The Vaccine with a Side of Guilt

It's taken me a few days to post this because, well, I don't like being judged. (Just wait until I post this on Twitter!) 

I am prone to feeling guilty about everything anyway but this might be something others can relate to so will risk the judging. 

Because Richard and I are IHSS certified in California in order to care for Robert, we are eligible to get the vaccine. Richard got his appointment first but I had trouble getting one (mainly because I completed the survey incorrectly!). Rachel & Matt helped me secure an appointment when more sites opened up so I got my first shot last Friday. I definitely don't feel like I should be in the same category as "real" healthcare workers but I have a letter from IHSS that says otherwise. But, you know, guilt. 

What I feel really guilty about is that Robert also got his shot. The nurse who gave Richard his shot said Robert would be eligible under the care home category (which, in California, is in the same category as the healthcare workers). We're not actually a board & care home but the nurse said he qualifies. So Robert and I had our appointments on the same day. I was prepared to hand over my IHSS letter. No one asked for it. I was prepared to answer questions about Robert's eligibility and accept he wasn't eligible but there weren't any questions. 

We both got our shots. (And Robert got a chocolate shake afterwards for being such a good sport about it.)

I got a heaping serving of guilt. I feel guilty that maybe the nurse gave Richard wrong info and Robert really doesn't qualify; I feel guilty that I believed the nurse even though it didn't seem quite right; I feel guilty that we got our shots before others who need a shot got theirs; I feel guilty as a mom getting my shot before my kids get theirs (I recognize that as run-of-the-mill, typical mom guilt).  

So, yeah, guilt. 

I don't know if anyone else feels guilty about getting the shot before others do but I'm guessing there are a lot of us. Hoping the supply and distribution of the vaccine ramps up so everyone who wants a shot can get one. 

And I can stop feeling guilty! 

How a Childhood Gem Let Me Off the Hook

After going through a house move and an office move last year you would think the last thing I would want to do is unpack more boxes. For some crazy reason, though (probably because I am actually crazy), that’s exactly what I did last weekend.

Richard went to the Bay Area with his mom and brother to see his other brother’s new grandson (exciting!) while Robert and I stayed home and hung out with the dogs. Robert slept quite a bit which gave me an opportunity to get things done around the house.

I started by creating the to-do list of all to-do lists.

I have no idea why I had so much energy – especially since I had given up caffeine the week before. You’d think I would be comatose on the couch, unable to move without my Venti  Non-Fat, No-Whip Mocha (or two) coursing through my veins.

Mmmmm, mochas.  . .

Anyway, I digress.

I started by looking for copies of my book, Forever a Caregiver. I was sure I had extra copies at home and thought they might be packed away in a box in the garage.  I was determined to find them!

Well, one thing led to another and I searched through several boxes in the garage, which then led to (don’t ask) cleaning out and reorganizing not only my bedroom closet but my office closet and Robert’s closet.

Then I cleaned the house.

I started wondering if I accidentally drank actual coffee instead of the stuff in the cabinet labeled decaf.

I never did find my books but I did empty a lot of boxes. A delightful surprise when emptying those boxes was that I found a lot of old photos and even ran across letters I wrote home from my Girl Scouts summer camp.

Oh boy!

These letters were not only fun to read, giving me a glimpse into my 10 year old mind but they also gave me a gift. As a young adult, I had reread some of my diaries which caused me much distress.  (Note to millennials: these were small journals with tiny little locks that people used to write their innermost thoughts and then scream and yell when a pesky little brother tried to break the lock and read all the secrets contained inside. You know them now as “Facebook” and “Snapchat.”).

In one of my diaries I asked “Diary” why little Robbie bothered me so much. In fact, I told Diary that I didn’t think I even liked him.

Oh, ouch!

That was tough to read. Was I a terrible older sister? My goodness, my little brother went through all kinds of crap at school and with having seizures and here I was saying I didn’t like him? Where was my compassion and empathy and patience?!

These letters that I wrote during summer camp (and Mom was kind enough to save for me) showed me a different kind of big sister than Diary had led me to believe.  I only found three of the letters but they were enough to reassure me that I did have compassion and empathy and patience and didn’t just accidentally come by it as an adult.

