My dad is 76 and has corticobasel degeneration. For the past 9 weeks he has not slept for more than an hour, day or night. He has been agitated and delirious for the entire time causing him to lose over 20kg with his constant movement 24 hours a day. He has been in a rehab type hospital since the end of July trying to get it under control. So far he has been given melatonin which had no effect, and Quetiapine on a low dose which has seemed to help a tiny bit. He certainly seems less agitated whilst in his bed through the day. Has anyone out there with CBD, or cared for someone with CBD, had this experience of agitation and/or delirium? If so, do you have any ideas on how to help??
His mobility is also getting worse and the CBD now has frontal lobe involvement which is confronting and challenging. If they can get the agitation under control and get him sleeping again at night he would be able to go home with a care plan and mum's help. If not, we will have to consider a nursing home which is a depressing thought. We have been to visit a lot of them in our area and they all have that distinct smell of urine - why do they have carpet in the bedrooms? It makes no sense...
Anyhoo, any ideas/help/advice would be much appreciated.
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Catski78
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Hi, my mum has CBD and we have been through this. The only main difference is my mum has no mobility at all and is totally bedbound/has double incontinence so we haven’t had to work with this alongside mobility. Since mum has been on anxiety drugs and tranquilliser type drugs this has got a lot better and really helped sleep pattern and agitation. Hallucinations and delirium exist still. Delirium is worse when there is a UTI (which is regular due to catheter). Mums frontal lobal issues are getting worse sadly which includes hallucinations, engaging in conversation about people/objects being in the room is the norm now. Conversations are very random and mixed up/confused which we have had to accept are part of the deterioration. We have the help and support of a local hospice and have hospice at home. There is no doubt a live in hospice/nursing home will be a decision at some point but we have agreed as a family that will be when mum stops recognises us which we cling onto at the moment. It’s an incredibly distressing journey so my thoughts are with you.
It’s definitely a distressing journey. It’s so hard to watch your loved one change so dramatically. In a way I think dads condition had been cruising along at the same rate for a long time and then 9 weeks ago things took a dramatic change for the worse with his frontal lobe now being severely affected. Along with the agitation and delirium he has lost all inhibitions. He no longer likes to wear clothes and we often visit him (he’s still in rehab hospital) and he’s naked under his cover or just in a nappy. It’s awful as he was a very proud man. He doesn’t have dementia yet which is at least something to hold onto. I just hope he can get back home but if they can’t get him sleeping again through the night and on top of the agitation through the day there would be no alternative but a nursing home. Although that too maybe difficult as at the moment he is very high needs with 24hr observation. To be honest I’m not sure a nursing home could cope with it. He can get up to the bathroom 20 times in a couple of hours. It’s not that he needs to go it’s as if he’s in a loop that he can’t get out of. Meal times are very challenging. We give him a spoonful of food then he stands up, goes to the bathroom, sits on the shower chair, stands up, goes to the toilet, takes of his pants, sits down, stands up, we help him with his pants, he goes back to his chair, give him another spoonful of food and the cycle starts again until he finishes his meal. If we weren’t there I’m not sure the staff would have the patience. He also has a default answer of no to everything he’s asked. So I had to write a message to the staff which is displayed asking them not to ask closed questions as he wasn’t being washed, given meals or medications as he was saying no to everything. Basic care you’d think 🙄! Now that he’s been there for so long the staff understand him a lot more. It’s hard as he has limited speech and his mobility is getting worse, when I say he goes to the bathroom it’s very unsteady on his feet and he’s shuffling. He’s had falls but he refuses help and aids. Gosh sorry I’ve gone off on a bit of a tangent 😬!
Who would have thought life could through this hideous illness at anyone, especially good people. It’s really not fair!
Take care of yourself, my thoughts are also with you and your family x
it is so distressing, particularly when your loved one was an active, proud and fully involved wife, mum, grandmother. I am lying in the bed next to mum as I type this, when mums diagnosis came through my parents moved down the road from me (270 mile move). Mum declined in a year very quickly so me being close has been reassuring for me and support for dad. My husband is very supportive of me spending a lot of time here after work and at weekends. We have carers 3 times a day to help us. With mum being bed bound and unable to move most of her body we don’t have the challenges you face. Thinking of you and your family during this very upsetting and devastating time.
Hi, Catski78. I'm new to this forum and just saw your post regarding your dad's CBD, delirium, and not sleeping! I am experiencing this now with my husband and I'm about to lose my mind with no sleep and his roaming around all night long and not sleeping day or night. I am at a breaking point and looking at respite care for me and/or assisted living for him. I see that you posted your comment 4 months ago and it's now January 2023. Do you mind if I ask what finally happened with your dad? Was he able to go home or did he need more intensive care? I do hope things improved for you, your dad and your mum.
Hi COcaregiver, I replied to your message but think I didn’t actually hit reply and just added it to my initial post. See below for what I’d written, I hope it helps.
I’m so sorry you’re husband is experiencing agitation/delirium and you are having to deal with it 😢. It really is distressing for them, confronting for you and his loved ones, but most of all it’s exhausting.
