My dad has CBD and has over the past 5 months gone from 86kg to 57kg so is a poor soul. He’s been in hospital for most of that time (he’s still there) as he was suffering from agitation and delirium which has been more under control since being put on Rivastigmine patch - which took a long time to get under control with different medications being trialled etc.
His weight is a huge concern. He can still thankfully swallow but will often refuse food. He gets 3 supplemental drinks (ensure) a day but the weight keeps dropping. There was talk of something being added to his food to increase calories, has anyone tried anything like that? If so, what was it and did it change the taste of the food? Dad is fussy enough as it is and hates taking medication so if he thinks there’s something been added to his food he might think it’s some sort of medication and refuse to eat it - he’s a complex character is my dad 🤣!
He has a sweet tooth so generally eats puddings, cake, sweeties, etc without a bother. If anyone has any other ideas please let me know 😊
Thanks,
Cat
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Catski78
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My pop was in hospital for several weeks before a resthome. There he suffered from serious delirum and agitation. He was given quetiapine which did not work to be honest. As soon as he got home, the delerium disappeared by 90%. he has not been on any such medication since.
Where is your father at in terms of the CBD. What is the hospital trying to achieve by keeping him there - do they think he will improve?
When my pop was eventually discharged, it was on the basis of a community assessment for a resthome. The hospital tried their best, but I could tell their optimism disspated over his 5 week stay. He went into a resthome, and now the focus is comfort and safety (high risk of falling) He can still swallow as well and if he eats he eats and if he doesn't he doesn't. We are just seeing it as part of his lifes journey.
I know that it does not answer your question - sorry about that. Wishing you all the best.
Dad was diagnosed with Parkinson’s about 3 years ago but at the beginning of this year had it changed to CBD. Now that we know what he has and with research we think that he’s probably had CBD for more like 6 years. As with all CBD diagnoses it’s hard to say where he’s at on his journey. I think he’s near the end but who knows he could kick on for another 12 months or more, which for his sake, I hope not as he has no quality of life as it is.
He was admitted to hospital 18 weeks ago because of the agitation. After ruling out all the reversibles, ie constipation, infection, urine retention etc he was discharged, twice, hoping it would ease his agitation being at home but it didn’t help. It was so bad he couldn’t sit still at all day and night. In the beginning he lost 10kg in 9days 😬. He needed 24hr observation for many many weeks as he’d be getting out of bed and going to the bathroom about 20 times an hour - no exaggeration, it was awful. He didn’t need to toilet it was like he was stuck in a loop. He’d go from bed, to his chair, get up go to the bathroom sit on the shower chair, then get up and go to the toilet, pull down his clothes, stand up, try and get clothes back on, go back to bed, lie there for 5 mins and repeat. All with declining mobility so had a fair few falls. Then he ended up with a kidney injury from a bladder infection, as he had started to retain urine, he was put on antibiotics and recovered but is now far more debilitated and catheterised.
So fast forward to now, he’s still in the hospital. It’s more an in between hospital where people go to rehab from stroke etc before going home. Not that any rehab has been done, but he has had assessments from OT, SALT, physio, nutrition, etc. He’s in the process now of discharge as he’s no longer 24/7 observation. But the big question now is where does he go? He’s in Scotland, my mum lives at home where she had been his carer, my brother and his family live reasonably close and have been amazing, and I’m in Australia so can help with very little 😢, I rushed back at the end of July when the agitation started as mum was beside herself. I was there for a month and it was awful to have to leave. My family and I are going home next week for a month. I would love dad to come home as we’ll be there to help but it won’t help dad in the long term once we leave if mum is left on her own to care for him - it’s a big undertaking. So, we’ve been looking at nursing homes which is a depressing thought. Dad’s capacity has been removed as his CBD has affected his frontal temporal lobe so he can’t make big decisions for his own health. He’s not got dementia as such, he knows who we all are and asks about my boys or his grand daughters often knowing who they are and what they’re up too. It’s difficult to assess what level of understanding he now has of his condition as he has very limited speech and communication is difficult for him. It’s heartbreaking to think he’ll most probably go to a nursing home without any of his own input - it really is the shittest of illnesses!!
Anyhoo, I got really off the beaten track there so apologies for that!!
We are pretty much the same with his eating. If he eats he eats if he doesn’t he doesn’t. I am grateful at this stage that he can still swallow. I was hoping there might have been something out there that would add calories to the food he does eat without changing its taste or texture, just to give him that extra boost. I think we all try and clutch at straws with this stuff though. There’s certainly no textbook on how to manage this hideous disease!!
I wish you well and strength to help your pop and thank you again for reaching out!