Let me share these letters with you. Keep in mind I have horrible memories of summer camp. My homesickness knew no bounds and I have no idea why I agreed to go year after year.

I suspect these were written in 1971 or 1972 but I don’t really have a way of knowing for sure.  I changed my nickname from “Patti” to “Tricia” when I was 12 so these were written before the big name change.  (I am including the typos and misspellings even though it kills me to do so!)

July 13

Dear Robbie,

How are you? I’m Fine.

Thanks For the Letters. The’re cute. Only two more days and I’ll see you!

Did you get mom a birthday present? Have you had a wedding rehursul yet? Did you get your tux? IF you did I bet you anything you’ll be the best ringbery in History. I love you. Have you been swimming? I Hope so! If you were Here when there was mice in cindy’s Footlocker you’d Kill them, I know.

Well bye!

Luv ya,

Patti

P.s Please write

Was I actually advocating for killing mice? Yikes! Definitely was my pre-Animal Rights/Vegetarian days.

Then there’s this (and I don’t think we were required to write home daily – it was the homesickness, I’m sure!):

July 14

Dear Mom & Dad,

How are you? I’m Fine. We just got back From the overnight. I didn’t write last night cause we could not. We had to go to Bed. I only have four pieces of Paper so I’m writing you together, the boys together, grandma and grandpa together & the other grandma & grandpa togeter.

Please send me Eddie’s, Rogie’s, Great grandma’s address (nevermind) cause it’ll be the Last day when I write. Tell Eddie Hi Rogie Hi Julie Hi Lynda  Hi & steve & tod Hi, ok? Are you still working good, dad? I’m sure you are. Well sorry it was such a short Letter but I don’t have enough paper.

Luv ya,

Patti

P.S write Soon

Apparently, my paper multiplied . . .

July 14

Dear great swimmer & handsome

How are you? I’m Fine. I’m writing you together cause I only have 4 pieces of paper. We are about to Have Lunch. What are you haveing For Lunch? I don’t know what we’re Having. are you going swimming at cryer ave? I’m going at 2:30 I have to eat lunch  Bye

Luv ya,

Patti

P.s Write soon

Posing with Dad, his parents and two of his brothers
("Robbie" is on the left, Other Brother is next to him)

Finding these letters not only gave me a slightly better looking garage but gave me some peace of mind about how I treated “Robbie” when we were kids. I never really thought about being a sibling of someone who needed extra care and attention. It never felt like it affected me as a child but I now realize it affected me as an adult. Not because I felt left out as a child and carried that with me (that was obviously impossible with our close, extended family) but because as an adult I wondered if I treated Robert with care or if I was impatient and terrible toward him and felt guilty about it.

I definitely had my moments of impatience with him that I distinctly remember and that most likely ended up in my diary but I realize I did care about “Robbie” more than I realized.

Thank goodness “letting go of guilt” can be crossed off my to-do list.

Going on Vacation? Eight Tips to Prepare both You and Your Caree

I went on a family vacation without Robert.  Readers, friends and family know I struggle with guilt whenever I go away.  One thing I do not struggle with is preparing Robert, his care facility and even me for my absence.  

And, no, I am not writing this post just so I can share pictures of My Most Wonderful Vacation Ever.

Enjoying Barcelona with my Daughter

 

Everyone has their strengths.  Mine appear to be spreadsheets, to do lists and top ten lists. 

 

Hey, it’s something.

 

In case you need help in the list department, here are some tips for caregivers going on vacation without their caree. 

 

1.       Find a way to take a break.  Whether it’s for two days or a week or two, it will rejuvenate you in ways you never imagined.  I am lucky enough to have a generous Other Brother who helped with the expenses of my trip.  He lives a couple of hours from us and isn’t involved in the day to day care of Robert but he sure knows how to keep his sister sane.  Between humorous emails, a listening ear and a generous heart, Other Brother does his part.  I am grateful and know how lucky I am. 

