This is a Test . . .

Robert was anxious to come over to our house this past weekend and I was happy (and ready) to bring him over.  He is staying for a couple of extra days because he has a neurology appointment today and it just seemed easier to keep him than transport him back and forth and rush to get him back in time to take his meds.   

He’s been here since Saturday and is staying through tomorrow morning.  We planned to still take him to Day Program which means dropping him off and picking him up by mid-afternoon.  It’s a bit of a juggling act (because of work and because Hubby has his own caregiving to do, helping out his mom) but I mentally prepared myself for it and have been looking forward to seeing how a longer stay goes. 

Will I be exhausted by Wednesday?  (probably)

Will Robert be sick of us after four days? (doubtful)

Will we make it to his doctor appointment on time (which involves leaving work from downtown to his Day Program 40 minutes away, back toward downtown to his doctor appointment which should take about 30 minutes, finding parking and allowing for bathroom breaks)?  (hmm, I give it a 50/50 chance)

Will I run out of Rocky Road Ice Cream after four days?  (absolutely)

I felt up to the challenge and was excited about feeling refreshed after a break.  I am also focusing on recognizing stress and dealing with it so it doesn’t come out in impatience.  

It’s a good thing I’m working on that stress thing since, so far, my strength has been tested!

Saturday:  As soon as Robert and I were in the car (with the doors and windows shut) and driving to my house, I realized he needed to change his protective brief.  Once we arrived at the house, I realized a clothing change was in order too. 

No problem.  Robert was happy I had stopped to get him a chocolate shake (otherwise known as a Double Chocolate Chip Frappuccino) and I had my brand new, patient, attitude.   We made quick work of the clean-up and change and Robert was watching the Jeopardy shows we recorded for him.

Two hours later . . . another clean up and full change.  I had to laugh at this obvious test of my patience.  One clean-up and change a day is not uncommon but two?  Not a usual occurrence so I was sure the Universe was testing me.  Bring it on!  I can do this.

Bedtime . . . Robert is visibly shaking under two comforters and telling me through chattering teeth he is freezing.  (note to self: stop taunting the Universe).  I run to the pharmacy for a forehead thermometer because I don’t trust him to keep an oral thermometer under his tongue for two minutes.  After  several minutes of consulting with Hubby and the directions, we figure out how to work the darn thing and take Robert’s temp.  No fever.  Odd, considering he feels warm and his chest is reddish and hot (I chalk it up to the three comforters he is now cocooned in).  I give Robert a fever reducer with his normal bedtime medications, just in case. 

Sunday:  It’s 4:30 a.m. and Hubby is telling me Robert is calling me.  Oh crap.  I meant to wake up earlier and check his temp.  I extricate myself from the fort created around me on the bed which is my two cats and large lab and check on Robert.  He says he’s too warm and needs one of the comforters off.  I remove it in my half-awake state and feel his forehead.  I think it felt okay but I was still so sleepy, I just went back to bed without it really registering. 

By 6:00 when I actually wake up for the day and am not quite so fuzzy headed, his temperature is over 100 degrees (which isn't terrible but for Robert it takes a huge toll).  I give him his morning meds and two more Acetaminophen. 

Robert’s temperature was back to normal by mid-morning but the damage of the fever had been done.  He was moving at half speed (which is pretty darn slow considering he’s slow to begin with).  I got him cleaned up from the night before and remade his bed so he could spend the day resting.  He slept all day, only waking for meals and meds. 

By evening: His fever was back up (I know this because I’m making the most of the new fancy thermometer).  More comforters, more Acetaminophen, more sleep.

Monday:   If Robert was moving at half speed on Sunday, he’s half of that Monday.  He was up most of the night coughing so I keep him home from Day Program, rearrange my schedule and run to the office to pick up some work while hubby is still home in the morning and find an urgent care center for Robert.    By early evening, Robert had antibiotics and no fever.  Still extremely tired and needing three comforters but I think we’re making progress.

Today, he’s back up to half-speed and seems to be feeling better.  He feels well enough to go to Day Program and he has his neurology appointment late this afternoon.  I’m up for what is in store for us today . . .

(Note to Universe: to be clear, that is NOT a taunt!)

Tricks for the Working Caregiver

I’m calling these “tricks” deliberately.  Sometimes we have to trick ourselves into helping ourselves.  Working caregivers think they can do it all (I know – I am one).

The fact is, we can’t do it all (but admit it: we still secretly think we can).  See why we need tricks?

What is a working caregiver?  For starters, the obvious fact is that all caregivers are working.  A working caregiver is someone who is a caregiver but also holds down a job. 

That’s two full-time jobs if you’re keeping count.

