Celebration and Remembrance

Twenty-nine years ago Richard and I were married in our backyard. It was a Labor Day weekend and we threw the wedding together in five days! Why so quick? Trust me, it wasn’t a shotgun wedding but Princess Diana had just died unexpectedly and that kicked my “life is short” philosophy into overdrive. 

Our family and friends now had Labor Day plans (or changed the ones they already had), my mom gave us her wedding rings (her husband had died years before), mom made a ring-bearer pillow for Richard’s son to carry down the “aisle,” I got the girls fancy dresses and baskets of flowers for their flower girl role and they tossed in a little toy bird that chirped. 

We made use of our Costco membership for food for the reception and an attorney friend who was also in seminary agreed to marry us. 

Five days. Life is short and we were going to make this happen.

It went off without a hitch although it wasn’t without a full day of activities. Rachel had a soccer game in the morning, a birthday party in the afternoon for all of our September birthdays (Richard, Robert and Other Brother). The Officiant and Best Man also had September birthdays so it was a massive birthday party. 

Then the wedding! (I’m pretty sure I showered sometime in between all the activities). 

Robert was a good sport considering our wedding took place on his actual birthday. He got cake so he was happy. 

Our anniversary and Robert’s birthday have been tied together for 29 years and counting. Many of those years were celebrated with Robert, usually with a combo anniversary and birthday dinner – sometimes at home, sometimes out at a restaurant and sometimes at the hospital or his skilled nursing facility. 

This is the first year celebrating without Robert. 

He turned 60 last year so we made a huge deal of his birthday and I am so glad we did. We celebrated him a few days early so Pattae and the facility could participate and he wore a crown and “Birthday King” sash, had cake and ice cream and shined his famous Robert smile all day long! 

I will never forget his deep dimples and the way his eyes lit up with his smile. 

Richard and I will be going out to dinner – just the two of us this year. 

We’ll say “cheers” to Robert and share memories of him because that smile will always stay in our heart. 

And I will be forever convinced that life is indeed short. 

How Alone Are We Really?

 

Taking care of Robert involved a huge team. Richard and I were primarily his caregiving team for more than a decade but Robert had other caregivers, doctors, specialists, day program staff, physical therapists and, eventually, skilled nursing facility staff, involved in his care. This doesn’t even take into account the ER doctors and nurses, the pharmacy staff and the companies that provided his medical equipment or the one who supplied his briefs. 

Oh shoot, and I almost forgot about the transportation companies, their drivers and the other riders on the  van through the years! There was also the Regional Center and the many service coordinators Robert had. There was the social worker from IHSS who visited annually (not always the same person but some years we got lucky and had a familiar face). 

Because I shared Robert’s story online and was active in epilepsy awareness and caregiving groups there were many more people who cared for Robert.

Robert’s care and social circle was huge and this does not even include our family! 

Oddly enough, it often felt like Richard and I were on our own caring for Robert. After all, we were the ones changing his soaking wet briefs in the morning and doing several loads of laundry a day. We were the ones logging his seizures, behavior and vital signs to keep an eye on any sort of seizure cluster coming or hint of illness (of which there were many). I was the one to sort his meds for the week and make sure we didn’t run out. 

We had a huge team and took advantage of many resources available to Robert but we still felt alone. 

I suspect this is similar to what other caregivers feel because we are the ones ultimately responsible for our loved one’s care. 

I quite literally felt responsible for keeping Robert alive. 

As parents we feel that way with our babies and toddlers but, if we are lucky, they grow up to be independent, thriving adults. 

As caregivers, there is a reverse trajectory for our loved ones. They decline. Their ability to manage their money, decisions and household declines. Their illness gets worse. Their mobility often worsens and many times they lose the ability to physically take care of themselves. 

And there is no timeline for how long this goes on. Not only that but we don’t always know just how far the decline will go. Sure, we can look up statistics of the disease but that does not give us a definite timeline. Heck, I had a doctor tell me Robert probably had three more years to live – tops. He lived 11 more years and died of something no one saw coming!

We do the best we can to keep our loved ones alive. They depend on us and we don’t just watch for the next pneumonia but we help them thrive. 

We add to our caregiving team. We set up social services. We get to know the doctors and specialists and physical therapists. We add in home services or eventually place our loved one in a facility. 

Robert’s whole team worked to not only keep him alive as long as possible but as happy as possible. We all had the same goal: keeping Robert (as he would say) “super, amazing, excellent and great!” 

Robert wanted to spread epilepsy awareness so we signed him up for various studies (one saved his life years ago when he was testing out new equipment for patients in septic shock). He was very social so we kept him in his day program even when he moved to a skilled nursing facility. 

