Hi, I am new. My husband has been diagnosed with early onset dementis. He has the hereditory gene - his mother and numerous family members have died most before the gae of 50. My usband has had a great deal of behavioural changes and is becoming increasingly abusive towards me and our 4 children resulting in me having to ask him to move out of the home. I love my husband however it is really difficult to live with him. He has had memory loss and other symtoms for a few years however it took until the middle of last yr for im to seek help and genetic diagnosis. I feel so guilt as I know he is suffering but I do not know what else I can do. He is still able to work part time, however I do not not how much longer he can sustain employment. I have spent many night searching for help from others who understand what this disease is and its effects on the family and was recomended this web site from a DV support network. In Australia there is not alot of services that can help me and the children cope with the changes that are happening and this is very sad, as my children are quite young 12,10,3,2 and are confused and angry about the current situation. Any guidance and support would be greatfully received
Welcome Traceylee. There will be others along soon who know firsthand about all of the things you mention. I know you will find discussions here that will be helpful. Joan's done an amazing job of providing us with information and references for books and other materials for nearly everyone who needs help understanding this disease. Your older children might benefit from some of the books. Again, welcome to the very best place in the whole WORLD for encouragement and support.
Welcome Traceylee, I sure do understand what you are going through. I am 54 and raising my two little grandsons ages 6 and 10. My husband went through just what yours is. He has FTD, dx'd a year ago. He is now in a Nursing Home due to his muscle atrophy and neuropathy leaving him wheelchair bound. He also went through the angry stage, couldn't stand noise, confusion, etc. I'm so sorry that you have to deal with this, but so glad you have found us. You will soon find yourself surrounded by some very wise, witty, compassionate people who will reach out and help you find the answers to your problems and if they can't we will ALWAYS be here to send you cyber hugs. Hang in there, I'm tossing you our virtual rope to hang onto. Arms around, Susan
Welcome, Traceylee; you were recommended to a wonderful site. Joan seems tireless in all she has done and is doing for us, and she'll be along to give you an "official" welcome:) Many wonderful people are here to offer support in many different ways. Those who are in situations similar to yours will be here to offer specific help shortly. My hb and I are older and don't have the difficulties those who are younger have, but my thoughts and prayers are with you. You can search using EOAD for some discussions about experiences, solutions, and how to mange through these difficult times.
Welcome to my website. Since you are dealing with EOAD - Early Onset Alzheimer's Disease, I will first point you in the direction of the resources I have for EOAD. Log onto the home page - www.thealzheimerspouse.com - and look on the left side. Scroll down to the 4 sections on EOAD. The first 3 will be of significant interest to you. The first is full of articles and videos. The "Early Onset Dementia - A Practical Guide" is next. It is an excellent source of information about EOAD. A must read. The third is for your 10 and 12 year olds. It is a website of support and information for early teens dealing with the AD of their parents. ( I'm sure it's okay for a 10 year old, but check it out first.)
Next, you can go to the top of the message boards and click "search". Type in EOAD, and make sure the "topic" circle is filled in. Then click search again. There are at least a dozen discussions on EOAD.
You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse 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 has put in place of our beloved spouse.
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 have given you a starting point with the EOAD sections. 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 new "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.
Your situation is the most difficult that those on the board face due to the relatively early stage of your husband. Still functional yet brings lots of problems into the house. But you are not alone, people on this board have and are divorced, separated, living apart from their spouse and even some have had to place their spouse in facilities to protect themselves.
There are 6 people involved here, the 4 most important are the children, the second most important is you because you are vital to children as well as your husband and last is your husband. It sounds cruel but it is not. He can not help himself and his behavior and you really can't control him in the early stages. He will spiral deeper into this disease no matter what you do.
Do whatever you have to to protect yourself and the children, physically, emotionally and financially. And DO NOT FEEL GUILTY ABOUT IT. Then anything you have left should be used to help your husband in any way you can.
Come here often for advice and a sounding board. The people here are wonderful and there is someone that has already experienced every problem you will face.
Welcome Tracylee. its heartbreaking to hear your story. such young children and the issue with DearHusband on top. i think you made a wise decision to protect the children first. they're safety and wellbeing come before you can attempt to deal with your DH disease. its never easy and they can become aggression without notice. i hope you stay on the forum and can find good support here among those who are walking in your same shoes. there are many here with early onset spouses and some who have children at home as well. wishing you well. divvi
My heart goes out to you and your family. I know that this must be difficult for you to deal with your husband and take care of your children. Unfortunately personality changes can occur with some afflicted with AD. There are some variants of familial genetic mutations that can cause aggressive behaviors early in the course of the disease. Try to remember this is not his fault. You may also talk to his doctor about medications for aggressive behavior.
My husband also has familial Alzheimer's disease. The reality is that your children (and mine) each have a fifty percent chance in inheriting this genetic mutation. I would like to share some information about DIAN (dominantly inherited Alzheimer network) with you. Recently the NIA awarded 16 million to conduct a study for children of adult parents with eFad. This is a worldwide effort with three locations in Australia. Often times clinical trials will discourage those with familial AD from participation by putting a minimum age of entry. The good news is that if your husband chooses to participate there will be a small clinical treatment trial starting mid 2010. I have talked to one of the study investigators and they are hoping NOT to use a placebo in these trials- so he would get the study drug. I would encourage that you talk it over with your husband and if interested contact the site nearest to you. In the states they will pay for travel and expenses. Here is the link:
http://www.dian-info.org/institutions.htm
For the record my husband is in the Elan study and now is on open label (real drug). He was diagnosed three years ago- today is putting a tarp around a broken roof skylight.
Tracylee, welcome to Joan's....here you will find other spouses (spice) that can commiserate with you, hold your hand, listen while you vent, give you good advice, and be with you in your time of need. We've had two that I remember recently who have had small children and several who have had teenagers when AD struck without warning. Getting help for your children to enable them to deal with what their father might say or do and understanding that it is not the man they once knew but someone in his body that they need to help you take care of is one of your first priorities. You are wise.
A lot of us contemplated leaving our spouses before we realized that AD was causing the problem, not our spouse! Getting the diagnosis of AD helped us to understand and cope better with the change in personality, change in feelings and their lack thereof, and total absorption of themselves and what they want. We realized that they needed us to see them through this and get them the help they need.