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Early Onset with Young kids

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Old 09-17-2012, 05:56 PM   #1
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Early Onset with Young kids

Two years ago, I filed for divorce from my wife. Her anger management issues had spread to violence against me and the behavioral issues were too much and not controlled in front of the kids. Today, I am 53 and my wife is 9 and 5.
A year ago, after trying to work things out or give her a chance to see what was at stake, I was ready to file a motion to kick her out of the house and grant me full custody of kids.
Then I noticed she was having trouble finding words. She admitted she also had trouble writing checks and in cursive. Not one who always had great eyesight, she also mentioned difficulty with visual issues and this was eveident in some driving problems.
Last November, we started the long process of getting tests. At first, her Neurologist feared she had a brain tumor, as she had significant problems with basic testing, such as drawing a clock. The MRI was negative, but an EEG showed periods of dimished brain waves during the test. Further testing for six months included blood tests, and more blood tests, two spinal taps, CT scans, etc etc etc. Nothing came back positive until the second spinal tap. It showed an elevated marker for a Rapidly Progressive Degenerative Brain Disease. The Doctor feared of Mad Cow Disease or a Prion disease. A Pet Scan was ordered and brought back a result showing significant degeneration in my wife's Pareital Lobe...and Early Onset AZ was the probable diagnosis.

This explained in many ways the issues she was having for about five years relative to anger management and behavioral issues, even the violence. I chose to honor my vows (through sickness and in health), though it has not been easy. I chose to honor them also for my kids and the love I have for my wife.

The probleem is that I had turned the corner at the time of readying the motion to kick her out. I had made peace with it feeling it was the right thing to do for the kids. Yet now, I feel trapped and feel all the pressure of being my wife's caretaker and the "everything" parent. I have finally hired a helper who can drive my wife and kids to schoool etc (she had her license pulled due to thee visual issues) and this allows me a bit more time during thee day to work etc. Yet I often find myself unable to produce at work because the load I bare is so freakin heavy both on a daily basis physically and a daily basis mentally.

I wonder how I have been doing it all and if I can continue. I really no longer have the woman I married, rather a woman who is digressing back towards being a teenager.

I also am concerned about her duration with the disease. She has clearly had symptoms for four or five years, we just did not recognize them. She was diagnosed in March/April of 2011. I have read the various timelines and life expectancies and I am aware the disease takes a different path with each victim. The facts are that Early Onset appears to have an average life span of seven years from diagnosis. What does that mean really? Had we gone to thee doctor a few years ago, she may have been diagnosed back then. Where is she on this downward sliding scale? God only knows. Her neuro psych exam came back with a global deficiency as opposed to a profile fitting degeneration and trouble with specific areas. Her IQ came back as 57, and this from a former successful business woman.

Our kids constantly see thee difficulties their MOM has and they see her anger and behavioral issues. Our oldest knos she has AZ now, but when he asked if she would die from it, I said no, taking the view that you really diee from pneumonia etc becausee the AZ hinnders your ability to fight. So techincally, not a lie, but I could not say yes.

I know I have shared much here and I am not sure what help if any I am looking for. I suppose I really am concerned that with all of her difficutlies and test results...including the global deficiencyy of her neuro pysch exam, well, I wonder how far along she might be on that seven year average.

Any thoughts to share or stories, or advicee would be appreeciated.

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Old 09-17-2012, 06:35 PM   #2
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Re: Early Onset with Young kids

