having rough time caring for husband

T

txgerl

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#1
:unsure: I'm new to forum. Hope I'm in right place. My husband was in hospital and had a stroke that went undiagnosed. I transfered him after that tried to discharge him with hospice for end stage liver disease. He doesn't have liver disease. The dementia was a stroke. He had been recovering well at home when he got septic from a hospital acquired bed sore that was not manageable at home.since then he yells names Bob Bryan George but would calm down and answer questions . The last place gave him so many drugs it was unable to do any thing but stare. Now he can't answer questions he tries to you can see him think then tears from frustration. Will this improve since the drugs have been stopped? He is trying I think but will keep yelling so loud. This keeps nursing staff away from the interaction I think he needs. I want him to come back home but afraid I will not be able to meet his needs. Small doses of seraquel 100 x2 and depokote 250 mg x3 worked fairly well. Any help or advice would be great. We have been together for 40 yrs and he just turned 65. Makes me so sad to see what could have been avoided. One doctor who would not listen to him or me, missed so many things that was brought to his attention and ignored make this worse. I was a nurse as well as an EMT and paramedic.:low:
 
calypso

calypso

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#2
Hello there and :welcome: to the forum. You might find it useful to look on the front page at my article, "psychosis and the elderly person". I am not saying he is any of those things, its just all the aspects that can go wrong and be called psychosis or dementia, when it isn't those things.

I too am a nurse, worked with people with dementia for 10 years. One of the three units we had was for assessment of people labelled with dementia. What we found was that only about a third actually had it. The other two thirds were terribly diagnosed and once that label is there, care changes often for the worse.

A stroke, as you know, may well have altered aspects of his brain and that could cause the shouting out. Calling out names can be a person trying to place who they are now. Their whole sense of self has changed and that can cause all kinds of inner confusion. That doesn't mean dementia, and a stroke can be mistaken for such. I would advocate that he gets a psychogeriatrician to assess him urgently. Also, if you have the strength, argue for a proper expert in strokes to assess him.

It sounds like a lot of numties are guessing all over the place and getting things badly wrong. You need experts in here, not general docs who don't know this speciality. It strikes me that the bed sore could be causing sepsis elsewhere in his body. I mean have they assessed all of his blood chemistry, done CT scans of the brain, checked everything properly?

Do read the article - it may give you insights or at least questions to ask. But insist on experts. My husband was in hospital for all kinds of things and initially I bowed to the doctors. Eventually, I found my voice and got very assertive (well a tad aggressive if I am honest). Bed sores are now being made illegal and show a distinct lack of care. Complain and complain again. Be a bloody nuisance. Who cares what they think of you, make them afraid of you. Sorry if that sounds angry, but I get angry when I hear of such poor care.
 
T

txgerl

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#4
Tthank you both for respond. I don't know if here is right place to answer back. I don't answer quickly no internet most of time. I have been verbal and restrain myself because I get too assertive. His stroke caused behavior and boundary changes. But he was recovering and get back to his old self. I was told he wouldn't . The sepia is from UTI I've been asking for condom cath but still has internal. I think the uti is not gone and relapses. Ct scan shows no new stroke or change in brain. So believe the recurring sepis is the cause. But no one listens or want my opinion. He does need a little medicating they want him not to yell at all. That's how he get help. If he iscomfortable he yells. But since this hospital sstay thing might be addressed. I will read your article thank you again @////////////////@/@/@@
 
Falling Sky

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#5
It is really hard to deal with when someone's personality changes due to illness and it must make even wanting to care for them strained at times=(

I hope that the hospital stay will help.

Please keep us posted xxx
 
calypso

calypso

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#6
Has he seen an expert stroke person yet? Its common, for instance, for someone who has had a stroke to cry easily. But the essential person is still intact. As for the UTI, that is essential they get a specimen. I totally agree with the "condom" style continence method, but if they don't like that (there are issues with it), then most hospitals do have pads now. Again, see the ward manager and if not satisfied go above her.

You need a full assessment and everything explained clearly. You could try PALS (Patient Advocacy Liaison Service) and write a list of all your concerns and ask them to back you up. I am still angry at the treatment your husband is getting, and you are getting too. xxx
 
Jaminacaranda

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#7
I'm no expert on your husband's condition txgerl and can offer no advice but I just wanted to say how much I admire you for simply being there for him and fighting on his side and yes, I can imagine just how bloody hard this situation is for you. I wish you well and please look after yourself too and try and find some relaxing space for yourself if you can, because you need to stay strong. Huge hugs to you :)