New, with lots of questions

[Phloxfairy]

Hb Dx with fronto temporal dementia jan 2012. No longer working because he didnt like what they were asking him to do! Has semantic dementia and beginning to show behavioural traits. Ie has hidden all spare keys in house from me, including cars keys. Pit padlock on outside sheds so i have no access. Hiding all his mail, fixated with "his" money. Will not provide for future of 10 yr old child. Saving money until he dies. Will not acknowledge progressive, degenerative course of disease. Neurologist and pyscho geriatrician say he has awareness and capacity. I am not allowed to attend or know of any appt with Drs because hb doesnt want me telling them what he is like. This is not my hb of 29 yrs. this is a stranger, with virtually no conversation, no insight, no affection, no love. Wo do i communicate this to when no one will listen to me? My daughter is receiving counselling support because of her dads lack of interest in her. He is also driving to Europe on is own but doesnt know where the local M and S store is 1mile from house.

 

[Butter]

Welcome phloxfairy. You are not alone here. Many of us will sympathise.

You are right to focus on your child. Our son was 7 when things began to go wrong. I focused on him until he was an adult- trying to protect him from his father's deteriorating health. Now he is able to help care for his father.

Hang in there. And keep posting.

I hope you find this site as helpful as I have done.

PS my husband went to Spain. And got stuck there. He got on a bus home in the end - it took 48 hours. He vows he will never go on a bus again. But during those 48 hours we did not know if he was dead or alive. Fortunately, most people are kind to confused people.

 

[Sleepless1]

Will not acknowledge progressive, degenerative course of disease. Neurologist and pyscho geriatrician say he has awareness and capacity. I am not allowed to attend or know of any appt with Drs because hb doesnt want me t

Welcome to the forum. My grandfather (who we live next door to) has mainly frontotemporal dementia (diagnosed with mixed dementia but is mainly the FTD that is causing the issue). What I find so frustrating is that like your husband the docs have said he has awareness and capacity.

Can you write/email the doctors just to inform them about what is happening? I have done this and has been useful for them to see how his actions are impacting everyone else, so that they can help him cope with all that is happening.

We are going through a really rough time at the moment with him. His behaviour has changed so much, he's not the person I knew.

 

[steffie60]

such a difficult situation for you and a frustrating one, if you have a good GP is there any chance you can have a chat with them and see if there is anything that can be done to help you. I hope you will find a way through the difficulties.

 

[Grannie G]

Hello phloxfairy

. Ie has hidden all spare keys in house from me, including cars keys. Pit padlock on outside sheds so i have no access. Hiding all his mail, fixated with "his" money. Will not provide for future of 10 yr old child. ………………………………………………..Neurologist and pyscho geriatrician say he has awareness and capacity. ……………………………………………….... Wo do i communicate this to when no one will listen to me? My daughter is receiving counselling support because of her dads lack of interest in her. He is also driving to Europe on is own but doesnt know where the local M and S store is 1mile from house.

This is what you communicate to your husband`s geriatrician, in writing if you cannot get to see him. They must take you seriously. You are living a nightmare. Please don`t give up, you need to be listened to.

 

[Phloxfairy]

Thanks for replies. I don't know who geriatrician is but can forward to Gp to pass on. I did put in writing my concern for hb well being and safety on his trip to Italy. I have been co pilot for 28yrs on these deiving/camping holidays. I know what he is like. How he will drive with satnav(it makes mistakes and doesn't account for diversions or new sections of motorway?)read it, and drive on opposite side of road? Has difficulty with Spoken word and communication. Out of 6 yrs car broke down and roadside assistance had to be called for( spoken language French and German).
Hb solicitor is sympathetic with my situation but will not put POA through without medical evidence of incapacity although he thinks I should have financial POA at this point. Do I wait until financial ruin before POA can be implemented? His behaviour is making things difficult at home and I truthfully don't know how long I can put myself or child through this.