My lost world.

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I am so angry, so sad and frustrated at the fact that my mother's dementia has worsened. She was diagnosed 3 years ago and watching her deteriorate right before me has made me very angry. I am angry because I cannot reach her. I am angry because we no longer share life. She is into her own world and I am not included. I have lost many years of beautiful memories, I have lost the smile she once possessed when she knew I was coming to see her, I have lost the connection that kept us close, I have lost her entire world to this disease which has completely stolen her away from me. On 8/13/2013 I had to call EMS and have them transport my mother to the hospital against her own will. She has been wandering the streets at 2 and 3 o'clock in the morning hallucinating and thinking that her night were days. She has become a hoarder and has furnished her apartment with nothing but garbage she finds in the street. I have tried to clean up her place, but when attempt to do so she becomes agitated and combative, at time verbally and physically abusive toward my brother and I. Through all of the hurt and turmoil of losing her to this disease, and as much as her dementia progresses, and as much as people tell me that maybe it's time to place her, I cannot turn my back on her. She lives in NYC and I live in Ct. and I am working on bringing her up with me so that I can take care of her until the end of time. Last year I did bring her up to live with me and she was very adamant about returning to the place she only knows as home. It is her environment I do understand, but as of today, as of now, I am her mind and have to make wise decisions because she is no longer in control. So I have decided to sacrifice my life, my world so that I can make things right by her. I am now living with my fiance and about to get married, but our life is going to have to be put on hold so that I can take care of the woman who birthed me, the woman who once sacrificed for me. I could never live with myself should I do otherwise and place her in a nursing home. It's sad whenever I look back to embrace the love, the connection we once possessed because in her mind it no longer exists. She does know who I am, but at times she will mix me up with a sister of mine who took advantage of her illness until I became her power of attorney. I now control her finances. I pay her bills and make sure that she has food. On the other hand my sister became a defalcator and took advantage of her assets. I feel so lost without my mom. She is still her in presence, but she is not here mentally and I am saddened by it all. She is very agitated that she is in the hospital for evaluation, but she is in a safe place where she can not do any harm to herself. I will be picking her this weekend. My heart goes out to everyone who's life has been touched by this illness. I continue to pray for a cure someday. This entire different world has taken so much of myself and whether I accept it or not, it will continue to knock on my door so I am going to do whatever I must to give my mother the best of my life..

