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I am her daughter. Ive been on the this forum several times and have appreciated the help. My step dad is in complete denial about his roll here. He is not pro active in the application for medicaid. There is no long term care. He has not retained an elder care atty and only because I pushed did he request a PRI from my mom's GP. My hands are tied. She doesn't want me in her house cooking or cleaning so I have to do what I can on the sly. There is no verbal support from him. I feel for him because he has been doing this for a while but his way of handling things is to go work in the barn or cellar or garden now that the weather is good. I came on the scene to help and I can work around her now that I am learning. I am by no means perfect. I slip up on things I say.
We all went for her yearly neurologist appointment (the yearly assessment) and I called in advance and said I am the daughter of the patient and the HIPPA form is not signed but we need to try to get that done and then I and my stepdad have questions for the DR if we could have a few minutes before or after in private(not in front of mom). Well she refused to sign the HIPPA for me to speak to the doctor and the step dad asked no questions. The this appointment was a bust except for getting mom on a low dose of seraquel. There was no admission of the hip pain she has been having or what to do if she doesn't eat and how to handle anger etc.
So I thought about things and finally said to my step dad I am leaving. I was supposed to be here to help.Before I got here my step dad said come and stay rent free (thats great since when do you ever charge your own daughter to stay in your house?) He says I will by the groceries and then pay you what your moms social security check is 600 per month. I told him time and again its not about the money its about getting her dialed in and figuring out how to keep her safe and fed and loved. He wants to go back to work next month (he is 71 this year) but doesn't need the money. I did the food shopping and he reimbursed me with checks (I never cashed them) and then he yelled at me that I spent too much money on food. A big shop every 2 weeks about 170.00 and said that they only spend 70.00 every 2 weeks. Anyway I told him forget about the money that is not my focus and that I will pay for the food. his focus is not on her its on money. Their house is paid for they don't have any major bills and between SS for both of them and SS they are ok.
So when I told him Im leaving he flipped a lid and yelled at me go ahead and bail. As we were having this conversation my mom had started walking out the back property on her own and he did even blink an eye. There is 15 acres and very cold fast moving creek back there where you can't been seen if yo are standing by it. I went after her, but said to him your first priority should be your wife then your family and then your job. He won't speak to me now.
He has now told everyone but me that he quit his job. True? Not true? I don't know. What would you do at this point. I have this codependent issue from the past the is poking its ugly head when it comes to my mom. BY the way I gave all of the checks back to my step dad, purposefully taking money out of the equation. In the 6 weeks that I have been here I have been yelled at, thrown things at me and kicked out 3-4 times (Attempted anyway). Any words of wisdom are greatly appreciated. Yes there are other siblings but they are not in the picture (except the criminal older brother that I recently prevented from coming by calling his parole officer, yet another thing the step dad didn't do anything to help with.

