How to deal with crushing heartbreak?

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How to deal with crushing heartbreak?

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My wonderful mother was diagnosed with dementia about 6 years ago. She had been doing pretty well until the last 5 months. She was able to live in an assisted living facility but was moved to a full care facility 2 weeks ago. I visited her yesterday and for the first time she didn’t recognize me and didn’t understand that I was her daughter. It was the worst day of my life. I’ve cried pretty much the last 2 days. My mother was a loving, kind and amazing mother and wife. She is reduced to a mere shell of her former self. I’m struggling with the unfairness and overwhelming sadness of this situation. I find myself crying a lot now as if I’m mourning the loss of my mother. Is this normal? I don’t want to spend what time we have together sobbing but each visit makes my heartbreak. She struggles with verbalizing so conversation is tough. I basically tell her stories of trips we took and how much I love her. She smiles but stares at me like I’m a “nice girl” who came to visit. Anyone else had a similar situation? Any advice on how to overcome this crushing sadness?

Alzheimer's & Dementia Grief Memory Loss

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Toward the end, my bestie's mother had several times when she wouldn't recognize her own son, barely remember her own daughter. She always however remembered bestie's husband, perhaps because long ago, she introduced her to him.

The ex-SCOTUS justice Sandra Day O'Connor went through the same thing. At the end, her husband with dementia did not recognize her and held the hand of the "girlfriend" he acquired by holding hers. Sandra Day O'Connor is now in a NH herself with Alz.

I'd recommend you download that Black Mirror episode called "San Junipero" if you don't have Netflix. Beyond the sci-fi elements, it really is about the multiple worlds that people with dementia often straddle, the temporal vertigo of being here now, and then 10 years ago, and then 10 years old, as one journo put it.

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You ARE mourning her loss. Mom’s body is still here, but her mind/self is not. It’s totally normal to feel this way.

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Your best job now is to give your mother as much pleasure as possible. Being a nice girl who can tell her lovely stories about the past seems absolutely perfect. Change your grief about what is lost into being grateful that you can continue to give her something valuable. Enjoy talking about the old things with your mother, and value every look that says she values it too.

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Yes … good advice … just be who she wants you to be. This is so normal in dementia… forgetting loved ones.
she probably knows you’re someone very important in her life… and don’t pressure her to remember!! Just bring her little presents and enjoy the visits…

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My father. He had a massive brain bleed and sometimes has no idea who I am. There was no slow memory loss. He had a stroke, brain surgery, woke up 2 weeks later, and I no longer recognize the man in front of me. He looks like my dad, but that’s where the similarities end.

I know exactly what you’re going through. I too mourned (and continue to mourn) the loss of my dad as I knew him. Sometimes stroke patients come back, but the doctors warned that there could be permanent brain damage in the reason and functioning area of his brain - they just don’t know. So, now I’m on the “waiting and seeing” side of things for the next 3-15 months.

I miss my dad. I’ll read about something, or someone will tell me something and I’ll immediately think, “Oh! I’ll have to tell that to Dad,” only to remember that he wouldn’t know what they hell I’m talking about if I did. Most of the time he’s so sedated he’s out of it, or he’s hallucinating. Even when he remembers me, the aphasia is so bad I don’t know what he’s saying.

He’s just gone, and he would be so pissed that he’s this way.

In terms of how to deal…. When I’m not with him, I mourn. When I am with him, I feel disconnected because the man I knew is not there. I treat him more as a child, fussing over him. It gives me something to do, and he feels taken care of. But when I leave, yeah. Most days I’m crying as I walk to my car.

If you find this grief too much, reach out and find a grief counselor, because that’s what this is. It’s a loss of someone that you love.

Hugs. I know it feels like it, but you’re not alone.

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Please be patient. I was in a coma and completely paralyzed. In a hospital for 9 months, unable to hold a toothbrush.
I now live alone 2 bedroom 2bath with my dog so things get better with crazy intensive rehab. Btw the rehab I had same with people who have had stroke.

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From the moment "we" get a diagnosis of dementia we begin the mourning process. I guess the same goes for any diagnosis that will shorten a life.
Little bits of a person are eroded away and a shell is left. You can actually see it in photos of someone with dementia. There is a vacancy there. (I had a thought when looking at photos of my Husband. You hear the phrase "The eyes are the window to the soul". My thought was that with dementia God takes the soul early so the person does not know what is happening to them. That is why I saw no "life" in his pictures. I know silly but it made me feel better if I thought he was unaware how dependent he was and how much of himself he lost)..now I'm crying..
Anyway, I suppose that did not help you much with your sadness. Just know we all feel it.
Next time you visit mom might be totally different, she may know you. She may not.
Thank her for being who she is and was. Thank her for being a wonderful mom. Not everyone has that. Thank her for passing on the best of her to you.
She will always be with you. When you laugh I bet sometimes you sound like her, when you catch a glimpse of yourself in a store window you see your mom. She is not going to leave you..ever.
Continue to be the wonderful person you are, it is the best way to thank her.
((hugs)) for both of you

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Probably a blessing if dementia makes our loved ones unaware of what was happening.
but it’s not always like that … lots have good moments of lucidity where they’re very aware of everything they’ve lost !!! and those
are the saddest of all !!!