Dear Plodding onward,
I welcome you to the board, and am sorry your first post has to be about such serious issues. You indeed have a heavy burden, and for how long is very unpredictable. I can offer some suggestions based on what you have said.
First of all, no one can deal with health problems like this without help, a good support system, and time out to care for one's own needs. I respect your decision to stay given that she is ill and cannot help how she is. I would get in touch with your (her) insurance company and find out what supportive services are available as far as home care, Alzheimer's unit day care, and enlist the help of any of her family members who can help, perhaps on a rotational basis, like a day or 1/2 day a week, etc. Your local Alzheimer's foundation should have lots of support groups available, so you can get ideas and share frustrations with others who nare exoperiencing similar problems. The foundation will also have a list of resources available to AZ families, who provide care, legal counsel, insurance help and counselling. Your children are in a tough situation, and they need their Dad more than ever. When the needs of your wife become unmanageable at home, you will likely need to rely on AZ unit care at a long term facility or live-in help at home. There is a danger that your children's needs will not be met if you try too hard and too long to care for your wife. You cannot do it all, and you need to be there for your kids above all, and let others help with your wife. I would research and line up your resources before you actually need them, so you have the info you need and a plan in place. If she has family in your area, I would get them all together and lay it out honestly, and ask for their help in giving you respite. The support groups can be a wealth of information, friendship, and coping ideas.

Old 09-17-2012, 06:37 PM   #3
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Re: Early Onset with Young kids

Plodding you have ask the question we all ask over and over.... and a question that has no answers. There are statistics and estimates but there is no way to say how your wife will progress through the illness. That 7 years is nothing but a statistical average between those that live for a year after diagnosis and those that live for 20 or more years. Yes, it does make a difference at what point in the disease she is diagnosed. Some are diagnosed very early when they are still high functioning and others are diagnosed late in the disease. The physical health of the person makes a difference. Those with other health issues live for a shorter time than those who are in good physical health. That is a long way of saying... there is no way to know! I would not even venture a guess. Mom was diagnosed in 2006. She was showing symptoms for several years prior to that and was diagnosed with moderate to sever dementia consistent with ALZ. It is 2012 and she is still going strong. I don't dare even try to guess how much longer she has

It was a huge step you made to bring her back and take care of her. Yours is not the first story I have heard of behavioral problems causing marital and family problems before dementia was even suspected. We all think of Memory Loss when we think of dementia. In fact dementia is brain damage and affects EVERY cognition. Behavioral changes are usually the first clue and we tend to miss those. It is only later when other problems crop up that we have that ah-ha moment.

I think what you are looking for is support and understanding. If so you have come to the right place. I do understand the mental and physical exhaustion that sets in. You have to remember that this is a marathon and not a sprint so you have to pace yourself. What you truly need is more help with your wife. You might want to consider an adult day care during the day so you will feel more secure working. Change your part time care giver to the night time hours so she can deal with the wife and you can sleep. Spend time with the kids and make sure they do understand as much as you know about the disease. You can guide them. You need information and lots of it. Learn all you can about the disease and where you are going with the disease. Never rule out any option. Check out day care facilities, respite care, assisted living facilities, dementia specific facilities, and nursing homes. You can even put her name on a few waiting list. It is better to have your leg work done BEFORE you need it than to be rushing around trying to do it in a hurry. You need a break! It might be a good thing to find a respite care for your wife and take your kids off for a quiet weekend. Do you have family that can help?

What I hear is that you are wearing out and need to know how to make it to the end. The best way to make it is with help

I am so sorry you are in this situation and needed to find us but so very glad you did find us. There is a great group here.... and in some way or the other we are all headed down the same path. Hope to hear more from you

Love, deb

Old 09-18-2012, 09:47 AM   #4
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Re: Early Onset with Young kids

I am also sorry for your situation. Alzheimer is very difficult on all involved and it can be a long good goodbye. The advice in this forum is right on the nose. Plan ahead and read what you can about this disease. I care for my husband who has dementia but not alzheimer. He qualifed for Medicaid so I have a caregiver each day while I work to care for him. If he or your wife becomes unmanageable there are medicines to calm them down but there are also Alzheimer units that may have to be considered for your wife. It is a very difficult decision but your children have to be protected from their mom if she becomes violent or wanders off. I hope you find support and family who can help you. Do you have a church family or good friends you can share this with? We can't do it alone. I admire you to stick with your vows of commitment to your wife. Best wishes to you.

