure thing so I simultaneously worked on Plan B: finding a Skilled Nursing Facility to take Robert and paying for it out of pocket. I hoped I could talk Other Brother into this private pay option. (Thankfully, Other Brother is very generous and readily agreed to pay for it.)

I chose the facility that Robert is familiar with and where he stayed after his hospital stay three years ago. He received good care then and I thought the familiarity of the facility would result in a successful respite stay. I wanted Robert to be happy and well-cared for and ready for some wedding stories when he came home.  

In preparation for Robert’s stay, one of his neurologists wrote an order for a respite stay. I sent her Robert’s medication list and schedule which she included with her order.  I called to confirm the orders had been received and confirmed the dates of respite.

The admissions director was pleasant and assured me everything was ready for Robert. We discussed the time of day to drop him off since I didn’t want to bring him during a busy time, such as a shift change.

I updated my “About Robert” document which explains how he needs help dressing and bathing, what his seizures look like, his incontinence as well as his little quirks and his love for Rocky Road ice cream (I always like to throw that in since it is so important to Robert).

I now wonder if I stressed enough how much assistance he needs when transferring from his wheelchair. I thought I was clear but doubt is creeping in.

When it came time for respite, I loaded the car with incontinent supplies, Robert’s suitcase, walker, razor and toothpaste and, of course, his word search book (and an extra one, just in case). I took Robert in and met the nurse and the CNA. They asked me if I had the admissions packet.

Um, no. I don’t even know what that is.

What hospital did he come from?

Hmm. They sounded confused at first then assured me they knew Robert was coming but explained there was usually an admission packet. I told them I didn’t have that but I gave them a copy of the medication chart/schedule as well as his “About Robert” document.

Before I could bring in the rest of his supplies, Robert needed to use the restroom. I took this opportunity to show the CNA just how much assistance Robert needs to transfer to the toilet. She was grateful I was showing her what we did at home. She also said she would read the “About Robert” document and would be with Robert during the morning shift the next few days.

Awesome – consistency.  

After getting Robert settled and making sure the nurse had the medication schedule, I left while Robert ate lunch. Robert was happy and enjoyed meeting the nurse and CNA.

Later that afternoon, I received three calls from the facility about various admission questions and paperwork. They wanted me to return to sign some documents. (You know, I was just there!) I explained I was getting ready to go out of town and could not come back to sign any paperwork. The rep seemed satisfied with that and said we could handle everything when I picked Robert up on Monday.

I received another call the next day with the same questions. Different rep, same questions. Goodness, people! Get it together! I gave her the same explanation and she said that was fine. I asked how Robert was doing and she checked on him for me. She called me back to say he was doing great.

At noon on Friday, I received a voicemail to call the facility.  I called back and was told Robert was “found on the floor” of his bathroom with all of his clothes off.

Photo taken Sunday, July 9

What do you mean “found on the floor?” Wasn’t someone with him?

Apparently not. The nurse explained that Robert wheeled himself to his room and then went to the bathroom by himself.

My first question was if he was wearing his helmet (phew - he was) and if he was hurt (they said he wasn’t). The nurse said they would check vitals every 15 minutes to be sure he was okay. I stressed (and I mean stressed) that he cannot go to the bathroom by himself. HE NEEDS ASSISTANCE!

I was pretty clear.

The nurse said he completely understood and was very apologetic.

I tried calling the facility seven times on Saturday (wedding day!!) but we were in the mountains and service was sketchy. (I found myself doing what a friend who lives in a rural area of Arkansas does – holding my arms out above my head in search of service.) No luck.

The wedding day activities picked up and I stopped trying to call. (I was pretty busy making sure my recurring tears weren’t ruining my make-up!)

Just before 10:00 p.m. (and during the wedding reception!) I glanced at my phone and saw a missed call from the facility from a couple of hours earlier.

Well, crap. This can’t be good.

I was able to use a land line and got through to the facility.

Photo taken Sunday, July 9

Robert had fallen. Again. This time, the nurse tried to blame Robert “he was eating dinner in the dining room then just wheeled himself into his room and tried to use the bathroom.”

