I am watching my mother fade away and my emotions are conflicting. Any advice?

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I am watching my mother fade away and my emotions are conflicting. Any advice?

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You are certainly not alone. My 83-year-old mother suffered from end-stage congestive heart failure and got progressively worse the last seven months of her life. She got to a point where she absolutely could not get around or take care of herself, so she needed full-time care. She refused to leave her home and she really wanted either me or my brother to move in with her and care for her full-time (which was simply not possible). She refused to move into either of our homes because we had dogs. She "tolerated" her caregivers, but was never truly happy.
Everything I had read about end-stage CHF was that it was completely unpredictable and could last from a few weeks to a few years. I kept thinking, "How could she possibly get worse than she already is?" She desperately wanted to join my dad in Heaven (he passed a year and a half earlier).
She ended up passing away on her caregiver's day off, and I was the only one with her in the house (which was very difficult). There was a sense of relief, but also a sense of loss (and some guilt as well, as the day she passed I wondered if she truly felt as bad as she said she did or if she was just trying to make me feel bad for bringing in a full-time caregiver). What I have discovered is that as time passes, the bad things that happened in her last few months tend to fade away and the great memories take over.

Do not feel guilty for feeling the way you to, as I believe it is perfectly normal. The last few months of my mom's life were some of the most difficult of my life, but now I believe she is at peace. Sending prayers to you and your mom. <3

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Good morning, first I’m sending hugs your way. I have two parents with dementia who I care for so just know, you’re not alone. It’s normal to feel those emotions, however; very difficult. As much as your mom may want to leave this earth, she isn’t going until God calls her home. Dementia and Alzheimer’s is an ugly disease, and people who don’t or never have dealt with this, can find it hard to understand. Try to remember, the woman she was, and enjoy as much time with her as you can. We never know the day, or hour, of one’s demise. Try to find a caregiver support group. Just know you’re not alone. Stay strong, and be encouraged, one day at a time🙏🏽.

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No.. you are not alone and please do not feel guilty. I understand. Its a horrible feeling to watch your loved one disappear in front of you while they are still technically there. I work in a gero-psych unit as a nurse and many of my patients have dementia. It really is a long sad goodbye.
My father doesnt have dementia but has recently had a below the knee amputation and is so depressed and I often feel the same way watching him deteriorate is so hard, so heartbreaking. I am his caregiver and only child. It is heartbreaking. You are not alone. Please do not feel guilty. I have those feelings too. We only dont want to see them this way. I'm so sorry youre hurting.

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Oh Kirahfaye :-(( I promise you, you are not alone. We lost Mom in March and currently I'm sitting in a strangers basement (Airbnb) while I visit with my dad for the week. Dad lives 500 miles away from me geographically (he in Canada, me in the US) and with each visit I see him slipping away more and more. For the most part he's good mentally and the caregivers at his LTC have been wonderful but I know he's lonely and misses my mom.

I try to get here every 4th week and find myself clinging to these visits likely for me as much as for him. His quality of life is just not there (nor has it been for quite some time) when I see the frail 92 year old he's become I know that it won't be that much longer so I'm trying my best to savor our time.

Perhaps others find the same thing. I find myself hoping for deeper, meaningful conversations that I can carry with me once he's gone. I feel fortunate. Even tho Mom was in late stage dementia when we lost her, the final two weeks of her life were some of the most tender, enlightening visits I'd had in years and selfishly I'm looking for the same thing from him.

This journey we're all on is not for the faint of heart and how we chose to experience it is a personal choice. My brothers for example prefer to ignore the inevitability of what's coming. (personally I need to to feel it all and not sweep it under the carpet)

Several years ago I started to write a novel that is loosely based on her/their life and recognized that her mind was slipping away I decided to record some of our conversations on my phone. Many of the things she said during those conversations were inconsequential at the time but after re-listening there were a couple of pearls that make me grateful that I have record of it. (and fyi I simply hit record, placed my phone near her and let the conversation unfold) Perhaps this is something you would like to try?

