I cared for my mom with Alzheimer's the last 6 years. She lived with me for 3 years with no help from family! Only horrible accusations from wicked in-laws. I have 2 brothers but they have not been much support because they feel they are in the middle of my and their wives differences in how to care for our mother. I had to put my mom in an assisted living nursing home about 8 months ago. She did not want to go and is still wanting out! Last summer I visited about 4-5 times a week because she was not adjusting well. They have her meds sorted out now to calm her but she is still seeking to get out! If she keeps up she will have to move to a locked down facility that specializes mostly in Alzheimer’s. She has a wristband doors are opened in the day but locked at night. I am debating on looking into more of a home care facility that is locked at all times. Just got her accepted on Medicaid 3 months ago. I am a single mom with a 14 year old daughter so I have had to slow my visits! She has been seeking exits again and the staff says she does better when I visit! They understand my situation and are trying to keep her occupied but I feel so guilty not being able to visit her like I would like to! My business has suffered tremendously! My stress level and body are suffering! I feel so spread thin! My daughter and my mom have been my top priority for 8 years! Moving my mom was so tough she is only 75. I am needing to build my business back up again and focus on me first! Just finished at dentist and have my physical and mammogram appointments scheduled after 2 years late. Any words of wisdom or advice on getting over some of the guilt of leaving her? I know I have done right and moving her was necessary but still feel horrible! What a horrible disease!

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I can say that having peace with my LO being in long term care came about once she got settled into a place that met her needs. To me, that brought me peace, as I was always worrying about getting by to physically see her. It really got better when I knew that she was getting the care she needed.

If your mom is trying to get out of the facility, that may be weighing on your mind. I wouldn't resist recommendations from professionals as to what level of care she needs. Once my LO transferred into Secure Memory Care, she seemed to relax. She became more content and it was a load off my mind. She seemed to sense that she was with other residents like herself. I suspect being in a regular AL made my LO uneasy, because she could not keep up or relate to them due to her dementia. MC made a huge difference, as did the correct medication. My LO was only 62 when she was diagnosed with significant dementia.

Good luck with your business venture. If your mother were thinking clearly, she'd want all the best for you and your daughter.

You must take care of you, else you are going to break. The horrible disease of early onset Alzheimer's must be in the hands of this facility. I commend you for caring on so long taking care of your mother as you have -- huge hugs. Others in the family can say what they will with their acrimonious comments. You can hold your head high, knowing that you've done exceptionally well. Your 14 year old needs you now more than ever before.

Have you considered Hospice care?  This is just another level of care.  She would have her own nurse come and visit; she would have aides that would come twice a week as well as volunteers to sit with you, talk with her and take her to activities.  I've been in your shoes and you have to take care of yourself.  Please call a Hospice agency to see if your mother could qualify for Hospice Care.  Medicare picks up the cost - and they also pick up any incontinence supplies you may be getting yourself.

I think the first thing you should do is reflect on how you have cared for your mother, whose dementia was comparatively early onset, over all these years. When you look at all you have done, if there's any justice you should feel proud of yourself. "Horrible" disease is putting it mildly: it is utterly vile and wreaks chaos in everything and everyone. And yet here you are, still standing, and your mother is safe and well cared for and well set-up for continuing care.

I don't want to go on about it because I think you then need to do your best to stop caring what your SILs think. Their model of care, presumably, involved regimenting your mother's life to "cure" her gambling habit and at the same time meeting all of her living expenses; never mind her quality of life, never mind the financial realities, they were very clear about what *you* should be doing. And did they offer? No. Back seat drivers of the worst kind. Dismiss them.

The thing is, though, that they don't matter but your brothers do. Your brothers are your mother's children. Is one of them still involved through his POA? What are their excuses for not visiting their mother now that they can easily do so without bringing their wives into conflict with you? Remind them of her visiting hours, with any notes about access, parking, meal times or good times of day for her that you think would make for a successful contact. Say, for example, that you go on Saturday mornings and Wednesday evenings - they could share Friday nights and Sunday afternoons, couldn't they; or they could make it the second and fourth Sundays of each month, or whatever. What's stopping them?

So, forget the trouble caused by your SILs over the last few years, focus on what you would like your brothers to do now, and ask them nicely. The worst that can happen is nothing - which would be disappointing, but hardly an additional problem.

