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    • CommentAuthorpowdereast
    • CommentTimeJun 14th 2016
    I don't know how many people are out there with school age kids while trying to care for a spouse with EOAD. But I find it very difficult to balance it all. The kids have activities before, during and after school and that includes weekends. My wife(50) is in stage 5/6 and it is almost impossible for her to participate in the frantic activity (we have 5 kids) that goes on. I feel increasingly guilty because sometimes she is so alone. I attempt to have people come by (you learn who the true friends are), have help during the week but i can't help but think she will ultimately be better off in some daycare or ultimately LTC facility.

    I see lots of blogs about people taking care of people etc.. but is there anyone out there dealing with school age kids and an EOAD spouse?
    I don't have any experience in this area but hang on...others on this site have had and will be along to share with you. I cannot imagine dealing with this while having children still at home! Bless you! One of our folks here named Sandy has a blog that I follow. It is Jesus and dark chocolate. She has 2 kids that were still in school and very active and involved. Google it.
    • CommentAuthorCharlotte
    • CommentTimeJun 14th 2016
    There are spouses here still with children at home or did and had to make some tough choices for the sake of the kids. Others were able to deal with it. And a lot depends on your financial situation. Never any easy solutions.
    • CommentTimeJun 14th 2016 edited
    I think that 3 jobs (father, wage earner and caregiver) are 2 jobs too many. You can get help with the one of caregiving by placing your wife in the best facility you can find and afford.
    Your wife is not going to get better. There is nothing you can do to change this.
    Your children are already minus one parent. Your role as provider is essential (no one else is going to do it), and you need to be in good health and not strung out by the impossible demands of your present situation.
    • CommentAuthormyrtle*
    • CommentTimeJun 14th 2016 edited
    powdereast, So sorry to hear about your wife's untimely illness. This disease is especially cruel when it hits families with children still at home. A member of this site, paulc, has a son who is now in college. We once had a member, Christine, who had two young sons. Her husband died suddenly. There may be others that I just can't think of now.

    I agree with mary75*. The children are the ones who have their lives ahead of them and who can be harmed by this situation. Their welfare must come first. Your wife is not going to get better. If you put her in day care, she will not be alone, and it would be a good transition to LTC.
    Yes, I agree with Myrtle and Mary.
    • CommentAuthorxox
    • CommentTimeJun 16th 2016
    Our son is 19. My wife was diagnosed with FTD in 2008 but it is clear she has had it almost all of his life.

    While my wife is relatively high functioning (though she has lost a lot the past 2 years) it was essential to move her to an ALF for my son's sake (and mine too). She was absorbing all of my energies, my son was shortchanged in addition to losing his mother. It was obvious he was suffering. Perhaps I should have made this decision earlier.

    Her 2nd ALF provides her with the structure and care that she needs (at home she would start screaming about all of the chaos if a dump truck drove by the house).

    Kids come first. I am wondering if it is safe for your wife to be home alone. If it is safe I suspect not for much longer. We had in-home care for a few years but it didn't solve the problems around when I had come home from work nor my son's mental health (though it ensured that he didn't become a caregiver).

    But there are no hard and fast rules. I know people who did well with their spouses home who had younger children the entire time.

    When it comes to placement in long term care, it is more of an issue of when are you ready for it and not when your spouse is ready for it. Many people find after placement that they should have done it sooner.
    • CommentAuthorpowdereast
    • CommentTimeJun 21st 2016
    Thank you all for your comments. Working through all of this is not easy as you all know. I am just trying to distance myself from the wrath of people who don't know what its like. When i make the decision to move her i think i will be on the most "hated" list. Thanks again!
    • CommentAuthorLindylou*
    • CommentTimeJun 21st 2016
    No one, I mean no one, who has not been through this disease, should judge. And anyone who has been through this disease will not judge. The decisions you make, are the decisions that you believe are best for your situation, best for your children and yourself and your wife. We all do the best we can with what we are dealt.
    • CommentAuthormyrtle*
    • CommentTimeJun 21st 2016 edited
    You are raising 5 kids and caring for a wife with Alzheimer's, yet people who know this are prepared to inflict their wrath on you and put you on their hate list? In such situations, I find the best policy is to go ahead and do what you think is best and if these people should rightly be notified (for example, if they are your wife's family), then notify them, but stop there. I really mean this. The only way they will be able to judge you is if you offer yourself for their approval. The best motto in dealing with people like this is: "Never complain and never explain."