My thoughts are with you, give her as many hugs as you can and lean on us. Many of us are walking the same path :-)))

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My dad passed away recently and until then, I was taking care of him, my mom, my adult disabled brother, my own family, and working full time. I didn’t know how I was going to do it all. I had thoughts of wanting at least one of them to pass away so I could breathe. I felt so guilty for those thoughts, until I realized that all three were miserable as well, don’t want to live anymore, and most importantly, that if there was hope or I had help, I wouldn’t feel this way. Death just seems like the only way to relief. If things were different I would never wish for death’s relief for them. But there’s no hope for things to get better, so it’s become the only relief in sight. I used to feel guilty for even having these thoughts cross my mind, but now I think that our medical system just keeps us alive long after the joy of living is gone. My best and loving hope is that they die peacefully in their sleep.

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I have been caring for my husband for seven years. He has gone from the most active, strong, capable man to someone who sits in a chair all day. And, meanwhile, I spend my long-awaited retirement more tied down than I was when I was working. I agree with your assessment of the medical system. I think it is karma, or a cruel joke played on us by the universe, or God, whatever you believe, saying to our society, "You are afraid of death, will not discuss death. Well, here is your eternal life in the form of a body sitting in a chair, remembering nothing."

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You beautifully expressed what I went through with my mom. I would rise early and pray for God's mercy for her everyday. I, too, waited with a mixture of dread and hope to know she was alive each morning. She, too, had hallucinations of people being in her room and spoke of my deceased dad coming home soon. She was 97 when she died of a stroke. We were able to be with her when she died at home, surrounded by her family. Coping with her decline during the 4 years I cared for her was hard. I attended a support group for caregivers of ALZ, read helpful books, journaled and prayed a lot. I feared her decline into dementia would taint my memories and feelings of her, but it has not. I hope you will find strength to get through each day with grace and humor. Do keep praying for God's mercy and Grace. God bless you.

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Tell me I'm not alone. Tell me I'm not horrible for wanting this to end before it gets worse. Tell me it's okay to miss my mom even when she's standing in front of me. Tell me its normal to want to grasp her as tight as possible before she slips further away.

You are not alone, you are definitely not a horrible person for wanting it to end, as a caregiver I’ve felt that sooo many times. It’s totally ok to miss your mom and of course grasp her right and give her the love she needs. I have learnt that the only thing that helps me get through it all is trying very hard to stay positive, as a caregiver I have felt every feeling a human can possibly feel, my advice is just don’t give up, take things slow and deal with 1 day at a time. Try your hardest not to worry because worrying today destroys your tomorrow, if that makes sense?? Things are going to happen and just do what you can, become stronger by allowing yourself to accept that you are a human being, we are not machines we get mad and frustrated, we get sad and depressed and loose gooey, lol I mean hope, I “hope” that made you laugh a little at my mistake :) Just remember your a human being not a super hero. Allow yourself to accept this, and allow yourself to accept that feelings are normal in all of us humans.

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no, you are not horrible. My Mother suffered with Ovarian cancer for 2 years, knowing it was never going to improve.
In the end, I prayed every day for her to pass. I completely burnt out from the care, and made some poor decisions for her end of life, because I could not accept what the doctors told me.
DO NOT beat yourself up, you sound amazing, and I am sure your mom is happy to have you. True, selfless love is not wanting the person to suffer.
I pray for what ever brings you peace.

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I'm going to address a different part of your question as others have been giving you some excellent advice on your emotional state. Your worry about your daughter remembering only the dismal parts of her grandparents.
Do you have pictures of them when they were younger? Photos of when your mother was beautiful and your father strong would be a great place to start. Keep a journal of things you remember about them that was funny or exciting or unusual. Even the mundane (gramma was a fantastic baker, her macaroons were terrific) can put them in a different light for your daughter. When your mom is being difficult see if it would help to ask her questions (that she would remember) about your dad or your step dad, share little stories. When my mom was able to see better and write better I got her started on writing some of her memories down. I realize that might be a bit late for your mom but verbally she might enjoy reminiscing with your daughter.
As to the ambivalence you are feeling about her death, as others have said it is natural to feel that way. One day I will be walking with mom at her ALF and feeling that she is a shell of her former self and the next I can't wait to call her and tell her some good news. It is a sort of grieving process and you can only go with the flow of it. Don't be too hard on yourself. Hugs to you and mom.