9 Comments

No No No NO! Yes, grieve for your mom who will not ever again be the mom you once knew, but those memories of who your mom really was and is inside should not have to be lost to you. Putting your fiance and your own life totally on hold does not honor her or help you. She didn't sacrifice for you so you should lose everything she ever wanted for you, like a future. Placing someone in a good facility is NOT abandoning them especially when that's the best option. That 911 call may have seemed like the hardest thing you ever did but it was absolutely the right thing and the only thing to do. She can't help that she has lost all judgement and reason and that her memory is going too, any more than you can help grieving and being angry at your loss. You will obviously do your best to care for her, but your role can also be to make sure she has care that you do not devlier personally, because typically in severe dementia one person can't do all the care 24-7-365 anyways. And do NOT deliberately punish yourself by depriving yourself and your loved ones just as a shortcut to avoid guilt and grief feeling. We ALL have those feelings if we care about our loved one going through this. If she can know nothing but that she is cared for and in a nice place and not a pile of trash, that may be all you can give her; that place might be your home, or an assisted living where you can visit often, but "a safe place where she cannot do any harm to herself" is what counts. It is so hard to lose your mom before she has physically left this earth, and to take over making decisions for them and keeping them safe, and we never do quite adjust to being the one in charge of the person who used to be in charge of us. You can't bring her back the way she was no matter how much of yourself you give or how much of your life you give up. Keep those things in mind as you decide how to handle things. DON'T just take her home from the hospital assuming that your passion for caring for her will somehow make it all work out - it won't. TALK to your fiance, don't abandon all your plans. If I was the one needing care, and I could suddenly understand that a daughter of mine broke off an engagement or even gave up her education or career - all the things I ever paryed for for her and paid for for her - to be my caregiver, it would devastate me because as a mother I put all my love and hope into my chidren building lives for themselves and for the future generations to come after me. If you do take her into your home make sure you have HELP and SUPPORT. This is not about your wishes and your guilt - this is about a woman stricken with an awful disease who now needs care and safety, that the current state of medical knowledge cannot prevent or treat very effectively, and who will in some ways find herself angry at the very people she cares for most because they can't fix it either. I know this is harsh, but she will be angry at you and blame you just because you are there adn trying to make her do things she does not want to have to do, and she cannot understand otherwise. Having other caregivers besides yourself will be more helpful to Mom than you can imagine right now, and even more critically it will prevent you from burning out and losing everything you ever had, which is not something that anyone wants or needs to happen. Make wise decisions for her AND for you. She can't understand that the world she once knew is lost, but you can - and you can make the best possible or the worst possible situation out of it depending on the decisions you make. Don't let your emotions and your guilt make the wrong decisions for both of you. BREATHE. Think. Cry. Pray. Decide both lovingly and wisely - this is what you are called to do now. It will be a lot of work whatever you decide, believe me...you've already done a lot though.
Serenity, Vstefens,did a wonderful job setting it all out for you. Please please rethink your plan of action. Read though the posts on this board and realize that there is a lot of wisdom shared here. No mother would want to be that kind of a burden to their daughter. We want to see our children blossom and fly high and free! You can do your best by your mother by lovingly choosing a great facility and supervising her care. Even with 24/7 paid care in a NH, you will still feel like there are days that are overwhelming...it's just that hard. Visit often, enjoy what moments you can and feel as if living the best life you can for yourself is a gift for your mother!
My Dear serenity 59. I have been where you are now. I understand exactly how you feel. Your words are the very words I spoke and wrote in my book Memoirs of a Caregiver. I wrote all about my experiences over the past ten years (and still counting) of taking care of my mother, two aunts and a cousin (still living) all stricken with Alzheimer's. I commuted (and still commute) to Detroit to care for them and see to their business, sell houses, go to court, file paperwork and what not. I retired from my career before I was ready. I also brought my mother home with me. She didn't know how things worked or where things were, it was heartbreaking. I tried everything before my decision to take her to assisted living. What I want to share with you is this; in an assisted living environment, she will be well cared for and safe. Bring her to your city so that you will have access to her daily and can check on her daily. You will be amazed at how much better you will feel, (yes, the guilt will linger) but you will be able to have some of your life back and you can still start a life with your fiance. You must consider his feelings too. Not all men are anxious to accept or take on the responsibilities as great as this. My mother was adamant before Alzheimer's consumed her that I should live my life. Spend as much time with her as you can, look at your photo albums, enter her world, when she can't enter yours. Every moment will be precious believe me. My mother died last year and I wish she were here even with Alzheimer's, so I could hug her. Read my book, I think it will help you. Best of luck and many hugs to you. Cynthia
Thank you so very much for your support and feed back. Because this is all new to me I am learning so much as I go along. This has got to be the hardest issue I have had to deal with in all my life time. I would like to take care of my mom for as long as I can and to be quite honest God has truly blessed me with patience. Although I know that this disease will eventually take my mom and although I know that the progression is moving at such a fast pace I am at peace to know that I have stood by her side enough to understand the other world. Her world. And although I am not the one suffering from this monstrous disease, I can say that I have lived by her side and walked through dementia with her as I stood by her making sure she doesn't go through it alone. It is certainly another world I never knew existed up until now, yet like anything else when something new is presented to us, we still have options and able to make choices whether you deeply think they are going to work or not. In my case, I have chosen to make it work for me since my mom is no longer in control of herself. My mom still have those moments when she satrts to talk about something that sounds very familiar to us, but to say the least the moment doesn't last long because she is feeding off of her short term memory. How sad!! I don't want to say that my mom is a burden nor do I want to ever look at it as such, yet I will say that my life has certainly slowed down quite a bit so that I can take care of my mom until God allows me to. I would like to thank all of you guys for your comments and your support. I am so glad that I came across this site, it has been very helpful as we all share our personal experiences and learn from one another. God bless all of you who are going through a rough times with your beloved one. May God give you the strength to carry on with your life and with the transition of your world. Stay strong!!!!
Serenity, I TOTALLY identify with it being the hardest thing I ever did, and it most definitely was totally unfamiliar territory with an incredibly steep learning curve. I did my best to give my parents good care and make good memories with them as much as we could; my best was not perfect but it was sincerely my best, and I find that over time I am healing and dealing with it all, and my thoughts going more towards my present and my future with the family and life I have now. Oddly, just last night I experienced some thoughts of peace about the way I had taken care of my parent's home as I was thinking about what we may need and want to do with our home now...hey, only about 3 1/2 years after the clean out and sale now...I wish you as many good times as possible, and satisfaction and no regrets when all is said and done!
Hello all. Thank God for all the support out there on dementia I am learning to understand this disease as I live it with my mom. I finally relocated mom to Ct. with me after she was discharged from the hospital in New York. I thought things would go well for us once she came home to live with me. Unfortunately that hasn't been the case. Three days ago I took mom to see my primary care physician so that we can get her established in the state of Ct. in case anything should go wrong and I need to get her some medical attention. I got her to my doctor and during her initial assessment she decides that she wants to go home home to NY and she became angry, agitated, belligerent, verbally abusive to me. My doctor witnesses this behavior and suggests that perhaps my mom should be hospitalized for evaluation. Mind you because she is new to the state of Ct. and I am going to need resources for her I agree to his decision. We had agreed that should her behavior continue throughout the night and depending on how she would wake up in the morning it would take one phone call for the doctor to arrange for a direct admit. Mom carried on through the entire evening insulting me, following me around the house cursing at me, she hid two knives I found later on that evening, she didn't want to eat or dfink anything. All she want and all she did was smoke like a chimney. I held off from making that call. Next morning she wakes up @7:30 am with tne longest face angry at the world and wanting to argue. First thing out of her mouth was that I am stealing her money, that she's going to call Obama and let him know that I am stealing her money and that I am holding her against her will and she wants to go home. She has been in the hospital 3 days now in a very nice hospital with a beautiful nursing home attached. I took a tour of this place and as soon as you walk in it looks like a beautiful hotel with beautiful chandeliers certainly and extremely different from the nursing homes in her town in New York. I loved the place. As I'm talking to admissions because I had to provide them with moms health insurance information the woman asks me if I would like for her to put me on the waiting list for placement as a plan B, to my very own surprise I answered yes. I then asked her if she would ever choose this nursing home for one of her loved ones, I was relieved and comfortable to learn that her father had been placed at that very own nursing home. I havent4 made a decision as of yet, but I am on stand by to do what will be right for us both. This situation is not getting better nor is it ever. Mom's condition is declining at a very fast pace and I am losing this battle. I'm not giving up on her, but I have to keep telling myself that I need to continue living my life. I love her so much, but I don't like who she has become. Thank you all for your support.


