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I was wondering if anyone has any tips on how to handle the constant state of mourning one experiences when they are taking care of someone with later stage Alzheimer's disease? I am finding it harder and harder to even want to be in the same room with her. I know I have to so I can help take care of her needs, but I look at her and just shake my head most of the time wondering how it got this bad for her and for us. I feel grief every day from this, and now I am wondering if I will even cry when it's over or will I just be in a state of shock? I think I will feel relief too because it will all be over finally. It may sound harsh, but I feel that nobody should have to live in that state of mind and with all the physical problems she has. How do I deal with being around her constantly and not go crazy myself from the sad situation it has become? Any tips would be appreciated. Thank you.

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You are not crazy and the grief you are feeling is not inappropriate.

In her very helpful book, "Loving Someone Who Has Dementia," therapist Pauline Boss writes about "ambiguous loss." The person we love is both here and not here at the same time. We are mourning them at the same time we are taking care of them. It can be somewhat reassuring to learn that what you are experiencing is common and normal -- at least it was for me.

I think the mourning we experience after the loved one dies has a lot of relief in it.

Hugs to you.
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Thank you, jeannegibbs. I really appreciate you taking the time to respond. I see you quite often on agingcare, and I always read what you have to say when I notice your name. There is a pastor who comes in for hospice for mom and us, and I had a nice talk with her the other day along with another wonderful lady she brought here with her too, and they made me feel a bit better. I will have to check out that book you mentioned. I went and bought the book "The 36-Hour Day" by Nancy Mace and Peter Rabins too. I haven't started reading it yet, but a few people highly recommended it, so I'm hoping it may help too.
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When my dad died from Alzheimers it was a relief that he was no longer suffering. I also found that his death was easier for me to go through because I had been through what you describe for a few years, not with him like I am now with my mother, but none the less it eases the ulitmate loss by degrees each day.
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Dear AZ, we all here are in more or less the same boat. Each experience is diferent, each situation is diferent, /we are all unique, and at the same time equal.
In my case, with my wife, I perseived the diference when I read Boss, her perception of the diference btwen death and "ambiguos" death, is brilliant.
I did not had the experience of seeing my parents in this cisrcuinstances, my mother died when I was 14 and manyyears later when my father had a stroke, I was far away.
Because of that, I don´t know what is worst, much less if there is a diference among the situation of a parent or a wife/husband.
And in any case, there is not a diferent result, we have to deal/endure a cruel situation, that can be for along long time. And I have to remain me constantly that what she is doing is not because of her. It is the disease. And patience.
I wish you much luck and support. Many hugs
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I'm going through much the same thing.....my mother has dementia and can't accept the fact that she can no longer live in her home. She is with me in another state and we spend days with her in her room, not speaking. I say little because anything I say brings anger. It is heartbreaking. Because my mother's general health is okay, I don't think I can continue with this indefinitely, which brings a lot of guilt on my part. Putting her in a facility will be the final act that will solidify what she wants to think of me. Intellectually I know it is the disease, fear, etc, but knowing doesn't seem to ease the pain and sadness.
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AZ, your situation might be too far along for the 36-Hour Day. I can't imagine how bad it is at the end. My mom is still cognizant, conversational and ambulatory, but she is still so different from who she was that I completely understand what you mean by "constant state of mourning." And Dem29910, my mom is in a memory-care facility where there are activities, socialization and multiple caregivers 24/7 who know how to handle dementia patients. Plus she has freedom to roam the "house" at will. My mom's agitation and aggression, etc. have calmed down to almost nothing since she got there. I think the safety and security of the home has helped her tremendously. What I'm trying to say is, while no living/housing situation will ever be ideal when dealing with dementia, that the right kind of "facility" may actually help.
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My mother had 3 strokes in a row. She went from been an independent, strong willed person to someone that had to learn to walk, talk, eat, write, etc. again. Because of these strokes she developed dementia and requires 24 hour care. It has been a tough road. Prayers and laughter have helped a lot. I believe there are lessons for us all to learn and share with others. Conversely, my father passed suddenly of a massive heart attack 12 years ago. It took me a very long time to get over this and I still cry about losing him. My father-in-law passed from renal cancer…the difference is when someone is unwell, we get to mourn them before that actually pass and the lost is not as traumatic as a sudden death. As one person told me recently, death is a part of life. I believe when we leave this world, we will be reunited with our loved ones…there will be no sicken or pain. My best advice is laughter and prayers.
