Trying hard to not weep as I read these sharings. Being at the nursing home with my husband (CBD) isn't a comfortable place to let myself feel.
I miss my best friend. This is so hard yet much worse is to come. I am so grateful for those who share their experience, strength and hope so as things progress, I will realize I am not alone.
Has anyone's loved one experienced combativeness, aggression and hallucinations with CBD? This is becoming a daily problem around 3:00 PM. Nurses are going to ask the doctor to prescribe something for this.
At times it takes 6 or 7 people to change him. Usually it only takes 2 to 3. Because he is moved with a Hoyer lift and his total dependence, it is becoming increasingly more evident that I can't take him home to care for him. Along with this comes the guilt for not doing so.
We, too, had many plans to enjoy life. I get very sad when I see much older couples being together and know that can't be us. That being said, we are blessed as we have had a marriage which I dreamed of. I try to keep that foremost in my mind and try to remain grateful. I miss him!
Liz
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Mikey12345
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Sadly FTD disorders (affecting the frontal lobes) can cause this. CBD is one of those.
Our nursing home manages it with warmth, patience and backing off and giving space, but by being persistent in offering care too.
It has been very effective. My wife is mostly settled now.
The previous nursing home just made it worse.
So my experience is that it can be managed, to a degree, with good care skills.
The only medications I am aware of are strong sedatives or some anti-psychotic meds. such as Quetiapine - which are very deadening and sedative too.
You might ask them to get a consultation with regard to care management before going for the all too easily available sedation.
Have you got a neurologist involved?
Can they send a team member to the home to advise on management?
I can post links for the why's and wherefores of this presentation should you want. However it is what it is and good care management can do a long way to lessening it.
I do hope this helps.
It is a horrible thing.
I hope he, like my wife, has good days and that he can still join in with love.
Warmly
Kevin
P.S. Adding if you are in the U.K. the PSP Assoc. Helpline are very good and they might be able to point you in the right direction with regard to care management input.
Thank you, Kevin, for responding. I agree good care is essential toward keeping Michael calm. He needs to be told what they are going to do before they do it. At least he won't be surprised when he is moved, etc. That being said, this home has both caring and calloused staff. We are private pay and also limited in places that would admit him because of his 2 geriatric/ psychiatric admissions because of this behavior.
Thank you for telling me that CBD can include this behavior. I had not heard that before.
We live in USA, Pennsylvania specifically. I would be interested in any information you could share on this disease.
Michael has a primary neurologist as well as had been in a research study at the University of Pennsylvania until the other day. They sent a person to interview him as an update to his case. However, they had not seen him since his fall and traumatic brain injury in September. His decline had been dramatic since the fall. Before the fall he was walking with a cane, walking upstairs daily, cognitively clear. Now he is none of the above.
He had been in seroquel 25 mg which did nothing.
He does have an occasional good day which I am most grateful for. It tends to help make up for the others.
We are here for each other and sometimes we need to post more.
Yes, we have the mixed carer thing too... I believe it is common. It sounds you are well on top of the issues, so my apologies for assuming it was less so.
There is a bit of a dearth of information. Quite a few technical papers have read merely mention irritability and apathy. Two papers said more work should be done studying this area.
Please remember I am just a guy looking this up. I am so very much not a doctor and so my best advice is to discuss this with you neurologist. They will know the specifics of your husbands case. This is just an overview and some of will not apply to either your husband or CBD even.
The PSP Assoc give this in their information for clinicians:
CBD involves frontal temporal degeneration as well as other areas of the brain being affected. I suspect the degree of FTD will vary and not all of the symptoms listed in these article will apply.
I was discussing this with a senior nurse at Liz's nursing home yesterday. We both agreed that at the end of the day it made little difference. The care needed to respond to the presentation and that's it.
However it helps me enormously in terms of hanging on to Liz as herself and seeing these changes as the illness and not her.
Thanks Kevin_1, Leon has P.S.P. so your reference helps me immensley. Leon's brain is so so good, but everything has let him down. Would like his brain transplanted into me when he passes as mine holds no where near the knowledge his does.
