Respite: Let’s Do This Again

Richard and I have cared for Robert for ten years and five of those have been in our home.  Robert loves to say “cheers” at dinner and usually says “cheers for our drinks” or “cheers for a good dinner” but recently threw out “cheers to family.”  He didn’t stop there: “cheers to a great family.” 

It is those moments that make up for the challenging ones when Robert’s medications are changed and he gets grumpy or when the physical demands of caring for him wear me out.

Those moments are precious and I wouldn’t trade them for anything but I have come to realize that a real respite is needed in order to refuel. 

Caregiving is one tough job and we need to be as physically and mental fit as possible to do it.  Respite is hard to come by and shouldn’t be as tough to get as it is but it is definitely worth fighting for. 

We were fortunate to be able to take a cruise to Alaska. I understand just how lucky we are to have been able to take such a spectacular trip and hope you don’t mind my sharing our respite days with you.  The trip is in a couple of parts so your eyes don’t glaze over with our vacation pictures.  You can read part one here. 

Day 6 (Tuesday).  We are heading into Glacier Bay today!  Richard seemed to sleep okay – only waking up a couple of times.  I didn’t hear him at all but woke up at 5:00 because somehow his watch alarm went off.  Grr.  Oh well, I can always go back to sleep.  I was wide awake for some reason so actually didn’t go back to sleep.  I felt fairly well rested after seven and a half hours but woke up a little grumpy.  I don’t know what if it was because of the alarm or because I miss our regular routine or something in the air.  I went for a walk on the ship a little earlier than usual and walked six and half times around (the extra half was so I could get closer to the entrance that brings me to the elevator leading to a cafe).  It was raining but not pouring and it didn’t really matter as I have a hood on my sweatshirt (otherwise known as Richard’s sweatshirt since I didn’t bring one.) 

I went to get a caramel latte for Richard and a decaf mocha for me after my walk.  Starbucks hasn’t quite infiltrated the ship but there is a café that makes espresso drinks so this is not the trip to break that habit of ours.  On my way back to the room, a woman got into the elevator and said what a miserable day it was. Oh no!  What a shame!  I asked what had happened (I am thinking something terrible happened to her this morning: getting bad news, falling, something).  “It’s raining.” 

Ahh.  I mumbled something about it not coming down too hard as I exited the elevator.  Apparently, I wasn’t the only one who woke up a little cranky.  Maybe it was something in the air. 

Richard and I got ready for the day – I showered; he wrapped his leg and then we went to the regular ship restaurant for breakfast.  We had been frequenting the buffet every day but wanted to try something a little different.  We enjoyed a nice breakfast and then made our way to the spa for our hot stone massages. (We treated ourselves and I am loving this spa!)  We should be entering Glacier Bay just about when we are done with the massages. 

The Universe is looking out for me because my massage therapist used to be a physical therapist who worked with stroke victims.  We talked about my stroke and she gave me hope that my numbness would actually go away (yes, I still have numbness).  She said in her experience it takes six months to a year to go away.  That is similar to what my neurologist had said (“weeks to a year to never”) so it was nice to have that validated again.

Of course, she tried to sell me some products after the session but they all do that and I politely declined.  She did talk me into getting another massage later in the week but I’m not sure if I will keep the appointment.  On the one hand, I would love to splurge and treat myself (I get massages at home but never twice in one week!) but it is costly and would be oh so indulgent!   We’ll see. 

We spent the day in Glacier Bay and were able to see all kinds of wildlife. We saw a brown bear on the shore, sea otters, sea lions and even a splash which was an indication of the possibility of a whale. 

We had our second anniversary dinner at the dining room.  This is supposed to be our 20^th Anniversary cruise but we actually celebrate 21 years next week (we couldn’t come last year).  We even got Happy Anniversary balloons on our room door, a glass of champagne at the dinner and a special tiramisu cake.  All the servers even came over and sang a happy anniversary song to us (I only know this because I recognized the word “amore”) and the table next to us raised their glasses to toast us!  It was very special. 

Day 7 (Wednesday).  Today we docked in Sitka!  I slept seven and a half hours and woke up on my own just before 5:00 a.m.  Richard’s alarm went off again at 5:00 – he said he silenced it so we’re not sure what is going on. 

Richard slept okay.  He was up a couple of times but not in excruciating pain.  Today will be a day in town so there will be more walking again.  He plans to bring his scooter to help alleviate some pressure on his leg.  I hope that helps.