The staff at the skilled facility recognized Robert’s love of people and games so made sure he participated in group activities instead of keeping him in his room. He depended on people to transfer him from the bed to the wheelchair so this took extra effort which we greatly appreciated. Our beloved special caregiver for Robert, Pattae, made sure Robert was entertained and kept us informed of his health when we couldn’t be at the facility. 

It was so difficult to lose Robert. I still miss bringing him home to get his hair cut or to give him a special treat (usually involving a chocolate Frappuccino or burger and fries). Richard misses playing bingo with him every Friday afternoon. I miss watching Family Feud or Wheel of Fortune with him. I miss watching him toss a toy to Taz down the hallway in our house. 

I also terribly miss Robert’s team we created. I miss talking to his terrific doctors and nurses. I miss Pattae but thankfully we have stayed in touch. I am always on the lookout for caregiving jobs for her and refer her to anyone I know! I miss his day program staff and the friends Robert had there. I keep in touch with his service coordinator from the day program so that definitely helps.  I miss his physical therapy team and will never forget how good they were with Robert. 

It was so difficult to lose Robert but it was also difficult to lose everyone involved in his care over the years. I am grateful we had the awesome team that we did and am positive everyone played a part in keeping Robert around (and happy) much longer than anyone ever thought possible. 

As a caregiver, you may feel alone sometimes (or often) but it helps to create an extended support system and sign up for all the services your loved one qualifies for. Write down all the services and support you currently have and those on your wish list. Add to it as you think of those involved in your loved one’s care or the services you would like to have.  

You may not see it at the time but each of those people involved in the support system and services will contribute in some way to your peace of mind and your loved one’s health and wellbeing. Yes, you are the one doing the laundry and meds and keeping your loved one clean, dry and as healthy as possible but you don’t have to always feel alone. 

My Hoarding Tendencies

Robert died just over 10 months ago and I just yesterday boxed up some of his clothes. 

When he first died, people from his facility and day program wanted a memento to remember him by and I was so touched by their requests. People wanted a piece of Robert because he meant so much to them. 

I gave the Director of Nursing one of Robert’s Hawaiian shirts. A beloved staff member of Robert’s got one of his many 49ers hats. Robert’s lunchbox was given to his sweet day program administrator and she still sends me touching messages about how she often thinks of Robert during her lunch break. Robert’s bingo chips went to his lovely activity director. 

We gave wonderful Pattae one of Robert’s 49er sweatshirts. We still keep in touch with Pattae and I send her caregiving jobs information when I get wind of them. How can I not keep in touch with Pattae? 

Soon after Robert died, a friend’s dad fell on hard times and needed warm clothes. I boxed up a few of Robert’s sweatpants and shirts and gave them to her for her dad. 

The rest have sat in Robert’s dresser drawers or in his closet. Shorts he stopped being able to wear years ago, PJs he wore when he lived with us (I still picture him wearing these long back-closure pjs pushing his walker down the hallway), camp shirts with the Velcro buttons – even his Velcro close shoes. I have a drawer full of t-shirts he got from day program events and for each year of Epilepsy Awareness Day. He has a couple of ties – a 49er one for game day (of course) and another he wore to our dad’s funeral. 

We have his 49er blankets (yes, there are many) and dozens of reading glasses (I always had to have back-ups with me, in his room, in his go-bag – everywhere!). At least the glasses are now in a bag ready to donate to an organization that reuses frames and lenses. 

I was able to box up his shorts, a pair of sweats, knee-hi 49er socks and a few of his camp shirts. He was particular about his shirts. They had to have a pocket so he could keep his glasses in them. They needed to be Velcro-close to make dressing easier (first, when he could dress himself, then for me when he couldn’t any longer and finally for the Skilled Nursing Facility staff when he lived there). 

His red shirt still smelled like him. He loved that shirt and was in it often. 

I left that shirt (and his Route 66 shirt) in a drawer. His shoes are still there too along with a 49er jacket and those ties. 

Grief shows up in different ways and there is definitely no timetable for it. No “normal” way to grieve. There is no “normal’ way to part with a deceased loved one’s things. 

I recently read an article about this very subject in which Dr. Jason Singh explains that “getting rid of their things may feel like participation in their erasure.” I certainly don’t want to “erase” Robert and know that I won’t given our continued connections to those who loved him. Keeping those friendships reminds me how much joy Robert spread to everyone who knew him and how loved he was. 

Keeping those connections is more meaningful than keeping his shoes but I don’t think I will ever be ready to get rid of all of his things. Heck, I still have some of my mom’s shirts and she died 27 years ago. 

Do I have some hoarding tendencies? Sure. It’s not all bad, though! I am the person who people come to at work when they need a document from 25 years ago or wonder where our summer picnic was held in 2007 (a local bowling alley, in case you’re wondering).

