Sunday, August 18, 2019

Confessions of a Caregiver: Accepting Help is as Tough as Finding It

Certainly I don’t need help.

Robert goes to a Day Program while I work so that’s already more help than some of the other 40 million caregivers get. I feel fortunate I have this great resource.

Almost 11 years ago when I started caring for Robert he could walk unassisted and get dressed by himself. He needed help with medications, time management, toileting, and making safe and healthy decisions (like not wearing urine soaked clothes that had dried overnight).  

The decline has been slow and steady but brutal. It is hard to see a steep decline when living it day to day but sometimes it hits me just how significant of a decline it has been.

Robert and Aunt Evelyn
After each bout of pneumonia or the onset of Parkinsonism or the relentless, ongoing seizure clusters, Richard and I picked up the slack with the tasks Robert can no longer manage. Dressing has gone from picking out his clothes and prompting him to pull up his socks to completely dressing him. Walking unassisted transitioned to using a wheelchair just for long distances to using it most of the time. Robert may use the walker at home but he can’t do so unassisted. We walk next to him so he doesn’t fall but he still does fall. Falling (or almost falling) means catching him or picking him up. 

All 210 pounds of him.

Robert has developed other health issues which require additional maintenance and medications to keep him as healthy as possible. I now brush his teeth to reduce the bacteria in his mouth so there’s less of a chance of pneumonia when he aspirates. We put the nebulizer mask on him twice a day to keep his lungs open and healthy. His medications have changed and increased so much that, for fun, I’d like to walk into a pharmaceutical school and take their final exam to see how I do. I may not get an “A” but I think I’d pass.

I have a strange idea of fun.

Incontinence has moved from urinary incontinence to occasional bowel incontinence. Robert’s memory is so inconsistent that sometimes I have to remind him which way to turn out of the bathroom to get to his bedroom or explain that it’s breakfast time and not time for a scoop of Rocky Road ice cream.

Still, I didn’t think we needed help. After all, there were two of us taking care of Robert. The bulk of the physical work fell to me since Richard has his own health issues but I was managing it okay – until I wasn’t.

My stroke last year was a wake-up call and I was determined to make changes. I immediately started walking regularly, taking medications to prevent another stroke and have greatly reduced my carb intake. For good measure, I feel even more guilt than usual when I cave to those sugary cravings. I do better about managing my stress and have no trouble saying “no” to doing too much for too many on any given day.

My longer term goals related to caregiving were to hire a housekeeper, take a respite and hire in-home care for Robert.

These goals took a little bit more work but I hired housekeepers, fired them after not showing or calling and promptly hired another company. I absolutely love this extra help and am grateful to be able to afford such a luxury. Richard and I took a respite within a few months of my stroke.

Two goals down; one to go.

I started my search for in-home care by posting an ad on NextDoor and, telling friends and family I was looking and calling several agencies. The referrals from friends were already working elsewhere, replies to the ads were minimal at best and the agencies either didn’t show up or were too expensive. (One rep came in and declined my offer to talk with Robert. She wanted to get straight to the services, their cost and even pulled out a contract. Um, thanks but no.) 

The other problem with agencies?  They only do medication “reminders.”  I’m sorry, but no amount of reminding is going to get Robert to take the correct medication. He needs to be handed a cup with two pills at a time and told to take the meds.

Even while looking, I was having trouble nailing down exactly what someone would do but decided a few hours a couple of days a week would be helpful.

One of the hardest parts of providing care to Robert is the constant interruptions and needs. He probably needs something every ten minutes. If it isn’t him asking for something, I am restocking supplies and medications, doing laundry, ordering more supplies and calling medical professionals and health agencies.

It would be nice to have a two hour break a few days a week but because it was proving to be so difficult to find care, my head started the excuses reel:

How can someone help me for just a few hours a week?  Will that really be helpful?  I mean, I can change him myself and let him watch Family Feud and have a few minutes to restock or do laundry or make calls.

Plus, what about our dog?  We have an older dog who doesn’t mind strangers but our “puppy” (who is actually pushing seven years old) takes a while to welcome people into his tribe. I wasn’t sure he would get used to someone.

Puppy and Oz
Other Brother asked me how my search was going and how he could help. I appreciated his offer to help pay for services but I refused to pay an exorbitant amount for a small amount of in home care – no matter whose money I was spending. Especially when Robert has the benefit of IHSS hours (which means we can hire a care provider using these hours and the state pays the person instead of us paying out of pocket).

I suppose that is one more excuse I was coming up with not to hire help but I really tried to find in-home care. It just was not working out – excuses or no excuses.