Hi Cat, If you take your first paragraph and change CBD to PSP...the same for my father. He was admitted to hospital 24 weeks ago because he fell for no reason. He was there for 5+ weeks and was discharged on the basis he would get assessed for a nursing home. In the two weeks my mum and I took care of him, he would get up about once every 30 min, but he did actually go 90% of the time. Issue was he could not get up himself, so we had to get up to meaning no sleep. It was the straw that broke the camels back, and we had to yell and scream for the assessment to be sped up. Like your dad he could kick on for some time, but I hope not. He has no dementia either, but is often confused about where he is in life.
I dont sugar coat a resthome. It is a place where Dad has staff to help him function and supervise hime 24/7. Even then he still does fall, but nothing serious so far. Sometimes I feel he is not 'watched enough' because I see him with food down his front, or his nappy needs changing. The truth is though, that he could not be home - he is simply to heavy for my mum and that aside she needs to sleep. The other thing is that time spent with him is more just talking and trying to have a laugh, play music. After 5 months now in a resthome, he is actually content there and he does feel safe. The resthome is over the road from my Mum she got a ramp built and we do wheel him home 3-4 hours a week for a couple of hours. Good luck with your journey. Facing the prospect of a resthome is a really difficult to wrestle with and but it is not all bad. Best wishes.
There are no lights at the end of these tunnels for our loved ones and it’s heartbreaking.
I can fully relate to you guys having to kick and scream to get assessment’s done. When dads agitation started and he became unmanageable and needed urgent hospital care we had to fight so hard to get him kept in hospital. He had 2 failed discharges within 9 days and in that time had lost the 10kg which we had to keep pointing out to them as being significant. I had thought that having a rare and complex neurological condition that the doctors (neuro especially) would be jumping at to investigate. I feel now it’s more like, too hard basket and we don’t see enough patients with CBD to bother.
In my head I know a nursing home would be best for dad. In my heart I want him to go home. Mum and my brother met the other day with a company that can help provide in home carers so we’ll see what they say. It doesn’t help that they live in a small village. In the past when I was looking at private nurses to help, they said they don’t service that area. We want to investigate all options however unlikely they may be. Mum is already travelling in and out of the city every day to visit dad (an hour return trip) so she’s used to doing it. I also think she has PTSD from when the agitation first started and she couldn’t get any help - that’s a whole other story! So I think she’s really scared to have him home again. It wouldn’t be the same as before as he’s not mobile enough to be getting up all the time so in a lot of ways he’s a much easier patient, but the other side of that coin is the decline in mobility means when he does need up it’s heavy lifting etc.
How fortunate is your mum to have your dads nursing home just across the street 🥹. I bet all the time they lived there they never thought in a million years that one of them would need to be in there! When your dad fell had he not had any other symptoms? And since then has there been a rapid decline?
Like your Dad, he had a parkinsons diagnosis in July 2019. He was slowing down, but he was 100% independent. He went for a walk every day (unless the weather was really wet), but strong winds would not stop him. He would stop at bus stops along the journey for breaks. This went on till one day in April this year. He got up normally, showered etc, then went into lounge to get his breakfast, and his legs gave away. It was like that day he fell off a cliff. What they noticed in hospital, is that he had no tremor. He got serious delerium in the hospital and was hostile with us. He had to be sedated. It was actually hospital induced delerium because when he was discharged, it all went away. Eventually, they settled on PSP, discharged him - he just deteriorated in the hospital looking back on it - he never returned to his 'normal'. During the two weeks he was home we had carers come in twice a day, but the issue was we couldnt easily time dads needs with their scheduled visits, so it was only really good for showering.
Yes, really good about the resthome being over the road. She visits 3x a day, and he gets a lot of home cooked food. We were lucky the resthome did hospital level care and there was a bed available. The ramp and a few other house modifications means one of us kids can wheel him over which means he does not go stir crazy. I think all of this makes it so much easier to accept that he is in a resthome whereas if he was far away, it would be whole different story.
I fully understand your Mums reluctance. If your Dads agitation was like my fathers delerium that is certainly frightening. She does well to make a 1 hour return trip daily. It sounds like she has a lot of support which is great but it doesnt take away how difficult the disease is to manage.
Gosh it’s crazy how it presents one way with some and one way for others. It’s no wonder it gets misdiagnosed all the time. My dad’s was definitely cognitive failure first which we had all put down to depression, even though he’d tell us all the time he wasn’t depressed. The problem was he didn’t want to converse or socialise with people, he was obviously finding it difficult but probably didn’t understand what was happening to him nor could he convey that to us so we just put it down to depression. With that old chestnut of hindsight we can look at lots of situations and think well that was definitely the CBD kicking in. He also decided a few years back that he wouldn’t drive and he’d always been the driver, but again, none of us clicked that his cognition was deteriorating the way it was. It’s only really been since the delirium/agitation over the last 3 months that his mobility has really started to decline. I can only hope he declines rapidly now as he would hate to see himself as he is now 😢!