    As for the true friends who come by on weekends, it's going to be increasingly harder for them to give you substantial help as your wife's condition declines. These are the people you can rely on to understand and sympathize and to help you with the transition, which is sure to come sooner or later.
    Powdereast, I was one of the (lucky?) ones who didn't have to face the placement decision, plus we had been able to pretty much live our dream life before AD entered the picture, but I think you might do well to try to find a copy of a book written by Frank Broyles, former head coach at the University of Arkansas and take to heart his message about "the need to take care of the quarterback". With five kids still depending on you in one way or another, you're the quarterback and the team is your responsibility, and placement would certainly be defensible to any right thinking person.
    • CommentAuthorRona
    • CommentTimeJun 22nd 2016
    Powdereast don't second guess what people will think you may have more support than you realize and for those others they are not living it and have no idea and no right to criticize. As mentioned above you have to take care of yourself. If others cannot see that it is their problem. Good luck great words of advice but still hard to do. I am waiting for a placement for my wife and I know all of the feelings I am going through. Even though I know the words and I know what has to happen for both our sakes it is hard to put the feelings of sadness and guilt in it's place but I am getting there. For me I have been very open with close friends and relatives I have told them that placement is just around the corner and have gotten a great deal of support. You never know Good luck.
    • CommentAuthorCharlotte
    • CommentTimeJun 22nd 2016
    You know what her illness is doing to the kids and you. If some of the kids are old enough to understand and be able to add some input, talk with them. Explain why you are thinking of doing it. It will be hard on you all no matter which decision you make, but remember they have their whole future and what happens now can affect that. Your health is number one to consider. Everyone is depending on you. And if you decide to place her, your job is far from done. Advocating can be a lot of work too. The big difference I hear from those that have gone before, instead of being a 24 hour caregiver, you become husband and advocate.

    Socialization is important to many. My husband started day care a few weeks ago. I enjoy the time alone (feels like when he would be gone to work) and even though he says he just sits around, the reports are that he walks around talking with other, has them laughing including the staff and a joy to have. The bus drivers are always laughing when they drop him off. I now notice Tuesday and Thursday when he doesn't go he seems more bored than before, so he is benefiting from it.

    They call it day services but I tell him he is going to the senior center to hang out with other seniors. Your wife being younger can cause a problems since most are older. My sister-in-law was diagnosed at 55 and went to a day care at Easter Seals. She had a blast and had a whole collection of the art work she did there. She would tell us she was working/helping out there which was fine.
    • CommentAuthorpowdereast
    • CommentTimeJun 23rd 2016
    thank you everyone. PaulC , when you mean high functioning how high is high? Just trying to compare baselines. thank you
    • CommentAuthorxox
    • CommentTimeJun 23rd 2016
    By high I mean compared to others where she lives. While there are many things she can't do and is incontenent she can do many things for herself. She can dress herself with easy to put on clothing but she needs someone to pick out her clothing. She can eat without assistance but someone should cut up her food. She is mobile and enjoys activities. For a while she did art and music but can now only do art if she is given direction. When she was at home 3 years ago she didn't have these problems but needed a structured life and wasn't able anymore to participate in life. She wanted to garden but actually doing gardening was beyond her. 2 years ago she was still doing jigsa puzzles, though she insisted on hard ones, a spokesman ear ago she gave up doing them, as she gave up using her iPad and camera.

    What I want to emphasize is that when she moved into an ALF she hadn't lost any ADLs but showed very poor judgement and had lost much executive function.
    • CommentAuthorpowdereast
    • CommentTimeJun 27th 2016
    thanks paulc
    • CommentTimeJun 28th 2016
    The ONLY Alzheimer's organization that even discusses the situation of children with ALZ parents is the Alzheimer's FOUNDATION. (not the 'Association')

    They have a branch called AFA teens. There are message boards and information all aimed at this specific victim of ALZ.