It became more difficult to find help than any benefit that I could gain even if I did find it. I told myself that all the other changes I had made after my stroke were enough. We were managing just fine, thank you very much.

Over the next several months, the decline in Robert’s mobility and health continued. There are more frequent bouts of pneumonia and his mobility takes a worse hit each time. The last bout of pneumonia really knocked him for a loop and he was in a Skilled Nursing Facility for a few weeks to get intensive physical therapy.

Not showering Robert. Not dressing him. Not sorting his medications. Not doing five loads of laundry a day (no joke). Not helping him stand or keeping him upright while he was walking.

This was nice. I really, really liked having a break from the physical part of caring for Robert.

We saw his mobility neurologist about a week after Robert returned home and she saw just how much trouble he was having even just adjusting himself in the wheelchair.

She looked at me and said, “You need to get in-home help. This is too much.”

I love this doctor. She cares for Robert but also cares about the impact caregiving has on me. She is smart and helpful and kind.

And she validated that what I am doing is a lot.

For some reason, I couldn’t do that for myself so let the reasons for not hiring in-home care pile up.

She told me she hired caregivers for her mom who has dementia and lives in an assisted living facility. She reminded me about She gave me a goal of finding a caregiver. Interview caregivers at Starbucks, she said. Find someone you like then bring them into your home.

She gave me the steps to find someone. Her words were what I needed to hear.

I told my best friend. I told Richard. I told Rachel. I told Other Brother. Rachel had been trying to convince me to get help on our nightly walks. My best friend told me she had been very close to calling Rachel and staging an intervention so I would get some help.

They all agreed we needed help. They knew all along. It just took me some time to see the benefit was worth the effort.

I renewed my efforts to find help. I placed another ad on and got several applicants this time. I took time off work and set up interviews at Starbucks. Some showed up, some were terrible, one was most likely impaired.

None were right.

I continued screening applicants. I did a phone interview and fell in love with someone but she had transportation issues. Then scheduling issues. It didn’t look like this would work out.

Then, a miracle happened.

My son-in-law saw a post on NextDoor from a woman who only wanted to work ten hours a week, was IHSS certified and lived a couple of miles away. He texted me her info and I immediately called her.

She was everything I had thought would be a perfect candidate: IHSS certified and she could work in the afternoons when Robert gets home from Day Program.

She even liked dogs.

Crazy Puppy
She came over and met Robert and Puppy. She loved Robert and didn’t run screaming from the barking Puppy.

I hired her on the spot.

Puppy barked at her the first day and Evelyn took it in stride. She gave him treats and Richard took him in the bedroom after a while so she could work with Robert. I showed Evelyn the routine for after Day Program and before we knew it, two hours had gone by.

Still, after the first day, I wasn’t sure if this was going to work. Puppy and Richard can’t stay in the bedroom for hours every day. Evelyn wanted someone who was mobile and Robert is, well, mostly mobile. I worried about that “mostly” part.

And Puppy.

I felt better after Day Two. Evelyn told me she wanted to do everything. She said I didn’t need to help her. She sweetly called me a mama bear (I can’t argue with her there). I went in the office and worked on a writing project. It was two hours of mostly uninterrupted time and it was glorious.

Puppy was even warming up to her.

By Day Three, we were calling her Auntie Evelyn and Puppy was comfortable enough to hang around her without barking.

Day Four Richard gave her a house key.

On Day Five, Richard had his first post-surgical appointment at the time Robert was due home and I wanted to attend with him. We weren’t sure if Evelyn and Puppy were ready to be alone together but Evelyn said she was ready. Puppy was ready too – he ran circles around her when she came in and then brought her a toy!

Mama Bear leaves them alone now; Auntie Evelyn and Robert watch Family Feud after she gets him into his pajamas and while she folds laundry. They laugh like old friends and are plotting how they can get on Family Feud together.

She is everything I wanted in a caregiver. It took a year but the effort to find help was worth it.

Wednesday, January 2, 2019

2018: Goodbye Awful, Hello Gratitude

I fully intended to write about the awfulness that was 2018.  For most of the year, I have been saying it has ranked high on the list of “worst years ever.”

After all, 2018 brought us Carol passing out in our dining room and smacking her head – lying unconscious for long enough that I was convinced she had died. 

Robert was hospitalized three times due to a variety of reasons: the flu (even after getting the shot), sepsis, pneumonia (twice before March), RSV (respiratory syncytial virus), and a week-long video EEG (which caused yet another bout of pneumonia).  He had his usual episodes of aspiration pneumonia which didn’t get severe enough to get him to the hospital but which knocks him out for at least a week.  Oh, and the usual seizure clusters (at least twice a month) which almost seem like the least of the problems he had in 2018. 