For us, dad is still in the hospital. After 2 failed admissions in July the doctors finally realised his agitation was not something that could be managed at home so kept him in. He was moved to the ‘rehab’ hospital almost straight away where he had 1:1 observation 24hrs a day and has been there ever since. They started him slowly back on Madopar as he’d just been taken off it and they weren’t sure if that was what was triggering the agitation but that didn’t help. They then slowly took him off that and started him slowly on quetiapine. This did seem to help slightly but not enough to keep him on it. They then slowly took him off that and tried a Rivastigmine patch applied daily which definitely has helped. The fact it was a patch was also a relief as he hated taking pills. The time frame of all the trials with medications was painfully slow and awful to watch, as he got zero sleep and was loosing weight due to constant movement and little calories, it took about 6-8weeks. They said they do that to be sure what was and wasn’t working. In September dads health took a real turn for the worse when he started to retain urine and ended up with an acute kidney injury. He was basically unconscious for 5 days and treated with iv antibiotics which cleared it up but it took an awful lot out of him. One thing it did help with was that his agitation hasn’t been as bad since. It’s so hard to tell whether it’s been the Rivastigmine, the infection, or a combination of both that helped. It’s not gone completely but he certainly doesn’t require 1:1 observation any more and he doesn’t try and get up every 2 minutes. He’s also been catheterised which again helps as he doesn’t feel he needs to pee all the time. He is also on a bowel regimen to keep him regular as he definitely gets more agitated if he hasn’t had a bowel movement regularly. He can still walk albeit slowly shuffling and refuses any aids and only accepts minimal help. The times he has got up himself to go he’s had nasty falls resulting in black eyes, cuts and bruises - and also gives the nurses/carers a heart attack. He is bed bound from choice as he likes to lie flat on the bed, normally without a pillow. We sit him up to feed him (he can no longer do this himself). He hates to wear clothes so only has shorts on, and doesn’t like being touched, which all started from when the agitation began. The communication is the worst part. He’s getting harder and harder to understand. He hasn’t been able to use sentences now for a few months. Some things are easy to understand ‘no’ being his favourite word 🤣.
The next step for dad has been a very traumatic decision, especially for mum. There has been many tears and sleepless nights trying to sort a way to get him back home. But with support from both myself, my brother and the hospitals medical team, it was decided that dad will go to a nursing home that can provide 24hr nursing care. It is the most soul destroying decision to make but it’s not only in dad’s best interest but for mum too. What she was like when dad was at home compared to what she is like now getting proper sleep every night and knowing he is being properly cared for is chalk and cheese. The last couple of months dad’s been on waiting lists for homes so that’s why he’s still where he is. We are so fortunate that the medical team are on our side and not in a rush to get rid of him.
I know there’s not much good news in there for you. I really hope your husband gets the help he needs. We had to fight for it, and I mean fight!! The first 2 admissions to hospital where they checked him for anything that may be causing the agitation were awful. They couldn’t find anything so it was like goodbye and good luck. My poor mum was, I’m sure, exactly like you, completely at her wits end, exhausted and feeling very alone! It was only after the 2nd return home that the hospital provided mum with an OT who came to assess dad over 2 days and couldn’t believe her eyes at how bad dad was. She really helped get him back in hospital and have our concerns listened too.
Unfortunately I think the agitation in patients with CBD or PSP is just part of their declining condition and it’s heartbreaking 💔
I really hope you also get the help you need and are able to get either respite and/or a long term option in place sooner rather than later. It’s so hard but be kind to yourself 💐
Thank you so much for this report on your dad. What a difficult challenge this has been for everyone in your family. It must be such a relief to know that he's safe and in good hands now and your mum can take care of herself as well.
I'm still doing research and working on what's best for my husband and me. He has actually slept the last two nights and so have I! That makes for some clearer thinking on my part. I just wish I knew what triggers the agitation and sleeplessness. It seems that 24/7 in-home care or nursing home care is out of the question right now as everywhere here in Colorado is "full up" with a long waiting list. Still, I am going to get my husband on one of those lists!
I've been told by American friends who lived for several years in the U.K. that your medical system is far more responsive to patient's needs than here in the U.S. I don't know if that's true, but our system almost seems broken and is terribly overloaded, especially now. Add to that the fact that CBD is so rare that most medical and support professionals don't even know about it or how to address the needs of caregivers.
Again, thank you so much for this update on your dad's condition. It has given me more information that will help with the decisions I have to make. I wish you and your family the very best and hope that there are times of rest and comfort for you.
No need to apologise, I’m in Australia but my dad and the rest of my family are in Scotland. I went home for a month to help mum in July when dad’s agitation kicked off. And we’ve just got back to Australia after a month over Christmas and New Year, it’s most probably dad’s last one and it was very sad saying goodbye not knowing when or if I’ll see him again 😭! We missed spending time with them over the last 3 years due to covid and travel restrictions, I’m just glad I could go back when it was needed most, although not seeing him over his last 3 ‘good’ years feels unfair. They used to visit every year and were actually booked to come to us in August but then the downward spiral happened and that was it 😢. Anyhoo, I should count my lucky stars as there would have been so many people all over the world who couldn’t travel during the end of their loved ones lives due to covid.
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