I need help. I feel like I can't even wait until we see the doctors on Wednesday and with my back I don't even know if I will be able to go with DH. My Mom, 76 yrs has offered to go for me and my SIL switched his day off and offered to drive. NOW the Problem...........Jim's rage is all focused on poor Dylan age 9. I feel like constantly need to be the buffer. Jim LOOKS for things to complain about with Dylan and then when Dylan becomes upset, Jim starts yelling. This is happenning all the time. They used to be so close, now Dylan avoids him. It is so sad. Every behavioral technique we were taught to help us help Dylan has gone out of Jim's head. I'm afraid for poor Dylan. I don't know if this would be a qualifying reason for NH but he has begun to yell at me too in front of Dylan too. I've told Dyls that he has to respect Papa, and to just come to me when he says something to him. I no longer feel comfortable leaving them in the same room together. He is on Paxil & Ativan Help!
Susan L. -thats very sad the poor little guy is having to endure that infliction. surely he cant understand the logistics of whats going on with papa. my DH would do that too a few yrs back. would just glare at my then 4yr old grandaughter. mean scary eyes. looks that kill- thats the word. he didnt say much but those look you could tell he hated her. funny now into latter stages he adores her and she feeds him and wants to be his nurse.:) he even asks for that ;little girl= in my own opinion if i had small kids or even teens at home i would make them my first priority. there lives are just beginning and we want to do whats best for their progressive happiness and mental health. i'm of the belief they will have detremental issues later remembering how he /she were treated even if it was the disease. its our responsibility to the young first then the older ones (imo) to ensure that happens for their good. sad to say but DH is only going to decline and with FTD we know its a difficult road with rages and aggitation. if it were me, i'd consider the placement if the children are going to be living in the same house. i really dont like saying this but you know i have to say it like it is for me..no sugarcoating. i wish i could be different, susan. you must ultimately be the one to decide of course. divvi the only other option is to medicate medicate til he no longer threatens him.
Oh Divvi, you've read my mind. I was sitting here waiting for someone to post and thinking about calling the VA to see if placement is an option if the drs can't help on Wednesday, maybe I will call the dr too. This sucks! I;m crying gotta go.
Susan L. i am sorry if i upset you. i have no recourse but to say how i feel it. no intentions of making you cry. i was only thinking of your Dylan.
ps i watched the movie the other nite, the DUchess with keira knieghtly. it has to do with her having to make the choice of her own happiness or that of her 3 children. its an inspiring True story and i recommend seeing it -she was very strong and chose her childrens happiness over her own..i loved that movie..maybe you can see it sometime when you are better mentally...just a thought -divvi
Oh Susan, I agree with Divvi. I have a 9 year old grandaughter and I wouldn't want her to be treated that way. Maybe meds would help if you're not emotionally ready to place him.
Dr. Phil (the TV psychologist) often says that arguments and verbal abuse around children, whether directed to them or NOT, stays with them for a lifetime. Even if the child is still a toddler. I would certainly discuss this with a medical professional, because they have an entire lifetime ahead of them. Bless your heart, I know it's hard having to decide what is best for everyone... I know the "evil eye" described. My LO has done that for years and years, even before he was sick, to the grandchildren, thinking that it was his way of making them behave when no one was looking. It would scare them to death. It was the kids who cnamed it the "evil eye". It's cruel.
Divvi YOU did not make me cry, the situation is making me cry, the sadness, the worry, the stress, it is just happenning so damm fast. Every day is like waking to a new wound. Every day, every week there are more and worsening symptoms. He was stage 2 in Feb and is now a stage 4! I would like to try meds first, and we are seeing the Neuro, Psych, and PC at the VA center all on Wednesday. I just feel panic right now.
then dont be afraid to use the medications to your satisfaction. i went thru the aggitation period where i decided to rather have him zoned out most of the day sleeping and not with fists in my face or mean eyes.. it kept him home thru all that and saved my sanity. now he is in a much better place personality wise. i do pray it works out for you -make those drs listen to what YOU NEED. my best, divvi
We have seen these stages come and then they pass. Seroquel eased the rage in my DH... He still has some "fits", but it's certainly NOTHING like it was a year ago.
Thanks everyone.............I've been reading about FTD patients taking Exelon and Seroquel with great sucess. Right now it's time for a nap an the dreary day in Maine. Love you all. S
Many of our younger spouses with children have had the same problem as you with Dylan. The advice given is most always - there is nothing you can do for your husband (except the meds others have mentioned) - he will continue to decline and have AD behaviors. Your job is to protect your son. It's a really tough situation, but I do believe that the welfare of the 9 year old is top priority.
Susan - I agree with the above, Dylan must be the priority. If your husband was "normal", what would he want? I can't see anyone in a normal state of mind thinking it was okay to abuse a child. Considering your descripation of their previous relationship, your husband would probably be devastated that he had done that.
If you can, write up what you are seeing your husband do for the doctors and make sure that the doctor gets it before the appointment. This will help you clarify in your mind what you see is happening and will give the doctor something written to think about before he walks in the door to talk with you.