 

Finding help for your caree while away can be a challenge.  Kathy, who cares for her Hubby, uses the resources at the Veteran’s Administration to give her an annual break.  Her Hubby served his country and now is living with Lewy Body disease.  Kathy is his full-time caregiver and struggled for years to take advantage of this benefit.  Once she did, she realized it is something she can’t do without.

 

2.       Plan for the Worst.  This sounds morbid but I did make plans in the event Robert needed to be hospitalized (not out of the realm of possibility since he had pneumonia and sepsis in May).  Other Brother was on board with being the contact person in the event of an emergency.   New Home was given instructions to contact Other Brother if Robert landed in the hospital.  My best friend offered to take Robert’s calls if he called the office.  Others offered to be available in the event he needed anything.  New Home was given these contact numbers as well.   

 

3.       Give Replacement Caregivers Plenty of Notice.  I notified New Home and Day Program well in advance of my trip.   In fact, I told them before I told Robert.  Robert wouldn’t remember if I gave him two months’ notice but his facility and day program would be aware of my plans to be away.  This gave me time to discuss solutions to problems that might arise while I was away.  I wasn’t sure if Robert would become surly if he missed three weekends at my house and wanted to prepare all of his caregivers for this possibility.  As it turns out, Robert didn’t get cranky at all but I was happy to have prepared for this possibility. 

 

4.       Create a Care Summary.  Robert lives in a care facility and (knock on wood), of late, I’ve been cautiously happy with the facility.  (Are there enough disclaimers there?)  The new House Manager is communicative, enthusiastic and sincere.  She’s the best thing to happen to New Home.  I notified her as well as the nurse, director and their patient advocate (using the term loosely) of my plans.  I sent them my one page emergency spreadsheet: meds list, contact list, doctor numbers, etc.  This summary sheet includes Robert’s insurance information as well as his Day Program contacts and Other Brother’s contact information.  By now, New Home knows not to change Robert’s medications and understand his quirks so I didn’t need to tell them these things but a new caregiver would benefit from this information.

 

5.       Schedule Meetings and Appointments around the Vacation.  New Home has an annual ISP meeting for Robert (basically, a care plan meeting).  This is always held in his birthday month which is when I had the trip planned.  I asked the meeting not be held while I was away and was assured it would not. When I left on September 2, a date had not yet been set.  When I checked my email on September 3 (from a different country), it was being set up for two days after my arrival back home.  I wasn’t thrilled with this since it meant missing more work after a lengthy absence but I was able to attend and am (although grumbling a bit) grateful they granted my request not to meet while I was away.  Robert also had appointments with his neurologist and general practitioner shortly before I left so I was confident he was healthy.

 

6.       Prepare the Caree.  When it got a little closer to our departure date, I told Robert about our vacation. He wanted to know when I would be gone and his first comment was, “That’s during my birthday.”  (Not helping with the guilt, Robert!).  I assured him we would celebrate his birthday when we returned.  I also arranged for my Mother-in-Law to deliver a cake to his Day Program on his birthday.  House Manager even got him a cheeseburger, fries and Rocky Road Ice Cream on his birthday.   From all reports (including from Robert himself), he had a wonderful day.

 

I reminded Robert about the trip a few times but I also wrote the dates we would be gone on all of Robert’s calendars.  I think this simple act reassured him I would return and he could resume his usual activities of visiting me on the weekends (although I think what he really missed were the chocolate shakes he gets here).

 

7.       Stock up on Familiar Supplies.  Robert is very routine driven and has trouble with change.  I insist on providing all of his personal care items because he has particular brands he likes and is discombobulated if he gets a different brand of toothpaste or shampoo.  This familiarity also provides some comfort to your caree when the regular routine is changed (as it is when you’re off on vacation).  I showed Robert where everything was and notified his New Home of the location of his extra supplies in case he didn’t remember.  I even remembered his blue, clicky pens this time . . .