Richard underwent four skin grafts on his never-healing wound and saw each one fail.  Even after spending many days in the hospital on aggressive antibiotics and wound care. 

And 2018 also brought me my own huge wake-up call: a stress-related stroke that left me with numbness in my thumb and face. 

I almost forgot!  2018 also decided it was a good year for me to get side-swiped by a semi which left me very shook up but, thankfully, unharmed.

At first glance, yes, 2018 was nothing short of awful and stressful and, most certainly, difficult. 

I was the most overwhelmed I have been in my ten years of caring for Robert last January when both he and Carol were in the hospital at the same time and Richard was still recovering from his first skin graft.  And that was the first month of the year – before the weight of the year really bore down on us!  

I had no idea we were just getting started with our “epic” year. 

So, yes, 2018 was just awful but as I was looking through my calendar and photos from the year, I realized it was something else: wonderful!  I was so focused on how stressful it was that I had minimized the beauty of it. 

While Carol and Robert were in the hospital early in the year, our son-in-law spent hours converting our bathroom tub into a walk-in shower. It is not only so much easier for both of them to get in and out of but it is absolutely gorgeous!   

My best friend married the love of her life and one of my other dear friends drove me the five and half hours to the beautiful ocean-side wedding so I could be there for Joelle!  Sarah and I made the trip in one day so we only missed one day of work but we had a blast surprising Joelle and she got us there and back safe and sound (even with me cringing in the passenger seat because of the ridiculous drop-offs on some of the “roads”).  Bonus: I got to see the ocean!!
Richard and I took a trip to Alaska – just the two of us!  It was so relaxing and so much fun to spend time together without having to worry about hospitals, seizures, medications or caregiving. We saw whales and seals and more bald eagles than I thought I would ever see in my life!  The trip fueled my soul and I could feel the stress washing away. 

We had a second wedding later in the year when my step-daughter was also married and which brought an opportunity for family (including the siblings) to be together.  Two weddings in 2018!

Our annual trip to Disneyland for Epilepsy Awareness Day brought a reunion of sorts with my co-authors.  It feels as if they are always by my side (which they are) but we rarely are able to see each other in person. Hugging them was just what I needed in 2018. 

2018 also led me to a writer’s conference which introduced me to people I probably would have never met if I hadn’t taken the step to attend.  (I’m actually not sure I would have pushed myself to attend if I hadn’t had a stroke.)  It was out of my comfort zone but it is possible this will lead to more exposure for our books and some wonderful opportunities (fingers crossed)! 

And I don’t want to jinx anything but my face and hand numbness seems to be lessoning in intensity!  With any luck, I am hoping it will go away completely. 

When my mom became sick almost 20 years ago and we knew she only had few months to live, our motto became “there is no time like the present.”  We visited the ocean, we welcomed visitors we hadn’t seen in years, we shopped; we shared recipes, watched movies and played games. If 2018 taught me anything, it was to remember that motto and to live like there is no time like the present – whether we are dying or not. I did not need a terminal illness to remember that lesson (although, apparently, I did need a somewhat dramatic kick in the pants.)

Most importantly, throughout the year, I had the incredible love and support of my family and friends.  I know many caregivers are not as lucky as I am and, unfortunately, have family who abandon them.  I am fortunate – no, I am blessed (and I know that word is overused but I have to use it) – to have a daughter who spends time with me and who makes me laugh; a husband who pushes himself through pain to help alleviate my caregiving load and loves me so much; friends who listen to me rant at any time; a son-in-law who, regardless of how busy he is, spends hours helping us with home projects; a beloved mother-in-law who is there for both Richard and I as much as we are there for her; extended family who make me laugh and help whenever we need it and a sibling who not only appreciates the care I give to our brother but who is extraordinarily generous (beyond – I mean, he gifted me with a new car for my birthday! Who does that?!?!).  He is not only extremely generous but also emotionally supportive (and even came through in a pinch when I needed someone to stay with Robert during wedding #2).  I am happy to report that he and Taz are now pretty much best friends. 

My year may have been overwhelming and over-the-top stressful but through it all there were always smiles (sometimes through the tears or after them).  2018 ended with gratitude and love and the realization that we came out alive but also with a hope for a quieter 2019.  

I’m all for lessons and challenges and don’t want to be selfish but a less eventful year would be a welcome relief. 

Here’s wishing all of you a happy, healthy and hopeful year!  May 2019 be excellent for all of us! 

Wednesday, September 5, 2018

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 20th 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.

Monday, September 3, 2018

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 3rd 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 . . .