My DH was diagnosed in 2008 and his in stage 5 showing signs of 6 . My teenager said to me that she is actually scared at times being in the house with DH because of his behavior, etc. She asked me why is Dh taking medicine if there is no cure . How do you answer why take pills everyday if he is not oing to get better and is getting worse. He has a double diagnoses FTD/EOAD he is now 59.
angel I have no experience with your situation but my gut instinct is I would be very worried about my daughter. I would be thinking seriously about placing him. But you need to give us some more information about meds, kind of behavior worries her etc. You are losing your husband and you don't want to lose your daughter also.
I have a great resource for your teenage daughter. Log onto my home page - www.thealzheimerspouse.com - and look on the left side. Scroll down to AFA for teens. It is a website of support and information for teens dealing with their parents' EOAD. As I always emphasize here, no one can understand a spouse's emotions and struggles with their husband/wife's AD. It is the same for children of EOAD parents. They have no peers who are going through the same things as they are. The AFA website was developed by teens for teens. Please check it out.
It is also important that she understand the nature of the diseases her Dad has. There are a tremendous amount of resources on my home page. Have her read "Understanding the Dementia Experience". With an FTD component, it is extremely important that she understand how that effects behavior and impulse control, which could be what is scaring her.
Excerpt from http://www.merck.com/mmhe/sec06/ch082/ch082b.html
Frontal Lobe Damage: Generally, damage to the frontal lobes causes loss of the ability to solve problems and to plan and initiate actions, such as crossing the street or answering a complex question. But some specific impairments vary depending on which part of the frontal lobe is damaged.
If the back part of the frontal lobe (which controls voluntary movements) is damaged, weakness or paralysis can result. Because each side of the brain controls movement of the opposite side of the body, damage to the left hemisphere causes weakness on the right side of the body, and vice versa.
If the middle part is damaged, the ability to move the eyes and to perform complex movements in the correct sequence may be impaired. People may have difficulty expressing themselves in words—an impairment called Broca's (expressive) aphasia (see Brain Dysfunction: Broca's (Expressive) Aphasia).
If the front part is damaged, any of the following may result:
Impaired concentration Reduced fluency of speech Apathy Inattentiveness Delayed responses to questions A striking lack of inhibition, including socially inappropriate behavior
People who lose their inhibitions may be inappropriately euphoric or depressed, excessively argumentative or passive, and vulgar. They may show no regard for the consequences of their behavior. They may also repeat what they say.
First of all at 17 your daughter is an adult and needs adult answers. The answer about the dementia drugs is that they are like painkillers would be for a terminal cancer patient. The drugs aren't to cure the patient. They are intended to keep them comfortable and functioning as long as possible. In both the case of the terminal cancer patient and a dementia patient, the drugs do not prolong life. They just make what life is left better.
Have her go to the site Joan suggested, but she should not just stick to the kiddie pages. She is not 12. It there is a teen support group (like this one) there, that would be a good thing is she is interested in it. She should look around and get as many answers as she needs. She also should have your permission and support to go online and just plain search. She may not want to do that behind your back, so she needs to know it is OK.
And, I took my adult daughter with me to one of the last neurologist's appointments. She had been online so she didn't have questions, but your daughter is 15 years younger than mine and might have some that even you want answers to.
She probably also needs to know how early onset is going to affect her. And she might need some privacy with a doctor to ask that question.
I actually made an appointment for my teenager to start with therapy, I feel she really needs to explain all her concerns with someone because everytime I try to talk to her about DH she wells up with tears and says she doesn't understand , she doesn't know why this is happening to us and if he will forget who is she is...so I made the call today to get some help for her....my family is facing so many issues first the diagnosis, now with my teenager.