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I understand the 'lost' part as Mom is that way with Dad. Partly because he wanders and she doesn't want him getting too far away, but she depends on him for everything emotional you could think of.!! I guess 66 years will do that to any couple?
The AL will have to have someone to divert the husband while someone else is working with the wife. Not an expert, but maybe a smaller size for the wife's incontinence briefs and then bed liners, too Then if they can limit what she drinks after about 3 pm. Just some thoughts. Anybody else?
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Yes, we were able to get the husband to agree to leave their condo in order for his wife to receive better care, and he needed to be with her as she is lost without him. The adjustment went surprisingly well and we had their sitting area arranged just like home with the same furniture and tv, so it felt comfortable right away.
There is a complication now, however. The wife is resistant to some of the help she needs and while they were trying to get her to take a shower and she was pushing the attendant away, the husband slapped her shoulder to get her attention and cooperate. She did little slaps back on his arms and it is a big deal now with the facility wanting some action plan in place if this occurs again--like separate rooms or separate beds so they won't be so bothered at night when they want the wife to get up and go to the bathroom because she keeps urinating all over the bed, even while wearing something to catch it. The husband doesn't want them to bother them so he can sleep, but can't agree to separate beds and thinks this whole hitting thing is a bunch of B.S. He's never abused his wife and doesn't think these open hands "hits' on the arm for attention purposes constitutes anything significant. Frankly, I agree. So one of the options is to go back to their condo and have 24 hour care provided there by another agency. It's more expensive than assisted living/memory care, but cheaper than having 24 care in the assisted living/memory care unit. They have been happy with the facility and I have suggested that the attendant for the wife just use verbal reminders for the husband to not touch her when they are trying to work with her. Verbal encouragement would be fine, but nothing more. The AL facility wants more draconian measures in place to protect their butts. I don't have any other good answers. The wife looks for her husband whenever he is not with her. She won't go to bed unless her husband is already in it. She really needs to be with him and he is not an abuser in any way, so I am getting frustrated with the "rules" and their need to have unsatisfactory alternatives "ready." Perhaps another reader can provide insight from the nursing perspective why such contact is a big deal.
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Just found this thread. Johnny, did you place your friends in AL? I ask because me and my siblings put our folks into an AL. in Jan. They too, would not go anywhere without the other. Dad had some dementia issues and has not gotten a lot worse, However, Mom was just starting down that journey and the move did cause a further slip, but because he wanders and they both forget daily things, The AL was the best thing we did for them. Now they are kept clean and fed and are around people with similar backgrounds and age. We know they get their medicine at the right time and our visits can be focused on any immediate problem or joy, whichever!! God Bless You!
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Thanks for sharing your story Johnny. I know you have heard this a million times but you are a good friend to care for them as you do. I will stand by until its time.
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JohnnyJ I think you are taking all the right steps to help this couple. they may both show signs of decline with the move but they are also declining so some step has to be taken. It is always hard to move elders from their home but you have the power and have to make the best decisions at some point.
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Johnny, does the AL know that the wife is incontinent? Some ALs are not equipped to address this issue, so please check. It sounds as though wife needs secure memory care. Try to find a conning care community that will do an in home assessment and recommend the level of service they each need.
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Hey Picasso,
I have been in that stage of waiting for something bad to happen also, with two friends of mine for whom I am their POA for their health care and their finances. They have no children or close relatives, so it is only their friends that can help. The husband insists they are fine at home and they do manage to get through the day. The wife has frontal temporal dementia, which the husband refuses to recognize. No one can force them to leave. I was taking them grocery shopping once a week and usually seeing them at least one other time, but some weeks almost every day. We were leaving town for about 10 days so I arranged for Visiting Angels to come twice a week for 3 hours a day. I was amazed at her skill in dealing with the wife and how she was able to get her to do things like wash her hair and brush her teeth. I fully intended to keep using her after my trip, but when I got back, the wife became incontinent and started to wander. I was told she needed 24 hour care, so two different ladies from Visiting Angels are providing that now. It is not cheap, but my friends have enough money to cover things until their long term care insurance kicks in after 90 days. The husband doesn't want to live their condo, but I convinced him long enough for him to sign a deposit check to an assisted living/memory care facility I had researched on their behalf. He has since forgotten this, forgotten his wife is wandering, forgotten she was incontinent, but I am proceeding anyway. It was the wandering and incontinence that was the "something bad to happen" that I was waiting for. I am not sure how this will play out as we proceed with the paperwork and try to figure out if this move is the best thing or whether some other form of 24 in-home-care is better. Both are costly. The AL/MC nurse told me that the husband might have a 30% loss of cognition with this move, so I am wondering if the move is a smart thing to do on his behalf. I want them to stay together, so both have to go or both have to stay in their condo. He has dementia, but no alzheimer's or any other medically defined mental issue. I am wrestling with the "what do I do?" part as well, trying to figure out what is best. My wife wants them out of the condo so we can have a real break from their care, and she does have a point. Our lives have become "taken over" with their concerns. I keep saying that this is "hard, but not a hardship" as I am doing this out of love for my friends, however it is wearing and stressful. Any good suggestions for Picasso and me would be most welcome!
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Thanks for checking on me. APS said there is nothing I can do. I had to leave. I am still waiting on the copy of the PRI to get to me. I don't feel as if I can even call her anymore. Then I feel guilty about that but what do I do. I am in north florida and I had to start over. I don't speak to my brothers but I had to call them and update them...well 2 of them anyway. They are useless when it comes to her, but I thought they should know. So I wait now for something bad to happen.
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Picasso, can you tell us how you are doing? What happened with APS? Did you end up staying or leaving? If you stayed, are things better? We have all been through similar but different situations. Personally, my situation is very close to yours, so I can deeply relate and feel for you. I just saw this post and all the comments tonight for the first time. However, many people care about you. Please let us hear from you.
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Picasso, honey,

Just one woman's opinion, but I think you are doing the right thing. This is impossible!!!! Everyone in this situation needs a new situation: your step-dad, your mom, and you. I am so glad you called Adult Protective Services, the voice of OFFICIALDOM really resonates.

Most importantly, breathe, relax. Stay calm. Now that you are beginning the next phase of the journey, there is no need to panic. Figure out what you need to do each morning, and just focus on that. Stay in the day. One day at a time, one task at a time.