Sitka was a spectacular day!  Apparently, it rains most of the year yet our day was sunny and 65 degrees.  It was fabulous!  It is such a beautiful area, too. We hadn’t pre-purchased any excursions but bought one once we were in town.  Before heading out for the tours, we walked around the town and visited the local shops and found a place for a mocha and cappuccino. They had frozen yogurt but it was too early for that.  I miss our FroYo runs with Rachel!  I hope our little local shop hasn’t gone out of business since we’ve been gone – we give them a LOT of business. 

Our tours were a trip to the Fortress of the Bear and the Raptor Center and driven by a very nice (and funny) man named Lionel.  We saw more bears but these were in a rescue center that takes care of bear cubs after their moms were killed.  The Raptor Center showed us more bald eagles than I will ever see again!  Beautiful creatures.  This center also rescues injured or starving birds and releases them back into the wild once they’re fixed and in good shape. 

We lunched on fantastic chowder before heading back to the boat.  Richard was hurting and very tired so we stayed in the room for the night.  He suggested room service which was a good idea.  I really was so full I didn’t think I would eat but we had a light meal from the Japanese restaurant on the ship.  Richard had to order dessert (he had to!) but I could only choke down a bite!  I am not usually too full for dessert so that’s saying something!

While sitting on the deck of our room when the ship pushed off from Sitka we were fortunate to see sea lions and even a whale!  I couldn’t get a picture fast enough before the tail disappeared into the sea but, oh my! 

We went to sleep around 10:00.

Day 8 (Thursday).  I woke up around 5:30 and Richard was asleep, sitting on the couch.  His leg must have been hurting through the night.  I dreamt about Taz – more of a reality dream than anything.  I was making dinner, dished up a plate and left it on the counter, walked into the next room and glanced over to see him with paws on the counter eating off the plate.  Yep, that’s my boy!

We do miss our dogs!!

I went for my daily two mile walk around the ship and watched as we docked at our next port, Ketchikan.  I tried to get a mocha but the café wasn’t open yet.  I returned to the room, showered and we got ready to disembark.  It will just be a short time in town before the ship heads out again toward Victoria. 

We had coffee and bagels at a local shop and then walked around the town before our tour.  We made our way to the Visitor’s Center so we could check in for the tour.  We were super early so Richard sat to rest his leg and I walked around the shops a bit more.  The tour included watching a gentleman work on carving a new totem pole and he gave a talk about how he carves them and makes his own tools.  He was an interesting character and a seemingly gentle soul - very kind.  Richard and I talked to him after the presentation and we learned more about him.  Justin has had three strokes (two small and one more devastating).  He couldn’t walk but now has regained his mobility and can still carve.  He said the medical care in Ketchikan was terrible but he finally got a referral to a doctor in Seattle.  He said he has a couple of tumors in his brain and his sinuses and he doesn’t know what all will happen.  He said the stroke changed him and he talked lovingly about his family. We told him how much we enjoyed visiting with him and left to finish our tour.  I left even more grateful to live in an area that has good healthcare. 

Our next stop: salmon!  We saw salmon swimming upstream in a beautiful stream surrounded by woods (and a bunch of ship people, but that’s okay).

Our next stop was another stream under a bridge where we hoped to see a bear.  Lucky for us, there actually was a black bear looking for fish.  He caught a salmon and we watched him lay on the grass eating his lunch then wander back into the woods, oblivious to the throng of people watching him. 

A local resident lived next to the stream and, apparently, had a deal with certain tour companies allowing them on to the property for a fee.  Good entrepreneurship!

Our last stop on the tour was a totem pole area which was interesting and rich in history.  Apparently, Abe Lincoln’s Secretary of State owes these people a huge debt and they have not forgotten that!  It has been great learning so much about Alaska!  Not to show too much of my ignorance but I didn’t realize there were rain forests in Alaska.

Richard was thrilled to see a fishing boat that is featured on one of the Alaska reality shows he watches (“Time Bandit”). I took photos of him near the boat since we didn’t choose that tour – that will have to be good enough! 

We were back to the ship around 12:30 – just before the deadline!  The line was long to board so I left Richard and ran back to one of the stores to get some candy Richard had wanted.  Luckily, I didn’t miss the deadline to be back on the boat or those would have been some costly sour gummy worms!

Today Richard is going to play bingo while I get another massage.  I do feel very indulgent but I have to stock up and refill my caregiver bucket!  Plus, I’m hoping he wins at bingo so I won’t feel so bad spending the money. 