Oh. I see.

The person who you were told needs assistance was left to his own devices and fell.

Twice in four days.

I can understand an accident (heck, Robert has fallen in our care before. Accidents do happen.) To me, this wasn’t an accident – this was from people not paying attention. I left these people in charge of Robert’s care and expected him to be returned in the same shape as I left him.

Certainly not worse!

I had planned to pick Robert up on Monday but we got back into town mid-afternoon on Sunday so I decided to pick him up early. I really couldn’t risk Robert falling a third day in a row.

I called the facility to inform them I would pick Robert up in about an hour. The nurse was resistant to me doing so and told me she had to call the on-call doctor or would have to mark Robert as leaving “against medical advice.” She then told me if that happened she couldn’t release his medications to me. What the heck?

I told her I would be there to pick him up and to do what she could to get Robert released. This was the same nurse who called me the night before about the fall and I reminded her why I was picking him up early.

By the time I got to the facility, everything was set for his release. The CNA had packed up his belongings and the nurse gave me his medications. I asked for their medication schedule so I knew what he had taken so far that day. There was a great deal of consternation about providing that to me since there were nurses’ names on the schedule. They finally were able to print out a list of the medications and when they were supposed to have been administered.

I reviewed the list before I left the facility and realized they completely changed the medication schedule that I (and the doctor) had given them! The two medications that have to be taken with meals were not given with meals at all. The bedtime dose of Zonegran had been switched to the morning which made no sense! If I hadn’t asked what he had been given that day, I would have doubled his dose of Zonegran for the day!

Of course, the switch in the medication schedule very well could have contributed to his falls – who knows if a seizure made him fall or if the change in medication made his balance even worse than it already is!

Photo taken Thursday, July 13

On top of the revised schedule, they ordered extra medication for two of his prescriptions. I gave them enough medication for the respite stay plus an extra day as a back-up. They didn’t need to order more meds! I asked if this was going to cause an issue with his regular prescription schedule and the nurse said she didn’t know. The CNA chimed in that I should take the medications just in case it does. I took it but don’t know why it was ordered in the first place. It was completely unnecessary.

As I was checking the medications to be sure they returned all of them to me, the nurse told me that Robert had a small bruise on his right hip.

We finally left and it was time to get Robert into bed by the time we got home. I changed him and that is when I saw his bruise.

Oh. My. God.

It was larger than the size of a softball and very dark and green. I then noticed a scrape on the back of his leg and another bruise under his right arm.

A small bruise?! Not even close. Thankfully, Robert didn’t remember falling and has a very high pain tolerance. Nothing hurt him at all. Robert did not remember anything about the facility except they had great food. I am so very grateful for this small miracle.

I worried about the bruise, though, since it looked so terrible and I made an appointment with his primary doctor the next day. She was kind enough to get us in even though it meant double-booking an appointment. She examined all of his bruises and the scrape and told us to ice the hip bruise. She said it was in the general area of the liver and gave me signs to watch for that would indicate a liver problem.

I couldn’t believe how serious this could be! After the appointment, I called the admissions director and told him I had just come from the doctor with Robert. He knew nothing about any of the falls but was very apologetic. I asked for the fall reports and a refund. He said he would definitely bump my concerns up to his “team” and would call me back.

When he hadn’t yet called me by mid-day on Tuesday, I called him. He promised the fall reports but said they needed to be retrieved from the medical records department. He also said he couldn’t give me a refund. I reminded him that Robert came home in worse shape than he went in and he apologized but he couldn’t get the refund approved.

I next left a message for the facility director who never called me back.

Late that afternoon, the admissions director called me back to say the reports were coming “soon” and that I would get a refund after all.

Hmm. I’ll believe it when I see it (which I haven’t at this writing).

It took two more days to get the fall reports (which indicated “no injury” with regards to both falls!).  I understand that bruising can show up after a day or two but the nurse TOLD me about the bruise. She had to have seen how big it was and yet there was no mention of it in the reports.