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Tell me I'm not alone. YOU'RE NOT
Tell me I'm not horrible for wanting this to end before it gets worse. YOU'RE NOT
Tell me it's okay to miss my mom even when she's standing in front of me.
IT'S OK
Tell me its normal to want to grasp her as tight as possible before she slips further away. IT'S NORMAL
We will tell you these things because they are all true, but now you have to believe it and find peace with it. I hope you can and do. Hugs.

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You are perfectly normal! I loved my husband more than myself but he was getting so much worse, I prayed for God to take him! Everything you're feeling is what any mentally healthy person feels as they watch someone dear fade away slowly. Its excrusiating ly painful!

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As you have gathered you are not alone. Many feel and have felt that way.
When your mom talks about dying reassure your mom that when she does die you will be alright. That your daughter will be alright. That you, the family will miss her. She might just be waiting for you to say those words.
My Husband was in his 60's when he was diagnosed, it was a long 12 years watching the man I love fade away. I had the same thoughts that you are having.
In the mean time all you can do is
Tell her that you love her
Give her hugs, hold her hand
Tell her you are there for her

If she enjoys, and understands photos take out the photo albums and try to get some stories out of her, maybe some you never heard. Get your daughter involved with this if she would like.
But don't push you don't say how old she is but this is a very tough time and everyone handles these emotions differently and there is no right way or wrong way.

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You are not alone. I took care of my dad. He had diabetes, became a double amputee, had two heart bypasses and was on dialysis. Then was diagnosed with colon cancer and that’s what he passed away from. I was at every doctor’s appointment, at every surgery, visited him in the hospital and the rehabs. When I gave birth to my daughter and was released from the hospital, I went straight to the rehab, instead of home, so he could hold and see her. When he came home, I was back to the care taking, even with a newborn. When he was nearing death, I was super sad, but at the same time I was tired and I know he was tired too. It hurt like hell when he passed, but I eventually became ok and at peace with it because I was there for him. God knows your heart and as long as you have been there for your Mom, you feeling that way is not being heartless. When they say they’re tired and ready to go, they mean it and it’s nothing you can do about it, but accept it. Sending you much strength and prayer.

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You are not alone in these thoughts! My dad has dementia and has lived in a memory care facility for 2.5 years. He just went under Hospice care 3 weeks ago but they've informed me this does NOT mean he is expected to go anytime soon. I know from our past conversations he would NEVER want to live this way. Everytime I receive a phone call from his facility I hope the news is that he was found peacefully deceased :( Watching my parents decline for a decade, living down the street from me, has been a horrible experience and I foresee I will continue with them both for possibly many years into the future.

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You ar absolutely not alone. My mother is soon to be 89 and living 6 month with my husband and I and six month with my sister. I am 4 month into it and I am feeling like you. My mother is suffering from memory loss which I know is age related and to be expected but other behaviors are more than I can take at time. She wants to know what every noise it. Sounds that we all know and are a part of daily life she wants to know what they are, Mom is becoming very for a lack of a nicer term, " snoopy". She wants to know everything about everyone. We can't have friends over because she drills them from where they grew up to how many grandchildren they have and in and on and dominatea the conversation. She narrates everything she sees. There is a man walking along the road, there is a lady going to the mailbox, there is another lady going to the mail box and on and on. She says out loud, there is a Chinese man, do u see that black woman over there? Her filters are completely gone. Mom is a Christian and I know she will be whole again in heaven and like you I find myself wondering if this is the morning she made her way to heaven. Mom is not happy here anymore, she has more days unhappy than happy physically and emotionally. People tell me, don't feel that way, enjoy every minute you have with her but that is the problem , she doesn't enjoy life and that makes me not enjoy time with her because she is not enjoying life anymore. You are not alone.

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You are not alone at all! I stayed with my mom for 14 days in hospice (at a hospital) pulling two chairs together to sleep at night. I prayed the Lord would take her to stop her suffering. I witnessed her scream in pain (while heavily, heavily medicated) and it was THE worst 14 days of my life. I felt guilty for wishing her to die, but, I couldn't imagine the pain she must have felt. I pray for you and your mom. Stay strong, but cry if you need to. Let it out.