Whether you dispose of or donate your loved one’s things soon after they are gone or you hold on to them for years (or something in between), know that you are doing exactly what is right for you. 

There is no right or wrong when it comes to grief. 

Epilepsy Awareness Month: Continuing Epilepsy Education

It’s November so that means it is Epilepsy Awareness Month. In past years, I have shared facts about epilepsy, interviewed people with epilepsy and spotlighted organizations that help people with epilepsy and their families. I have shared what life with epilepsy has been like for Robert. It was important to Robert to educate people about epilepsy and I wanted to help him fulfill that passion – that life goal of his. 

Robert is gone now. (That is still hard for me to believe.) As most of you know, Robert died on September 28. Not from seizures or Status Epilepticus or SUDEP (Sudden Unexpected Death from Epilepsy); not even from Aspiration Pneumonia which I thought for sure would be what did him in. (After all, that’s what the doctors told me in June when they were pressuring me to let them insert a feeding tube which I adamantly refused.)

No. It was none of that. 

It was Necrotizing Pancreatitis caused by gall stones of all things (which were found in June but treatment for that was not a high priority at the time because he was in such bad shape from aspirating after vomiting from the Pancreatitis.) 

Nothing related to Epilepsy.  

I suppose the argument could be made that the Pancreatitis was allowed to get so bad because somehow (maybe due to all the anti-seizure meds he was on) Robert rarely experienced pain. It was always so ironic to me since my husband, Richard, has dealt with extreme chronic pain since I met him and Robert never seemed to feel pain. I always wished that somehow their pain centers could balance each other out and Richard would feel less pain. (Although now that I write that down I certainly didn’t want Robert to experience more pain so my balancing out the pain centers idea kind of falls apart.)

Well, a quick google search actually says it is normal not to feel pain while on anti-seizure meds. This has just always been a theory of mine based on Robert’s experience through the years but apparently that is an actual side-effect of some of the medications.  

I’ve heard that Pancreatitis is extremely painful but Robert never complained about his stomach hurting. He didn’t act like he was in pain. He flinched a little in June when he was hospitalized and they pressed on his stomach but nothing after that. 

Robert casually mentioned at a doctor’s appointment the week before his last hospitalization that his head hurt but he was not acting in pain at all. Looking back, I suppose this could have been “referred pain” but this didn’t occur to me or anyone else. He was actually acting more alert than usual so there was no reason to suspect he was in pain or that anything was “off.” 

That last week he was alert, playing bingo and talking and laughing! I was actually feeling so good about how he was doing! Fewer seizures, less sleepiness – heck, his neurologist even reduced one of his meds and talked about eventually seeing Robert every six months instead of the usual every three month visits!  

This was all so promising! 

Obviously, though, there was a problem because four short days later he was in the ER with septic shock from this necrotizing pancreatitis! 

That’s why this was such a shock. 

As a caregiver, it is impossible to know what is going to come at you. You can say the same thing about dealing with epilepsy.  Medication side-effects, accidents, concussions, surgeries, and an eventual decline from all of it. It can be unpredictable, brutal and heart-wrenching. 

But there can be some really good days. Even good months and I am thrilled to look back on Robert’s last month and be able to say it really truly was super, amazing, excellent and great. 

I’m going to do my best to write something about Robert each day this month. Epilepsy is different for everyone but I hope some of this information will help others. I hope by talking about Robert’s experience it will help others with epilepsy and their caregivers. 

I hope to keep going with Robert’s goal of educating others about epilepsy. 

And I suspect it will keep Robert close to me and his friends, family and “fans.” After all, he did love to be the center of attention! 

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!

Major Changes

I’ve been working on this post for a couple of weeks. It is very hard for me to write and might be hard for you to read. 

We have made the difficult decision to find a facility for Robert. 

Ugh. See? That is a hard sentence to write! I hope it wasn’t too hard for you to read. 

Robert has lived with us for more than nine years. For several years before that I managed his care while he was in Skilled Nursery Facilities, hospitals, Assisted Living and a Residential Care Facility. 

How did we come to this decision? Why now? 

We first considered hiring another caregiver. We had a caregiver before the pandemic and Robert loved her. He also went to a Day Program five days a week. Both Evelyn and the Day Program were very helpful. Then the pandemic hit and we hunkered down. His Day Program switched to a virtual program and his caregiver hung up her caregiving hat. I really don’t think a new caregiver could give us as much help as what Robert needs. (Not to mention, much of his needs are through the night and I can’t have a live-in caregiver.) 

I haven’t posted much so this might be a shock to people who don’t see us every day. Heck, the decline has even been difficult for us to see and we are with him every day. 

My daughter has been gently telling me for a while now that it is probably time to think about another living situation for him. She sees how physically demanding it is on Richard and I and she worries about our health. Even Robert’s physical therapist knows how much we do and ends up giving me tips and exercises at Robert’s therapy sessions so I don’t hurt my back when moving him. His neurologist even said we might want to start looking for a place for him before it becomes an emergency situation. 