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Thank you, Maria17. As time has gone on, I've realized that things can not continue as they are, either for my mother or myself. Monday I'm going to one of the two facilities in our area that accepts Medicaid to begin the process. I do not look forward to it, but I know it has to be done. I would not wish this experience on anyone, though I know there are many,many people out there in much the same situation. Thank you so much for your encouragement.
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We are all in the same boat with aging parents who we cease to recognize anymore. This question is for dem20010. I was under the impression that in order to be put in a medicaid facility, the person must first be hospitalized. In other words you cannot refer her from your house to the facility. I live in California and each state probably has different rules, and even then I could be wrong. I hope I am wrong.
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I too live in California I think your thinking Medicare I know with Medicare you have to be hospitalized for at least three days and then you can go in a facility but Medicaid is different its for low income situations
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I think you are both correct. My mother has recently stopped eating (as part of her being-as-miserable-as-I-can campaign), maybe breakfast and then nothing for the remainder of the day.....so I know if this continues she will need medical attention soon. I am going to the facility to gather information about it, hopefully for my own peace of mind for what is ahead. I also plan to talk with her doctor next week to solicit his help if that time comes. I thing the three ay requirement, though I understand why it's there, makes this whole process so much more difficult.
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Just wanted to say thank you to all of you who commented. I appreciate reading all your posts and wish all of you and your families the very best! God bless all of you.
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I have my elderly Aunt and Uncle living with me, and my Aunt is the one that is starting with Dimentia. I had a therapist give me a great bit of advice a couple of weeks ago. I told her I didn't know how much longer I would be able to mentally care for them, because of her being angry and accusational. But at the same time, the guilt I would feel about putting them in a home. She told me sometimes the best caregiver is not someone that lives with you. Sometimes putting them in a facilty, and then for me to drop by every day, bring them little gifts, food, etc, will make me look like the hero in their eyes. It's great advice. I will not feel guilty now, if it comes to that. We just take it one day at a time and try to do what we can to keep happiness. Hugs to all of you going through this same situation.
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I highy recommend The 36-Hour Day. It covers just about everything envolving the care of Alzheimer's. It's eay to read. It has everyday examples of problems with practical soutions. I'm starting a caregivers support group and the book will play a major role in helping the caregivers. Good luck and God bless.
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I can only speak from my personal experience. My dad died of cancer 12 years ago. It was heart breaking to see him sick for a year. My mom has Alzheimer's and I see her slowly deteriorating. Honestly, for me, this is harder. I felt relief for my father when he passed as he was in pain. I was able to grieve his death in what now seems like a more "normal" way. I grieve my mother's deterioration in bits and pieces. I was crying constantly. Now I am not. I don't know if that means I've lost my compassion or not. I don't feel I am able to "grieve" losing her properly as she is not "gone" but she is going. I guess part of it is I have (mostly) come to terms with her being in a nursing home. I probably never will completely and anticipate still having guilt over her being there even after she passes away. It is a weird state for all of us to be in.
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It is a strange place when we are grieving the person our loved ones used to be. For me it can be very lonely and isolating at times. One thing that helps me is the concept of this is the path. I am not going to "cure" my Mothers declining health. It is not in my power. What is in my power is the way that I relate to what is happening. It is sad and overwhelming at times but also ordinary. I come here to see that others are going thru the same trials so I know I am not alone. I try to embrace the good times we have. My heart goes out to you because I know it can be so difficult and lonely. It may not feel temporary while we are in the midst of it but it is temporary.
