Need help for my Mum

[pickle]

Hi there

I posted a few times on here a year or so ago when my Dad was first having symptoms. He has now been diagnosed and physically the deterioration seems to be, thankfully, pretty slow. He has lost all use of is right hand and arm and his left is going. He has fasiculations everywhere now and his right leg is going so I'm guessing a wheelchair is not far away as he's not going to be able to use a stick or anything given lack of arms. He has also started slurring his words a bit and sometimes chokes on his food. BUT the big problem we are having which is so heartbreaking is how much he has changed as a person.

It's pretty embarrassing to write down, but he just says and does the most inappropriate things and its so unlike him and very upsetting. We're sort of used to it in a way now but it's got to a point where we have to warn people before they meet him or see him. The worst part is that he is still refusing to stop working (he works like 12/13 hours a day) and he employs my sister to help him get around and type stuff for him etc. but it is so upsetting for her and she gets so scared he is going to say something inappropriate to clients etc.

But the thing that is most difficult is how awful he is to my Mum. They have always had such a wonderful relationship but he just criticizes everything she does now and shouts at her and he just doesn't seem to care. He says things like 'You are so stupid' all the time. My Mum is working so hard to try and make enough money for when she has to stop work to care for him and she is just exhausted and I'm so worried that she is going to have some kind of nervous breakdown. She's like hyper all the time trying to pretend none of it is happening. I have talked to her about it but she refuses to talk to anyone or get any help. She just says that she knows she has to look after him and she will but she doesn't really feel anything for him any more and sort of hates him.

I have asked his doctors about FTD but they keep saying he is fine and to get on with it so I really just don't know what to do. We have always been such a strong and happy family. The kind of family my friends always used to comment on and say they wished they had the same. I honestly thought we could cope with anything life threw at us but now everything is literally falling apart. Everything we had seems to have gone.

I love my family so much and am desperate to do something to make this better but I feel like there's nothing I can do now. Sorry this has gone on so long! I just wondered whether there is anyone out there in a similar situation or anyone who could offer any advice on what we can do.

Much love xx

 

[sanderson]

HI Pickle, welcome and I glad you have found the forum again but sorry for the reason why. I am not sure how old your dad is, but from what you describe, it does sound like he may be exhibiting symtoms of FTD, which from what I have been reading can coexsist with a diagnosed of ALS. Not to frighten you, but if he does have a dementia, his decsion making abilities for his job( and other aspects of his life) will be affected and you are right to be concerned. if your family DR does not listen to you , is there a another DR( a dementia or geriatric specialist would be wonderful) you could talk to as your dad would benifit from a thorough cognitive assessment and remeber that the DR only sees the client for the time that they are in their office and folks can keep it together for short periods of time. There are medications avialble that can help moderate the behaviours associated with FTD . You may have to advocate for your mom and dad( if they will allow you) and push to have him assessed. One thing that may help is to document his behaviours and when they occur, that way when you go to the DR you wont have to rely on memory. Also , keep encouraging your mom to allow some help in as I am sure you know, if she burns out then your family will have more to deal with, plus, if she is not doing well and she is the primary caregiver for your dad, then his care may suffer as well.My thoughts are with you and your family .

 

[joelc]

Sorry to hear how how he is behaving. If you get another doctors opinion and they sill think he does not have FLD then you need to talk to him and tell him his behaviour is not acceptable. A good slap across the head might snap him out of it. I have hear that many PALS go through a time like this and once their family tells them they will no longer put up with it they get better. Good Luck!

 

[luvnmm]

Hello Pickle! I am sorry to hear what is going on with you dad. I wish I could advise you, but I think the others have suggested things you could do. I just wanted to let you know that I am sorry and that I am here for you if you need to talk.

 

[brooksea]

Sorry about your father. It could be "emotional lability." My husband has EL and takes Lexapro, which helps some. If he doesn't take it, he can be quick to anger and laugh or cry at inappropriate times. You may want to look into an anti-depressant for him, as that is the only thing, currently, that will help with EL.

Good luck!