What Happens When the Caregiver Needs Help – Our Story

Our caregivers are super important to us – sometimes critical to our well-being. So what happens when they need help? Stroke stories. Read ours.

Come along on our journey through the storms of strokes.

Our story, short version

Day #1

July 22, 2019, six days after our 53rd anniversary, one day before Joe's 74th birthday, he returned from his 2 1/2 mile walk on our local nature trail.  He told me about sudden numbness starting at his left elbow, radiating down to his fingertips.

I Googled sudden numbness, checking Mayo Clinic and WebMD. They indicated that if it was due to a stroke or heart attack, he would likely have at least one other symptom in the list. He didn't. As numbness has several causes, we chose to wait and see.

We did seek help at a local walk-in center but were unable to see a doctor. After checking him out, the nurse said he could go to the emergency room (ER), urgent care, or home for a couple hours and see what happened.

We opted for the third option, and Joe improved. Okay. No stroke story--yet.

Days #2-4

On the 2nd and 3rd days, Joe's numbness fluctuated. Ignoring the nurse's suggestions to visit ER, we waited. By the 4th day, something seemed off with Joe, and the nurse got him into our doctor within one hour. After a thorough exam, he sent Joe to ER by ambulance, suspecting TIAs.

After a 6-hour wait, we learned his brain MRI showed a tiny stroke, not a TIA.

They admitted him for an overnight hospital stay performing more tests the next day then sending him home on a blood thinner. They said he was high risk for a second stroke within two weeks.

Days #5-7

Joe’s unusual fatigue continued to abate and his numbness decreased.

Day #8

Joe felt much better, so he decided to drive me for my Botox treatment. When I finished, he looked strange. I asked if he was okay, and he answered, "No. I need to go to the clinic. My legs aren't working."

And thus began our 2 1/2 week odyssey through the maze of recovery from his 2nd stroke.

Note about ER visits

Since Joe is diabetic (controlled), we have more than our share of ER visits. The doctors do tests, then release him when they find nothing serious. Hence, our dislike of the ER. I cannot drive, so we have to find transportation to and from ER as well as someone to push my wheelchair or to drive our car with the scooter lift. Also, my fatigability causes problems. But I don’t want to stay home at these critical times.

More detail

On day #4, the ambulance took care of transporting Joe. I drove our car the 5 minute drive home, and called our church secretary who found a couple to drive our car to the hospital, so I could have my scooter there. They then went home expecting to come back and pick Joe and me up when they released him from ER. Surprise! Docs found a tiny stroke and kept him. So my friends took me home. I was exhausted.

The next day (#5), our son Bill, who lives 40 minutes away, brought Joe home. We relaxed on days #6-7 as Joe improved.

Day #8 was horrendous. Joe drove me to my medical appointment. He went for a walk while I saw the doctor. When I came out, he looked awful. I asked if he was okay; he said he thought he was having a stroke. Following Joe's statement, I drove him to ER (6 blocks away). By now, walking was almost impossible so they checked him out and discovered a 2nd stroke. And so, our stroke story continued.

For me, the biggest problem was I did not have my scooter. The concierge got me a wheelchair, wheeling me back to wait with Joe. After that, I had to walk when needed. After 5 hours, I was too fatigued to stay for the tests. Bill drove our car home; his wife drove theirs.

Day #9-week 2+

Of course, they hospitalized him again. Two days later, they sent him to a top-notch rehab center where he stayed for two weeks, recovering quite well.

Practical issues

• Transportation
  • For ER, hospital visits, my medical appointments, shopping.
  • People from the church and friends jumped in to drive me.
• Meals
  • Friends brought a few meals. Joe frequently cooks, so this was a problem for me.
• Housecleaning
  • Two special people helped.
• Dog care/yardwork
  • • Being totally unable to do these tasks. I finally found a neighbor willing to feed the dog and water our yard.
• My care
  • No time to plan.
  • Biggest problem? Fatigability.
    • Most tasks, I could accomplish on a one-time basis.
    • For a day or two, I could have managed but not for two weeks.
    • By improvising and with the help of friends, somehow I survived.

Fun times

• Our son Tom and two of his girls made the six-hour trip to see us. (His wife and younger daughter were out of the country.) Two of Bill’s kids enjoyed visiting with their cousins at our house.
• Tom, the four grandkids (3 teens and 1 young adult), and I visited Joe in rehab. The lively visit turned hilarious at times. Much laughter could be heard. Joe's roomie later commented how much he enjoyed hearing people laugh.
• Joe called every day, usually several times between therapy sessions. We talked and laughed so much.
• Bill and his family visited Joe also. One night Bill and Joe watched a baseball game.
• Several friends also visited Joe.

Now, Joe is home and still improving. We learned that even small strokes can cause big damage. His long-term prognosis is good, although he remains at high risk for another stroke for the next year. So we need to make minor lifestyle changes.

Lessons we learned

#1 - Being healthy, exercising, and eating right don’t keep a person from having a stroke.

#2 - We didn't know as much about strokes as we thought we did.

#3 - We had no emergency plans.

#4 - Our support system was barely adequate.

#5 - I discovered how many more things Joe did then I had even realized!