Susan, my thoughts and prayers are with you. Take care of yourself and Dylan first, and as therrja said, write in detail everything your husband is saying and doing and either e-mail or fax it to the doctor before his appointment.
I can only say that when my husband shouts at me or is displeased with me, I feel terrible. My nerves will be shot. Lately, I'm dealing with back and neck problems... and who knows if, in fact, some of this could have been brought on by stress!!!
Physical abuse and verbal abuse are both terrible. It's worse when it's directed to a small child. Bless his heart.
Rest assured that I will protect Dylan. We talked again a few minutes ago and he knows that I have talked to people (you all and the VA Social Worker) and that the Dr. may have new medicine to help Papa act better. Between my Mom and I we will not be leaving Dylan alone with Jim under any circumstances. He was pleased. The VA does not have any beds in their Dementia Unit right now, but are looking into their Long Term Care Unit as a possibility, although there are open beds now, the list there is shorter. I will call the Dr in the morning. Thanks for the idea of faxing or emailing my list/log.
I KNOW you are protecting Dylan. He's a brave little boy and I know you tell him that all the time. I would surround him with positive reinforcement as much as possible. I'd suggest he be told he is so special because he knows about people who cannot help what they say and do, and many many other little boys wouldn't know what to do, and would be afraid. He's brave and very smart.
I'm so glad, Susan, that you do have family - your mother, your SIL, who can help. I do think that if you can you should go with your husband on Wednesday. Drug YOURSELF up! I think Nancy's advice to tell Dylan he's special is good.
Susan - I shared this before that after my MIL died we needed to place my FIL quickly. There was no room in the VA AD unit in Bedford, so the doctor took him in the 'backdoor'. He was admitted to the psyche ward as a danger to himself which put him at the top of the list for the first bed in the AD unit. He was not violent or aggressive = just a runner. He could be gone and out of site in minutes. You might ask the doctor about an option like that.
Dear Susan: It's hard to find anything to be lucky about w/AD, but it was just DH & me, no little ones at home, so I think I was lucky as I read about those who have children in the home. DH had been a super g'father to our g'sons & I am grateful they have those good memories of him that way. They did not live near us, didn't see them much, but he got bad as they entered their teens and altho he was only violent we me at home, I know all the odd behaviors had its effect on the boys, I was glad they weren't around. But if I'd had small ones, even teen-agers, I often throught that they'd have to come first. Over & over I've read of women taking care of their AD mom first and they don't have time to go to school functions, to keep the children & husband first--and they have to be first. Not only should they be protected, but when it's all over, they are the ones who will still be around and we want them to be as emotionally healthy as possible. I know there are some who do not have any help & cannot do otherwise, but if you have to use meds or placement, it's really for the children. The AD LO will continue on no matter where he lives or who cares for him. It's the way it is and what we cry about. Terrible frustration & stress, but tears are good. They cleanse the system, release tension & we darn well have earned it.
Oh Susan... I just can't imagine!!!!! My heart breaks for you and the road you are facing. Poor little Dylan. :( That he is already taking his abuse out on Dylan, truly frightens me!!! I know he will be your first priority. Your path is a hard one... we are here for you. Much love, Nikki
I'm happy to report that since my Mom has returned from her week away and things are more or less "back to normal" Jim's rage seems to have quieted down. I think the fact that our routine was so badly disrupted last week with my being in the hospital for the 2nd time in a month, he was totally stressed out. I am talking to the dr about this, and we have a psychiatric nurse starting to come in once a week on Thursdays to talk with him and keeping track of his symptoms. We had started with her before we lost MaineCare (medicaid) and now that I won that battle, she is starting back. I hope that between some med changes and Pam in the picture, I will get a better picture of where we stand. As always, Dylan comes first.
Lizbeth, Yes, Dylan participates in play therapy and traditional therapy as well. Jim's anger reprieve, was just that. It did not last long, but thankfully we got some help at the VA Hospital. He is starting on Seroquil tonight. The geriatric psychiatrist was terrific and very interested to hear what I had learned about FTD. She chose Seroquil over Exelon for now. She said, "you are very knowlegdable and seem to have a good head on your shoulders, so I'm going leave it to you to adjust the dosage, just keep in touch." I said well my knowledge comes from a great group of caregivers who all deserve MD's with all they've been through! I used the symptom list that we all discussed to help me put together a printout of his symptoms, put an astrerick next to new symptoms since we were last seem and any symptom that I was particularly concerned about I typed in bold. I printed out the list (4 pages) and a med list for each of the 3 docs. BUT Jim and I were TOTALLY UNIMPRESSED by our new neurologist. He was very old school, which isn't always a bad thing, however, he admitted to only having 4 hours of study in FTD!!!!!! He did not know why we were there, he couldn't find Jim's MRI or CT Scan Discs and kept trying to inject humor into the visit. We left with no information, no prognosis, no opinion on his exam, NOTHING! So needless to say, we will not be going back to him. Now that my battle with medicaid has resulted in us having MaineCare again, I will be calling our former Neurologist and we will happily be going back to see him. So I guess that's it for now. Dylan is quite pleased to hear that Papa is an a new medicine to help him be less angry. We got him an Air Force Cap as a thank you for being such a good boy. Thank you all for your love and support. S