Husband recently diagnosed with Lewy Body

[Larker]

My husband has recently diagnosed wit Lewy Body Dementia. I cope with the lost sock, asking directions to the bathroom, general difficulties with disorientation etc. I am finding it very difficult to cope with the nights when he doesnt know me doesnt know we are married. He has been very confused since dinner tonight. Asked when he should go home, I have been unable to reassure him that he is home. I have asked him where he lives and he gives our address, he said he lives alone and he is divorced. We have lived together for 22 years and marred last year. He has no recollection of this tonight. He asked if he can sleep here tonight, but asked where he should sleep, where is the bathroom etc. I took him to the bedroom, showed him his possessions but nothing seemed familiar. What do I do I am so upset?

 

[Banabarama]

My husband has recently diagnosed wit Lewy Body Dementia. I cope with the lost sock, asking directions to the bathroom, general difficulties with disorientation etc. I am finding it very difficult to cope with the nights when he doesnt know me doesnt know we are married. He has been very confused since dinner tonight. Asked when he should go home, I have been unable to reassure him that he is home. I have asked him where he lives and he gives our address, he said he lives alone and he is divorced. We have lived together for 22 years and marred last year. He has no recollection of this tonight. He asked if he can sleep here tonight, but asked where he should sleep, where is the bathroom etc. I took him to the bedroom, showed him his possessions but nothing seemed familiar. What do I do I am so upset?

Hello Larker. Welcome to the Lewy Body club. My husband also has this form of dementia. I find he is very changeable. It sounds from what you say that the non recognition is happening some days but not others. I can see how horribly distressing this must be for you. Do you find it is worse in the evening? I find this by far the most difficult time. I thought it might be wine at one stage but having cut that out for a while found it made no difference at all - some days are just bad and some days are just very very bad. Yesterday was one such day for me. Sudden confusion way over what is usual can be due to an infection - I have learnt this here and now from experience. There are some lovely, kind, long-suffering but very special carers on here as you maybe have already discovered. I am sure you will find someone has experience of this particular difficulty. My husband does recognise me but only acknowledges my existence in relation to himself - ie I am staff - and when I mentioned this one day he said his would sack me. It sounds as if I could have been a joke but he was deadly serious. Although I laugh about it now. I hope tomorrow is a better day for you.

 

[Larker]

Hello Banabama The symptoms seem very similar and it is nice to speak to someone in the same boat. My husband thinks we live with other people, some kind of home or hotel and thinks I am staff. He often says do I have many in for breakfast etc. It must be a symptom of LBD

 

[Grahamstown]

asked where he should sleep

This is very upsetting because it shows how muddled the person is, my husband has started asking that although he has Alzheimer’s and mixed dementia not Lewy Bodies. Whatever the cause it’s still a shock to deal with and I send you my moral support for the difficulties we share, although different causes.

 

[Larker]

Thank you. My thoughts go to you too