Do not be derailed by your mom or step-dad. Stick with the professionals and do what they tell you to do. Anyone on this site can tell you that it is darkest before the dawn. Everyone is going to be ok, they will adjust (the very words the Agency on Aging used with me just one short year ago, and I believed them!), and you can stay calm and soft-spoken through the whole thing. You can do this. Better days are coming.

Hugs!!!!!!!!!!!!!!!!!! Chin up!!!!!!!!!!
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Picasso, If I could, I would give you a hug and thank you for your efforts, as unappreciated as they are. Talk about taxing one's patience! Getting some in-home evaluation from APS is a good first step. Perhaps they can recommend strategies for further help. Skilled people who know how to handle the difficult stages of Alzheimer's might make an amazing difference. It won't change your mom, of course, but might help with the other issues. Can you arrange for someone one to come and use the excuse that you want to take your step-father out for shopping or something he enjoys? The APS people perhaps could use the alcohol/drug issue as proof of mis-treatment to force the issue of her removal to a safe environment. Just fishing for levers to use for someone else to be involved. Best of luck with your efforts!
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So… His view of the ideal is that he carries on as normal, Mom continues to lead as normal a life as possible (e.g. the occasional glass of wine), and your role is to enable this by waving your magic wand and mending all the broken bits so that neither of them need be troubled by little things like dementia symptoms or basic drug interactions, hm?

At the same time, it crosses my mind: men often do get angry at things that terrify them. He doesn't want to know, perhaps, because he can't face it? I wonder: could you find a male buddy online who can help him understand?

He's being infuriating. Nevertheless, try not to be angry with him if it amounts to being angry with him for being afraid. I don't see how you could not be exasperated, yes, but blame is not going to help.

And the thing is, if you were to do the sensible thing and clear out of there, are you not just going to go home and gnaw your fingernails off worrying about her? I'm glad you've got a team coming in to assess, though - please let us know how it goes.
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What did he throw a tantrum about?
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Im tapping out. Step dad threw another tantrum yesterday and hit the rail with his fist and stomped off. He won't deal with anything. So I followed him around and blew off a little steam (my bad). The thing is after I packed and went into to town for separation for about an hour, I came back and said to my mom "do you know who I am?" she said "what"? I said "who am I"? She started screaming for her husband and I made him say my name and who I was to her in front of her. She was terrified and wouldn't believe anyone. Its sickening what this disease is and Im the one to step up and do the work and I am getting no support from him. It was ok in the beginning but he wouldn't shut up about money. So I took money out of the equation. He refuses to educate himself for her he just wanted me to do it and thats fine but i won't be a punching bag to his bad behavior which in turn triggers her. He gave her wine again last night and she is on seroquel. I am going to call adult protection agency this morning. I have already sent an email. Her sisters would love to have her back in california where she would have no problem getting medical and proper care. I will stay for the patient review instruction this morning and then I am out. I can not give to those who will not receive.
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It's a tough position to be in. Adult Protective Service worker could be a resource and may be able to offer some options.
You both seem to be overwhelmed. Maybe the stepdad just don't know where to start, it's not easy seeing the person you married decline. Some people just aren't cut out to be a caregiver.
Contact your local area agency on aging, they should have some in home programs she may be eligible for, they also have caregiver programs including a support program.
You don't say why mom doesn't want your help, maybe she is also in denial about her illness and abilities. It's too bad, try sitting down with your step father and begin a conversation. Tell him that you know this is a difficult time but that you need to work together in order to make sure mom is taken care of. Ask him what he needs in order to make it work. Tell him what you are willing to do to help out. Also let him know that you need his support with mom if you are to assist, then as a united front speak with mom, tell her you are willing to work together to get the job done. Mom may be more comfortable with a 'stranger' doing personal care while you take care of household things such as laundry or cleaning. Good luck.
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Picasso ... I just wanted to say I understand your pain. I also have the stepfather situation, similar to what you describe, except that I'm very far away. He's 90 years old. They live in a very remote area where my 80 year old mother could easily die if she wandered. In a perfect world she WOULD be OK on her own; but she hasn't functioned at that level in two years. She was desperate to hide her memory loss and furious at anyone who suggested she seek help. Initially he started taking trips without her - ESCAPING for a week or more at a time. He said "she assures me she'll be fine." The first time he left she was knocked off the porch by their dogs and struck her head and shoulder on concrete. The second time he left one of their collies bit her (???) and she wound up in the hospital with an infection because she couldn't remember to take her antibiotics. I called and said I'd drive up immediately to be there when she got out. He could stay away and visit with his son as long as he liked. I also confessed I was worried she'd forget who I was. He said flat out YOUR MOTHER DOESN'T WANT YOU HERE. When I called the hospital for information, they declined because I wasn't listed on the HIPAA forms. A kind nurse gave me some information anyway; she was shocked to learn my mother had a daughter. (I am an only child; but they had my stepbrother on file.) In the past three years - during her noticeable decline - my stepfather has actively worked to shut me out physically and legally. He revised his will to state that his son and mine are in charge of his estate as it relates to her. A nurse friend says this is all a blessing in disguise, as the stress of caring for a NORMALLY difficult woman with Alzheimer's would kill me. When I finally saw her again on his 90th birthday, I was so sad to be right. She didn't know me. One morning she will rise to find him dead; then the real drama will begin.
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This is a situation where I sympathize with everyone involved. Picasso, your stepfather sounds like a good man who is in a situation that is not fixable. He may be trying to keep a semblance of quality in his own life by doing things, rather than watch and tend to your mother all day long. You were probably a blessing to him in giving him a chance to enjoy life some.

