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Lewy Body Dementia - Carers UK Forum

Lewy Body Dementia

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Hi, just joined today and needing advice please, I worked for Adult care Social services for 35 years but have little experience of Lewy Body, my husband’s (now 67) problems started after a TIA 10 years ago, he began to be forgetful, he developed R.E.M. sleep disorder and went to a sleep clinic for a diagnosis, we had to get separate beds as he acted his dreams so violently he was afraid he would really hurt me, he spent months sleeping in the lounge prior to this because he was afraid of himself. We went to a memory clinic who ruled out Alzheimer’s and suggested it was cognitive, we carried on, then about 18 months ago he started a minor tremor, only whilst trying to do intricate work, like changing a plug, things that were precise. I should say he was a Mason by trade and rose to be a Service manager of a private school. Now he struggles to work out the most basic DIY jobs, he gets nasty when I suggest how it should be done, he resents my trying to prompt his memory and I honestly don’t know if trying to make him think is the right thing to do. I can do things for him easily and willingly BUT am I really helping or am I letting this disease progress at a faster rate ? He had a DAT scan about 14 months ago which confirmed Parkinson’s as Dopemine recpters in brain were depleting, tell me your experiences, I love him dearly we’ve been married 48 years this year, I was 17 he was 19 and they said it wouldn’t last !!, well if all life’s shite can’t prize us apart I’m sure I’ll find a way to tell Lewy Body Dementia to do one !.....
Hello Annette and welcome to the forum

My experience is with Alzheimer's rather than Lewy Bodies dementia (I cared for my Mum for 7 years before she died 5 years ago) but you might find this topic enlightening
https://www.carersuk.org/forum/specific ... orrms-8635

I know it's a rather long topic but it documents the disease from the patient's viewpoint. Norms McNamara (the original poster) was diagnosed with early onset dementia some years ago whenhe was only 50, eventually the diagnosis was changed to Dementia with Lewy Bodies. Norms powerfully describes how the disease has affected him and his family and sometimes makes difficult reading but I think you might find it helpful.
My husband had very similar issues and o know it's so hard trying to deal with them. We were married young and he's now 60 and I'm 58.
He gets so angry and rants a lot which makes it so much harder to deal with. Sooner or later I'll have to sleep elsewhere as he has the same night terrors and he also has auditory hallucinations.
I'm a qualified nurse, but had to give up early due to Disabilities. But far from preparing me it has actually made things harder. I know what will need to be done in the future, but I won't be able to physically do that care. I also know now why sine of the patients I nursed behaved as they did. Our learning about Parkinson's was not really in depth. So sorry I knew about the tremor, frozen facial features, stoop and shuffle, I didn't know about the mental health issues. They are very difficult to treat as my husband typically became angry and would not listen. I fear he will return to that in a few years as the disease rides on etc. I've promised he'll stay at home, but I fear that won't be possible if the aggression isn't controlled.
I'm not being listened to and the Parkinson's nurse refuses to discuss his care and condition with me.
I guess I'm not giving you any answers here, but letting you know that we're not alone I guess?
We're waiting for results from his Details scan, the MRI showed bad which I guess is good, but leaves us with nothing substantial except the diagnosis based on his symptoms.
Anyway, I'm now hitting the zzzs, so may be able to get some sleep now. His night terror peak period has passed at least!
Hi Annette,

Welcome to the forum.
Are you
claiming Attendance Allowance for your husband?
Do you have Power of Attorney?
Joint bank account?
Claiming exemption from Council Tax on the grounds of "Severe Mental Impairment" (which can be backdated to the date of diagnosis?
Money management can be an issue, as the importance of keeping within a budget diminishes. Some people have ended up in serious difficulty as a result. Be careful this doesn't happen to you.
From my knowledge of Parkinson's disease and attending The Parkinson's Institute in California as a patient, I dont think your helping your husband will make his disease progress faster. I'm told that it is important to exercise and keep moving. I don't think it serves any purpose to insist he does tasks that he finds difficult and frustrating. Rather find something your husband enjoys and keep as active and socialising as best he can.
My husband has Parkinson's and yes the Lewy Body Dementia is there and it is so sad to watch him. Remember Robin Williams he was diagnosed with LBD and Parkinson's.
Robin's widow wrote this article which is sad = The terrorist inside my husband's brain by Susan Schneider Williams