CBD help please

[Greens]

Hi all my Mum has CBD and was diognosed about 3 years ago although think she has had longer until last few weeks we have been able to cope but her behaviour and memory has just taken a massive downward turn and she is not safe to be on her own we are at our witts end to know what we need to do for the best no one seems to be too bothered professionally re the situation

[Marie_14]

I am so sorry to hear this. What part of the world do you live in? That matters a lot as to the kind of help you are entitled to. Your poor Mum will not get better.

So if you have help that is a start. If not you must get some. We can only advise you about what you should do if we know your situation. If you live in the UK there is a lot of help. Do you have carers for example? Has your Mum become so bad that they can't cope? Please let us know.

We are here to help you.

Marie x

[Greens in reply to Marie_14]

Thank you yes we are in uk she has become agitated and doesn’t think she is in her own home one minute she is really horrible next crying like a baby Doctors have prescribed anti depressant but I am not sure whether that is right and help or advise would be good

[Marie_14 in reply to Greens]

Well I am not an expert. My husband had PSP and MSA. So he didn't suffer that way. However there are people on the site who have/had loved ones with CBD. I am sure one of them will add something.

One thing I will say is that a sedative is usually a good idea after you are sure you have all the paperwork in place. Have you searched the posts about CBD? Just do a search and they will appear. Not as many as PSP however. I think perhaps a lot of people with PSP also have CBD due to the symptoms that are mentioned.

My husband was given Sertraline although he didn't need to be calmed down. It seems to be a popular antidepressant to give. Not sure what your loved one has been given? There are other medications too for various symptoms. I am sure others will chip in when they read your post. It is quite common for this to happen which I am sure you know. Sadly it will get worse.

Have you got Power of Autorney in place? That is very important for medical and financial care. Your loved one will need you to make decisions on her behalf. Get it done now before she has another downturn. Sadly that is the way it goes.

Try to see does she want a DNR in place or not. Most seem to say not. Also does she want to be fed artificially or not? Does she want antibiotics if she gets pneumonia? Just a few of the things you need to talk about. It is very difficult so better to do it before she is unable to talk or make sense.

If there are any other questions just post again and someone will answer.

Good luck to you. It is all so very sad and difficult.

Marie x

[raincitygirl]

Hello Greens,

So sorry to hear of your Mom's dx. I care for my husband who has CBD. Dealing with physical disability is hard enough for a carer; looking after someone with behavioural problems is that much worse

Many on this site will tell you to check she hasnt got a UTI starting - it can cause behavioural symptoms. Also, discuss any medications she's on with her doctors.

If all this is stable and your mom is "just" at the point she's losing cognitive ability and starting frontotemporal symptoms (loss of inhibition, inappropriate behaviours) then likely this is CBD progression and you will need to have your local community health authoity assess the home situation for its appropriateness for her. Residential care may be necessary. Or if symptoms dont put her in danger, possibly additional measures in the home can be made to make it safe for her.

As Marie said, do tell us more about where you are. I'm in Canada, so my community info may not be relevent for you.

Anne G.

[raincitygirl in reply to raincitygirl]

I see you're in UK. Will look for more UK members to chime in for you....

[Greens]

Yes we have had blood tests and uti checks and all normal so has got to be the CBD getting worse they have provided the sertreline and we have POA in place . The change has come on so quickly she thinks we have moved her out of her home but we haven’t she has lived there 25 years I am pushing community care to help assess her as she is not safe in her home and have gained some extra care it’s so hard watching her deteriorate

[Dadshelper]

Dad has CBD and the occasional mild hallucination, those started recently and no type of infection has shown up.

Hopefully the assessment will provide some type of care suited to your mom's situation.

Ron

[Spiralsparkle]

My Mum has CBD also and also recently her behaviour and memory have taken a nosedive. We have 4 personal care calls a day, trying to get anymore is a joke. We don't have CHC funding though so I need to get my act together to get that appeal in . Social services aren't bothered about the situation.

I think she needs to change her antidepressant meds also but waiting to hear back from neurologist.

Mums cognition was affected but has changed alot in a quick space of time unfortunately. I don't have any answers for you I'm afraid as in the same boat.

Do you have CHC funding?

[Greens in reply to Spiralsparkle]

It’s a mine field I feel there is no joined up professional help there. They seem to deal with physical but not the mental bits Mum has hallucinations and memory loss yet when doctors arrive she sounds so plausible I will keep u posted as trying to ensure funding also

[Spiralsparkle in reply to Greens]

Yes Mum is same, with professionals and others she can manage to be at her best for that short space of time.

Mum also has hallucinations.

I agree the emotional and mental side is not so well catered for. Are you under Hospice at all for help?

[Kevin_1]

Hi Greens

CBD can bring with it emotional and behavioural disturbance and it can be horrendous in terms of delivering safe, controlled risk, care. It is also distressing to see. to put it mildly.

There are mood stabilisers and anxiolytic as well as sedative medications. However this is a very complex area, way beyond G.P. prescribing.

If you are seeing a local hospital neurologist I would strongly advise you to ask them, or your G.P. for a referral to a Tertiary Neurologist specialising in this field. The complexity of your Mum's case warrants it.

Just in case you don't know the NHS has a specialism pyramid. Primary care is the G.P. and the community clinics and nurses. Then Secondary care with hospitals and specialist community clinics. That's where the 'ordinary' Neurologists work and for really complex stuff the Tertiary layer where you will get a neurologist specialising in CBD. They're the ones you want here.