To me it seems like the main problem is that you and he are clashing. I don't know the feelings on both sides, but know caregiving for a person with advanced dementia creates a lot of stress. We deal with the stress differently. Some people let the disease process play out, knowing that they can't fix it. I can understand that, since quality of life has to be kept for both the care receiver and giver. The main consideration is finding a balance where the receiver is safe. If you could find some way to get along with your stepfather, it would be a very good solution. You could help each other and appreciate the difference in your caregiving styles. They are actually complementary.

If you are unable to be there, having help come in sounds ideal to me. Your mother may need care in a facility in the future. Until then, I would work with the needs of your stepfather to have some quality in his life while keeping your mother safe.
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Picasso, I hate to have to say this, but it may be at a point at which you call APS, then leave and go live your own life. There are several old sayings about how you can try to lead someone but can't force him/her to do what's needed, and it looks as if you are in this situation. You can't help someone who refuses to be helped. You should try the options suggested by others here, but be ready to follow the suggestion by ferris1 if necessary.
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If this situation is too volatile for you, leave. Protect yourself.
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I must have my head in the sand because I am suprised everyone is suggesting placement for mom even though daughter is there to help. I think I need to go back and read the question again.
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Picasso you came to care for your Mom with the best of intentions and love for your Mom. You are in your Stepdads home by invitation only so if you are told to leave there really is no choice. However your feel the responsibility to see that Mom has proper care. The only way to do this is to involve outside authorities unpleasant as that may feel. Mom has demonstrated that she probably in the later stages of some form of advanced dementia by no longer recognising you as her daughter therefor it is no longer safe for her to remain at home without constant supervision.
Your stepdad possibly thinks he did not sign up for this when he and Mom married and has his head in the sand regarding her true condition. As he is considering placement he realizes caring for Mom is something he can not and does not want to do. You have bent over backwards to help and get things organized but does he resent this and see it as unnecesary interfearance hence he keeps away from you as much as possible. I don't know how long they have been married but they sound fairly well bonded and stepdad clearly still has good reasoning skills although you may not agree,
So in one sentence which I could have used in the first place is "Step aside and let the professionals in and allow them to recomend what is best for her going forward"
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I would call Adult Protective Services so they could do a check-up on each of them. Once phoned, they have to come. I did this for some friends of mine, the husband in denial, the wife with Fronto Temporal Dementia. I explained that someone phoned them, perhaps a doctor or someone who saw the decline in the wife and who was concerned. A skilled person came to do the evaluation and thought the husband sounded very credible about how well they were doing, he kept repeating himself using the same words over and over. After 5 minutes of that, she understood he had problems as well. But, they were being somewhat self-sufficient and there was nothing she could do to force them to go to assisted living-memory care. There are no children or close relatives, so only friends like me can help them. I do have POA for their finances and health care, but can't force them to leave. The best part of their visit was when the APS person asked about how they got their groceries and when the husband replied that they drove, she pointed out that both their licenses were revoked. They acted surprised, but I had been telling them for weeks about this. When she asked the husband what he thought they should do with the car if they can't drive, he responded "Sell it!" Get some money out of it while it's still worth something! So, I was able to get the car keys finally and remove the car to a friend's garage while I secured the title so it could be sold. The husband is still in denial, but at last we have services coming to them. I have begun to have a "Visiting Angel" come twice a week, 3 hours a day, to help with the grocery shopping and cleaning. So far, it's wonderful! She can do things with the wife, that I, as a male, have to stay away from. Perhaps getting some help like this would take some of the burden off of your shoulders?
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Picasso,

Sounds like you are on the right track. If your mom no longer knows who you are, then it is game over for her living at home. she needs professional help. I am glad you are going to a therapist. Believe me, you won't regret it.