According to the National Alliance for Caregiving in collaboration with AARP (November 2009), 73% of family caregivers providing care for someone over the age of 18 either work or have worked while caregiving.   According to the same study, 20% of family caregivers have had to take a leave of absence from their job at some point during the caregiving experience.

If we can’t give 100% to both of these full-time jobs, then what are some tricks to help manage the situation as well as maintain our health and sanity?

1.        Create a team.  Talk with other family members about the caregiving situation.  See if there are things the other family members can do in order to help.  If someone is good with money, they can manage the caree’s finances.  Is someone else a thrifty shopper?  Send them to the grocery store on occasion.  Ideally, someone could take over the caregiving duties for a few hours so you have a break.  Don’t forget to confide in your friends about your situation so they can provide emotional support or maybe even make dinner occasionally.  This is not the time to keep your caregiving situation a secret.  Now is when you need a large, supportive team.   

2.       Communicate with your employer.  Tell them what is going on.  Do you need a schedule change?  Maybe you even want to reduce your hours.  Give your employer the chance to work with you so talk to them about your situation.  You need them on your team too. 

3.       Manage Expectations.  If you know your day job is busier at a particular time of year, prepare for that by not planning major changes for your caree at the same time (note to self . . . ).  Acknowledge you will get tired, you will get cranky and you will even get sick on occasion.  Don’t beat yourself up when you are feeling this way because guilt is not going to help anyone.  Do the best you can.  Expect that not everything will go perfectly smoothly.  Actually, expect things to be pretty darn bumpy sometimes but know the next day may be just a little better. 

4.       Ask for help.  Why else did you create a team?  Ask them for help – specific help.  Some people actually don’t know where to start when it comes to caregiving and so need a little direction (sometimes a lot of direction).   Even if you know you can do the task better or you think you can eventually do the task, ask for help anyway.  The task is then done and you’re able to cross something off your list (what a great feeling!).

5.       Seek out resources.  Find reliable online medical supply companies (shopping for supplies online is so much easier and less time consuming than driving to a store).  Connect with social service agencies in your area.  Join a support group (whether in person or online).  Denise Brown has created caregiving.com which brings family caregivers together in a supportive and enriching environment.  Denise has also written an e-book called “The Working Family Caregiver: Tips for Balancing Career & Caregiving.”  Click here to learn more about this resource and to download the free e-book. 

What suggestions do you have for the working caregiver?  If you are a working caregiver, what has worked for you and what tricks (or tips) can you add? 

Take it From this Caregiver: Take a Quick Break

It’s my busy time of year at work and in addition to being busy all day and exhausted by the evening, I’m stressing myself out because my to-do list for what I want to accomplish once I get home from work is several pages long.  I want to write more blog posts and finish a few writing projects.  I have emails to respond to and am not answering them as promptly as I normally do, I’m not as active on the social media sites that I’ve come to use to connect with people with epilepsy or caring for someone with epilepsy or other caregivers ( I think I need a “I Love Twitter” bumper sticker). 

Also on the list is taking care of a few tasks for Robert (such as lighting a fire under New Home to get cable for the television in his bedroom).  Every time I email them about it, they tell me they are “this close” to having it done. 

Two months later . . .

Still, no cable.  I’ve let it slide too long, although part of me was hoping the garage conversion would be done and he wouldn’t need cable over there.  Now that I realize the garage conversion isn’t happening, I can get back to hounding them to get cable so Robert can once again enjoy Jeopardy and Wheel of Fortune in his room.

I get stressed out when my to-do list grows.  I also get stressed at work every year at this time (same projects with each new year) but I know the projects will end and the stress will pass (although there are those fleeting moments when I wonder).

I just hope everyone who I’ve snipped at realizes that there is an end in sight and I’ll be back to being nice again.  Soon.   I promise.

Just to cover my bases:  um, sorry to everyone I’ve been snippy with. 

Surprisingly, I’ve been nice to my Hubby who usually gets the brunt of my snippiness.  He should plan to have surgery every year at this time because, obviously, I can’t be mean to someone who’s just had surgery.   (He’s almost completely recovered, by the way). 

My advice to caregivers (working or not) or anyone else who is stressed out is to take a break.  Breathe.  Forgive yourself if you’re not getting as much done as you’d like. 

Maybe even ask for help. 

I actually took my own advice earlier this week and asked for Hubby’s help.   It wasn’t a huge task (taking Robert new glasses because his other pair broke – this must be his 10^th pair by now) but it saved me a trip and Robert didn’t have to wait for days for the new glasses.  It may have been minor but I was extremely grateful for the help.

Next up:  Take a break.  Breathe.  Forgive myself for being behind.

I’ll have to work on those.  Right after my projects are done.

(You didn’t really think I’d follow all of my own advice, did you?).  J