    A teen with an ALZ parent is a unique as an ALZ spouse and they need to be with their own kind just like we do.
    Send your kids there to check it out.
    • CommentAuthorpowdereast
    • CommentTimeJun 29th 2016
    what a great idea. thank you very much. i can't express the pain and anguish it puts me through watching them.
    • CommentAuthorHeidi
    • CommentTimeJul 27th 2016
    It makes me sad knowing the kids are losing him a bit more every day and won't have a father there for them in the future. The good memories of all the fun things we used to do as a family are sometimes overshadowed by the past years in which my husband started changing. It's like three separate lives, the time when everything was normal / the years when my husband began showing symptoms / and now coping with the horrendous diagnose. It's like living life on a tightrope and trying to avoid looking down at the huge crevice below. Trying to focus on the positive (a good day or trip) is sometimes so hard. The future seems pretty scary a lot of the time.
    I haven't really been on the site in quite a while but I share your situation and felt compelled to share my story. I had 2 children (of 4) still at home when their dad was diagnosed just after turning 58 years old. My son was 14 and is now 17. He will be 18 soon and a senior in high school. I finally made the decision to place my husband at the end of November last year ('15). I had someone come in the house to care for him while I was at work for about 5 months before that but he was becoming increasingly agitated and was very non-verbal. There were times that me and my son didn't really know what kind of mood we would come home to and that was scary. Placement was probably over due and it was definitely taking a toll on my son who caught the brunt of it. My daughter was only home a year and then went away to college. My son did not want to bring his friends around because he was embarrassed and/or didn't want to tell people, explain it, etc. That's not what you expect to have to tell people about your father when you are in high school. I didn't have much help from friends so it was mostly on me and my son. What I can tell you is that while I had enormous guilt and stress about doing it, the difference it made in my son was instantaneous. They don't tell you what they are feeling because they know you are already stressed and don't want to put more on you. I can't say that your children are like that rather it is what I experienced. My son still has a hard time going to visit his father because he has changed so much and he does not have the ability to talk and his ability to comprehend you when you talk to him is severely limited. I haven't had an actual conversation with my husband in about 3 1/2 years. For my son, it was important and extremely helpful to have some normalcy in his life. It was also important for me to relieve some stress because I knew I couldn't do it all. My son has become closer to me and very protective as he knows that I'm really the only parent he has left. His father has progressed to the point that he's not his father anymore... and he knows that his "father" is not ever coming back, even though he is very much still alive. You have to do what is right for you and your family. I was blessed to have insurance to be able to place him. I was blessed to have found a place that was a good fit for him with people who care for him. It is still very hard but I know I did the right thing, especially as he is getting worse. I know that I could have never cared for him here. And the stress would have been too much for us. I can tell you that I talked to all 4 of our children about placing their father before I actually did it. They all knew it was the right thing to do and have been supportive on that front ever since. I have 'heard' from some of his friends crap about placing him. At first, I let it bother me but then I said to hell with it. They haven't been around. They didn't visit him the 3 years he was home and what they thought didn't matter. As so many on this site have said very eloquently, unless you've walked in our shoes for even a day, you have no idea what it's like or how it feels. Listen to your gut and do what you think it right for you and your family. You are the glue that holds everything and everybody together, so what you think and feel is the best decision is the only one that matters. I wish you all the best. I know how difficult this is.
    Thank you Sass,

    I cannot agree more. I have made the decision and fortunately i had been courting a place for over a year and they actually kept an eye out for us. I will be placing her in about a week or so but trying to get so many things in order, none the which is the kids going back to college and school .

    I have tried to prepare myself for the on-slaught of comments but as you say "where have they been"? The good news is my youngest daughter thinks the place is the four seasons. It is actually an assisted living facility with an alzheimers unit. I have to admit it is rather nice and they have happy hour every day at 5. I was thinking maybe i would enroll.