I keep thinking about Justin, the carver.  Talking to someone local who had a stroke made me realize (more than I had already) just how lucky we are to have access to good healthcare.  The small towns we’ve been in do not have great accessibility for people in wheelchairs; many homes have steep stairs leading into their homes.  What happens after surgery for them?  What about anyone with mobility issues?  To think people have to travel to Seattle for specialty healthcare is quite unnerving.  Not everyone would be able to do that.

Day 9 (Friday).  Victoria was our Canadian stop and we only have a few short evening hours.  Before leaving on our trip, I found a cute restaurant near the pier and thought we could have yet another anniversary dinner!  The ship docked late due to some high winds so I was worried we wouldn’t make it in time for our reservation but it worked out fine.  The dinner (and, of course, desserts!) were fabulous at Il Covo Trattoria. I was determined to wear heels for this dinner so got a little dressed up and donned a pair of boots. 

We wanted to walk around downtown Victoria after dinner and were told it was “just around the corner.”  Suure.  Two miles later, we finally saw it in the distance!  I left Richard on a bench and walked up a hill to visit some touristy shops and got a bargain on some sweatshirts.  After finding Richard again (I made sure to make note of some landmarks since I am notorious for getting lost) we unanimously voted to take a taxi back to the boat.  Between his painful leg, sore back and my feet (the heels are cute but not made to walk two miles) we were ready to head back to the ship.  Victoria might be better seen in the daytime with more hours to spend and maybe some sensible shoes. 

The ship will dock in Seattle by the time we wake up in the morning.  It is hard to believe this is our last day but we are both ready to get back home and see the dogs, Carol and Robert (not necessarily in that order, in case Carol or Robert asks).   

I cannot even find the words to say how much Richard and I enjoyed this trip (although I found plenty of words for this post and am sure my joy is evident).  I am so grateful to everyone who helped make this happen (Robert’s medical care team, Courtyard Health Care Center, Rach, Matt, Rich, Carol, Joelle and Richard’s brothers). 

We are so, so appreciative and, maybe, just a little greedy because I would love to do something like this again next year. 

Something for me to remember:  Respite isn’t just good for the caregiver but also for our loved one.  It was a relief to know that Robert had a great time at the facility and was well-cared for and I will share more about that in another post. 

In the meantime, I am going to do my best to not let this after-respite glow disappear any time soon.

Respite: Just What the Doctor Ordered

It took until the day I dropped Robert off at the facility to really believe Respite was happening!  Getting respite shouldn’t be as difficult as it is but that’s a whole other post for another day.

I want to share snippets of our days so that if you can’t get respite care (which many people cannot) then you can at least enjoy the experience with us.  I’ll do this in a few posts or else your eyes will glaze over and it will be like the old days where families would show their endless slideshows of vacation photos. 

Maybe that was just my family . . .

Day 1 (Thursday).  I dropped Robert off at facility and when I say “dropped him off” I mean it took four and half hours!  I checked him in to a facility located in a town 20 minutes away, unloaded Robert, his pillows, suitcases full of clothes and pjs, a bag of briefs, a walker, his puzzle books, toiletries, bible, calendar and lap tray then had to run home to get his medications (after having asked this very question and being told I did not need to bring his meds) but I was not going to complain!  As long as he gets good care and actually gets his medications, I will be happy.  They started him on lunch while I ran home and he was still eating it when I returned an hour later. It was quite a lunch, too!  He is going to be one happy camper.  I had conferences with the charge nurse, floor nurse and admissions director and posted the “About Robert” document that I create when I leave him somewhere.  I helped Robert with his lunch, unpacked his belongings then raced home.  Richard and I picked up Carol so she could stay with the dogs while we were away and we went out to dinner with her, Rach and Matt.  They gave us binoculars for our trip!  I started packing for me at 9:00 p.m. 

Day 2 (Friday).  We’re flying to Seattle today!  I woke up at 4:00 a.m.; Richard was up at 3:00 a.m. Rach picked us up at 6:00 and we loaded her car with all of our suitcases, carry-on bags and Richard’s knee scooter (it will, hopefully, help ease his leg pain during the trip).  Dogs are so sad we are leaving with suitcases!  Off to the airport, we check in and relax until our 8:00 a.m. flight.  The flight is delayed 45 minutes which just gives us more time for relaxation, a decaf mocha and yogurt.  We’re on vacation!! 

After a short flight, we are in Seattle!  We check in at the hotel and the room is ready (super early!), we are randomly upgraded to a room with a balcony and overlooking the bay.  Loving this vacation!

I call the facility to check on Robert and they report he is doing well and will have an activities person help him with activities. Apparently, they have bingo which Robert loves!   

