Hi Kevan has looked up fronto bv and has decided that is him. He has also looked up a copy of his testing. He wants to know how they come to a diagnosis. It has been lots of reassurances and he wants to know how I can listen to him asking all these questions and also his complaining about all his upsets day after day. He wants to know if I ever get sick of listening to these things over and over. I have reassured him that I love him and will always listen to him no matter what or how often he complains. I then tried to explain that there will be no definite diagnosis except at death just symptoms. I assured him that I will always be there and we can talk anytime. I just don't really know how to handle these questions. I wish there was a book that would say" if this happens do this" if he asks this say this" he needs answers and I don't know what to say. He is trying to find some justification for what is happening to him other then dementia. I wish I knew what to do, what to say to comfort him.
I wish I had the words for you but don't. Sounds like you are doing the best you can. Sometimes we just have to say 'I don't know'. My husband does not ask questions - just trust me to know what is going on with him.
(((hugs))) others with more experience will be along.
My husband has no questions - seens completely oblivious. Of course, he's stiil at home, in his comfort zone, in his routine & maybe that helps. But then, any help I offer, or any answers I would give if he asked anything, would be pooh-poohed, rejected and/or argued with. Maybe it's better he doesn't ask questions.
Jazzy, just do what you're doing, the best you can under the circumstances.
This interest in what is happening to him came about because a number of people who either live in the same LTC or visit have asked him why he is there. They make comments like " why are you living here? There's nothing wrong with you! He decided to look up the disease we have said he has and came up with this. He still can't see it but it tells him why he does these things. In other words, he has a name for it but it's not obvious to him. He is high functioning in everything but his behaviour, memory and anxiety are difficult for him. I don't understand how this disease or how it affects a person. I just shift from one symptom to the other and one upset in his world to the other. I'm just happy that he can understand that he needs care that I can't give him anymore. It must be awful to have people see you as not needing care but knowing you have to live in LTC an not seeing why
Hi Jazzy, I really question whether a number of people have asked Kevan why he is living there and told him that there is nothing wrong with him. Although many people nowadays make all kinds of intrusive and inappropriate personal comments, they usually draw the line when it comes to contradicting medical diagnoses. I wonder if Kevan is just focusing on what one person said to him. After all, when you’re in a dementia facility, it’s probably flattering to be told that there’s nothing wrong with you.
As LFL says, we all wish we had a manual. It sounds like you’re doing fine answering his questions and giving him reassurance.
Jazzy, your husband sounds more aware of FTD than my wife. L knows she has it, is familiar with psychiatric and neurological conditions, but when she reads about it she only concentrates on the expected life span. She understands it prevents her from being able to do certain things but has no awareness of how her behavior affects others. Your husband is unusual in thinking that his repetition and behavior can bother you.
I think my wife has had similar comments, such as "why are you here." But I suspect it can be misinterpreting what someone has said to her, someone might have remarked on how well she is doing. We have seen many times someone saying something and her misunderstanding.
Like Kevin, L understands mostly that I can't care for her at home.
I am doing much better and looking forward to spring and my patio garden. DH is quite high functioning and is a very good actor. He puts up a good front and it's the behavioural issues that are the problem. He is holding on to every branch and trying to not accept the fact that he has a terrible disease. He knows there is something wrong and that he has to live there but full realization is not in his mind. I think he brings up these conversations in the hope that I will say " they are right, there is nothing wrong with you and you don't have to live there" It's the only thing that I can think it may be. It's not going to change. This is our life and this disease is so unpredictable.
Jazzy, lifting you up in prayer daily. Stand your ground and try to get some peace. People think that you have to "look" a certain way to have a dementia issue or as my Grandson says, a "disorder". The only thing that is predictable is the end result. Hugs to you.