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 . . .

Advocacy for the Win!

Whoever says the government doesn’t act quickly has never met the Licensing & Certification Program (L & C) within the California Department of Public Health. 

On July 12 I filed several complaints with the L&C regarding Robert’s respite stay and by July 31 they validated my complaints!  (At least a few of them.)

Advocacy for the win!  (At least a partial win.)

The investigation involved reviewing my claims, the photos of Robert’s injuries and documentation of the incidents, interviewing me, visiting Gramercy Court (the Skilled Nursing Facility involved), reviewing their files and conducting interviews at the facility.

When I first talked to the investigator, I was not sure how the investigation would go.  She started with my first complaint of Robert being injured due to two falls in four days and not being properly watched.  Her first comment was that Skilled Nursing Facilities are understaffed and it is unrealistic to expect someone to be watched 24/7. 

Are you kidding me?  The licensing agency is excusing a SNF because they are understaffed? Isn’t that a problem to be fixed?

Rach, Robert and Trish (l-r)
at the State Fair for some fun

Of course, I took a breath before saying anything to her.  (I am only a hot-head in my own head.)

Yes, I understood how understaffed SNFs are; however, I think it is reasonable to expect some sort of plan to minimize falls for a person that is a fall risk.  I explained Robert is in a wheelchair and needs assistance in transferring and in the restroom.  I told the investigator that this was made clear when I admitted Robert to the facility. 

She then explained how the investigation works and acknowledged getting my photos and follow-up documentation.  She said they will investigate the falls and the procedures the SNF has for preventing them and handling of them if they do happen.  She said she will look into why my request for the fall reports was delayed and will investigate the medications issues.

She explained they have no jurisdiction over my getting a refund.  I knew that but thought I’d throw it in to my complaint.   (Oh, by the way, after promising me a refund, Gramercy has not sent me one.)

The investigator explained that I would be told the outcome of the investigation once it has concluded. 

While she went to work on the case, I kept an eye on Robert’s bruise.  It had developed a hard lump under the skin which the doctor was slightly concerned about.  The doctor ordered an ultrasound so I kept Robert home from his Day Program and we went to the ultrasound.   Robert was having a terrible cluster of seizures that day on top of his ultrasound appointment so that was a not-so-excellent day (contrary to Robert saying it was). 

Robert is feeling excellent
and loving the State Fair!

Thankfully, Robert’s seizures eventually stopped and the ultrasound did not show any internal damage, bleeding or clots.  One less thing to worry about. 

I tried once again to ask for my money back.  My email was left unreturned and no one was “in the building” to accept my call. 

I knew filing a complaint would most likely result in me not getting my money back but I did not want that to stop me from trying to get changes made at the facility.   Robert was only at Gramercy for a short stay so the point of my complaint was to force them to make changes so this does not happen to another resident, whether they are short- or long-term. 

When the investigator called on July 31, she explained they found two deficiencies from their investigation.

1.   A fall risk assessment was not done upon admission nor was a fall risk plan instituted upon admission even though they had notice that he was a fall risk;

2.   A care plan was not developed after the first fall;

A few days after talking to the investigator, I received their formal letter with their findings.  The letter states they completed the investigation and “substantiated your complaint.” Further, “L&C validated the complaint allegation during the onsite visit” and the provider will need to document “their plan/s of correction.”

Yes!  I knew they could have done better!  Changes will have to be made!

I will make changes, too, when taking Robert for a future respite (although I have soured on that facility so he will not be returning there).   I knew admissions seemed disorganized but now I know a few more things to look for when taking Robert in for a respite stay. 

As far as the complaint about the medication schedule, the investigator could not find that the medication schedule was attached to the doctor’s orders originally faxed to the facility.  My schedule was in Robert’s chart but the medications were only sent in a list from the doctor without specific times to be given.  I did not see a copy of the doctor’s orders but know they had the schedule.  I think they only attached his medication list and not the schedule the medications should be given. 

This whole thing was a learning experience for me.

I know better than to think the nurses will follow the schedule I have worked so hard to develop with his doctors unless it is included in the doctor’s orders.   Robert’s doctor was very upset the nurses didn’t follow my schedule or even question it when it didn’t correspond to her orders. 

But I know this! I know this is how they work! I have gone through this before and absolutely should have double-checked that the orders included the medication schedule. 

Definitely a learning experience for me. 

At the next appointment, I will talk to Robert’s doctor so she knows the nurses will not deviate from doctor’s orders – regardless of information they have from the caregiver.  She is a terrific doctor and does so much for her patients and their caregivers and I am sure she will appreciate knowing this and change the way respite orders are written for her patients. 

Now that my complaints have been validated, I will try again to get my refund.  Not only was the care given not what I had paid for but I picked Robert up early so he wouldn’t continue to be injured! I paid for more nights than he was actually there. 

(Update: The refund came in for the full amount of the stay and I didn't even have to ask again.  Not surprisingly, the check was dated the same day as the conclusion of the investigation.)

Refund or not, this was a win.  A WIN!  Changes at Gramercy have to be made because problems were brought to their attention and care for other residents will be improved because of these changes. 

Advocacy for the win!

The Perfect Day; the Not So Perfect Respite

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

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

Rachel and Matt
First Dance

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

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

I just love love!

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

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

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

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

In theory.

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

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

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

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

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

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

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

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

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

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

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

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

What hospital did he come from?

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

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

Awesome – consistency.  

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

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

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

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

Photo taken Sunday, July 9

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

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

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

I was pretty clear.

The nurse said he completely understood and was very apologetic.

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

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

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

Well, crap. This can’t be good.

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

Photo taken Sunday, July 9

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

Oh. I see.

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

Twice in four days.

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

Certainly not worse!

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

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

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

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

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

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

Photo taken Thursday, July 13

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

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

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

Oh. My. God.

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

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

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

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

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

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

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

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

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

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

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

This was on them.  

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

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

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

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

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

Rachel and Matt
After the "I Dos"

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

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

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

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