I was absolutely livid. How could the care be so bad in such a short period of time? Of course, I did what I usually do (and what many caregivers do): wonder how I could have done things differently in order to get a better result. Better instructions? More phone calls? Maybe with Robert’s cognitive issues he shouldn’t be in a skilled facility?

Ugh. No. I had to stop. I prepared for this. I told them Robert needed assistance (and certainly stressed it after the first fall). This was not my fault.

This was on them.  

I filed a report with the licensing agency for this facility and notified them about the falls and medication issues. My hope is that the investigation results in better care for others in the facility.

Thankfully, Robert’s bruises and scrape are healing and there does not appear to be any liver damage. His seizures haven’t increased due to the medication incompetence (and, thankfully, I didn’t overdose him when I brought him home).

Things could have been much, much worse and since sharing this experience I have heard from several people who did have much worse experiences when leaving their relatives in the care of a skilled facility. A few had horrific experiences.

I understand many of these facilities are understaffed so I actually do not blame the nurses or the CNAs. I really think they try to do their best (except the nurses who change medication schedules. Those nurses I do blame!!).  The reason I filed a complaint is not to get the staff in trouble but in order to make sure the administration sees there are problems and, hopefully, decide to increase staffing ratios or make other changes so no one else suffers because of neglect or lack of resources.

Those of us who can advocate for better care must do so not only for our own loved ones but for those who cannot speak for themselves. Most of the residents of a skilled facility are in no position to advocate for themselves and many of them do not have someone who can advocate for them.

Rachel and Matt
After the "I Dos"

The softy in me loves love and I am so grateful to have been part of Rachel and Matt’s perfect day. (I still get teary when thinking about their wedding!)

The fighter in me also believes in advocacy and tenacity and I promise I will not stop insisting on quality care for not only Robert but others like him.

We all deserve love and we all deserve the best possible care when we cannot provide it for ourselves.

I will keep you posted on the investigation but, in the meantime, please share your own Skilled Nursing Facility experiences (good or bad). 

Welcome Back, Robert

Sometimes there aren't any good decisions in caregiving. 

Mail call! A card and bookmark from Carol

Decision number one: Do we send Robert to the hospital?

Robert couldn’t walk.  I mean he couldn’t even turn his legs to transfer from getting out of bed to the wheelchair. I could see him thinking about it.  I could see that he really was trying to get his brain to tell his leg to MOVE! but the signals got crossed and he just couldn’t do it.  

I called his neurologist who had just seen him the previous week and explained that his decline was even worse than before.  Since they had suspected a compression of the nerves in his neck, I was advised to send Robert to the hospital.  It seemed to be the quickest way to get the MRI done in order to confirm that diagnosis and if it didn’t confirm it, to figure out what exactly was going on.

We all know how that went.

Every time Robert goes to the hospital there is a significant decline afterwards and a significant amount of work involved in getting back to baseline.  Usually he falls just short of baseline so we end up with a new baseline.

I don’t take sending Robert to the hospital lightly. Partly because I am selfish and realize the post-hospital decline not only affects Robert but me and Richard too.  (There has to be honesty and self-awareness in caregiving. It helps.)

Robert couldn’t walk so there really wasn’t a choice for me.  My concern was if there was a spine compression and he was losing mobility so quickly, what more could happen?  He needed answers as soon as possible so the paramedics were called and the ER wait ensued.

A wonderful surprise from a Guardian Angel!

Decision number two:  Do we take Robert home or find a rehab facility that provides physical therapy?

Um, he’s been in a hospital bed for over a week and couldn’t walk when he arrived.  I’m pretty sure he still can’t walk and has now lost muscle strength.

Richard and I were already past the point of being able to care for Robert.  The decline happened so suddenly (or felt like it) that we just did what we could to keep up.  Sometimes even to our own detriment.  Like the time Richard physically lifted Robert from the wheelchair and moved him to the bed (and then suffered through extra back pain for several days). 

Let’s go with a rehab facility.

(It helped tremendously that Robert was completely agreeable to this plan. Many times when making caregiving decisions, the caree and caregiver are at odds at what would be best.  That makes the decision-making even more difficult.  It’s just the worst.)