 

8.       Ease into the Return.  I got back from vacation and resisted the urge to call Robert immediately.  I was confident he was still in good hands and I needed to recover from a long, stressful flight and jet lag.  I gave myself this extra time and called him after a couple of days of being back and saw him at his ISP meeting, taking him to Day Program afterwards.  My delay may seem selfish but I knew I had to ease myself back into my full-tilt caregiving role.  Everyone is different but it’s important to step back and recognize your own needs.  (Preferably while keeping the guilt caged up in another room).  When Robert visited us the weekend after we returned, he was happy to hang out drinking his shake and being on the receiving end of souvenirs (a blue, clicky pen from the cruise ship and a pendant of Mary to go with his gold cross necklace).  My husband and I were happy to have him over and were well refreshed to resume our caregiving role.

 

Do you have any other tips for caregivers leaving on vacation?  I would love to hear your ideas!

Vacation!

Sheesh, after all the planning and prepping and packing and organizing, I need a vacation!

Oh, wait . . .

Can I come too?

Yay!  I am going on vacation! This isn’t going to be any vacation, either, but a vacation of a lifetime.  Both daughters graduated from college this year and have planned a trip to Europe as a celebration for years. 

Hubby and I are tagging along (partly due to a generous gift from Other Brother and partly because I’m having a difficult time coming to terms with the girls growing up!).  Yes, I plan to follow them around wherever they go throughout their life (shhh, don’t tell them my plan!).   

The vacation looks a little different for all of us (they left before we did and one daughter and her boyfriend are staying longer than the rest of us) but we meet up in Rome and will all be together for a few days touring the sites and drinking some wine and then will board a giant ship for a seven day cruise to France, Spain and other parts of Italy. 

I guess I should have paid attention in French class or taken Italian!  Well, let’s see, I know “Ciao” and “Vino.”  I better learn “please,” “thank you” and “where the heck is the bathroom?”  I’ve been practicing a few words but I can’t seem to get the accent down and end up stumbling over the words and sounding exactly like some American who doesn’t know the language.   

I better stick to drinking wine and not talking.

Vacation prep has been going on for months.  Aside from actually planning the vacation and transportation and tours (not to mention preparing for my absence at work), I have to be sure Robert is aware we will be gone and is well-stocked with his supplies.  His care facility and Day Program have been notified I will be gone and given contact information for Other Brother in case of an emergency.  They have been warned Robert may get grumpy because his routine of visiting us is being disrupted.

I had to tell Robert a few times that we would be leaving and when we would be gone.  I also wrote it on all of his calendars so he will be reminded when he looks at the calendar.  If he happens to call my office (which happens frequently) then my best friend will talk to him and remind him I’m gone for a while and will offer to take care of whatever he may need.

It’s been an ongoing battle to keep guilt at bay, especially since Robert’s birthday falls while we are away.  Don’t think this didn’t escape his attention – when I first told Robert when I would be on vacation he was quiet for a while and then said, “That’s during my birthday.” 

Yep.  He can’t remember what year it is or the name of the president or what he had for lunch but he certainly knows when his birthday is!

That’s okay; I know Robert will be fine.  My wonderful Mother-in-Law is going to take birthday cake to his Day Program and his house manager is going to treat him to a cheeseburger and Rocky Road Ice Cream that night.  Plus, we’ll have a celebration once we return from vacation.  He’s going to be one happy guy.

We’ve arranged for the animals to be cared for and Other Brother even gets to have Sassy (and all of her medications) again for a while (we’ve shared custody of her ever since Mom died which means Sassy is about 102 years old).

My suitcase is packed and weighs in just under the weight limit (I refuse to pay extra to check another suitcase or pay a penalty for an oversize bag).  Admittedly, my shoes have to be in my carry on to stay within the weight limit but I have to bring several pairs of shoes!  I mean, I have to! I can make a lot of sacrifices but paring down my shoe choices is not one of them.

Thankfully, a friend reminded me to leave my guilt at home because otherwise my bag would be over the weight limit!  I’m taking her advice and going on vacation with confidence the animals and Robert will be well cared for. 

While I’m away, I have scheduled interviews with other family caregivers which (hopefully) will automatically post.  Enjoy meeting these family caregivers!

Also, check back over the weekend of September 7 for epilepsy related posts (including an interview with Robert) in support of the Talk About It Foundation’s first annual Epilepsy Awareness Weekend.

Ciao!