Old 09-18-2012, 11:55 AM   #5
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Re: Early Onset with Young kids

Dear Plodding, I just want to convey my support in a particularly difficult situation. Your situation has much in parallel with my own, with 53 y.o. wife with significant behavioral issues coupled with being very physically capable. The differences between you and I are only that my son is 17 and almost out of the nest, and that to this date my wife remains formally undiagnosed. I understand your frustrations as I also had considered divorce a year or so ago as her erratic behavior became increasing intolerable. As I began to accept that there is an illness driving the behavior, like you, I chose to stay on. I think there are few people who can truly appreciate the difficulties when you have to be partners with someone so young, so physically able, but yet so behaviorally out there. In my case, I had started to try to do and to solve everything. It worked for a while, except that eventually I ended up having a mild heart attack and CAD. So now I am beginning to appreciate the importance of putting myself first, not last. If I go, my son and my wife will both suffer. So it is important that I take care of myself first and foremost. So if I have any advice to you, do not neglect yourself. Put yourself first. It may be counter intuitive to you right now, or you may feel really selfish about it, but it is really important. Be well, my friend.

Old 09-18-2012, 01:52 PM   #6
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Re: Early Onset with Young kids

so sorry to hear this. this is an awful disease. you cant do this alone. eventually your wife will go to a nursing home. you are a caring kind person. there is no room for guilt in this. you do need to worry about your wife and kids but take care of yourself first. you will know when the time comes when you just cant do it anymore. keep posting this board is wonderful. i am just thinking of the effect has on the kids now.

Old 09-19-2012, 06:52 AM   #7
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Re: Early Onset with Young kids

Plodding, I wish you the very best! I found myself in a similar situation a couple of years ago. We own a large business that my husband oversaw and we have a 16 year old at home and a 25 year old in another state. The last couple of years have been an emotional roller coaster ride for me because I didn't want to have to deal with all of it. I now run our business, home (we live on several acres), child rearing, cooking, groceries, cleaning, etc... and some days I'm afraid that something will happen to me and I will leave my husband and my children with all these things that they cannot handle. I couldn't even talk about the disease to anyone when he was first diagnosed because I would just break down and cry. There were days when I read this forum and would just sit there with tears streaming down my face and feeling so alone. The emotional turmoil has stabilized a bit and I'm hoping it does for you, too. Good luck and be well for your children.

Old 09-21-2012, 11:46 AM   #8
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Re: Early Onset with Young kids

my mother has alzhimers, she started showing signs when she was in her early 40's and my sisters and i were children

she was originally diagnosed with early onset advanced senile dimentia when she was 49 but after further brain scans and tests they diagnosed alzhimers

my mums now 65 and shes still alive. she started attending a respite centre 12 years ago during the day and after a year she started staying there for a night or two every month.

my mothers case differs from the norm slightly there as she never recieved medication and has vascular alzhimers so before her violence esculated she developed epilepsy and the doctors felt for her safety she should move into a nursing home.

we visit her there regularly and seems happy there flirting with the male staff

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Old 09-30-2012, 11:00 AM   #9
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Re: Early Onset with Young kids

I'm so sorry & I am in a similar situation. I am 54 with a 12 yo daughter, and an ex-husband with early on-set who is now 58. My marriage had similar problems, I left before the diagnosis, but am now the care-taker, because at the end of the day - my daughter loves him, he loves her and the more time I can give both of them, the better, I am also torn up on a daily basis, if I did the right thing. However it does take a huge toll on me, and I have started therapy (my daughter goes also). My husband ran a sucessful business for many years, lost it before we knew what was going on and never really worked again. Did you wife apply for disability? My husband gets it & my daughter gets a check as well because her dad worked for years & is now disabled. After 2 years on disability your wife will get medicare. It is better to start the process as early as you can.

I told my daughter when she was about 10. I try to answer all her questions honestly but simply. Her greatest fear is that one day he won't know her. My daughter is always on her computer, even if I didn't want her to know something, she can look it up.

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