Living with a 'mad man' Has anyone got any advice about living with a 'mad ma...

[maggie123]

My husband does not have lucid moments for any length of time, constantly babbles rubbish, calls and shouts for me as soon as I go out of the room, has virtually no mobility, and has hallucinations and delusions. I want to care for my husband at home, but feel I have no sense of self identity, and can feel my life slipping away. I feel dubious about letting friends sit with him so I have a break, as I would be worried that they might find it frightening when he is shouting and bawling. How do you keep a sense of self identity when you have no sane person to chat to? He had been in care for several months but I wasn't happy about that. I'm trying to arrange 1 day at day centre for him and know could always have respite for him. Any suggestions on how I can have a life that meaningful enough so that I can carry on caring for my husband at home as I know he had insight into his condition, and is very frightened at times. He has frontotemporal lobe dementia with Parkinsonian features.

 

[supporter1]

Maggie, I do not know you circumstances but get the real sense of love you have for your husband. What I also feel is an overwhelming sense of emotional strain as your putting your own life on hold to care. Problem is that it is such a challenge what your attempting to do without help your going to really struggle I fear.

Bottom line is let carers in to help. It may feel uncomfortable but it is a necessary thing to enable you to continue with your husband at home if that is what you wish. Sometimes we all put barriers to accepting help but if you accept it then it will help you . If your husband has challenging behaviour then perhaps friends to sit with him is not the right way to go and perhaps trained carers is more appropriate.

I hope you find the solution your looking for.

 

[fizzie]

I do agree that friends are not always the right people to sit. Have you had a carers assessment - that would give you some free of charge hours to give you a break. Worth a call to social services to ask for one. Thinking of you at this really difficult time xx

 

[Countryboy]

well I have Alzheimer’s / Frontal-Temporal-Dementia and possible a pain in the butt and yes get called all sorts but if some said I was Mad I would tell them to second word is !!!! off very quickly but not to worry it can be frustrating us all I think most of those I meet are bonkers because I must be ok I’m on medication

 

[Kevinl]

Hi Maggie
It sounds a bit extreme, is he getting all the right medications, can you get a check for any infections? Normally UTI is the common one but other underlying infections can cause extreme behaviour too, it can be as simple as a dental infection, a white blood cell count is the usual test.
As Tony says FTD can be medicated not always perfect but unless this is very late stage it isn't usually as bad as you describe.
I'd get the doctors to check him over.
K