EnableMe | enableme - stroke recovery and support

It's been almost a year since my father had his quadruple-bypass and first set of multiple acute strokes. It’s been 8 months since his last stroke. Dysphasia appears to have generally cleared from immediate danger, Aphasia has remained. He has brain damage and as a result has impaired decision making and planning skills.

Thought I would share some of my own personal learnings as a primary carer, hoping it may help others in their own journey.

1. (Don’t laugh) … but …..BUY A BOX OF MUSLIE BARS….. Keep a bar with you EVERYWHERE YOU GO. Dad spent 2 weeks in ICU, 8 weeks on the ward, 5 weeks live in rehab. I was working full time (leading a team), the hospital was 20 min from where I live/work (30-40 in peak hour traffic), i visited everyday and any spare time I got was spent updating family & friends of his health position. Often times I’d be so busy & stressed, I would forget to stop, breath and eat. When I did have a moment, BOY WAS I STARVING. Usually the only time I got to think about myself, was the car ride between and muslie bars are a SAVIOUR! Another tip might be that I know friends aways want to help & don’t know how. Tell them to feed you and avoid asking you questions (when you are ready to talk, you will), but right now, you need to save your energy. Your friend can put a salad/snack box together for you to cover a few days is handy. You can just grab it & go. Eating is easy, planing & prep is harder when you are already doing SO MUCH.

2. GET A NOTE BOOK ASAP: WRITE EVERYTHING DOWN. Ensure you record a date, who you seen (Specialists/Dr's/therapists etc) and a brief summary of your encounter and next steps needed. You/your carer can then take time to understand (google etc) it at home in your own time. I found this also was helpful to understand what medications & medical terms were for what. Super helpful to reflect back on stuff that needs to be done too & accountability. I wrote stuff down that the nurses /dr's were saying and googled it. That's how i figured out dad had a stroke, by stumbling across My Stroke Journey (https://strokefoundation.org.au/About-Stroke/Help-after-stroke/My-Stroke-Journey) . I told the Dr's/Nurses never sat me down and never spoke to me in non medical jargon prior to me telling them that i think this is what has happened. I wrote that down in mynotebook too as Dates/timelines and how you are treated as the next of kin is important too.

3. NEVER BE SHY OF ASKING A MEDICAL PROFESSIONAL TO RE-EXPLAIN IN LAYMEN’S TERMS. The appointment is YOUR time to understand. If they are going fast or seem like they need to get onto the next patient, ask them to slow down. Remember, they do this day in, day out. You… don’t.

4. If you feel that a health professional is playing down a concern of yours, ask them to DOCUMENT THE ISSUE you have raised on their system/records and their response to it. For example, I suspected my father had early stages of a chest infection (likely cause, due to his then dysphasia). I requested a scan as a precaution (to prevent/treat pneumonia) and was being talked out of the scan. I asked health care professional to document that I have requested the scan and they are not pursuing my request on the patient records. Boy did the scans get done quickly AND turns out I was right – He was straight onto antibiotics. Just to note, I didn’t request in a nasty rude way or with an angry tone/attitude, I simply requested what we are entitled to. Transparent patiend documenation/records.

5. GET A FOLDER WITH PLASTIC SLEEVES – Helpful for those on the longer recovery journey. Mark some tabs for things like: GP, blood test results, occupational therapy, speech, current medications, etc this will help with filing all of the confusing paper work and ensure you head to all of your appointments with the documents/referrals.

6. FOR WORKING CARERS - I worked full time all the way through. It wasn't easy. I was grateful that my boss allowed flexible working where i could lead my team and smash my work out during times between appointments/when i got home late at night. I recommend getting a $2 pocket calendar fromt he dollar shop. One to scrible your carers appointments down in, then when back @ work/in the office, adding them to your work calendar to block the time out. I also only added the acronym FWA in my calendar as the meeting title + added the 'private' setting so prying eyes didnt know what it was for and couldn't gossip/make controversial. FWA = flexible working arrangement) and i told my boss this is what it was for, so when he checked my calender, he knew where i was.

7. My father has many prescriptions, and even more back when it all began. I created A PRINTED COPY OF CURRENT MEDICATIONS, DOSAGE + WHAT THEY WERE EACH FOR LIST to have handy when visiting the different specialists. A few specialists were actually asking me what med’s he was on, dosages etc. I didnt know at the beginning, i was stressed enough with trying to understand what was going on. So i sat & types up a list that I could just whip out of the folder quickly and didn’t have to sit & try to remember them all. They can take a copy from you and type it up later for their records.

