Hi all I`m from Ireland where most support is related to AD. my circumstances are my husband was diagnosed with bipolar mood disorder 8 yrs ago, now has dysexecutive syndrome & probable bvFTlD - he is only 56 & we have 4 children 24,19,15 & 11. life is hell. We are ruined financially, he`s had a public affair & spent money that wasn`t his so there are legal proceedings pending. I have a medical background but it doesn`t help with the emotional stuff! one of my boys describes our life as living in "Shutter Island"- not very compimentary - but apt. We do have a fantastic Psychiatrist who is very supportive but there is only sou much he can do- particularily when John does not co-operate. Any words of wisdom would be appreciated! thanks in advance.
Welcome fitzlyons - sorry you had to join us. There will be others come along whose spouse has FTD. So sorry for your children - such a horrible thing to watch their parents go through.
My husband has AD, iss 66 and I am 61, he was diagnosed 6 years ago.
Welcome to my website. It is after midnight here, and I am going to sleep, but I will give you a proper welcome and information on FTD in the morning. In the meantime, it may be helpful to you to go to the top of this page, click search, and type in FTD, making sure the "topic" circle is checked. All of the discussions on FTD will come up.
My wife also has FTD as do other people here. I suggest joining http://ftdsupportforum.com. We have members from all over the world and I am sure there are some from Ireland who can provide specific legal and medical system information for you.
My husband has a variant of Parkinson's, Multiple System Atrophy, and his physical issues have progressed faster than the cognitive. But when he was diagnosed six years ago our children were 14 and 17, though away at school. Our daughter recently went back to therapy; she had learned it helps her. Her main complaint is that no one at university except her boyfriend can imagine or relate to what our family is going through. She says she is so glad she is not at home, but she did work out her schedule to come home for a week in June when I was thinking about other possibilities. Our son, the older one, couldn't organize himself at university and came home again, which I wasn't prepared for. He turned out to be a huge help, he found the right middle ground where he grumbled but did not refuse to do things he was asked to do. He has now started back part time and he is showing so much more maturity and organization, some of which I think comes from helping his dad.
One thing that someone said to me early on that was helpful was that none of her worst fears came true. Not everyone is so lucky, but I would say that has been true for me as well. My husband is now in a nursing home.
Fitzlyons, welcome, this is an absolutely wonderful place to get help, vent, whatever. I know I could not have made it through the last 6 years without this website.
My husband was diagnosed 6 years ago at age 58 with bvFTD. It has been a very difficult journey much of the time, so I definitely understand what you're going through. We have no children so I can't help on that front but I am sure it is quite difficult for them too.
My husband plateaued for 2-3 years without much decline, but exhibited very difficult behaviors...wandering, sundowning, agitation, aggression all made worse because he was a very strong, healthy man. Now that his diseased has progressed significantly, he has become somewhat easier to deal with which in some ways has made it easier emotionally.
I agree with paul, join the ftd support forum, it may have people who are in Ireland who can help you find local resources. But check in often here because this is a wonderful place for support. In fact, this is the primary support group for me.
As promised, I am back with a more complete welcome. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease/dementia has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". Since your husband is so young, please click on the EOAD (Early Onset Alzheimer’s Disease) on the left side. Anyone diagnosed under the age of 65 is considered Early or Young onset. FTD is different from Alzheimer’s Disease in that the frontal lobe is attacked first, and memory is usually affected later in the disease. The frontal lobe controls behavior and impulse control, judgment, and reasoning, which accounts for the outbursts and behavior problems seen in FTD patients. However, FTD is a form of dementia, and learning everything you can about dementia can only help you.
Also, for your children, there is a section on that left side labeled AFA TEENS. I highly recommend reading it to see if it’s something that you might want your teens to look into. It is by teens for teens of parents with dementia.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Hello to everyone who welcomed me- I will take your advices on board, it`s been a hectic few days with solicitors & other angry people coming at me from every angle, thanks for the support. fitzlyons