The weather is cool but warm in the sun. I’m so excited to wear sweaters and boots on this trip after coming from the hot Sacramento summer!  Richard rewraps his leg and, after resting a bit, we go to Pikes Market to see the first Starbucks (you knew we would!) and walk around.  We lunched at a café claiming to have the “best salmon burger” and it was pretty darn good.  We walked back toward the hotel and sat by the bay in a park.  We had the perfect spot to watch a street magician do a card trick with a couple of other tourists then get mad at them because they didn’t tip him enough.  He stormed off and did the same thing to another group of tourists!  Not sure he is going to get any repeat business behaving that way. 

We go back to the hotel and Richard is hurting!  I’m getting pretty tired, took but we go out to dinner at the hotel restaurant.  Back to the room and relax. 

We called Carol to check on the dogs and she said they’re doing great.  Talked to Rach and she said everyone is doing well after “checking the mail.”  She’s checking our mail every day and simultaneously checking in with grandma to be sure she doesn’t need anything. 

I fall asleep super early! 

Richard has a rough night.  I wake up a few times to him moving around in room.  He goes downstairs to the hotel lobby and is the first person ever to close down a bar without ordering one drink.

Day 3 (Saturday).  I wake up at 6:30 after nine and a half hours of sleep!!.  Glorious – no alarms!  Richard is finally asleep so I stay in bed so I don’t wake him. 

He gets up around 7:30 and I walk to a nearby Starbucks.  This definitely counts as my exercise -- the streets are as hilly as San Francisco!  We sign up for the shuttle to the pier and enjoy the cool, misty Seattle air from the balcony.  It’s almost time to leave for the cruise! 

We get to the cruise ship and check in.  It wasn’t super crowded but we were able to skip the line to check in at the “wheelchair and other assistance needed” desk. One of the staff had seen Richard limping and took one look at his bandaged leg and pointed us to that desk.  The staff was very helpful!  We could have rented a motorized scooter for the week but Richard decided against it.  We’ll see by the end of the week if that was the right decision.  His knee scooter has been slightly helpful but it does hurt his back and knee after using it. 

We find our room and are overwhelmed by the spacious room and the balcony!  We will definitely not go to a smaller room after this experience!  Richard was able to put his leg up for a bit and let it air dry.  He rewrapped it just in time for the emergency drill.  Our suitcases arrived and I started to unpack while he cleaned his wound.  I wonder if Richard will notice my six pairs of boots and five pairs of sandals in the closet.  I spread them out between two closets so it doesn’t seem too overwhelming.

We left for the emergency drill, me with the life jackets in hand.  A couple down the hall spotted us with the life jackets and started back to their room to get theirs when the captain came over the intercom instructing passengers NOT to bring life jackets to the drill. We all busted out laughing. 

Some safety officer I am! Richard headed to the elevator while I scurried back to the room to drop off the life jackets.

Next up was the Sail Away party – we watched the ropes get unhooked from the dock and off we went!  Richard got his french fries he’s been dying for days to get and we found a table with a nice view of the water. 

The spa raffle was next but, sadly, we didn’t win.  Richard signed up for a traditional shave while I debated about scheduling a massage.  The gym looks good but there’s a walk around path on the 3^rd deck and three times around will get me to a mile.  I think I’ll try that in the morning.  There’s a lot of walking on the ship but, with Richard’s leg, there’s elevator time too.  I need to make sure I keep up with the exercising. 

After not winning the spa raffle we found the buffet and drowned our sorrows.  No, we didn’t do too bad: we each had a salad, Richard had a bit of pasta and then we couldn’t pass up dessert.  Chocolate brownie cheesecake for Richard and apple pie for me.  Hoping for ice cream later. (Hey, I’m going to be walking!)

Richard was pretty pooped from such an awful night sleeping last night so we returned to the room.  We broke out the binoculars and looked out at the sea.  I was hoping to spot a whale or other marine mammal but only saw a fishing boat and a few birds. 

We finished unpacking and polished off the chocolate strawberries Richard ordered for our room (and which were waiting for us when we first arrived).  Richard debated about leaving his leg wrapped all night but I reminded him that the doctor wanted it unwrapped when possible.  Richard was worried about leaking on the bed but we brought plastic garbage bags we can use and I had a few plastic bags from the dry cleaners hanging on some of my blouses.  He can use those too.  He has to do what is best for his leg.