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You are not alone (as you have seen from the many responses here). I also care for my mother (she's almost 89) -- in my home -- and watch this deterioration occurring every day. The only thing I would add to what has already been written is to 1) take good care of YOU -- this is one of the most difficult and challenging experiences a human being can endure, so the more you take care of yourself the more powerfully you can face it all; 2) love what is -- when you can be fully present to this moment and who your mother is NOW -- you can bring your love more deeply to her. She will never be the person she was, and when you can choose to love who she is NOW as fully as possible, she will feel and know this; 3) keep reaching out for help. This community, others who have walked this path before you or are currently walking it -- having others who know and who care means everything. Blessings and Love to you and your mom.

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You are absolutely NOT alone. Your feelings so mirror mine, it was as if I had written this. My mother is also 84, soon to be 85, and your description of your mom is the same way I describe my mom. It is so difficult to watch her decline. My mom was diagnosed with Lewy Body Dementia, and she has a number of other health issues. She too has lost interest in life in general, caring for herself & she has lost the ability and inclination to take care of herself. It is as if she is just waiting to die...she talks about her mother coming to get her. I get so frustrated sometimes dealing with her and then beat myself up for being frustrated. She eats so little and currently weights about 82 lbs. at 5'3". I try to get her to eat more, but she says she just can't. Her memory seems to get worse and worse everyday, especially short term. She will ask me or tell me something, we will talk about it, and then not 5 minutes later, we will end up having that same conversation again. Sometimes, this will happen several times in a 15 minute period. It is so exhausting and I do the same thing...check her several times when she asleep, hope that perhaps she passed in her sleep, and then panic when I think that maybe she did. She has COPD so her breathing is kind of shallow, so I check for the rise and fall of her chest.

You are not a terrible person, it is simply the reality of the roller coaster of being a caregiver. We go through such a variety of emotions from day to day because we are human. I know that I love my mom, but sometimes I wish that she could be taken out of her misery, then I feel guilty thinking about all she has done for me in my life and I start feeling somehow unappreciative of the sacrifices and lengths she went to for me. I've found that we just have to give ourselves permission to be human and feel what we feel. Those feelings are always in flux so it makes no sense to punish ourselves for them. Through it all, we love our parent and only want to do all we can to lessen their suffering, to give them the dignity they deserve as they move toward the end of their life.

Give yourself permission to be human...for me, it is the only way I have been able to keep from feeling resentful. Please know that what you are feeling is completely normal. I am sending love and comfort to you..stay strong and as has been said by others, a good cry helps every time. I set aside time every couple of weeks to have a good cry...it sort of like a reset for me and clears all that heavy stuff out. God bless you and your mom...

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Cs1stDaughter, my sentiment exactly. My mom was also diagnosed with LBD about five years before she passed away, and it was mentally and emotionally draining on both of us. I was her only child and had previously moved away from my hometown/state. So the long distance caregiver role was extremely overwhelming. How long ago was your mom diagnosed?

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I am not sure if I have advice, but your words were as if I said them myself regarding my 94 year old Mother. My heart ACHES for you because I feel exactly the same way and I hope you don't mind me saying that I take some comfort when reading your post only because I don't feel so alone. I have prayed for the good Lord above to take my Mom home peacefully and soon because her life sounds exactly like your Mom's....was so full and now nothing. I remind myself maybe this is in God's hands and he has reasons and then I think maybe it's in my Mom's hands, maybe there is something not here and unsettling for her. Then again maybe her body is ready to give up just yet. I am unsettled thinking that I am acting as if there is nothing I can contribute to give her some small happiness while she is still her with me. I find myself avoiding her because it makes me so SAD. She was always there for me and mostly when I needed it desperately. I have vowed to myself to grasp every moment (even when it is emotionally and physically draining on me) to make her end as happy as I can. The little things do matter. I hope my words give you some peace and a little less burden on your heart my friend and remember you are not alone in this...even when you can't talk to the ones closest to you do exactly as you did reach out to others...there is always an understanding one on the other end to help you.

