Barry had UTI which may / or may not have set off the new normal.
He is now bedridden and double incontinent which posses a new life of bed baths, changing linen, avoiding bed sores etc! ( for those who have been here already, you have my utmost respect )
He is on a palliative diet and getting much needed liquids via mouth syringe.
Sleeping on side only, as his tongue is far back and he gasps for breath.
Dr prescribed morphine patches to relax his throat.
On Thursday Dr assessed he was in a coma. On Friday he came out of coma.
Dr now calls him " Lazarus "
The past 24 hours he has been sleeping peacefully ... better than he has in 3 years.
We are giving lots of water and today he had a few spoons of custard.
Family are alternating at his bedside.
We wait to see what tomorrow brings.
Love to you all, as the struggle continues.
Althea 💛🙏
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Althea-c
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Althea, you have my sympathies as the new normal settles in. Just keep doing your best and showing your love. We all know it's hard and having been there, you have my utmost respect for keeping going.
Hubby almost at the same stage. great difficulty getting him to swallow as holding fluids in his mouth. Feel so bad when bed bathed as he is so fragile and weak his bones protrude and I worry constantly about bedsores. Thinking of you. Love Jx
Hello althea. PSP is such a rollercoaster and unfortunately always going the wrong way. It sounds like you are doing a wonderful job. Sounds funny but Barry is a lucky man having you by his side loving and caring for him. God bless. Marie
Barry sounds as though he is calm and peaceful surrounded by a loving caring family . Whilst it must be so very hard for you it sounds as though you have created a little of oasis for Barry.
I'm sorry that you've come to this stage. My mum has also been at this stage since the summer, sleeping nearly 24hrs. Please make sure you have an alternating air mattress and still turn him to minimise the risk of bedsores. It's hard seeing a loved one like this, make sure you have support from family.
Althea I am so very sorry. My husband was in a coma and like your he wokje up much to everyone's amazement. It is such a stressful and heartbreaking time. Words just aren't enough.
Sending love at support to you all Althea, this disease always has some trump card up its sleeve to test us yet again. He's a lucky man have a loving and caring family in his time of need.
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Finding things difficult.
Filled with great sadness. I am no longer able to care for my lovely hubby and he is now in a nursing home. A very difficult decision.
I'm feeling very sad today :(
