Does any person on this Forum have Frontotemporal Lobe Dementia

[oldman1952]

It would be nice to be able to talk to people who have Frontotemporal lobe dementia and or Motor Neurone Disease. Because there are so many things that happen during the course of the disease and it would be nice to talk to relatives and carers of the two diseases. When you are diagnosed with these diseases you feel totally alone and on your own.
I would like to know what the spouse of the sufferer thinks and deals with the thoughts that in a very short time they will be going through life with out the partner that they married, especially when the diseases can strike at such young ages. To compare notes about feelings and symptoms some people effected have during the course of their disease. To hear what might come in the future or something that you both coped with and hoe did you cope with it? Also when you were diagnosed who did you tell and how did they take it? Lastly how did your children feel when they heard the news that their father or mother had the disease and was going to change. Thanks for your help and views, best regards Oldman1952.

 

[nitram]

You might find this forum search useful:
https://forum.alzheimers.org.uk/search/771686/?q=fld&o=date

 

[Ernest]

My OH has been diagnosed with FTLD in January this year. in 2006 he had an accident which left him with brain damage and I was told then, that dementia was on the cards. For the past 12 years we have rubbed along reasonably well. I have had to make a lot of allowances and more or less adapted my life around his. However, since January things have got much worse in that he has had to be hospitalised 3 times because he had fallen and I cannot get him up. He seems to be more prone to UTI having had 3 since January. I wonder if this could be because he no longer drinks the 3-5 pints beer a day which he used to do. Beer after all is mainly water.H e doesn't like drinking water or squash so I worry that after the last course of anitbiotics UTI will raise its ugly head and we're back to sg 1 !! He is very needy and constantly wants to know where I am. He seems to forget that I told him 5 minutes earlier that I was going into the garden. I then hear him yelling out for me. The worst thing I think is that there is no reasoning. It is or it isn't !! I cannot have a two way conversation with him. He has little insight which means he cannot see the consequences of his actions. He is impatient and does everything at a pace without thinking. He thinks I can be here for him 24/7 doing everything he wants. I used to work 30 hours a week. I've been on unpaid leave for the past 2 months. I'm going back to work doing 3 hours 3 days a week tomorrow. I have to do something else other than wait hand and foot on him. A carer will be coming in on those days for an hour over lunch time to see that he is OK. I am very nervous about what I shall find when I get back !!

 

[oldman1952]

My OH has been diagnosed with FTLD in January this year. in 2006 he had an accident which left him with brain damage and I was told then, that dementia was on the cards. For the past 12 years we have rubbed along reasonably well. I have had to make a lot of allowances and more or less adapted my life around his. However, since January things have got much worse in that he has had to be hospitalised 3 times because he had fallen and I cannot get him up. He seems to be more prone to UTI having had 3 since January. I wonder if this could be because he no longer drinks the 3-5 pints beer a day which he used to do. Beer after all is mainly water.H e doesn't like drinking water or squash so I worry that after the last course of anitbiotics UTI will raise its ugly head and we're back to sg 1 !! He is very needy and constantly wants to know where I am. He seems to forget that I told him 5 minutes earlier that I was going into the garden. I then hear him yelling out for me. The worst thing I think is that there is no reasoning. It is or it isn't !! I cannot have a two way conversation with him. He has little insight which means he cannot see the consequences of his actions. He is impatient and does everything at a pace without thinking. He thinks I can be here for him 24/7 doing everything he wants. I used to work 30 hours a week. I've been on unpaid leave for the past 2 months. I'm going back to work doing 3 hours 3 days a week tomorrow. I have to do something else other than wait hand and foot on him. A carer will be coming in on those days for an hour over lunch time to see that he is OK. I am very nervous about what I shall find when I get back !!

Hi Ernest, I am sorry to hear that you are going through this stage with your other half. When this stage occurs there is unfortunately not a lot that can be done about the problems.

However I was watching some accounts of carers who are going through the same stage as you are. One chap whose wife had welfare power of attorney, would go down to the bank and virtually rob the bank and they just let him draw wads of cash out of their account. His wife was so angry that the bank would always let him have the money and he would walk down the road with money spilling out of his pockets onto the floor and no one did any thing about it apart from pick it up and put it in their own pockets.

If you go on You Tube and type in videos of carers whose partners have Frontotemporal lobe dementia. Not forgetting your partner might also have Motor Neurone Disease too. It will alighten you because I have learned what I will be like sometime from now. I am dreading it because it is a terminal disease and I do not know how long I have got, so with the help of a link nurse from the Alzheimer society is helping my wife and I plan for the future. I hope that you see your GP and get the help of the dementia team to come around and assist you as his carer and him as the patient with FTD. Best regards Oldman1952. Ps let everyone know how you get on watching those amazing videos. I believe that they will really help you to understand our condition.