I didn’t call the facility about Robert so was slightly concerned.  I worry that he was alone in his room but then I remember that he loves his word search and television and I am sure he would be happy doing those even if he was left alone.  I had to tell myself that if something happened they would call Rich as I instructed them.  I debated about buying the internet package on the ship so I would be able to at least text but decided against it after talking to Richard about it.  Rach will be able to handle anything that happens with grandma or the dogs and Rich can handle any issues with Robert.  We’ll be at sea tomorrow but will be off ship on Monday.  I’m sure we can find a little café with free wifi in Juneau. 

It has been a slow process of being able to relax.  The “on” switch peels off in layers and I can start to feel a little relaxed then go back to “on” again.  More relaxed, then back on.  The “on” switch is slowly turning off, though. 

Richard and I realized we haven’t ever cruised with just the two of us!  I know Richard feels bad about his leg and his back pain and feels he’s slowing us down but just being on the cruise – even just in the room – is relaxing. We’re together; even holding hands and enjoying each other’s company.

Day 4 (Sunday).  I was so tired last night that I fell asleep at 8:00 p.m.  Woke up at 7:30 a.m. – yes, that’s eleven and a half hours of sleep!  Apparently, I am catching up on years of lack of sleep.  Richard isn’t so lucky: his leg has been killing him (way too much walking) so he is up half the night in excruciating pain.  I only half wake up when he’s moving about but I know he worries he keeps me up.  Doesn’t matter if I’m sleeping for 11.5 hours!

We were at sea all day today and it was rough!  Richard and I went to a bingo game and some poor kid lost his lunch during the game.  People were lined up to get seasickness patches and I finally wore the seasick bracelet Richard brought along. 

Richard and I went to an anniversary dinner and were let in even though we broke dress code.  Well, Richard did; I dressed up.  Richard can’t comfortably wear pants so wore a button down shirt with his cargo shorts. There were some discreet discussions amongst the staff but they let us in and we thanked them profusely.  We explained about his leg (which was obvious because he had it wrapped up and was using his knee scooter). They were super kind and understanding.

We had a delicious meal (way too much food though!).  Good thing I’m walking the ship in the morning!  I go around six times which makes a two mile walk but I might have to increase that with as much as I have been eating!  No music needed – listening to the ocean waves is all the motivation I need!

All that good food made me tired again so it was early to bed. 

I broke down and bought the ship internet package.  Richard needs to rest his leg and I need something to do while he’s sleeping.  Internet it is!

Day 5 (Monday).  Again, I slept eleven and a half hours.  I hope I can go back to sleeping six and a half hours . . .  I’ve been dreaming all night, too, so must be getting a fairly deep sleep.  Richard had his worst night yet, unfortunately.  Poor guy.  His leg wound is just so unforgiving.  The doctor decided he will need a fourth skin graft so we will get that done soon after we return home.  We hope that completely takes and resolves this awful wound and leg pain. 

Today we were making our way to Juneau and were a lot closer to land which meant the sea was so much calmer.  Thank goodness!  Richard and I went to a group class watching on the deck for sea life and we saw a couple of whales!  I caught just glimpses of them but that’s what they were!  Thankfully, we had the binoculars!  We ate breakfast and went back to the room.  Richard had to tend to his leg so I went back out to do my walk around the ship.  While walking, I saw several pieces of glacier just floating by.  Whales and glaciers and we’re early in the trip! 

Before leaving the ship, I got a voicemail from Robert’s facility. The message said it wasn’t an emergency but they needed to talk to me.  The plan had been for Rich to take care of anything related to Robert so I texted Rich to ask him to call to see what the issue was. He immediately responded and said he would call right away.  Turns out, Robert fell when trying to transfer from the toilet to the wheelchair.  He had been given a call button but was being impatient and decided to do it himself. He fell but was okay (probably bruised, though).  They told Rich they would change the protocols for Robert and have someone stay with him until he was done in the restroom.  Rich reported all this to me in a text and I was thrilled it was handled swiftly and all was well. 

Happy I could let go and let Rich handle it and so grateful to Rich. Grateful Robert wasn’t hurt and that the facility was reacting appropriately. Such a relief!

We were docked in Juneau from 12:00 – 10:30 p.m. but Richard and I only stayed off the ship for a few hours.  He was pretty sore from all the walking but we did all we wanted to do anyway.  We spent the rest of the afternoon/evening watching the sea and the city from the observation deck, sipping a decaf mocha.

We kept our eyes on a couple of bald eagles in town and were just amazed by their majesty. 