Serenity go with your heart, it's in the right place. Don't take on more than you can handle..hugs..
Serenity, I totally get the anger in your original post. Even though my relationship with my mom is very different, it's hard not to get angry at the disease itself, for it's huge capacity for mental destruction. Watching a person decline slowly like that, because of dementia or alz, takes nerves of steel. It's very, very sad.

You're fighting a fight you can not win. Your mom will never get better, only worse with time. That being said, there are things doctors can do to make sure that your mom is as comfortable and as peaceful as she can possibly be. Don't feel even one iota of guilt if your mom must go into a NH...as you saw for yourself there are very nice NH's to be found. Take that comfort, and know that you're doing the right thing for everyone if it gets to a point where you can no longer deal with your mom one on one. People can only take so much before they're crushed under the weight of caring for someone with these awful diseases, no matter how great the relationship was before. Yes, you do indeed need to continue life. You're making sure your mom is safe and taken care of. That's the best anyone on this earth can ever hope for, and the best we can do ourselves. It doesn't mean we have to take that responsibility on, or if we do, take it on till we're sick ourselves. Do what you have to do. You're doing the right things, and you're a good daughter. *hugs*
I sure understand. My comment is this, you said your mom is the one "suffering" from this disease, make no doubt about this, you will be the one who suffers the most. It does not get better, it gets worse and the behaviors become so bizarre you will think you are in the exorcist. You did not cause it, you can not fix it, but trust me, you will get so sick that there will be nothing and I mean nothing left of you, it will drive you crazy and make you so weak you won't even recognize yourself.

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