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Hi AZ. I know what you mean about being in a constant state of mourning. I'm taking care of my Mom w/ dementia in my home. She has gone down hill lately. The biggest thing is hallucinating and seeing people from her past, or people who she swears are there, and asks me why I can't see them, etc. I just tell her they're guardian angels sent from her loved ones in Heaven to watch over her, and I can't see them, because they're just for her. That seems to comfort her. But in reading your post, I was wondering what illnesses does your MIL suffer from as well as dementia? And is she bedridden now? My Mom is still walking, somewhat unsteadily, eating, conversing....although, I notice her speech is become much more garbled, and she can't find her words properly. She's doing some weird things...hallucinating, getting all confused, asking about people who have died (she lost her beloved sis rather suddenly right b/4 Xmas, and it's been very hard on her.) I agree, it IS a daily state of mourning. I worry also. What is coming ahead for me to deal with? I'm a little bit afraid, and wonder if I can handle it, as I already am stressed to the max. I love my Mom dearly, and can't even think of putting her somewhere else. I would never be able to have her last time on earth spent that way. (And I realize it's unique w/ everyone, so that's not a judgment on others). But with your MIL....how bad is it, that you can barely stand to be in the room? Is she suffering greatly? Does she recognize you? These are things I'm so afraid to think about that lie ahead for me. My heart goes out to you so much. I think we are all sisters (and brothers) in this terrible battle. I have a real sister, who lives in a different state, who has no clue of what I'm going through. The "sisters" on this site are the ones that I have to listen to, talk to, get guidance from. And it's all a big question mark of how much longer we'll have to do what we're doing, too!! And I, like you, am confused about that feeling. Sometimes I find myself thinking, "I hope my Mom gets taken quickly in her sleep, and I'll wake up and she'll be gone." I would be devastated if that happened, but on the other hand, I'd be relieved, because then she would be spared the horrible suffering that she may have to face down this nasty road. I'm getting the books recommended on these postings. Again, I've been helped by checking in this morning. AZ, I too feel like I'm going crazy many times, many days. :( Bless you for what you are doing for your MIL!!!
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The way we leave this world is as much of our Karma as the way we live our lives while we're here. It is HARD to see what we think of as a suffering. It helps to study about dementia and learn about how they can come and go in and out of their bodies more and more as the disease progresses. Most often it is WE who suffer more than they. Perhaps Dementia is a gift to spare our loved ones from the total realization of such deterioration. When she begins seeing people,and children and animals, her time to leave is close at hand. Be strong and just give her as much love as you can. Don't worry about your future emotions. You only have each moment.
Much Love and Light!
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Your letter made me cry. I feel so bad for anyone who is a cargiver, especially for a person with dementia/alzheimers. As it has been said, you are not alone, you are not the only person feeling like that. I guess I am lucky because my husband cannot communicate, having lost the power of words early. He makes sounds. So he rarely gets mad about anything, or if he gets upset he just throws his hands up in the air and makes a few loud grunts. I try to find humor in everything, I try to make him laugh, I try to make everything funny, even his not wanting to shower. He is not the strong man I married, he is a child now. But a good child. I don't think of him as my husband, but not sure how I DO think of him. I know when his life is done, he will be in a much greater place. But I will miss him so much, even more than I do now. I tell myself often that it could be much worse. It is out of my hands.
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Dear AZ
I feel exactly like you do. My mother has Parkinson's, and has just gradually gone down and down. She has been on hospice care for 3, maybe 4 years, I forget. At any rate, she is now bedridden, and seems completely removed from the world. Each step of her disease has left me in that place you are talking about. I am constantly grieving, and every so often there will be some indication or another that maybe the end is near, but its not, its just another permanent down turn. Sometimes I talk to her about it. Sometimes it helps.
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As for me, the caretaker of my 90 yo mom, I am the one who grieves.
I miss my Dad's family so much! Those crazy, hard drinking, smoking southerners with their calm sense of "it's going to be just fine". I miss their superbly told stories and their comraderie, the sharing of love without judgement. I miss their acceptance of my uptight moms "ways" and even their sly chuckles when she would (frequently) fly off the handle. I miss the enfolding of that family in a way that you can never, ever imagine.
