I’m at a loss, Rick was walking three days ago and now can’t stand without help. He fill on Saturday and hit his face and I area. Know he won’t stand up straight, he bends at the waist. He can hardly talk and when he does it’s hard to understand him.
Last night I listen to him having a hard time remembering to swallow his spit and choking on it. This morning I ask him if he wanted to go to the bathroom and at first he had this blank stare. Then a few minutes later he showed me that he wanted to. This was the first time I had to help him out of bed and into the wheelchair . Then he had to struggle to stand up to go the bathroom.
I put in my paperwork to retire but I still have to work half days until February 28th. I’m so worried something will happen while I’m at work.
Thanks for listening and God bless you all.
10 Replies
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Hi Penny... Mom was the same with falls, swallowing & blank stares... very upsetting for everyone. Sure wish you both the best as you do your best dealing with the many changes Rick is going through. Sending hugs... Granni B
Hey Penny you poor thing can you get someone in to watch rik while you’re at work or take sick leave ? It’s too much you’re only human please don’t put yourself through all that stress you don’t know what you are coming home to my friend Honestly try and work something out for your own sake
Take care
My husband doesn’t fall anymore as he can’t walk he’s in the wheelchair the recliner chair or the bed in some ways it’s easier but can’t really leave him in case he chokes on his own sulivia
Hi Penny So sorry to hear of your troubles. Yes, I have been where you are!My hubby suddenly lost use of his back muscles and could not sit up or hold himself upright. Before that he was weak but had not fallen, and had a history of pain in his back among other things.
My solution at the time was to ring his doctor who had him admitted to hospital under urgency to check what was causing the sudden change. Hubby continued the downward trend. Hospital care was not ideal but we had no wheelchair shower or other facilities at home.
You can read hubby's journey if you long press my smiley face.
I realise hospital admission is not the ideal with Covid everywhere. Can you get some assistance under urgency through your GP? Or a caregiver that you pay for, for the time being? Again, still not ideal, but if you note a continued downward trend - or increase in new symptoms - then you may need to consider this. Is there perhaps a family relative or friend who could step in during the day while you work? Or is there a day respite care facility he might go for activities and contact with others.
Rick probably won't think it necessary, or will object - as my hubby did. But if his path follows the speed of my hubby's, it will become essential and that will become obvious as time goes on .
I understand there is a fast paced type of CBD which I believe my husband had- and I based my concerns on the speed at which new symptoms revealed themselves. Posts from Robin Riddle may have some pertinent information on speed of progression and a name.
What I found very frustrating was how slowly the wheels of action moved. I would ask for something but it could be a week before it happened and often we were facing another challenge by then.
When the doctors don't fully understand the disease then "progress" and treatment can be frustrating.
Be assured you are not alone in fighting this disease. Get the CBD sheet that is available on this site and thrust it at any who don't fully understand and stand your ground!
If you can take leave, then do so as your presence beside Rick will be increasingly important! Time will tell - any maybe sooner rather than later.
I have little to say for getting funding, except to point to a great deal of info from Kevin1 and his past valuable notes. I dont live in the UK.
My thoughts and prayers are with you! I am afraid I can be of little help, except to urge you to get help.
Chris had many falls resulting in varying injuries to head and face. But as a result of these we had regular visits fron our District Nurses who applied for CHC funding so that we could have additional carers in. As his condition deteriorated so they applied for extra hours or carers. We ended up with two four times a day.
With regard to Rick's sudden deterioration, this is not unusual but have you thought there might be an underlying infection, UTI perhaps? Chris often deteriorated before other symptoms became evident.
Excess saliva was dealt with by using Sea sickness patches which were prescribed and most effective.
I hope these hints help, our journey ended last Christmas.
I had a similar experience. My husband went to bed one night and was walking with a walking stick. When he woke up the next morning, he could not stand without assistance and he couldn’t walk. I got him in the wheelchair and took him to the ER. They checked him for head injury and bladder infection, both were negative. He has never walked again. It can be very distressing when it happens. Sending you warm hugs.
Sounds similar to our experience! Took hubby to ER and he was unable to return home again. Have just gone through replies to your first post and found a lot of very relevant advice for Hidden from both carers and some with CBD.
My thoughts are with you all! Covid must make EVERYTHING even more of a challenge!
This progression sounds similar to my Mom, although she had PSP not CBD. Things would on even keel for awhile, then there would be a sudden drop-off. Have you looked into in-home hospice care? Hospice of the Chesapeake were very helpful during my mother's final months.
My experience says you need to have someone with Rick when you can't be there. It doesn't sound like it's safe for him to be alone anymore. It was a hard pill to swallow when we reached that point. I wish you well.
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Chair dancing..
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He asked the question 