Thanks for all the information you shared, Kevin. I especially like the reminder in the last paragraph that I need to hang onto my loved one and remember it's the disease and not the person when I get frustrated.
Dad is in a nursing home with CBD and has random mild hallucinations. They are nothing really traumatic though..he sees paper laying on the floor, talks to some man that stands in his doorway and once he claimed there was a fire in the room heater area. None of these have happened.
He has never really been combative but argumentative a few times.
Ron, thanks for sharing with me. Michael's hallucinations are generally more violent...being robbed of things we don't own, seeing children being killed or harmed, being confined or harmed himself. Very difficult.
This dear, gentle man has a very loud voice and whistle which he uses frequently scaring the other residents and staff.
Such a challenge for all.
Sure is a devastating disease. Bless anyone touched by this illness.
We've been fortunate no dementia of that type has shown (so far), but I have read past posts from members with this experience. My inexpert guess is that it depends where exactly in the brain the tau proteins are doing their overgrowing thing. For my husband it attacked his speech, almost from the very beginning. (Neuros say speech loss is a symptom down the road, not early on!) He had a number of explosive outbursts in public back in 2013 and I was shocked! I believe now he had begun his loss of language and was confused and frightened (...and maybe lost a bit of inhibition...a possible FT symptom.) Since we've recognized whats happening there haven't been any more outbursts.
What you share though, does point to the importance of his being in safe care. How could you deal with that at home? You couldnt!
Hopefully your love can be shared when it counts, and you can still have good moments together. Yes..it is heartbreaking and unfair. They SO dont deserve this.
Loss of inhibitions...yes. I wish our neurologists could tell me more what to expect but they just say they don't know, that everyone is different. Now that he is stretcher transfer, he won't be seeing his neurologists. They say there is nothing they can offer anyway. The most he'll see is a local neurologist who will know very little if anything about CBD.
I try to show him our love is still there but it's tough since his disease tells him I've moved on which is heartbreaking to think he believes that and he does.
It is just terrible that these wonderful people are struck with this awful disease.
I note your husband also has a brain injury as well as CBD.
My husband had CBD and had more confusion and time lapses than hallucinations. His memories regressed to an earlier period in our lives, and he 'invented' guests at home, or concern for where he would sleep after being told I was going home without him. All I guess a result of confusion and poor thought process.
He did not show aggression, except mildly when I tried to help him eat when his hand froze and he seemed to drop off to sleep!
I wonder how much the aggression is due to CBD, or whether it may be more related to his fall and the brain injury. How long has he been in a care home? Could it be he is aware of his predicament and trying to escape with little hope of doing so? Give him big hugs when he is at his best so that he can be certain you are still there for him.
Sorry you are faced with the dilemma. Sedation seems like a necessity at times.
Hope you can find a satisfactory solution so that you can connect with the loving partner you know is inside!
Jen, so very sad that these wonderful people are stuck with unreal thoughts in their heads and they totally believe them to be true. No amount of explaining helps. I just tell him I know you see that, but I don't or I'm sorry you have that thought in your head. Don't know what else to do.
Michael fell on Sept. 7 and has been in 5 facilities since then, never home since. The brain trauma could very well cause the altered personality but no doctor is sure if his symptoms are trauma or brain disease related.
It's possible he is trying to escape but his delusions are very frequently violent with someone being hurt including himself.
I try to give him hugs whenever possible for both of our benefit. It gives me a small connection with my husband. I am blessed there are still moments that I can be with the man I love so, if only for 2 minutes at a time.
Thanks for responding. We all have our challenges but we can glean information from those that walked this road before us or alongside of us.
Surely an MRI would clearly indicate what damage the brain suffered in his fall, compared to the MRI that ought to be on file to interpret diagnosis of CBD!
It probably comes down to cost, as well as if such additional information would be a helpful aid to treatment.
I had similar dissatisfaction with information I was given. I 'googled' and satisfied myself that my husband's condition was not as simple as was suggested. The outcome made no difference to status quo, but gave me something to battle with, and a knowledge of what to watch for, and a gut feeling for what was happening.
