On the 14th October 2021, after 5 weeks bed bound in hospital, due to my “acute” spinal collapse and bone disease progression, I was finally allowed home.
I was sent home via ambulance as my condition hadn’t improved. I still couldn’t sit or stand for more than 2 minutes at a time. Walking with a walker was limited to 40 or 60 metres, only when pain meds were at their optimum.
Upon discharge, I was amd still am completely dependent for all my personal needs. Bed baths, assistance with toileting, all meals need preparing, not even my joy of making a cup of tea is afforded me.
I am still bedbound. My pain levels range from excruciating to extremely painful despite incredibly strong pain medication.
This is a massive challenge, both physically and mentally.
I was only allowed home under the Hospital Rehab at Home program. Also, discharge was approved, only with the proviso I call my Pain Management Specialist the moment my husband and I can’t cope. I will be immediately sent to the Hospital Rehabilitation unit via ambulance if this happens.
What Happened to Home Sweet Home?
The ambulance ride home from the hospital was one of the bumpiest rides ever. My spine felt every ditch, every road bump, every crack.
On top of the pain, I also had a full bladder and I had no idea how I was going to empty it. Up until hospital discharge I’d had a catheter but I didn’t want one at home. I wanted to have freedom of movement and we had ordered female urinals which could be used lying down, so we thought we were well prepared.
Trial and error is the best way to describe our attempts of managing my bladder the first few days. Eventually through sheer grit and determination I managed to shuffle to the ensuite with my walker and, with my husband’s help, squat over the toilet and quickly get back to the bed to collapse flat. It was such an exhausting experience but also something of a milestone as I couldn’t achieve this in hospital.
Bed baths also became trial and error but, with the help of a lovely Registered Nurse who visited us at home the day after discharge, we were given some amazing tips to quickly master this daily care need.
After a few really rough nights with pain out of control, and sleep avoiding us, we were both feeling so overwhelmed by our new circumstances.
“Home Sweet Home” was becoming more like the “House of Horrors”.
My husband was really struggling with the intensity of care needed, so two days ago we had an honest chat about me perhaps needing to go back to hospital now. Chronic care is one thing but acute care is quite another. So much work for him.
We decided we will give it one more week and see if the carers do lessen his load and provide me with the support I need. If we are still struggling in a week we have agreed I’ll make the call to my Specialist and go back to hospital or Rehab.
Encouragement Is A Beautiful Thing
Throughout my life, time and time again I have found when I’m at the end of my own resources and I can do no more than pray and leave the situation in God’s hands, an answer to my cry is just around the corner.
Only a few hours after my husband and I discussed the very real option of me returning to hospital, we had two encouraging signs leading us to believe home was in fact “home sweet home” after all.
In the midst of our distress, our neighbour saw my FB post on my personal page. She immediately private messaged me and said to let her and her husband know what they can do to help us. They are a lovely couple and we knew their offer of help was heartfelt and genuine.
She was messaging me from the shops, which was perfect as they ended up doing some urgent shopping for us (including the most urgent item of all…..chocolate cake of course!) Later in the afternoon her husband came over to help move furniture around in our bedroom, to make life easier for me to function. We can’t thank them enough.
Another neighbour, out of the blue, saw my husband out the front and came over to say she was so happy to come and sit with me to give him a chance to go for a walk or go shopping. She is a retired psychiatric nurse so well used to looking after people and she is lovely. I’ll enjoy getting to know her better.
We live in a special village with a culture of caring for others. I said to my husband we have to learn to accept help. We’ve always been the caregivers to others so it’s hard to have those tables turned. It’s a blessing though when we do let others help.
We have realised, although we might not have family close by, God has placed us in an amazing community where people genuinely care and look out for others when they are in need.
You will be secure, because there is hope; you will look about you and take your rest in safety. You will lie down, with no one to make you afraid, and many will court your favour.Job 11v 18 – 19
We finally feel a strong sense of peace and hope, believing we’ll be able to get through this critical stage of recovery, or at least adjust to our new norm.
Another FB friend shared her story of when she and her husband were in a similar situation, it took them 6 weeks to find a rythm. They were beside themselves for the first few weeks, even with carers helping, but bit by bit life normalised.
We are feeling there is hope.
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!