    Thanks for your advice and counsel. Its certainly not easy but your right, the kids are the key.

    ah the blowback is happening. until you are in the game it does not matter. how do you explain loneliness even when your married.
    • CommentAuthorRona
    • CommentTimeAug 5th 2016
    Don't let it get to you powdereast for me it felt like I was being guilted by one comment from my sister In law and it bothered me. but by far all other friends and family were very supportive. Funny how just one comment can bring up those feelings in you? I told her it felt like she was guilting me and I know I have Done my best she knew it and quickly backed off. I have been feeling a great deal of frustration with my brother in law. He knows what we have been going through, drives right by here all the time but all this year has never stopped in and never even called leaves to my sister in law and yet he is Lisa's brother. However I realized he is not important And the last thing I need to do is waste my energy being angry at him it is his loss.

    Loneliness yes as I said to someone today Lisa looks great, she basically is in good health but the Lisa I married is no longer here.

    Good luck and remember you are doing what is best for your family, your wife and for yourself.
    My advice would be to do what you know is best for your children, then for your wife. I had a SIL who was an absolute witch, afterwards saying she didn't know that Alzheimer's was involved. Why do people have to be so mean? My two cents worth ... just do what your heart tells you is right, and that you are doing it for the right reasons.

    I think it was a great idea to try to explain the situation to your children. If your wife could think rationally I think she would totally agree with your decision. You are, after all, trying to do your best for her, too.

    This is a very hard road, and I can't even imagine how you manage. God bless.
    I hope that you are doing ok since placement. I know it is really difficult. I had so many thoughts that ran through my head the day I did it and the days following. So that he would have familiar things in his room, I moved several pieces of furniture from our home. Afterwards, my house felt empty, my bed was empty, I was empty. Then I had some days of relief because I didn't have to worry about coming home from work and finding him agitated and angry at me, or worse, my son. I could finally relax and not walk on egg shells anymore. But I missed my husband terribly. The man I married, not the person this disease turned him into. That person was a stranger to me. My loneliness is worse now as it has been 8 months since placement. I visited today and I'm not sure if he knew it was me, his wife, or just that lady that comes to see him and who takes him outside and rocks with him in the rocking chairs on the porch. The best advice I can give is just take one day at a time and don't let anyone make you feel bad about your decision. They don't know what you and your children were going through. Our children need our time and attention too and we have to balance that along with caring for our spouses. Sometimes the help you need comes in the form of an Assisted Living Facility. And that's ok.
    • CommentAuthorpowdereast
    • CommentTimeDec 15th 2016
    Thought I would post an update. It has been 4 months since i placed my wife in the dementia unit. Ironically, all the people that did not ever come to visit her regularly visit and take her out now.

    Her condition has slid quite a bit but she is able to put a good face on for short periods of time. One thing that is kind of new for me is the amount of physical breakdown that has occurred. Things like walking, sitting, holding a cup and the worst of all up and down stairs. I think to many people think Alzheimers is only about memory and it is so much more. And I assume that it is person dependent and clearly tied to where it starts in the brain. That has been a wake up call for many because they thought it would be that she would just forget.

    Kids are actually doing very well outside of people expecting them to be singularly focused on their mother. People can't understand why a 13 year old boy does not want his alzheimer's mother at his basketball game. For some reason all this has caused everyone to focus all negative energy on the kids and I.

    The good news is that there are a few that understand the issues completely and are very supportive. Her family, not so much.

    For me, I am trying to stay focused on the kids, being as healthy as I can and keeping my job. All falls apart if that goes away. 5 kids and an alzheimer's wife is not a script I trained for. Logistics is the hardest part, it is just physically impossible to be everywhere.

    The polar vortex may clear the air so I wish everyone happy holidays.
    • CommentAuthorCarolVT
    • CommentTimeDec 15th 2016
    Thank you for the update. May the number of supportive people increase for you and your kids. Happy Holidays to you too.
    • CommentAuthorRona
    • CommentTimeDec 15th 2016
    Good luck powdereast. I was a single parent with two young boys and a demanding job when I look back I think how did I do everything I did. That was nothing compared to your situation. My hat goes off to you tough decisions tough times but you are right you must stay strong and it certainly seems like you are.

