Today started early as always, although a little bit earlier than usual as it was just gone 5am and not 6am like it usually is.
Hubby had been lying awake for around an hour and couldn't take much more so had managed to sit up on the edge of the bed. His moving about is my signal to get up which I do as he can't do anything more other than sit on the edge of the bed by himself.
I pop the bedroom light on and nip to the loo then come back to help him change into a fresh incontinence pants and clean trousers & put his slippers on.
It's a struggle for both of us as he is very unsteady on his feet (he uses a zimmer frame) and I have my own long term health issues. I've got neuropathy in my fingers so grasping or holding stuff is hard so pulling up elasticated pants whilst sitting beside him on the edge of the bed is tricky especially as I try not to pull him over.
Once he's dressed he makes his way slowly across the hallway into the living room to his chair and sits down. Meanwhile I pop the kettle on to fill his hot water bottle ( and make myself a hot & strong coffee!) I get him settled in with his hot water bottle and cover him with his blanket.
Then I go back to the bedroom and put on my compression stockings, which again is a struggle but they need to go on before my legs start swelling due to the lymphoedema.
Once thats done I settle down in my chair to drink my now slightly cooler coffee. He usually wants a wee then, once his system has started to wake up so I have to help him do that. He could just do it in the incontinence pants but that means sitting in them all day and thats not a good idea so he uses a urine bottle which I then empty down the loo.
We both doze on and off until around 8.30am when the carer arrives to apply his cream to his feet & put his socks & boots on. I can't bend down to do it due to my hernia.
On a Monday, Wednesday & Friday he gets a quick top body wash from the carer aswell. So that entails a bowl of warm water, a flannel, some shower gel and a towel whilst he sits and gets a wash over.
After the carer leaves, its then time for breakfast and another coffee!!
He then sits and dozes for a while. On Wednesdays the district nurse comes out to check the blisters on his legs that came up due to the compression stockings he was wearing. Its been around 6 weeks now since he's been able to wear any and the swelling is still quite bad in his legs which is adding to his immobility. Today they said the blisters had healed ok so he's ok to wear new compression stockings so fingers crossed these won't rub and create more blisters.
The time between breakfast and lunch is spent dozing & doing a few exercises to help strengthen his muscles. It's a long slow process & very frustrating for hubby as he is used to being so active.
Just before lunch he took a slow shuffle on his zimmer frame across the living room to his other armchair for a change of scenery!
After lunch, which today was homemade quiche, boiled potatoes & stemaed brocolli, another wee nap and then it was time to manoeuvre himself into place to use the commode which unfortunately sits infront of the fireplace. I pull the blinds down to give him some privacy & once he is in place I have to lift the commode & place it behind him so he can sit on it. After he has done his business I place the lid on the commode, move it out of the way and then pull up his incontinence pants & trousers as he can't do it himself.
Whilst he shuffles around to sit down in his chair, I go into the bathroom to empty the commode pan and wash & disinfect it and spray disinfect in the living room.
It's not pleasant having the commode in the living room & I'm always concious of any lingering smells but we have to do what we have to do. It's feels degrading both for me & for hubby; he hates having to rely on me to do it for him & I hate having to do it.
Once he is cleaned up and back in his chair, with a fresh hot water bottle and covered with his blanket he has another nap.
He dozes on & off throughout the day as he doesn't sleep much at night, rarely spending more than 6 hours in bed although he only sleeps for about 4 hours.
Whilst he sleeps I potter about, sorting out washing, doing the washing up etc.
Throughout the day there will be frequent hot water bottle refills, and similarly frequent wee's in the urine bottle.
Tea time is around 5.30pm & we settle down to listen to some podcasts or youtube videos before the evening carer comes around 7.45pm to take his boots & socks off.
The rest of the evening is a mix of naps, wee's, hot water bottle refills & the occasional bit of chocolate as a wee treat.
A final use of the commode takes place around 11.30pm before its time for bed.
Then we have to remove his trousers, change his incontinence pants & put his shorts on and then its time to manoeuvre into bed.
Lights out around 12.15am and then around 6am we do it all again.
This is a typical day here and has been like this for over 2 years now. We had a meeting with the care manager a couple of days ago asking for extra help but it obviously has to go through social services so who knows how long that will take or even if it will get approved.
It is a real struggle for me to manage as my own health issues are getting worse but its also a struggle for hubby having to rely on me.
For Context - hubby is neurodiverse & has hypermobility. He suffered with a very bad UTI almost 3 years ago which resulted in him having several falls. He ended up in hospital where he was then diagnosed with Parkinsons.
I have several long term health issues as a result of cancer treatment over 15 years ago, including bowel issues, lymphoedema & neuropathy. I was also diagnosed with AFib ( a heart condition) & type 2 diabetes 4 years ago. I have been housebound for over 5 years.
This blog post is just a small glimpse into our daily struggle. It's not done for sympathy just to raise awareness of what unpaid carers up and down the country have to deal with.
I know there will those whose struggle is far worse than ours & my heart goes out to them.
We all deserve better. We deserve more support and those we care for also deserve more help & support.
We do what we do because we love those we care for but we also deserve much more respect & support.
It's hard going from being a wife of over 40 years to a full time carer. My life now completely revolves around looking after hubby.
If you've read this far then thank you. I hope you never find yourself in this situation but knowing how bad the care system is in the UK these days, chances are you probably will do.