Decision number three: Which rehab facility do we use?

Our first option for Robert was to get him in the hospital in-patient rehab center. I was told some of the new doctors/residents don't even know about it.

Even though many of the nurses and a couple of the doctors and physical therapists raved about this in-patient rehab center they all warned me that Robert would have to be evaluated by a team and they would be the ones to decide if he could be admitted there. 

If he was accepted it would be so easy!  The hospital would discharge Robert and then wheel him to the rehab center (which was in the hospital but not considered part of the hospital). He would get checked in and they would do 3 – 4 hours of rehab per day!  Wow! 

The goal would definitely be to get Robert able to move and transfer so he could come home.

It felt like an exclusive, secret club and I wanted entrance granted for Robert. Please, please, please!

One doctor evaluated Robert.

Then he came back with another one.

They asked Robert questions, then asked me questions.  Dang it – I don’t even know what they are looking for so am stressed out about giving the “right” answers.  Plus I didn’t have time to study!!!

After a while I realized they were not going to accept Robert into the program. Wait – I want to change some of my answers!  “He probably won’t be able to meet the goals we set each week.” Could you please just try him out to see?  Maybe he’ll surprise you! 

In my heart, I knew Robert couldn’t tolerate 3 – 4 hours of physical and occupational therapy. I mean, his favorite time at Day Program is when it’s Recliner Day.

This now means we have to scramble to find a rehab facility.  The discharge planner helps with this and sometimes you get a really great discharge planner who goes the extra mile and sometimes you get one who just does things by the book. 

The entire hospital stay has been challenging so it did not surprise me that the discharge process was not smooth. I expected it to be smooth because I usually have a terrific experience at discharge but not this time.

The discharge planner gave me several options for Skilled Nursing Facilities that have physical therapy programs to accommodate Robert.  I asked her which ones she would recommend. She couldn’t say. 

Okay, give me a hint. Sounds like? 

Instead, she asked me if I had a particular one in mind. 

No! I’m asking you for help to find a good one.  She did help by sending out an email to all SNFs, giving Robert’s info and asking if anyone had availability. She referred me to the www.medicare.gov site so I could check ratings. It was some help but it wasn’t anything extra. 

This would have been a good time to have someone doing something extra.  I was frustrated. It had been a long two weeks (or close to it) and I just wanted someone to make this decision easy for me.

That wasn’t to be so I got on the phone and called a few facilities.  I contacted Robert’s Day Program for references.  I called Robert’s case manager at his Regional Center. I checked ratings, checked availability and checked what the PT schedule would be. The last thing I want is to choose a place that is going to just let him lie in bed all day and do 10 minutes of physical therapy on occasion.

After all of this, the place I settled on is a place Robert has lived before. When I first moved Robert to Sacramento, he went to a SNF for about two months then I moved him into a Residential Care Facility for the Elderly.  He was there on a waiver and under an exemption (since he is in his forties).  Robert lived there for a couple of years and enjoyed it until we ran into some problems with the management and it was apparent that Robert and the facility were not the right fit for each other any longer. 

It was not easy choosing this facility but I knew he would be in the SNF portion of the facility and not the Assisted Living area.  I knew that management had changed since Robert last lived there (a few times, actually). I hoped that the familiarity of it would somehow aid Robert in regaining mobility.

I even thought the Universe was trying to tell me something.  The SNF had an available male bed; the PT department was stellar and could work with Robert two hours a day for 5 – 6 days a week (which seems doable for Robert); the location was halfway between home and work and there was a bit of comfort in going to a familiar place. 

Robert was on board with whatever place I chose.  He told me he remembered this place but I’m not sure he does. 

Once we arrived, I didn’t recognize anyone but the intake social worker remembered Robert. Robert said he remembered him too. Who knows if he really did but it makes me feel better that Robert at least thinks he remembers this place (and fondly).

Robert happily settled in while I pushed away the thought that if this doesn’t work out I have no one but myself to blame.  After all, I know the problems we had here before but I am optimistic the Universe knows a thing or two about what is best.

Decision number four: Having faith in the caregiving decisions I have made. 

Working on it.