Hmm. I hear all of them saying something but I can’t quite put my finger on it. 

Not surprisingly, it has been difficult for me and Richard to admit there has been such a dramatic decline. 

Since moving in with us, Robert has gone from using a walker on his own to needing both me and Richard to transfer him from his wheelchair to the bed. He can walk about ten steps using his walker but only with one of us behind him, practically holding him up and definitely keeping him balanced. 

Robert’s swallow disorder has caused numerous bouts of aspiration pneumonia which land him in the hospital. A related and equally upsetting change: Robert can no longer have his beloved Rocky Road ice cream! Those bits of marshmallow and nutty goodness make him choke so it’s just plain chocolate now.

In nine years, Robert has gone from mostly dressing himself with my supervision and encouragement to me bathing and dressing him. 

Robert’s short-term memory has become non-existent. He will ask how we’re doing dozens of times during the day, even if we just left the room for a minute and returned. It’s groundhog day on repeat throughout the day. 

He loves to look at pictures which we have throughout the house but he needs reminding who everyone is and sometimes doesn’t make the connection that Richard and I are the same people in the photos. 

Robert loves his game shows and talks to Steve Harvey likes he’s his best friend but we have to be careful not to watch any of our favorite crime shows around him. If we do watch something with a disturbing scene we have to reassure Robert that it is not real. 

We try to stick to game shows.  

Meals take longer and longer. (I’m talking hours.) Robert is easily distracted by crumbs or folding his napkin just right. I recently learned this is called perseveration. You can see it in action here. 

Sleeping through the night is hit or miss now. We started using melatonin (at the suggestion of his doctor) which helps some. He still sometimes wakes up at 2:00 a.m., wide awake and asking if it is time to get up. 

He doesn’t make the best decisions. I used to be able to leave him alone in the bathroom until I caught him trying to pull up his pants and stand up by himself (he can’t do that without falling so that is a disaster waiting to happen.). 

Robert went from manageable urinary incontinence to occasional bowel incontinence to trying to stop himself from doing either once he’s in bed. He started to put tissues down his brief to stop urinating or having a bowel movement. I placed the tissues out of reach. He then just used his hands to stop urinating and to take the poop out of his brief. (Sorry for the graphic details but caregiving is messy and I don’t want other caregivers to feel alone if they’re dealing with the same situation.)

I immediately ordered onsie pajamas that zipped up in the back. There’s no way he could get the pjs off or his hands down his brief. I paid an exorbitant fee for overnight shipping but this was not a situation that was safe or healthy for him or us. 

The onsie works but, unfortunately, they make him so hot! After some research, I tried a different method to keep him clean which involves putting a folded sheet across him and tucking it in under the mattress so he can’t get to the brief. It seemed like a good idea until I saw him on the camera easily maneuver around that little hack. 

Back zipper onsie it is.  

I have tried to stay one step ahead of his decline but it is accelerating at a rate I can no longer keep up with. 

There’s been a decline. I mean, a dramatic decline in movement, cognition, memory and impulse control. All of it. 

And he is not going to improve. This is his neurodegenerative process due to his numerous concussions, uncontrolled seizures, brain surgeries and medications. 

What is hard for me about this decision is that he is not difficult to care for every minute of every day. He is still able to have conversations although his mumbling is much more prevalent. He is laughing at a game show as I type this. He is safe in his wheelchair, eating a snack and drinking his water while doing his puzzle book and watching whatever game show Richard put on. Taz walks by to go outside and Robert introduces himself as Robert Allen Wright then proceeds to spell it out for him. Robert pets him and tells him he loves him very, very much and asks how he is doing today. Sure, he seems to expect Taz to answer him but he doesn’t get upset when Taz stays silent. 

Because I am who I am, I just keep plowing through and taking care of him while not realizing or seeing his dramatic decline. That’s what I do. I see a problem, work a problem and get through the problem. (And deny the problem if I’m being honest.) 

I always had a vision of how my caregiving journey would end. Richard and I would care for Robert – in our home – and he would continue to end up in the hospital with aspiration pneumonia but one time he wouldn’t make it. I would be with him at the end just as I was for our mom and then, years later, for our dad. I am not trying to be morbid and I didn’t know exactly when this would happen but it is what I prepared myself for. With Robert’s health issues and numerous hospitalizations for pneumonia and close calls with sepsis, I thought this was a pretty good idea of how things were going to go. 

I like to plan and prepare. I should be an honorary Boy Scout. 

On the other hand, we all joked that he would outlive us all because, well, he’s Robert. 

Funny, though, how these “plans” for the future don’t always follow the script in our heads. 