    I am sure one day you too will look back and wonder how you did. Hang in there and have a wonderful Christmas. We are here for you.
    • CommentAuthorOnewife
    • CommentTimeDec 15th 2016
    Powdereast, have you given serious thought as to what your wife would want? The wife and mom she was before the early onset alz. If her and I are anything alike I think she would want you to place her and go forward and raise 5 amazing people. I'm assuming she loved her kids immensely, like us you had a big family. My crew are now young adults and I'm still protective of them. I'm not trying to paint myself like mother of the year. I was not perfect but no way in hell would I want my young kids to give up so much for me. Raising kids is tough but I would think near impossible w a wife w alz. Take care of yourself so you can be a great dad!
    • CommentAuthorpowdereast
    • CommentTimeDec 20th 2016
    Thank you all ,and one wife, I have given much thought to what she would want. We live in a very small town that is very inter-connected and unfortunately everyone thinks they can save her. I believe deeply that she would want the kids to have the best life possible. Unfortunately, ever since I made the decision to place her all of sudden everyone is mother theresa. They judge the kids and I as if we should be putting everything else aside and just focus on their mother/my wife. God know it is sad but the things that were happening to my kids was over whelming. Fighting, acting up in school, aggressive with each other etc.. Once i placed her and got them refocused its like a new world for them. And for her, now her friends ( i think they are) visit all the time.

    I know you all know this but my emotions go from the top of everest to the bottom of the Marianas trench in nano seconds.

    It is all so sad but as we all know, unless you live with it you don't know it. Maybe i will not get through the right gates but I do believe i have given my kids the chance they need.

    thanks again everyone, Merry Christmas and Happy Holidays to all.
    • CommentAuthorCharlotte
    • CommentTimeDec 20th 2016
    Not sure if you know about it, but on the home page there is a link to a group just for teens. Might be something your kids might be interested in.

    It is good that things are settled down with the kids, more of a normal life ( as much as possible). Yes, people need to back off and trust you to do what is right for your kids, your wife and you.
    • CommentAuthorJazzy
    • CommentTimeDec 20th 2016
    Powder east

    I get the impression from your info that your wife would approve of how well you are caring for your children. Lots of folks have lots to say since they didn't live in your situation.
    This is just my own opinion but from what I hear your being a great Dad. One of my counsellors had a saying for us caregivers" if friends and family think they know your life better then you and get in the way of your peace of mind, boot them to the curb and keep moving forward" At first I thought he was joking but I soon found out he meant every word.
    Keep doing what is best for you and your family.


    Hi Powdereast--Wishing you and your family blessings and peace through the holiday season. And Jazzy could not have said it better--I agree with her 100 per cent.
    • CommentAuthorJazzy
    • CommentTimeDec 21st 2016
    I know that family and friends might sometimes think they are helping but really unless you live I the home you have no idea what that family is living with.

    I spent an hour and a half with a counsellor yesterday because I have such a difficult time with my DH. Family and friend are out of sight now as they have realized that it is not good around here. So cut and run. In a way it is good as I don't have to deal with their no it all attitudes but on the other hand it's Christmas and I will be alone except fot lunches on Christmas Eve and Christmas Day when I go to the residence with Kevan.

    Powder east make this a good holiday for your children and for yourself.

    Merry Christmas

    • CommentAuthorpowdereast
    • CommentTimeDec 21st 2016
    thanks Jazzy,

    if i kick them i might really kick them!. I know that they think they are helping but god knows they say some stupid things that can make my wife incredibly agitated.

    Anyway, great holidays for everyone and i hope there is some resemblance of stability and calm for all.
    • CommentAuthorsamismom22
    • CommentTimeDec 29th 2016
    Hi Powdereast, I am late to jump in this discussion as I have not been around much. I feel for you, my kids were 13 and 15 when my hubs was diagnosed 6 years ago. The kids are now in college and my husband is placed in skilled nursing and we just applied for medicaid. It's a crazy journey for sure with few people that truly understand our situation. I am here for you if you need someone to talk with. I know it's all rough. I do have a blog about coping with all of this. Here is the link.
    You can copy and paste it or google Jesus and Dark Chocolate.
    Hang in there and Happy New Year to you and the kids!