I hope this helps.

Best to you both

Kevin

[Jdjdjd]

Hello, just wanted to come in and say hi, my husband has CBD, and has been diagnosed for 10 years now, initially they said it was MSA, but after 8 years changed it as CBD has more dementia signs, he was gradually getting worse with mobility, and falling a lot, eventually after 2009 I had to leave my full time job to keep him safe, during this time he has gone through periods of aggression, total personality change, but after a while he reverts back to the man I know and love, we have a carer 3 times a day, and have changed from an agency to using someone who is self employed, and we find that a lot better, even so, you need the patience of a saint, one minute he will say horrible things like, why aren’t you dead yet?the next he can’t remember it and is very sorry, Ian now has to be hoisted in and out of bed and cannon read or write, or feed himself, so is reliant on me for everything, and still no CHC funding!!

The main problem is watching out for infection, chest or UTI, first signs usually are confusion and no interest in anything, food or visitors, it is a minefield, getting it right, Ian has had 6 infections since August, and is susceptible to sepsis and pneumonia, my GP gives me antibiotics to keep in hand, and I can start a course quickly after a phone call to them, I find the OT department very helpful, for equipment, we had a small electric hoist when Ian could weight bear, I could not have survived without it.

It takes time to get assessed for a care package, so you need to be on at social services until they come, and you will be surprised at how helpful they are,just remember to always give the worst case scenario, especially about the mood swings

Good luck, keep posting xx

[raincitygirl in reply to Jdjdjd]

Hi jd; May I ask how old your husband is? 10 years is a surprisingly long time compared to the information out there. My husband has CBD, in 5th year. He's 78.

You sound like a very experienced cbd spouse! Thx for introducing yourself.

Anne G.

[Rowan8831]

It sounds like the normal progression of the disease sadly. My husband has CBD and he has really benefitted from an antidepressant called citalopram. It has helped with the unpleasant behaviour symptoms as the disease has steadily attacked the frontal lobes of his brain. He is always much worse when he is going down with an infection of any kind though.

Good luck - we all know how tough it is for you. Sadly most doctors have never come across this disease before so although they do their best it is difficult. We were lucky to be referred to a really good neurologist who listened.

[Docches]

My sister has CBD /PSP and I care for her. She has had it for 7 years. She can’t talk although sometimes she will say something. She is screaming throughout the day. It is a loud scream and will happen throughout the day.

You are right. It’s such a lonely confusing disease.

[raincitygirl in reply to Docches]

Dear Docches, I looked at your post from 6 months ago: your sister had started a big decline and was screaming then - You said her GP would not prescribe an antidepressant. I am alarmed that this status seems to be continuing. Has her GP not budged on prescribing something to calm her state of mind? I know from my husband's (CBD) neurologist that dementia and hallucinations can be part of some CBD patients' suffering. It is, in my opinion, NOT HUMANE that this should be allowed to continue without any attempt at medical intervention. We know nothing will cure our loved ones: we simply have to help them live as peacefully and with as much dignity as possible. It is also essential that home-carers like yourself are in a tenable situation with such a patient: If you are not a mental health professional, how in the name of all that is holy, are you supposed to deal with that dementia hour in and hour out all day, every day?? The result could be an un-necessary institutionalization for your sister - Is that what the GP wants??

Perhaps I am over-reacting and her GP is now trying to help with anti-depressants, anti-psychotics or other appropriate medications? Please let us know. I am very concerned for YOU!!

Anne G.

[Docches in reply to raincitygirl]

Anne,

Thanks so much for the reply. She has moved in with me in a different city and we have daily help. We have tried several meds and are going to the Mayo Clinic neurologist next week. She has had a UTI which caused agitation and confusion.

The screaming is random like a tic. She says she’s not in pain and isn’t aware of the scream. It just makes it harder to get out not knowing when she will scream.

We are fortunate to be able to keep her at home. I hope to learn more from the neurologist next week about what to expect going forward.

So glad for this site. The UK is much further along with this disease than here in the US.

[raincitygirl in reply to Docches]

Hi Docches;

I'm so glad you will be getting tertiary level neurologist attention at Mayo clinic. It must be so hard to live with such difficult symptoms! God bless you for the commitment to care for your sister at home as long as possible. Do keep in touch and let us know how it goes. I'll be looking for your news

Anne G.

[Mtorres9235 in reply to Docches]

Thanks for sharing your experience. I hope you find the help you need at the Mayo Clinic. My husband has had CBD for over 11-12 years or more depending on when it started before the diagnosis. We have had some help along the way but have struggled through various stages. Still up and walking but communication is not there. Anyway, he is very aware and still continant. I will keep him at home as long as possible because it is the best place for him. Have caregivers who come in 2 times a day. Let us know if they have any ideas.

[raincitygirl in reply to Mtorres9235]

Wow - 11-12 years! You are still the ultimate outliers when it comes to surviving CBD!! I remember my first post to this site was titled "Grateful for Slow Progress with CBD"....I thought hubby had been progressing quite slowly, and yet less than a year later, after a very rapid decline, he was dead.

Keep up the good work guys!

Anne G.

[Docches]

I just read that urea poisoning in the brain will cause screaming. Make sure your mum is drinking enough fluid and make sure she empty’s her bladder. I know that my sister does not go to the bathroom enough.