So the script has to change. I don’t anticipate being able to find a suitable place for Robert until after the first of the year but I am starting the search. I have contacted his Regional Center but that is a slow process. 

Our caregiving will not end but it will take on a new direction. Richard and I will still oversee his care and make sure his needs are met and he is happy. I have a feeling Robert will bring joy to his caregivers just as he does to us and all of you.

I hope you understand our decision. 

The Deep Brain Stimulator for Epilepsy

It was a whirlwind of activity after making the decision in May to move forward with the Deep Brain Stimulator (DBS) for Robert. 

Sure, we started thinking about it three years ago but once we made the decision this year it was a flurry of pre-op appointments, MRIs, more MRIs, CTs, surgeries, and post-op appointments. 

I didn’t expect as many pre-op appointments so consider yourself warned if you decide on the DBS. Robert also ended up having three MRIs which is two more than we planned for. Robert cannot lay flat on his back without pain (which I mentioned when making the appointment) but apparently that was interrupted as “oh, I’m sure he’ll be fine.” 

Well, no. That means he will not be able to lay still. Really. He was squirmy throughout the entire procedure which made it last even longer than it should have. It also didn’t give the neurosurgeon good enough pictures to map the DBS placement. 

We tried for MRI #2 (with sedation this time) but Robert fell at home the day of his appointment and was so weak I couldn’t get him in the car to get to the appointment. Through a herculean effort by the surgery and MRI schedulers, they got him in two days later. I arranged for a transport van so I wouldn’t have to count on Robert’s ability to get in and out of the car. 

They tried MRI #2 with a light sedative which didn’t work so they had to completely put him under. Finally, the MRI was done! 

Surgery was scheduled for the following Monday morning (again, we relied on a transport van and ended up using a couple of different transport services for all of Robert’s appointments and surgeries just to ensure we got to each one). As Robert was getting prepped for surgery the surgeon came in and said the MRI wasn’t done properly (the surgeon ordered three particular scans and only two of them were done). He couldn’t place the DBS without another MRI and he wasn’t sure if the MRI could be done that morning because of all the moving parts (holding a surgery room for post-MRI, getting the anesthesia team on board to put him under for the MRI, and figuring out if there was even an MRI machine available!). 

It's 6:00 a.m., it’s taken a huge effort to get Robert to this point and now we may not be able to do the surgery today? I wondered if this was a sign. Maybe we shouldn’t do the surgery after all. I stared dumbfounded at the surgeon. A few tears of frustration leaked out. He was very apologetic, the nurses said they never had seen this happen before, everyone said how the MRI team never makes these mistakes and it was unheard of to see this happen. 

I get it. Mistakes happen. The whole MRI situation was chaos anyway so maybe the techs were overworked that day trying to squeeze us in and just got sloppy. Whatever the reason, the end result was Robert had to get another MRI before he could get his surgery. 

The surgeon was impressively calm talking to me about the situation but I could tell he was on a mission. I don’t know what he did or how he did it (or if anyone got fired over this ordeal) but he made the MRI happen. Robert was rushed off to get an MRI with the plan to do the surgery immediately afterwards. When Robert was wheeled away, the surgeon told me he was not even sure the hospital would hold open the surgery room for as long as he needed but he was going to give it a shot. 

That was surgery number one. The MRI got done (properly), the surgery room was held open and Robert got part one done of the DBS implant. 

I am incredibly fortunate that none of this rattles Robert. He doesn’t worry, he just always goes with the flow with a smile for everyone no matter what is going on around him. 

Usually, patients are in the hospital for just one night after the first surgery. Robert stayed three nights due to chest congestion and his white blood count going up. I was worried about aspiration pneumonia and insisted he get put on antibiotics before it got out of control but the doctors wouldn’t do it. (I was so insistent that a nurse practitioner put him on them for a day before the doctor overrode her.) 

The DBS is implanted in two stages. The leads are placed in the brain during the first surgery and the battery is placed in the chest and hooked to the leads during the second surgery. 

The second surgery was much less eventful – oh, well, aside from the earthquake that happened during it. Apparently, we felt it in the waiting room, the nurses felt it during surgery but the surgeon didn’t notice it at all. Because, apparently, he has one setting: cool as a cucumber. 

The last piece of the DBS process is to have it activated. After Robert’s second surgery, we were sent home with a box containing everything needed to activate the device. The surgeon doesn’t activate it as that’s done in the neurologist’s office. The appointment should be within a week of the second surgery but ours was six weeks out. The surgeon was going to try to work some more magic and get us in sooner with Robert’s neurologist. 

Between the surgeon’s message, my calls and the luck of the neurologist not being called for jury duty, Robert was able to get an earlier appointment. 

DBS activation was on the books! 