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Thank you. Beautifully stated. You are not alone. My Mom is almost 95 and we technically lost her 5 years ago. We lost the person that she used to be. Although she does not have ALZ, we believe that perhaps dementia has played a huge hand in her personality change. My sister and I talk for hours on the phone, to relieve our stress and to help one another rationalize her behavior and things that she says. There is no rationalization..... Time is a thief. It is okay to miss the MOM that was. We do everyday! The memory of the MOM that was is what keeps us loving and caring for her even when she's not the MOM we recognize. At times, it is very difficult. Again, you are not alone.....

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I know how you feel kirahfaye- my mom was diagnosed with dementia 8 yrs ago. I feel as though I lost her a long time ago though. She is just a shell that I have to take care of. I cried when we were planning my daughters wedding because I couldn't talk to my mom about things or ask her to help me or even share my concerns about the person my daughter was marrying. She is no longer there...there is no understanding....there is no opinion....there is no experience. She was just one more thing I had to manage on that day. When my troubled niece overdosed, we did not tell mom about our horrific loss. That was 2 1/2 yrs ago and mom has progressed since then so when my grandma died, we chose to tell her and take her to the funeral. We couldn't handle keeping another secret. Mom is so removed from her emotions and understanding that it actually went ok. I was more upset that my mom didn't really "understand" that she has lost her mother. I know it was a blessing, but it was a sad one. When they no longer have quality of life, there is no shame in praying that they pass in their sleep. You are asking for a kind release from this life for her. You are not alone. When you have a parent or a spouse with dementia, it is a repeated long drawn out loss, over and over again and there is nothing wrong with wanting that to end for them and you.

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You are not alone....hardest thing I’ve ever been through with my Mama 💜

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Just a couple points. Love your Mom and all the good memories. Hate the disease and the symptoms but remember, they are not her. Reach out for support from the Alzheimer Association and ask them to recommend other programs in your area. Also, recognize you are grieving the loss of your mother. I recommend you speak to someone about Anticipatory grief. Good book to read addressing this is Healing Your Grieving Heart when someone you care about has Alzheimer's by Alan Wolfert. Take a deep breath. My thoughts are with you.

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You are definitely not alone, I experienced the same when. I watched my dad be engulfed by the different things that ALZ does. As we love our parents, watching them go through this is very hard. The doctor whom was handling my dad said something to me that helped me process things. He told me although we see it as suffering many who are diagnosed with ALZ are. Several live their happiest times again, while others are unable to do so. Just remember you are still loved.

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We all resonate the same "conflicting" emotions - the more our loved ones struggle the more we just want peace for them. The internal struggle even within us to makes sense of it all is contiounously drawn out as well...definitely the longest goodbye ever. Hugs to all

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I'm also in that position right now with so many conflicting emotions-my mom is 76 with Alzheimer's in a nursing home. She went from being dynamic, energetic & active only just 4 years ago to sitting in a wheelchair and wearing incontinence briefs. She had broken a hip at her assisted living facility and while it healed completely, she preferred to sit in a wheelchair instead of using a walker and walking on her own so now she's in a nursing home. She still has a sense of humor and remembers her family, but I've been having such a hard time recognizing her. She was always my go-to for information and now I'm the one who has to have all the answers! Thank goodness for my aunt(her sister) who's been helping the whole way-I feel like we're a team.
You're not alone with these feelings Kirafaye-I'm glad you reached out here-I hope you feel comforted by all the responses. I'm so very grateful for this community board-I've asked questions here before and always felt supported.

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This post sounds as if I could have written it myself. This was my experience as well as I would imagine the many who have posted. Your description of your mother fits mine to a 'T', especially the part of being somewhat vain. Looking back I am so glad she was vain and was able to experience all that she once was. In my situation I felt all that you have described as far as it came to losing my mother on a daily basis and then finally losing her to her disease. Its been two years since she has passed and I wish I could experience even one more of those demented days with her. Just take each trying day one at a time. Take care of her as best you can. Take care of your family. But most importantly take care of you the best that you can. Do not be so hard on yourself. Just by the way you have asked your question its looks like you are a beautiful writer. Perhaps journal this experience for yourself or for others. My heart goes out to you.