Keep in touch on this blog and let us all know how you are doing.

Til then, big hugs.
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Picasso, you and your step-dad both love your mom. You're both worn out. Your local Area Agency on Aging or even social services may be able to provide insight and let you know what care is available in your community. Your state department of aging maybe can help arrange some services but considering the size of your community that may not be much.

GladImHere has some good thoughts. It sounds like there may be a need for placement that will allow for your mom's care needs, you step-dad's need to be out and about working or doing chores and your need to help.

The fact that the HIPAA form hasn't been signed could give you some problems but perhaps your step dad will listen to a third party from one of the agencies. I certainly hope so, since this is not a good situation for any of you.

Please do try to get third party help of some kind,
Carol
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Picasso, often placement while is about keeping our loved ones safe, it is also about keeping everybody else sane. She wanders off on the property towards a stream? That is not safe. Your stepdad has found a facility for her. Are you supportive of his decision. He is telling everybody he cannot provide for her care by himself. He wants to go back to work, but feels responsible for her and realizes that work is unrealistic.

It sounds as if he has given your mother a good life. We all have our limits, as you know. My only suggestion is to support him in this decision, help him in any way you can while being there for your mom.

Has she been checked for a urinary tract infection. These can cause audden changes and decline in the elderly. Once treated they often return to the old baseline.
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Forgot one thing, send a letter to the doctor before appts or hand to nurse when you get there asking if he could address these concerns with mom.

Pain in hip
Can't sleep at night

I honestly think my dad didn't see all of what was going on because he was of the what I call "me generation". Unless my mom said my hip has been killing me for days he would not equate her limping with her hip hurting. I went to doctors appts with notes for years before I felt the need to have paperwork signed and all my concerns were addressed
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Hi - this is so stressful, I'm sorry there has to be these arguments. It sounds like (I don't know the proper name) elder/social services should be called so they can assess and hopefully make regular visits. They also could 'counsel' stepdad on how and when to let you help? Do you think there's any chance at all he'd go to a counselor with you to help mediate your relationship - so you can find a way that he gets help and you get to help? Tell him you know you're playing a part in this, and you'd like to work it out together? Either way, I hope you'll go for yourself for now. Good luck :/ try not to stress too much.
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Don't know if this will help but could you and dad sit down and discuss the things that need to be done around the house, with moms needed included in this equation. Give him the option to pick 1 thing on the list then you pick one thing and then keep going till all chores/moms care is assigned. Try it for a week and reassess. My dad would say to me things like the grass needs to be cut, the car washed and I would very nicely say to him well I am showering mom today and making meatballs and sauce. What is more important, the grass or mom being clean. I would only do this with the understanding that papers be signed to allow you to talk to the doctors. You tell them you are all in but can not work half-a**. Your dad is probably used to being the boss and making all decisions for both he and mom, the whole situation may be threatening to him and he doesn't even realize it. Going in with the attitude, wow you have been doing so much for mom but now she needs more help and more then either you or I can do alone. My dad thought all was fine until I started cooking for them and pointed out that they no longer share one pork chop but each eat a whole one, everyone was wearing clean clothes, mom was showering more often because she was afraid to do herself. If you can come up with some sort of schedule with restrictions (if I am out of the house, you keep your eyes on mom at all times, etc) maybe it would help. With my dad I know it was very hard to let me take things over when I found (medicine not dispensed, etc) and after a lot of trial and error ( and screaming matches and tears) it all worked out. Good luck, I think this is just going to be a trial and error type of thing for you. I would have to remind my dad daily and still do at times that I am not the maid or paid help, just here to help my parents but he needed to pull his fair share too.
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thanks country mouse and salisbury. It might not be as bad if I wasn't out in the middle of nowhere. This town has a gas station, a pizza parlor (bad fake Italian food) a post office, a cafe and a bank. Oh yeah and like 4 or 5 churches.
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HI Babalou, they both wanted me to come but me being here, now mom doesn't know who I am. She knew when I first got here but after a few days that was it. I just became some lady living in their house. This is an awful position to be in. I am going to need a therapist of my own to get through. I had a meeting with social services yesterday. The PRI is supposed to be today and then that report goes to the facility that he wants to put her in but she is not really ready for that. We are in the in between and now no communication. He is acting like a 5 yr old child and its truly frustrating.
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