My next post will be about activating the device but I also want to answer any questions you might have about the Deep Brain Stimulator. I’m not an expert, of course, but as a caregiver who has gone through this with my brother I can possibly address some concerns or questions you have if you are considering the DBS. 

Looking for Answers

Something is going on with Robert that I haven’t yet figured out. 

During the eleven years Richard and I have cared for Robert, there has been a dramatic decline in his functionality and mobility. It isn’t a straight downward decline but more like going down a staircase. Robert is stable for a while, then gets sick and loses some functionality and goes down to another step. He stays at that step for a while then gets sick again and we repeat the process. 

In the last eleven years we have gone down a lot of steps. 

Keeping Robert at baseline means doing my best to prevent him from getting sick. Seems easy enough but he gets sick not just because he picks up germs from other people but because he has a swallow disorder and easily aspirates which turns into pneumonia (which leads to another step down the staircase). 

Robert’s bouts of decreased mobility are usually explained by three things: the flu, aspiration pneumonia or as an indicator of seizures (the prodromal phase).  

He has very specific symptoms when he is getting sick. Increased pulse rate, decreased blood pressure, lots of confusion and weakness making it difficult to stand, walk or even transfer. If he has the flu or pneumonia he also runs a fever. 

When his seizures are coming he has a high pulse rate and he’s confused. 

Once we figure out what is causing these symptoms we can move on to treatment (rescue meds for seizures and usually the hospital for aspiration pneumonia or the flu since that usually turns into pneumonia). 

I love puzzles but this can get complicated. 

Robert started having worsening mobility and confusion about a month ago. He is acting just like he always does when he is getting sick. 

However, his vitals are fine. His blood pressure is lower than normal but I attributed that to his overall weakness. 

Since March, Robert has left the house only for physical therapy and for his flu shot so I knew it was highly unlikely he picked up COVID-19 or the flu. 

He has had more frequent aspirations and choking episodes but he would run a fever if that was turning into pneumonia. 

He had seizures one day during all this but not since. 

There is something wrong but it’s not his usual three issues. 

His GP moved back east and Robert was not set up with a new doctor yet so I reached out to his movement neurologist. She keeps an eye on his parkinsonism and knows how fragile he is. She speculated that he may have a urinary tract infection (UTI). This would explain the confusion and the mobility issues! She’s a genius! Robert would be good as new in no time! 

Catching the urine was a whole other issue but I finally got some. Just a little but enough to run the test. 

That came back normal. 

Ugh! I was really hoping for a UTI! (I know that probably sounds ludicrous to anyone other than a caregiver but I just wanted an explanation.)  The neurologist said it is possible “this represents progression in his underlying neurodegenerative process.”

No. That’s not what I want to hear. I want to find a problem that we can fix. 

I was so frustrated that we didn’t have any answers that I asked his neurologist to run bloodwork to see if he had an indication of an infection and also asked for another urinalysis. Maybe if I got more urine for the test it would be more accurate. She obliged. 

In the meantime, I set Robert up with a new GP. 

I took him in for the bloodwork. Later that day, I was able to get a full cup of urine! I was never so happy to see so much pee! I rushed to the lab and got there fifteen minutes before they closed. PLEASE let this give us the answers we need! 

The bloodwork came back mostly normal. The urinalysis took longer but came back Friday night. There were quite a few abnormal readings but the neurologist said it wasn’t a UTI and handed me over to the new GP to follow up. 

In the meantime, Richard and I have had some very difficult days trying to get him up and around (Robert is a big guy). Richard and I struggle to move Robert around. It takes both of us to get him out of bed and into a wheelchair then over to the bathroom. I’ve given up on dressing him in anything other than his pjs. (Luckily, we’re in the middle of a pandemic and wearing pjs all day every day actually isn’t all that unusual now.) 

Since we can’t risk hurting ourselves we decided to try new routines and found one that is working! We are changing Robert’s brief in the morning while he’s in bed. We give him breakfast and have him drink water and juice and watch television to wake up a little bit before trying to get out of bed. That is helping! He is definitely stronger and more mobile after eating and drinking. Plus, he has a newfound love of Star Trek and who doesn’t love breakfast in bed?! 

It was such a relief to find something that makes even a little bit of a difference. Just making this one change helps us so we are not hurting ourselves and it helps Robert because not being able to move is getting frustrating for him. 

We still have to find the underlying issue and my hope is that it is something that can be fixed. I worry about kidney damage from all of the medications he is on but hope it’s something simple like dehydration, which we can fix. 

The puzzle of Robert continues but so does our persistence in finding answers so we can slow the inevitable steps down that darn staircase. 

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. 