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As always, Jeanne is a great help in her comments. Jeanne, you helped me a lot so thank you! My husband died on Christmas eve at his nursing home. I had grieved and mourned the whole time he was there and thought I'd be fine after he passed away. Yes, there is great relief that he's not suffering any more and that I do not go in daily to see him deteriorating more. However, I find the tears come at the strangest moments. I think they are more because I'm mourning my life, the way it used to me. I know I did everything I could possibly do for him; so I'm not mourning him. Now I feel guilty because I'm grieving for myself. I know it's selfish, but I feel sorry for me. Isn't that awful? Hugs to all. I'm trying to accept what is. Corinne
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Corinne,
I don't think you are being selfish to grieve for yourself at all. Each person is different in the way they grieve. You lost someone who is important to you, so it's absolutely understandable the way you're feeling right now. You do what you have to do to be okay (or at least as much as you can be at this moment). ((((Hugs)))) to you too. Try not to be so hard on yourself, okay. You were wonderful to take such good care of your husband, and I'm sure he is smiling at you from Heaven and is grateful for all you did for him. God bless you.
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AZ caregiver...I too have walked that path. My mom was the sweetest soul around and when she went downhill with the dementia she went down bad. It was such a shock to see the decline and live with her at times. I was so frustrated...most of the time we didn't speak and when we did..she treated me like I was her slave. She didn't remember that I was her daughter...and that I was caring for her. She hated living here...I remember at one point she told me that this place was the worst place she had ever lived. I made so many attempts to do the right things and say the right things..but nothing mattered. The dementia had changed her so much...she had no gratitude. I finally had to disengage myself as her daughter..and care for her as if I was a worker in a NH. But I would use patients and kindness.. She eventually started to trust me..and no matter what at the end of the day..i would give her a kiss on the cheek and tell her I love her. She finally started to be sweet again. I know it's a tough road to travel. I lost my mom Jan 9th this year. She's finally at peace. But one thing thats for sure...you did what you could..sometimes we have to come to the conclusion that the disease is changing them, and it might be better for you in the long run to let someone else take over. You can still be the daughter at visits...and let the professionals do the care. Dementia is possibly the worst disease I have ever encountered. It's sad that there are so many that are suffering with it. God bless the caregivers..
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that was suppose to read patience and kindness.
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Braida...It's a tough one. But I do recognize the process...your mom is probably closer to the end than you realize. Of course, everyone's experience is different and others have more strength and hold on for much longer. But it sounds like what mom was doing the last couple of weeks before her death. My mom had a DNR paper so I week could do for her was keep her comfortable. She passed away Jan 9th after 8 days of no food or water. It's truly the worst thing to witness and thankfully mom had a week of respite the last week of her life. So the stress of caregiving was not on me. But the stress of a daughter watching everything transpire was...and its not a pleasant sight. I hope you have support...do you have Hospice at this point? And are you able to receive any respite at all? If you do, take it. Having someone else to do the care will take a big burden off you. I will be praying for you. Keep us informed on how things are with you and your mom. God bless you.
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geez....I guess I reread before I submit, it should read "My mom had a DNR paper so all we could do"
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I'm sorry for your loss, msdaizy. I know how hard it is to witness the downhill struggle of when your loved one becomes someone else. My MIL mutters the most nonsense things right now, and usually we humor her. We figure, what's the point of arguing with someone who doesn't get it anyway. For the most part, she is still her sweet self most of the time, but there are days when she is really rude and definitely isn't thankful for the help we give her at all, but I know she doesn't understand why we have to change her or bother her with things that she'd rather not deal with. It sure doesn't make it any easier though.Thank you for sharing your thoughts and struggles with us. I know how hard it must have been for you. (((((Hugs)))) going out to you and your family too. God bless.
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Reading MANY books on ALZ helped me to understand the disease, my role, etc. I believe that you must go through the constant mourning, as you are, but you should also be able to move on eventually. With Mom, adopting the attitude "it is what it is" has helped me. I've seen other caregivers with this attitude - you do what you can and most certainly provide the best care you can, but accept the disease, in general. I've stopped questioning the "why" and just DO what I have to do, repeating all the while, "It is what it is." Dad died of Alz. 14 yrs. ago but it took me several years before I could revel in his pre-dementia memories. Good luck.
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Corinne, you're having to re-invent yourself, besides mourn your lost husband. Every day your thoughts and actions centered around caring for him, going to see him, etc., so now your days lack that structure and focus. An aunt once voiced that sentiment to me after her husband had died after a long illness. You're obviously a giving person, so maybe volunteering somewhere would help you find yourself again.
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