We ate dinner (not sure why – I am SO stuffed) and then came back to the room to watch the city (and our bald eagles) from our balcony.  We couldn’t have asked for better weather!  It was misty with a little rain but not too cold. 

Such a fabulous trip and it’s only Monday!

Part Two coming up . . .

Video EEG: Process, Results and Decisions

A lot has happened since Robert’s video EEG in April and it all affects the direction we go with Robert’s treatment.  Caregivers make decisions every day about treatment and everything needs to be considered: how treatment will affect our loved one and their quality of life, the ability of the caregiver to manage the treatment and, of course, what our loved one wants or what we think he would want if he is not able to make his own decision.

A great deal of stress in caregiving comes from having to make these decisions about treatment and wondering if the decision is the right one to make for everyone involved.  These are not just decisions about what to eat for dinner or what to wear for the day (although, those add up too) but life and death, quality of life type decisions. 

There are other stressors while caregiving such as financial, time management, sleep deprivation (to name just a few) but making a decision for someone else’s treatment is a big one. 

We are making life and death, quality of life decisions all the time. 

Robert’s treatment has changed through the years but, since I took over his care ten years ago, it has only involved medication changes.  Those can be a bear!  Robert is on five different medications for seizure control and an additional ten for various other reasons (thyroid, Parkinsonism, GERD, allergies).  He is incredibly sensitive to medication changes so I am usually reluctant to try something new but if we do try something, we take it slow. 

I give the new medication some time to work but also to see if the side-effects subside or are something we can live with. 

And there are always side-effects.

Last summer Robert got a new neurologist.  She came from the UCLA Medical Center and is energetic, personable and had the goal of getting her patients to zero seizures. 

Zero seizures?  It never occurred to me that Robert could have zero seizures after having a lifetime of dozens a month.  After she recommended trying one new medication we dropped it as it seemed to be causing an increase in seizures!  (*insert buzzer sound here*)  Rejected!

That didn’t hinder Dr. K’s enthusiasm for finding a solution for Robert.  She told me how experienced she was with the NeuroPace and had high hopes that it could greatly reduce Robert’s seizures and even, eventually, allow us to reduce some of his seizure medications.  It sounded very promising so we decided to explore that option.

The first step was the Video EEG.  After getting the team together (because a VEEG requires a team) we were on our way!

I didn’t really know what to expect from the VEEG but did some research and prepared the best way I know: create to-do lists and a schedule! 

The VEEG usually lasts from Monday through Friday and requires 24 hour monitoring by a family member.  Robert gets hooked up to the EEG monitor and is on a video monitor but the caregivers are expected to press a button to flag when a seizure occurs. 

It is a huge commitment but we all knew how important it was to do this in order to give Robert a chance at fewer seizures. 

I explained what I knew about the process to Robert and told him Richard (brother-in-law), Rich (Other Brother) or I would be with him the whole time.  He’s usually a pretty good sport (unless he is on a new med) so he was game for the VEEG.  All he needs to be happy is his word search book, some television shows and good food.  I brought Robert’s word search, knew he would have a television and since Robert is a fan of hospital food we were all set.

Richard and I took Robert in on Monday and the leads were meticulously applied to Robert’s scalp.  I think they pretty much covered every inch of his head!  The smell of the glue they used was horrific but that dissipated after a while (or we just got used to it).  The tech was extremely patient and kind during the process and answered all the questions we had about the process. 

She explained the leads would stay on for a full five days and they could be reapplied if any come off during the week.  She hooked up a respiratory belt, EKG leads, pulse meter and a nasal cannula.  The nasal cannula and pulse meter can be unhooked when Robert needs to go to the restroom but the rest of it is attached to a very long cord which Robert will carry with him to the restroom. The only time Robert can get out of bed is when he is using the restroom. 

I think this limited mobility would drive most people crazy but Robert didn’t seem to mind.  Robert enjoys (a little too much) being waited on so this was certainly not an inconvenience to him. 

We met several members of the neurology team the first day and they ran a bunch of baseline tests (blood work to check medication levels, chest x-ray, neuro exam).  It was a flurry of activity the first day and they started lowering his seizure medications that first evening. 

By Tuesday morning, Richard noted some confusion when Robert woke up.  Robert thought he was in the commercials and called Richard “John.”  Most likely, this indicated a seizure while Robert had been sleeping. 

I took over in the afternoon (after a work meeting and my own ultrasound) and by evening Robert was shaky and his pulse was high.  This is an indicator that seizure activity is coming.  Rich took over Tuesday night and Robert stayed up until 11:00 working on his word search puzzle.  His schedule is always out of whack when he’s in the hospital.  Rich noted a seizure at 1:15 a.m. 