Tips to Help Caregivers Manage during this Pandemic

The COVID-19 pandemic put much of our world on pause. Millions have lost their jobs or have seen a decrease in their work hours. Small businesses are going out of business or, at the very least, struggling to stay afloat. In the US alone, hundreds of thousands have been or are sick and tens of thousands of people have died. Families are caring for sick loved ones and grieving those they have lost.

Life is very, very different.

Life is different for caregivers, too. More than 40 million people in the US provide care for a loved one or friend and a great many of those are also employed. With the stay-at-home orders, loss of income, difficulty getting supplies, and the lock down of many hospitals and care facilities, the stress on caregivers and those they care for is at an all-time high.

Trish, Robert and Richard

What can caregivers do to cope with these situations and reduce their stress? These are a few suggestions to help you get through this extraordinary crisis.

Stay-at-home Orders. The Stay-at-Home orders are critical to keep people safe. Social distancing works. However, caregivers who live with their loved one know it is impossible to keep a distance while also caring for our loved one.

The best we can do is wash our hands frequently, wear gloves and a mask when possible, and keep commonly used surfaces disinfected. Many of us are spending even more time on caregiving duties because the outside caregiver can no longer come over or the day program has closed. This puts an even greater strain on us and adds to the stress of this already stressful time.

           

            Self-Care Tip. Caregivers cannot leave their home to get a break but we can find ways to take a break and reduce our stress. Spending 24/7 with our loved one means we are going to get on each other’s nerves (it’s okay; that’s normal). Find ways for both of you to have your own time and space. Can you go out in the backyard while your loved one is eating? Can your loved one do a puzzle book while you read in the other room? Even spending time together doing an activity like watching a movie can reduce your stress and keep that connection with your loved one.

  

Loss of Income. Losing your job or having your hours cut is devastating to someone on a strict budget. A dramatic loss in income creates worry and stress not only for you but your loved one as well.

While this is a terribly depressing time it is also time for action. Apply for unemployment as soon as possible. The CARES Act extends unemployment benefits so even if you didn’t qualify before you might qualify now. If possible, reach out to other family members for financial help. Contact your local food bank or Meals on Wheels for help with food. Reach out to creditors and landlords or mortgage companies to see if they can defer payments for a few months.

            Self-Care Tip. There is nothing more stressful than not knowing how you will pay your bills or feed yourself and those you care for. Taking action will help get you back on your feet but it is also critical for you to do something to reduce that overwhelming stress in the moment.

The best way to do that is to breathe. (Bear with me.) Close your eyes. Take a deep breath. Repeat. You need to reduce your stress if you are going to be able to take that action described above. You need your full energy right now and that means taking care of yourself and allowing yourself a few moments to breathe and tell yourself you will get through this. You will. You will get through this.

Where are the supplies?! The lack of everyday supplies is maddening. Not to mention caregivers needed PPEs before anyone knew what a PPE was! (We need toilet paper, too, and it makes zero sense why there is a shortage of that right now.) How do we get the gloves we need or masks when all the stores are sold out? (And who the heck has all the toilet paper?) Luckily, caregivers are both persistent and creative. A few tips to find those necessary supplies:

·         Call your health care professional. A home health nurse, your doctor, a case worker or pharmacist might be able to at least steer you in the right direction if not order supplies for you. We have personally had luck with a home health nurse getting us gloves and alcohol prep pads. We also had luck with ordering gloves through one of our incontinence supply vendors.

·         Create online orders in the middle of the night. A friend gave me this tip and said product availability and available delivery times were better in the middle of the night.

·         Take advantage of senior hours. If possible, take advantage of the early hours some stores are setting aside for seniors or those with serious health conditions. I do not know if being a caregiver of someone will get you in early but it can’t hurt to try. Supplies seem to be more plentiful during these hours – even for paper products! 

·         Ask friends and neighbors. If there is a positive in this pandemic it is the connection people are creating with others. Neighbors are helping neighbors and friends and family are finding creative ways to help one another. Ask these people (even if you don’t know them!) where to find something you need.

·         Check non-traditional suppliers. Some of the essential businesses are now selling things like toilet paper and paper towels. Check stores like Home Depot or Lowes for disinfectant wipes and toilet paper. There are even restaurants selling not only their to-go food but also rolls of toilet paper!

·         Make your own mask/face covering. Homemade masks and face coverings are springing up. There are a few sites to help you make your own but this one has directions for both a no-sew version and one that requires sewing.

Self-Care Tip. Connect with others! Whether by phone, FaceTime, email, social media or texting, it is important to stay connected with others. Friends, family and strangers alike can not only help you find needed supplies but can also lend support and words of encouragement while you care for your loved one at home.

Lockdown Orders. Not being able to visit our loved one in the hospital or a care facility is not only tough to go through but frightening for caregivers. Just the possibility of having to send our loved ones to a hospital is even more stressful than usual because of the lockdown orders. There is no simple solution for this situation.