You may find this is a 'temporary' phase and that another symptom may impose itself on top of this anger. I am talking about speech difficulty,or swallowing difficulty. To me, either would indicate a progression of CBD.
So, whatever treatment is given, watch out for that progression, as I suggest this will give you a better understanding of what is happening to his brain. However, after such a fall it may be that small bleeds might also have an effect. The specialists who looked after my husband did not seem to be able to distinguish one from the other, as he was sent for an xray after a deterioration as they thought he had had a TIA. Nothing was found, but their actions confirmed my own suspicion - I had seen changes myself and wondered the same thing.
They don't know everything! My doctor told me he has a 'practice' for just that reason! Will keep in touch.
Michael has had several MRIs since the fall. None of them showed any bleeding or abnormality beyond shrinkage of the right side of the brain. I had hoped there was something so that it could heal but not the case.
So far there has been no speech or swallowing difficulty. His appetite remains very good and swallowing is normal. The only problem with speech is he makes his own words which, of course, make no sense. He has been occasionally speaking in a low tone which is very difficult to hear. As you mentioned, I watch for these symptoms so that I know if and when he progresses.
Love that your doc refers to it as"practicing" medicine. I totally get that. They sure are practicing with these FTDs.
So sorry to hear the challenges you are going through. Your experiences sound similar to ours - thank goodness for this forum! My mother-in-law is now at the stage where she cannot walk on her own and is wheelchair bound. However she is constantly trying to get up (or escape, as you put it), resulting in falls (although, fingers crossed, she hasn't fallen for 2 weeks now - hope I haven't jinxed it). She also exhibits violent and delusional outbursts, which, as Kevin says, is the illness, not her.
The outbursts can be quite shocking from saying one of her fellow residents has attacked her, to saying her husband (my father-in-law who sadly passed away 5 years ago) raped one of the staff! Totally out of character, which is why it's so upsetting. And then she gets agitated and distressed that we don't believe her. As you say, what can you do apart from hugs and reassurance you're there for them.
Hi my Mum has CBD and over the last 4 months her cognitive functions have really presented with hallucinations agitation mood and behaviour changes previously only physical symptoms were present and some continence issues . Hallucinations have included thinking people in the house at night have taken her clothes form wardrobes convinced we had moved her from her home when she had lived there for 25 years to name a couple. Her behaviour and mood swings have deteriorated from an episode once every 3 weeks to a few times a week and have mainly been towards my sister and I she is in respite care at present while we try and get support have to be honest the number of professional doors I have had shut in my face has been sad and frustrating no one seems to want to accept responsibility to help us get the right care. I have finally got help on medication from the old age mental health team who have prescribed a mild sedative anti depressant for night and diasapeam for during the day if Mum presents agitation touch wood seems to be working for now the dementia society have been supportive and PSP helpline have to admit I have shed a lot of tears and feel guilty that this horrible disease is taking Mum away and there is nothing I can do I really feel for you take care x x x
Hi could I ask what anti depressant has suited your Mum.
We are in same boat here with decline in cognition and mood and waiting on input from GP on what to try next.
Like you no one will take responsibility for getting the adequate support in place for Mum and I and doors closed. Recent one being that she has been discharged from hospice day unit as they deem is 'stable'.
Hope you manage to get things sorted for your Mum and see is doing well in respite.
Hi she is on mirtazapean 15mg at night think that is how you spell it and diazapean during day up to 3 if required . It’s weird she is fine with carers but agitated with us if she gets us in her room. I f you are in the uk then contact your GP for a referral to the community over 65 mental health team must stress it’s not to assess mental health as that has been done with CBD diagnosis the team can assess your mum and look at medication and refer to a mental health psychiatrist for help I rang their triage nurse in first instance and she was able to tell me how the GP should refer on their system yes I had to tell doctor how to use their IT shout if you need anything else I have social worker interview tomorrow to assess Mum but also they can do assessments on carers also to see what help or support we can get as carer it’s amazing what help there is once you start pushing neurology have finally got us a Parkinson’s nurse also so I think I am getting there take care x x
So sorry to hear CBD has another loved one in its claws. I'm glad you are finally getting help from the old age mental health team. Hope it works to relax your mum. I know what it's like when you are the target of her distrust. I get that also. So very difficult to deal with when you would do anything to help, not hurt. We all do the best we can and have to fight those nasty guilty feelings. Guilt is such a wasteful feeling. Wish it would just go away.