All of us on this forum are connected by the most horrific disease that you wouldn’t wish on your worst enemy, be it CBD or PSP. But I must say it is nice to be able to share thoughts and feelings with those going through the same thing - thank you 😊
Are there any rich & creamy desserts you could give him? I remember when Mum was at this stage we supplemented the nutrional drinks with rich & creamy desserts - the dietician said she couldn't actually prescribe anything which was more energy dense and was quite happy for us to give them - they did a range of flavours - lemon, chocolate, etc. Have a look at your supermarket premium dessert section.
Hi AJK2001, as he’s in hospital he gets a pudding or desert every day which he always tends to eat, and thankfully they give him a big portion or even 2, especially when he hasn’t touched his other food. He’s been through all the different flavours of ensure drinks and seems to tolerate most of them. He’s on 3 a day, mums a bit worried any more and he’ll really start to get sick of them and refuse to drink it. She also takes things from home and store bought treats and will often eat them, although mum gave him a chocolate log today and he ate half and said he didn’t like it - they used to be a favourite 😢. Anyhoo, I’m just grateful that he is still able to swallow, mum thought that recently he had been having trouble but the SALT assessment said he was ok.
Hi, my mum has CBD and I can relate to pretty much everything you have written. Mum is at home with the support of local hospice at home and 3 carers a day, Dad is main carer and I’m 10 mins drive away. Mum has lost so much weight over a short period of time. Mum can still swallow so still enjoys food but no matter how much she eats which is typically a breakfast, lunch and dinner with ice cream, cake and small chocolates in between she doesn’t put weight on and is so skin and bone. Mum has small portions but still a reasonable appetite. We were advised to add a replacement meal drink each day - sipping on it throughout the day. Not convinced it will make any difference. I suspect mum’s body just can’t absorb things properly now and this is what is causing the weight loss (although no one medical has said that). We jus
(continued as accidentally pressed reply)….we work on the basis of giving mum as much sweet and sugary things (fattening things) that we spend all our lives avoiding. We keep our fingers crossed that mum will keep eating and keeps her swallow for as long as possible. Hope this helps??
Hmmmm very interesting bichonbear1, maybe this is just another crappy part of CBD that they don’t absorb food the same way anymore. You know what it would be like if we ate the same amount of calories with limited mobility, we would definitely have weight gain. Last week for instance, dad ate well. Mostly 3 meals a day with 2-3 ensure drinks for added calories and still had a weight loss. Now with mainly being bed ridden it doesn’t make sense to have a weight loss but he did. It made total sense when he was agitated for 24hrs a day and was off his food eating very little. Just another way this disease is killing them off?? 😤😭
That’s the only way I can rationalise it….it’s so cruel in many ways. It is my mums birthday today, she is 69, I am rejoicing a little inside as I didn’t think she would make it but it’s unbearable to see my mum contending with the cruelty of it all 😔
Happy Birthday to your mum 🎂! Dad was 76 on the 9th October and we were the same, happy for him to make it but hoping that would be his last - bloody awful thinking like that isn’t it 😢! It really is so cruel!
Hi, my mum has CBD and is currently in hospital. Similar story to others, she was diagnosed with Parkinsons initially but is now in the latter stage with deteriorating swallow and 4 choking episodes. SALT have put her on puree diet but she still has a good appetite. She has always had a sweet tooth and I melt Lindt chocolates in her rice pudding! It seems to make her smile, and she's just had her 73rd birthday, every smile/giggle means the world to me as her speech and mobility have both deteriorated. She requires full assistance with feeding which I spend hours on, chatting nonsense and giving her time to swallow and digest safely.
She still has a sense of humour and knows who we both are which I'm grateful for with this cruel, cruel illness. Similar to you, my sister is overseas in Australia and finds it very hard, she managed to visit last month. Mum has been in a nursing home for 4 months now and it has lightened the load on the family caring, we can now love and care as daughters. There are some good nursing homes out there, but they took some finding and hers is 30 mins away so not exactly on the doorstep. Mum has now been Fast Tracked for additional funding, but we face difficult decisions regarding advance care planning and whether future hospital admissions are within her best interest. She has the anticipatory medications prescribed for end-of-life treatment when required. The hospice and admiral nurse are involved for support, but I am not looking forward to the coming weeks/month ...
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