Universe, Are You Testing Me?

On Tuesday, I announce that Robert is going to live with us starting in April.

On Wednesday, the Wonderful New Home House Manager calls to tell me Robert is not feeling well and wanted to stay at New Home instead of going to Day Program.  Robert has had a cold/flu all winter and has periodically missed his Day Program to stay home and rest.  Between living in a home with six guys and going to a Day Program with 50 + adults, all of whom need assistance in some way or another, Robert pretty much lives in a germ factory.

Robert is on the mend!

Robert is on the mend!

By Wednesday evening, Robert’s cold had gotten worse so I decided to pick him up from New Home and keep an eye on him at our house.  Robert tends to go downhill pretty quickly and because New Home is located pretty far away, if an ambulance is needed they won’t take him to the hospital associated with his doctors.  This means I have to update new doctors on his epilepsy, medications, medical history, etc. while trying to get him treated for whatever ails him.

If he’s at my house and we have to call an ambulance, they’ll take him to the hospital where both his GP and his neurologist are affiliated.  Emergency Rooms are hectic enough without having to start from scratch.  Driving the hour and a half round trip to get him up was definitely going to make things a lot easier if Robert suddenly took a turn for the worse.

Once Thursday morning arrived, I was even happier with the decision to bring him to our house.  Robert woke up with a fever, was extremely lethargic and his cough sounded awful.  I was worried about pneumonia again so made Robert a doctor’s appointment which wasn’t until late in the day.

I started to suspect The Universe was testing me.

Robert was sick, I had a work event mid-day, Hubby was taking his mom to a doctor’s appointment out of town so couldn’t stay home with Robert and Robert had a doctor’s appointment late afternoon.

Oh, yeah, and one of our bathroom pipes sprung a leak.

Yep, The Universe was really enjoying this.

I thought I might be able to take Robert back to New Home for a few hours so I could take care of the work thing.  If so, I could pick him up once I was done and take him to his doctor appointment.  It would be tight but doable.

Except Robert could barely keep his eyes open much less get up and walk out to the car.

I realized I wasn’t going to make the work event (much less get any work done).  Robert slept until it was time to get ready for the doctor.  Once there, I was grateful for the wheelchairs they have available if needed.  I wheeled Robert into the appointment and talked to the doctor about how sick he was (while Robert was groggily telling her he felt excellent).  She prescribed antibiotics to fight off suspected pneumonia and a chest x-ray to confirm her suspicions.  I took the opportunity to talk to the doctor and her nurse about the plan to move Robert into our house and ask for their advice on how to manage the medications.  I felt much better about the process after talking to them.

Robert stayed with us for another night and while Hubby supervised his dinner, I ran back to New Home to get more of his anti-seizure medications as well as the antibiotics.

I’m exhausted before Robert has even moved in but think I did okay on The Test.  I didn’t eat as well as I should have and I let myself get stressed out for a minute about not doing all I had planned but I was able to adjust Plan A and go to Plan B.

I also realized I don’t need to get an A+ or do 100% of what I had hoped to have a successful caregiving day and was able to get information on how to get Robert’s prescriptions transferred.

It helped to reach out for support from my fellow caregiving friends here and got this bit of encouragement from @Denise,  “If I might offer a perspective: I don’t think this is a test so much as a reminder that you are critical to Robert’s well-being.’”

Well, if this is a test I’m going to count all of these as extra credit. Not that I’m competitive or anything. :-)

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

4 thoughts on “Universe, Are You Testing Me?

  1. Profile photo of JaneJane

    Hey Trish:

    I think you did a wonderful job of pulling everything off just like I knew you would. I totally agree with Denise’s perspective. It is so much more positive when you look at it from that perspective.

    I am so happy that Robert will be staying with you and I know you will be able to do everything you need to do to make this work out.

    I am always so inspired by you.

    Hugs:o)
    Jane~ mom to Nicole, 18 yo
    VSD: ventricular septal defect
    PFO: patent fotant ovale
    ES: Eisenmengers Syndrome
    PAH: pulmonary arterial hypertension
    BHJS: benign hypermobility joint syndrome
    “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

    Reply
    • Profile photo of TrishTrish Post author

      Thank you, @Jane! You know you inspire me too and I know how much you’ve had to learn with Nicole’s meds. I’m sure I’ll be asking you for advice! Hugs!

      Reply
  2. Profile photo of RichardRichard

    Trish,
    Great post, just a brief update on the toilet leak, it was leaking before we noticed it and when we did we also noticed a large wet patch in the carpet of our spare room next to the bathroom. Had to rip up 1/2 the carpet (and fix pipe). Your week is more like Christopher (our son) sitting next to you doing his little, poke, poke games. Hey we’ve had worse thrown at us and I’m sure there will be more but with each other, family, friends and caregiving.com we have and will always get through it. Teamwork

    Reply

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