8. AUTOMATIC PILL DISPENSER has helped DRAMATICALLY!!! – I get blister packs from the chemist, add them to a locked pill dispenser for my father who lives alone. Although initially an expensive device, but totally worth it and I am relieved to know he is taking them on time. If not taken, alarm sounds for 30 minutes (loudly) until he takes them. You can do it yourself, or get your chemist to set them in with a special tamper seal. https://www.tabtimer.com.au/

9. A WHITEBOARD – each day is simplified for him about what is on for each day (appointments/Bin day/wash your clothes day). I have set it up for a week at a time broken down by Monday – Sunday. No more than 3 points on a given day.

10. MY AGE CARE – I found out that people wait to be assessed too late for additional support. Even if you are assessed today, you go on a lonnnnng waiting list. My aged care is not only for your loved one, but for you too. As the primary carer, I find it extremely helpful for our support agency to come out 3 times a week for shower time/cleaning.

11. PRACTISE GRATITUDE - Hard i know. But as a carer, when you have an 'okay' day that is not as hard as the 'harder' days... think about what you are greatful for and why that day is not the hardest. A few of mine were:

* Grateful that my dad wasn't the guy in the bed next to him. The >70yr/o guy next to him had no family/friends, couldnt speak english and the Dr's nurses were seeking out nursing homes. I was grateful my father had a daughter.

* Grateful that my dad sat up in bed & was hungry (always a good sign)

* Grateful that the lady across in the bed from my father gave me some left over food one day when the canteen was closed (i was starving)

* Grateful that my aunts came from interstate when i thought things wernt going too well, and expected the worst.

* Grateful for progress

* Grateful that i get a chance to cook, clean, cut toenails, wash soiled clothes, shop for and laugh at things that arn't funny, but to him are funny.

* Grateful that i get to spend time with my loved one, that others didn't get to spend with their loved ones.

* Grateful that i drank a glass of wine in his back yard under the tree because it was the first time i had a moment to myself whilst living with him for 6 months (outside of chores + prepping + organising)

* Grateful that the government & support agencies provide support

* Grateful to be in a position to move back home and care from afar.

Well said, very well said. I loved the part about about telling friends you will talk when ready, not to ask questions and if they want to do something - feed you :-)

And gratitude - always.

Sue

Hi Kempy,

Your blog is brilliant. Would you be ok if I shared it though the Stroke Foundation social media channels: Facebook, twitter and Linkedin?

I think it could benefit a lot of people to read it.

Diana

Hi Diana,

Thank you :) and absolutely welcome to share. Fingers crossed it helps just one person who's going through the rough stuff right now as a carer.

Thank you, I will post the link here when I publish it. I really appreciate this!

Hi Diana

Loved the post, it's been 4 years since my wife had her Aneurysm on a cruise ship, 6 hours from port in rough seas at 4 in the morning. she spent 1 week in hospital in China, 5 weeks in Hong Kong and then came back home here to Perth. All up it took 2 years before she could come home, lucky I had a cat for company at night. He'd curl up next to me in bed. I agree that if you don't get what you need from doctors and the system generally you need to push or else you will be left behind by staff and specialists who are so over worked and under resourced. And yes document EVERYTHING. So much of what you've written is so true. I was tired , stressed, sleep deprived and for a while not eating properly I lost 6 kilos in 5 weeks. friends and family are so important and so is having a well organised daily schedule. This has been a life changing experience for all of us. But I am so grateful for the life we have been given at the end of it all my wife is home and the light of my life. As you have mentioned it is important to remember and be grateful for what you have.

Many thanks

Joe

Hey Joe,

I imagine that was a very traumatic time for you both, being apart and at the time having a stroke on a cruise ship. I really feel for you.

It was Kempy that wrote the blog. You can reach out to them here

I agree, I think the blog was brilliant. You also find this video great too from Julie.

How are you and your wife going now?

Thanks Diana

We have settled into our new lives and routine enjoying the many blessings we have been given despite this illness. I have much to be grateful for and hope that others going through this will take some comfort that whatever you are facing there is light and much life at the end of the tunnel.

Cheers

Joe