The Support Group I am the Facilitator met tonight. We really had a good turn out 18 people. There was a new lady to the group...she was in a nurses uniform, so I thought maybe she was with another women who walked in with her. When it came time to introduce & tell why you were there ( this group is open to all caregivers of dementia) the lady in the nurses uniform spoke, her ex-husband whom she had divorced after 20 years of marriage suffers from FTD Picks variation. As she described that even though she was remarried, for 11 years now, she was still in love with Tom her first husband. They had divorced not knowing what had changed in their marriage & his behavior. Now to the part of my question of any suggestions or help anyone could provide. This man is in a VA Facility in the Mental Ward, he does not qualify for the Alzheimer's Unit, because he is not bedridden. In this unit are men who have really done some bad things. He has behavior problems, so no Nursing Home will accept him. The only meds he is on is Aricept, this does nothing for FTD, nothing for behavior, so yes he would have behavior problems. Being in this ward he is not cared for in a dignified way. Her daughter has guardianship over him, however, she doesn't want to take any responsibility for him. However, she tells her mother nothing. They are now estranged. This woman and her son visit every other week to try to clean him etc.... this is with her present husband's blessing. Unfortunately, she said, her son didn't have the means to fight his sister in court. Continued
This man was a respected Teacher for many years. He was forced to retire, not knowing why he had changed. I was appalled that this man is a Veteran, however, since he was not wounded, he is not receiving proper care for his disease. The lady has written her Congressman, she received a nice letter explaining how MUCH he had done for HIS country, but that was it. I forgot to mention this man is 58 years old.
Does anyone have any suggestions or thoughts on who she could contact that might justify this wrong in so many ways.
Kandee, my first suggestion would be to get new guardianship for this poor man. If the son can not afford an attorney, the state will provide one for his father. They will appoint a Guardian ad litems while the allegations are investigated.
My next suggestion would be to report the abuse, because as I see it, this IS abuse. Here is a site that lists contact numbers by state to report nursing homes and elderly abuse http://www.ncea.aoa.gov/NCEAroot/Main_Site/FAQ/Nursing_Home_Abuse/Report_Abuse.aspx
Next, write as many members as congress as she can. A good place to start would be Patty Murray, she was elected the head of Vetrans affairs... here is the contact information http://murray.senate.gov/public/index.cfm?p=ContactMe
In addition to what Nikki said -- I also suggest that his son contact a social worker at the VA hospital to find out why he is in the mental ward rather than trying to find medications to help with his behavior. If he has FTD, the aricept itself can cause behavior problems since it is counter-indicated for a lot of FTD patients. Not having a service connected disability should have nothing to do with the way he is treated. It seems that sometimes you have to be obnoxious to get the help you need. I have found our VA hospital social workers to be very helpful, but I know that is not true at all VA facilities.
"Some medications commonly used to treat other dementias, such as cholinergic drugs (Aricept, Exelon, etc) and antipsychotic drugs that contain dopamine blockers, are ineffective or could be harmful in a person with FTD. "
read here for more on drugs and FTD: http://ftdsupport.com/side-drugs.htm
Thank you for all suggestions. Since my husband suffers from FTD I told the group that Aricept was probably one of the reasons he has behavior problems. I just could not believe he was on no behavior medication.
I would like to add to write you congressmen (or congresswomen). This has work well in Montana. This is abuse and should be brought up as such. In addition, this is abuse to a Vet. Also, may be you should visit with a local VFW association. They also help in Montana.
Just wanted to say that my husband has FTD and is on aricept and namenda. Some FTD sufferers can take aricept but most do have a problem with it. His neurologist said to try it because he had some success with aricept with some of his FTD patients. If there had been any behavioral side effects, I would have taken him off it immediately.