There really isn't any more you can do for your mother at this stage. Whether you wreck the rest of your life or not, that horrible disease is going to do what it's going to do; and everything that could be done to protect her from its ravages you have already done. Visiting more often won't make her less anxious to leave, or more understanding of her own situation, and it won't slow the disease. Do not make sacrifices that will have no benefit for the person you're making them for.

Don't worry about the staff's remarks that she "does better" when you are there. Of course they encourage you to visit and praise your input: that's about building good relationships with their residents' family members. It is not intended to make you feel obliged to visit more, or guilty if you can't maintain the frequency, and if you were to ask them about it and explain your anxieties I promise you they would confirm what I've just said. In fact, re-reading your post - they've already told you that, haven't they? They know a caring family member when they see one, don't you doubt it.

Your 14 year old daughter... She's 14. You have less than four years of her childhood left. She really does need you, NOW, and she needs you healthy, confident and solvent, in that order.

You have coped for nearly a decade with overwhelming difficulties, and you have done *brilliantly*. You feel horrible because what your mother is still going through is horrible; but when it comes to the part you've played in protecting her you should, I repeat, feel proud.

This is hard for you but you can’t be everything to everyone all of the time.

Your priorities are correct so have faith that your decision is the correct one for you & your daughter.

Your mother is cared for. You assured that. Your mother is where she should be. You are not abandoning her.

Your future is your daughter and assuring she is being taken care of now. You have to devote the time back to your business to get it up and back on track.

Stick to your plan. You’ve come very far already.

Yes I know firsthand the guilt you must be feeling and how wretched you feel when you have to leave your mother somewhere with strangers who may not care for her as well as you would.

But deep down, you know your mother would want you to be able to work hard to create your own business to better yourself and use your talents. And mother knows as well what it takes to raise a daughter and how you must ultimately put yourself second to raising your daughter correctly.

Your mother, if she was well, would work to empower you to be the best you can be.

Its difficult to do so but I had to learn to compartmentalize my guilt or I couldn’t move forward. So when you leave your mother after a visit close that compartment and move on (after a good cry sometimes). It’s a constant struggle. But your focus is rightfully on your own daughter and building a good life and giving her loving home for your little girl so she can have good childhood memories.

Good luck & and hang in there!

Dear Tammy,

It is in fact a cruel disease for the person suffering from it and their loved ones. It changes everybody’s life.

I don’t think there is any answer that will miraculously lift the weight of the guilt you feel, but there is something that might help you.
Pretend that your healthy mom is there, and you are able to go to her and ask her this exact same question you’re asking us; present her with your guilt, talk to her about how exhausted you are and how MUCH you love her! tell her she and your daughter are your priorities, have always been, and that you’re really trying to do the best you can to save what you can from this tremendously difficult situation.

Tell her you know you need to take care of your business and your finances for your daughter, for her and for yourself. Tell her you want to be a good daughter and you feel you are failing because you cannot even go see her as frequently as you would like...and ask her: what should I do mom? how can I stop feeling like I am abandoning you when I’m just trying to pick up the pieces? What should I do?

Now, you, who knows your mom, your healthy mom, what would she say? What would she do?

I think she would suffer a lot seeing you suffering, and it would be her who would feel guilty! I think she would encourage you to take care of YOU, for her. Because she cannot take care of you anymore, she needs you to do that for your daughter too. She would remind you that we owe it to ourselves and to those who love us to remember we have different roles in life, not only the one of a daughter, and by the way my daughter, Thank you! Thank you for taking care of me, even when no one (not even me) recognized your efforts. It has not been easy, has it? And what lays ahead won’t be easy either, therefore -she would tell you- find balance in your life Tammy, honor my life living yours, for your own good and for my granddaughter. She would say, I cannot help not understanding things as I used to, but this I understand: I am blessed to have you as my daughter, I am thankful for all you have done, more than many would and have done; please live some of the life I wanted for you! free yourself from guilt because when there is love, there is no guilt.
I love you and your presence does make me at peace, because you are my only link to the life I used to have, but you are also the only link to the life I want you to have! Live it because you as every person, are entitled to it.

When you come see me of course I will be happy and it will be very special! But when you cannot come, please make sure YOU are happy and making something special out of your life!

That is the advice I’d take Tammy, the advice any mentally healthy mom would give to her child. And no guilt when there is love!

A warm and sincere hug!

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