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You are not alone! My mother is 89, I sold my home that I loved to live with her because I work from home and she refused to move. I've been here for 3 years and feel like I've lost myself. She was a great mother and I remember loving her, but now I don't even like her much. I treat her with respect and kindness, but I am tired.

She's become a Debbie Downer, will only watch news or Datelines, 48 Hours, Forensic Files and considers me her property by 6pm each day so we can watch these shows exclusively. I've tried others, but it's just easier to do it her way. She's obsessed with laxatives and has a hoard that I've yet to find, but I do know when she takes them. House is the one I grew up in, only 1,100 sq ft, but she's good at hiding things. Forgot to mention it is in a high crime area of Dallas. I moved from a nearby suburb where things were newer and peaceful after selling the house I built and loved.

She was the baby of her family. Now, everything centers around her. If something bad happens, it's her fault. She loves a good pity party or worry session but I refuse, sometimes hourly, to listen. I explain that it sucks my soul and she has others who will listen but I'm not one of them.

True story: About 30 years ago, my sister's ex did something awful to her. She told my mother and my mother told me, ending the story with saying it was HER fault because she missed church on Wednesday night! I told her that explains a lot - I didn't know God allowed things to happen, good or bad, based on her choices. Just an example of one of the things that's become more exaggerated as she ages. And the pattern of indirect communication. I don't triangulate.

I need quiet time, so I now get up no later than 6am. Thankfully, I've got her going to bed at 7:30pm after watching recorded murder. I, too, wonder when she sleeps past 7:30 if this is the day. And I'm fine if it ever turns out to be.

Stories about people living to be in their late 90s and older rock what sanity I have left. I'm fairly convinced she will outlive me. I talk to geckos in the yard just to be heard. Needless to say, I seldom get out and therapy isn't an option since leaving her unsupervised isn't an option. Thank you for your honest post and, if you read this to the end, you are a saint! We aren't alone.

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I am in the Dallas area. You can talk to me...and the geckos. I talked to my dogs!

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YOU ARE NOT ALONE! I’ve had and still have these same feelings and I too am extremely conflicted. It is so very hard to go through this. I have started to feel resentful and then I feel guilty for feeling that way. It has been just me and her for my entire life and I know I will miss her when she is gone but I feel she has lost all quality of life and it’s heartbreaking to see her like this and my heart breaks for you as well because your post sounds like I wrote it myself. All I know to tell you is to take breaks from it all when you can. Try and get extra help even if it’s just for a day or two. And cry!! Cry your heart out. Talk to friends, a counselor or anyone who will listen and understand. Above all else, PRAY for God’s direction, peace and comfort during this extremely difficult time. YOU ARE NOT ALONE and with God’s help you will get through this. My love and prayers are with you and your Mom!

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First of all, ALL OF THESE THOUGHTS AND FEELINGS ARE NORMAL. You are not alone. Alzheimers/dementia related disease is a death of personality and personhood over time. It hurts to see your loved one change, to feel your own grief, as your mother also experiences her own. I imagine she is sometimes very confused and frustrated, and is aware of who she once was, and her capabilities are different now. She is probably trying to compensate and is not doing so successfully anymore. So she withdraws, to avoid embarrassment. Depression and anxiety may require medication intervention to stabilize mood. This is the transition period. Later stage Alzheimers becomes more predictable, more limited, and more manageable as dependence on care increases. But for now, this is the stormy period, in my opinion. You can experience a different person each day...some days are good, others mixed, some very bad.

It sounds like you feel isolated and a bit burned out. I think looking at respite care options, a short vacation, even a weekend, or full day off, might help. I encourage you to seek out a support group for caregivers, perhaps through a church or organization in your area.

There is some joy to be found in the journey...my mother in law had a great sense of humor and it would pop out every mow and then, like sunshine through the clouds on rainy days. Embrace those moments...and hold on. Dwell on those good days, good memories. Journaling helped me...sanity through lost sleep and the endless piles of urine soaked laundry every day.

At the end, the saving grace was dinners in the back yard under the old tree where I have the grill...with a bottle of wine shared with my husband after her bedtime, and our dogs for company. Moments of peace in the middle of chaos.

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I am watching my mother fade away and my emotions are conflicting. Any advice?

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