As caregivers, we are pros at advocating for our loved ones, keeping in constant communication with the hospital or the care facility caring for our loved one. We are used to being right by their side during a hospitalization and are a frequent visitor when they are in a care facility. Right now, that can be dangerous for us and for our loved one.

The best we can do at this time is get and give information over the phone. This is not ideal since hospitals and care facilities are busier than ever so enlist an advocate within the healthcare system, if possible. Do you have online access to the medical records of your loved one? You can check on blood work and other test results once they are posted online. Enlist your GP to see if they can get additional information from the hospital. Implore a contact at the care facility to keep you posted on your loved one.

If possible, keep in contact with your loved one through phone or text. However, this is not always reliable since our loved one may not be well enough to communicate with us or they may have dementia or otherwise unable to use a phone. Ask the healthcare professionals providing care for other ways you can best be kept apprised of your loved one’s condition.

            Self-Care Tip. This is very stressful situation to go through and you will need to care for yourself so that you do not end up with your own health issues. Make sure you are eating properly, drinking enough water and getting enough sleep. This may seem like obvious advice but every caregiver knows that during stressful times we forget to do all of these things. You have to stay well to prepare for your loved one’s return home so please take care of yourself.

Caregiving is more challenging than ever right now but we will get through this.

Stay safe and stay well. Take care.

Trish

Trish Hughes Kreis is co-author of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers book series and works as a full-time Legal Administrator. She is also a freelance writer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for several years and they do their best to keep him in a never-ending supply of Rocky Road ice cream, happy, healthy, and, of course, excellent. 

The Caregiving Snowball

It’s hard to tell when you’re in what I call the caregiving snowball.

Here’s how it works: you have survived the beginning of caregiving where everything is whirlwind: doctors’ appointments, diagnoses, documents to create, decisions to make but then things get pretty steady. Things are certainly not easy but steady enough to establish routines with only occasional hospitalizations or emergencies.  The length of this period is as varied as there are caregiving situations.  Some skip it altogether and go straight to the snowball. 

The crew happy to be home

The snowball is when things get crazy. 

There are possibly several falls, repeated illnesses and multiple hospitalizations or stays in a Skilled Nursing Facility. The rebounding isn’t quite like it used to be. It takes longer to recover from pneumonia or a fall.

The days of routine look pretty good right about now. 

Sometimes I wonder if we are in the snowball period with both Robert and Carol. I think it’s really impossible to tell when a caregiver is actually in it but, boy, it sure feels like it sometimes.

We have to celebrate with cake!

Robert has gone from getting sick with bronchitis or pneumonia one or two times a year to four to six times a year. It is getting more difficult to treat him at home when he becomes ill because his mobility goes out the window and he goes downhill so quickly. Not to mention the oral antibiotics that his doctors prescribe are losing their efficacy. He requires IV antibiotics when he’s this sick and that’s something we can’t do at home.

Recovery takes much, much longer. He may end up in the hospital for a week but then needs a few weeks in a SNF to get his strength back. Even when he’s back home, there is a noticeable decline.

The snowball to me means longer recovery times and a steady, permanent decline in Robert’s overall health and mobility.

With Carol, she may have more frequent falls and hospitalizations but she seems to bounce back without an additional decline. At least, if she has a decline in mobility it’s more minor than I have witnessed in Robert.

Freedom!

Both Robert and Carol are back home and the caregiving snowball has been on my mind. They both got home on a Thursday and by Friday, Robert couldn’t walk, had a very tight cough and was exhibiting his usual symptoms of getting sick. His vitals were good but I was concerned, especially since he had choked/coughed a lot during the welcome home dinner!

Thankfully, Robert had a scheduled appointment with his pulmonologist who did an ultrasound to see if there was any fluid lurking in his lungs and agreed with me that antibiotics would help stave off any possibility of an infection. A couple of days of rest and the antibiotics as well as his more aggressive nebulizer treatment (three times a day instead of the usual two) seems to be working. Robert is moving around a bit better but we’re not pushing it. He is using the wheelchair more than usual but we are also letting him walk with the walker for short distances so he can build up his strength.

Sleeping but happy

Carol is sleeping quite a bit but Richard is making sure she is taking her medication and drinking water as well as eating a little something. She eats then goes back to sleep. Sometimes this is an indication she has something brewing but we are chalking it up to not getting good sleep in the facility. (Because we are going to think positive!)

So I don’t know if we are in the caregiving snowball yet or not. I’m happy to have Robert and Carol home, just where they belong and whether we are or not in the snowball really doesn’t matter since Richard and I will move along this journey where it leads us.

I am grateful to have Richard beside me during this crazy caregiving experience and, if we are in the snowball, well – we both love a good snowball fight so I guess things will work out just fine.

My co-pilot