A Day In Our Life of Alzhiemers
We’ve had a terrible night, the night before last.
Lots of hail, another power outage, etc.
Then my husband decided his catheter drain switch wasn’t working, so he put a bulldog clip on the end of the tube.
I rang the ambulance, and they came out and said it was working. Hospital ERs were maxed so they wouldn’t take him. He needed to be in hospital.
When they left, he put the bulldog clip on the end of the tube again. I didn’t know what to do.
I rang my carers agency at 9pm and they sent a carer for me overnight from 10pm to 6am. She was so lovely. It’s all such a mess though and I’m exhausted.
Unfortunately, my husband was so bad he verbally abused the overnight carer. She handled it so well. This is not him. He is such a loving caring man. It breaks my heart.
I finally managed to get a continence nurse to visit the following afternoon.
He was so good. We have a day and night system now. There was nothing wrong with his other bag but the Alzheimer’s disease wouldn’t allow my husband to agree with that, The nurse put a new bag and drainage clip on and tha thankfully settled the situation…for a while.
Peter was in a better frame of mind yesterday thank goodness.
I got 1 hour of sleep over 48 hours…it’s definitely been crazy!
Genesis 9:12-17 MSG
I’m putting my rainbow in the clouds, a sign of the covenant between me and the Earth.
From now on, when I form a cloud over the Earth and the rainbow appears in the cloud, I’ll remember my covenant between me and you and everything living, that never again will floodwaters destroy all life.
For me, a rainbow has always represented happiness, feelings of togetherness and hope, a promise all will be well even if you feel like you’re drowning, and we have often seen them in the sky when we started new and positive chapters in our lives.
So why does the rainbow come to my mind when I muse about our Alzhiemers journey?
I think because underneath our chaos, confusion and multiple changes, we are still hopeful of creating a new life, still in love and still confident that God will give us the strength and courage to get through this.
Our Alzhiemers Rainbow
If the Rainbow was an Alzhiemers Acronym, this is what ours would look like:
- R – Realisation, research, reordering life,
- A – Anger, acceptance, advocacy,.
- I – Insights, Ideas, information overload
- N – Neurologists, navigating change, nursing home.
- B – Battling bureaucracy, bravery, beauty.
- O – Occupational therapists, organisations, options and opportunities, overcoming fear, overtired.
- W- Work in progress, wear work, worry, weakness, warrior, wonder, weeping.
How Do We Get Through This?
Oh how I wish I could pull out my tips and ideas list as I’ve always done.
Not this time. This is too hard, too confronting and consuming.
It’s 4.30am as I write this blog. The house is dark and quiet. I’m in bed so I can be with my husband, who is fast asleep, oblivious to my fears and concerns. I can hear his gentle breathing, and that brings me comfort….until the snoring starts of course!
I’ll watch the sunrise soon, and that brings me joy. My bedroom window offers beautiful sky views, allowing me to escape the realities of our challenges within these four walls.
Our beautiful garden provides the same kind of relief from our living room windows. It’s an oasis within a desert and it soothes my soul.
All we can do is take one day at a time. I will never know what pattern Alzheimer’s will take from one hour to the next, so a life of organised chaos seems to be our path.
My Own Battle
I have daily carers now as I am completely disabled with my disease now.
Today, we made a huge decision.
My occupational therapist and I have today submitted an application to our Government Disability fund, NDIS, for me to transition asap into permanent residential care (nursing home) with home care provided whilst finding a home placement.
If approved, my husband can also be accommodated in the same home in whatever way that is deemed appropriate for his care needs. The criteria to me doing this is that I’m in wheelchair travel distance to visit him if we can’t co locate.
It’s a huge step. I am so ready for it.
My husband’s not keen, but he wants to be with me, so it’s probably the only way we’ll get him there.
It’s Just Another Adventure
Our lives have always gone from one adventure to another. We are used to change. This is just another one, another chapter.
We’ll be OK
We’ll find a new norm.
If we are feeling a little lost or overwhelmed, we will have a rainbow to remind us of the fact there is hope and we will not drown.
Love, Sam xx 😘
My Medical Musings 