By Wednesday morning, the seizure meds had been stopped.  Robert ate some of his breakfast (scrambled eggs and biscuits & gravy) and worked on his word search puzzle. 

I also got the results of my carotid artery ultrasound and everything looked normal!  Woohoo! 

Robert gave up on eating the scrambled eggs which is unusual for him. 

By 9:20 that morning, the seizures were in full force. 

This was his typical cluster of seizures: his head moves to the far right and each one lasts 15 – 20 seconds.  He sometimes moves his head back and forth and gets what I call “seizure mouth” (his lips purse together and his face droops).  After several of these he had a couple of longer seizures (about a minute each) with moaning and moving of his right leg.  He was very disoriented. 

The doctors gave him some of his regular seizure medications to stop/slow the seizures but they were cautious about giving him too much.  They were hoping to do a SPECT scan on Thursday and they needed him to have a seizure during the test.  This test is basically a CT scan with radioactive dye injected at the first sign of a seizure so they can pinpoint exactly where the seizure is coming from. 

Robert continued to have seizures every 10 minutes or so.  The doctors decided to give him enough meds to stop the seizures regardless of the effect on the test scheduled for Thursday.  By this time, the goal was to stop the seizures. 

By 3:30 p.m., the seizures hadn’t stopped and he was wheezing, confused, shaky and pretty much out of it.  He was given Ativan as well as a loading dose of Vimpat (a medication he was not on at the time). 

After all that medication, the 3:30 seizure was the last one for the day.  Robert’s breathing continued to be labored and he felt very warm to me.  I asked the nurse take his temperature and, sure enough, it was high and his pulse rate was extremely high.  Robert most likely aspirated during the seizures causing aspiration pneumonitis (this is a frequent occurrence during Robert’s seizure clusters). 

Rich took over that night and noted that Robert tried to do his word search puzzle but ended up just holding the pen and paper.  They both had a restless night due to the doctors starting IV antibiotics and the IV getting clogged with the antibiotics/malfunctioning.  At this point, Robert clinically had sepsis but if you are going to get sick, the hospital is the best place to do it! 

It was quite a balancing act of trying to continue to get as much information about his seizures while also treating the aspiration pneumonia. 

The hope was the doctors could still capture a seizure during the SPECT so he was taken to radiology Thursday morning.  The isotope has a short shelf life so they waited for a seizure for as long as they could.  I couldn’t go to radiology with him so I went to Starbucks, came back to the hospital cafeteria and got something to eat and tried to relax. 

After several hours, Robert was back in the room.  Unfortunately for the purposes of the test and gaining more information, he didn’t have a seizure.  They rescheduled the SPECT for Friday morning. 

Robert was not going to be released on Friday as originally planned since he needed to be seizure free for 24 hours and he was still being treated for the pneumonia. 

They changed his antibiotics to Vancomycin on Friday.  He was still running a high fever and was not on his usual seizure medications.  They wanted to try the SPECT scan again.  I was exhausted by this point, Robert was an absolute mess of confusion and illness, and I was ready to call off the SPECT. 

I ultimately decided to let them try it one more time.  We had already been this far and I wanted the doctors to get as much information as possible so we could decide on treatment options later. 

Finally!  They were able to capture a seizure on the SPECT scan.  Once he was back in the room, they loaded him up with an IV of Depakote and started his regular medications.  All the leads were removed from his head! 

Now we had to get him past the infection. 

Robert was put on another antibiotic (I’ve lost track of how many they tried but I think we’re up to four or five). 

Later that day, his white blood count was trending down and by Saturday the doctor left it to me to decide if I should take Robert home or keep him one more night.  I opted to keep him on the IV antibiotics one more night just to be on the safe side. 

Robert was more alert and feeling better by Saturday afternoon so I took him on a field trip to the cafeteria.  We were almost at the end of this ordeal! 

Robert’s WBC was low enough on Sunday that I was comfortable taking him home.  I brought donuts for the nurses to thank them for their care during our eventful week and was happy this was over.

My overriding hope after all this was that the doctors gained enough information to make a recommendation on treatment going forward.  I definitely did not want us to have gone through this for nothing. 

Six weeks later, I had my stroke and I will share in my next post what we learned from this VEEG, our treatment options and how my stroke plays into our decisions.

What This Caregiver Misunderstood About Self-Care

As a caregiver, I know the importance of self-care.  Heck, my friends and co-authors have written books about it!

I know, really know, how critical self-care is for caregivers. 