Hi Liz, I noticed you have been in a study at PENN. Have you looked into FTD at PENN? My husband has CBD/bvFTD and it can cause all of the symptoms you have described. The fall your husband took may have damaged more of his frontal lobe. Maybe also look at theaftd.org the site list CBD and all of the different forms of FTD. We live in VA, USA. I had to take my husband to UNC Chapel Hill to get a diagnoses.
Thanks for your response. Yes we were in the practice that deals with all of the FTD diagnoses and they gave us the CBD diagnosis. I certainly will check out the site you mentioned. I appreciate your input. Everyone is so helpful on this site.
Hi Mikey12345, My hubby, Leon, aged 76 has P.S.P.into his 8th year now, although looking back the signs were probably there earlier, initially wrongly diagnosed as Parkinsonism, as it seems a lot of people are, lots of his meds they have tried have given him massive hallucinations, once being hospitalized for 3 days, it was absolutely horrid, the smallest doses effect him. He also has had massive mood swings, although not so much now, thank goodness, he is now in Care as I can no longer manage him. I still go daily to see him and stay 5 hours a day, it is such a strange life without him with me. This site has been so so supportive for me, in Australia there is nothing like it.
Ahh, someone else with a spouse in a nursing home. If this isn't guilt provoking, I don't know what is! First for putting him here. I, too, stay a long time, about 7 hrs per day and feel guilty leaving! I'm getting nothing else done as I'm exhausted when leaving here.
They started my husband on new meds this week and he is doing nothing but sleeping so far. I'm hoping he'll adjust and come around to a more conscious state.
Yes, a very strange and sad life without him by my side. I so miss his friendship and support everyday. I read the writings here and am reminded that he is still here and to make the most of what we have. I need that reminder so I just don't give up hope. We are blessed to have this wonderful group to walk with on this journey.
Hi there Mikey12345, Thank you so much for responding, it means so much to me to know others out there are going through a similar situation, thought process etc. Leon can no longer speak, except through an alphabet board, he has never used a computer so cannot manage the app I put on his Ipad/Tablet, he can however manage to play a game called word find, which is great, also has talking books through Vision Australia to listen too. He is PEG fed, which I am able to do when I visit, he clings to me when I am leaving, making it so hard, I, like you am physically exhausted when I get back to my house/pet sit daily, I have told him I am going to take 1 day a week off, he just looks at me with this sad expression, his eyes no longer stay open, another horrid part of this dreaded illness, I have to actually tape one open for him daily for a few hours at a time, the light effects his sight too. I am fortunate that I have a couple of wonderful people that visited whilst he was at home with me who still visit one day a week, as no family speak to us, except my son, who is 5 hours away, and various relatives that also are a long way away, thinking of you
My husband had PSP and died 3 months ago . I know how dreadful this disease is and how varied the symptoms.
One advantage of this site is that we can appreciate that our loved one escaped some symptoms !!! Chris was never aggressive or deluded but we had plenty of other challenges.
The worst thing though is losing contact with the person you know so well for so much of the time. They are still trapped in there and that is so distressing for both. The inability to communicate is a killer.
I also find it hard to watch couples now. Its such a loss when you have been part of a couple.
Thank you doglington, It means the world to me to know others are going through or gone through similar and that I am not alone with this horrid illness.
All I can say is yup! I'm so sorry for your loss. Thank goodness not everyone gets all of the symptoms. I'll take the little gifts.
I, too, miss being part of a couple even though he is still here. We have been so close for so long and were blessed in that. Must remember to be grateful for today.
Michael can still talk when awake and cognitively clear. I'm happy for that.
Make the most of the talking but also agree on basic communication - eg squeezes - before its needed. Make sure you talk about all the important things whilst he can - take videos - make memories.
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Father with CBD - anyone out there?
I’m new to the site. My husband has CBD
Hallucinations and PSP?