It is extremely important for caregivers to find a moment to breathe.  To call a friend.  To treat ourselves to a pedicure.  To continue to paint or take photos or garden or spend time with grandchildren – whatever our passion might be. 

All of that is critical to the well-being of caregivers. 

It isn’t enough, though.  Not even close. 

After my small stroke I realized I completely misunderstood self-care. 

Stress can be very deceiving.  Sure, a pedicure can be glorious for an hour and even for a little while afterwards but it does not peel away the layers of stress that build up while caregiving.  What I have learned is that stress wraps you up like a cocoon until you can barely breathe and it does so quickly and quietly.  We may not even realize how ensconced stress is in our very soul because we are too busy caring for someone else (or several someones). 

After my stroke, I realized that pedicures and massages were terrific ways to relax for a bit but it was not the self-care I needed. 

I knew I was a caregiver who gave it my all but I had forgotten to take care of myself too. 

Self-care has to include making time for doctor appointments for ourselves.  I actually went in for my preventative care mammograms and had annual blood work done but I didn’t pay any attention to the results.  I had fairly high cholesterol for years but never talked to my doctor about it.  It didn’t occur to me to mention that my mom also had high cholesterol and that my dad had incredibly high blood pressure.  As a caregiver, I would have logged all of this information for my loved one and informed the doctors and helped formulate a plan of action.  For me?  I didn’t do one thing about it. 

 

Self-care has to include exercise.  I know – annoying!  This is something I always told myself I should do but rarely did.  I absolutely loathed it when I read how important it was to exercise.  Who were these people who had all this time?  I, as a caregiver, certainly cannot find the time to exercise.  In fact, I convinced myself that the physical labor I was doing for Robert and the constant movement of caregiving was enough exercise.  Certainly the restocking of supplies, taking Robert to and from the bathroom and helping him change his clothes – all of that – was enough exercise for me.  I was constantly on the move until I collapsed into bed exhausted.

That all changed after my stroke.  My doctor said to exercise and, after hits and misses of the best time to do it, I found a time.  I found 30 minutes in my day to walk.  In fact, sometimes I can even find an hour. 

Self-care has to include noticing what we, as caregivers, put in our mouths.  Are we drinking soda or water or too much alcohol?  (I hated drinking water and would often drink soda.  Worse, sometimes I would go all day without drinking anything.)  Stress, hospital stays and other emergencies are terrible for our eating and drinking habits.  This was a very busy year in the hospital for our family and I routinely grabbed a pastry, French fries, brownies or other junk food to sustain me.  In fact, during one particularly stressful time around Easter I literally only ate Cadbury mini eggs for an entire day.  No joke. 

Go ahead and gasp but I assure you I am not the only caregiver to eat crap on a regular basis. 

All of the self-care quick refreshers I’ve written about in the past are important but I also know they are not enough.  What caregivers really need is respite.  I mean a real respite.  A length of time that does not include sorting medications, dispensing medications, taking vitals, washing urine soaked clothes or driving to physical therapy and doctor appointments (all while working full-time).  

A respite that includes getting as much sleep as we need! 

Unfortunately, respite is very hard to come by for caregivers.  It is incredibly difficult to arrange and usually impossible to find.  Robert has a social worker who is supposed to find us 14 days of respite – per year!  I can’t even imagine such a luxury!  However, that benefit is on paper only.  It is actually fiction because there are not enough care homes available for Robert’s level of care.  This creates more work for me to find a Skilled Nursing Facility or other care facility to accept Robert for a short period of time.  Not to mention the cost involved in sending him to a private pay SNF! 

Caregivers need the respite but we have to work our butts off (even more than we already do) to get it.  Sometimes we give up and just live with the fact that respite is not available.  Sometimes we just can’t afford a respite.  Caregiving is expensive enough! 

I am not giving up this year and, especially after the experience with the Skilled Nursing Facility last year, I will make sure Robert is assessed properly so he does not suffer falls again.  I will make sure his medication schedule is attached to the doctor’s referral so he gets his medication when he is supposed to and I will keep my fingers crossed for success. 

I will try not to worry while I am away.    

Self-care is hard work but it is vital and it is more than a moment or two of peace and quiet.

I don’t know if I would have listened to anyone saying all this before I had my stroke but I hope someone listens now.  I thought I was doing enough with pedicures and massages but it was not enough.  I won’t give those up because they are fantastic but they are not enough. 

Not nearly enough. 

Caregivers: you are too important not to take care of yourself too. 

We are worth the effort too.