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This is Dementia. This is normal. Mom is probably in the last stage. I know that look. I believe they go back to their childhood. I think my Mom thought I was her mother. Her eyes would light up just like a small child when I came into a room sometimes.

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It's really a sad and distressing thing to witness the dramatic decline our mother's take with dementia. My nearly 95 y/o mother is in the advanced stage herself and talks about Lea while I'm sitting next to her, which leads me to believe she doesn't realize I'm her daughter. She also introduces me to the staff as her mother, which she's been doing for quite a long time now. My DH and I visited her yesterday at the Memory Care AL where she lives and it was heartbreaking to see her not able to understand what we were saying to her, or to follow the conversation at all. The whole situation is a mess, really, and I pray that God takes her Home soon now. This is no way for her to be living at all and I shudder to think what it will look like when she gets even worse.

I don't think you or I overcome the sadness. It just becomes part of who we are as we continue this journey to the end with our mom's, you know? It's like the grief of death....you don't really get over the loss, the raw grief just let's up a bit with time. With each visit to see our mother's while they're still alive however, the horror and pain stay alive in the mind and it's like reopening a wound each time. Very difficult to say the least.

Sending you a big hug and a prayer for some peace in your heart.

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So sorry, Sadly, she'll get to a point where she won't talk at all and will "just be there". She'll need help with everything or she won't do it. They say the disease doesn't take the person, another ailment does.

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It’s just so, so hard. I hear you and am walking the same road.

It’s heartbreaking. Each visit is another exercise in grief.

I pray on the way in, begging God to help me be of some kind of service to my mother and her caregivers.

I also ask God for the courage to even go in there, sometimes. Cause it just hurts.

I understand what you’re going through.

Praying for you tonight.

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This is so sad and dreadful and it is what happens to all of us, whether wife, husband, sister, brother, child, or friend; essentially we lose a person while the husk of them remains.
I think it may help you to get some counseling and often Licensed Social Workers who are specially trained in life transitions are best. In all truth you are mourning already and no death of the physical body has occurred. Moreover you are a witness to what can seem like a torturous journey of someone you love when you cannot help.
There is really no way through grief but working through it with time. Do consider getting yourself help just so that you can hear, comb through, and somehow manage to compartmentalize for your own protection. I am so sorry for what you are BOTH going through.

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(((Hugs))) to any and all of you going through this. Every story I read here truly breaks my heart each time. Just the biggest hugs for the difficulties- sadness and loss you have all endured.

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A doctor on Youtube summed it up best, "The person is there in the flesh, but who they were is gone"

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I'm so sorry for what you are going through. I think you'll find that most people on this forum can relate.

I think my mom knew who I was most of the time. But there were times that I wondered. She looked at me the same way you've described. Like I was that nice gal who came to visit.

I can't give you any advice cause the crushing sadness you described pretty much sums it up. The way I got through it was to take myself out of the equation entirely and just concentrate on making those visits as happy as I could for my mom. I could always make her laugh with my self deprecating humor or describing my horrific in-law experiences for her. Anything I could think of so I wouldn't have this sad, long face when I saw her. When I left I'd give in to the sadness. I took many cab rides home with sunglasses on so the cab driver wouldn't know I was crying.

The situation is unfair as you describe but alas, it's common. God bless you.

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I would visit the memory care side of the nursing home as I was on the skilled nursing side every day - I wanted to see if the people I met would remember me. They wouldn't. I'm also going through memory loss myself so this is 2 parts. First after finding out no one would remember me, I would make it a here now situation, meaning - we would enjoy life, not the future or the past just now. Second, as my memory slowly slipping away, I've been slowly morning the loss. Because I can watch tv shows as if they are bran New. I can't really create any new memories. It seems to be a lot harder for family. I've made a picture book of my favorite memories I don't want to forget, so when I do it will be just a wonderful book someone can tell me about.
This is a new chapter in her life now, adjusting you must make. It's quite scary to have you memories disappear, it sucks......love and peace to you

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It’s helpful to read others going through the same things I’m going through. I’m her daughter, sometimes I’m her sister. Garbled words more and more. Oh, and she swears she is pregnant. Sleeping more and more. Refusing all medications. I believe she is in stage 6 dementia entering stage 7 but no one says or mentions it in the home. I have a group meeting tomorrow with all the caregivers, something that occurs every 3 months I’m told. Maybe they will shed some light. I just let her talk, and nod my head. After an hour, it’s all I’m able to manage and have to leave. I used to go every other day but so many times she is semi conscious and it’s a long drive out there. So I’m cutting my trips to every third day now. It’s all so sad to see how fast the changes are now taking place. At this pace, I don’t see her on this earth two years from now. My doctor has me on medication to help my nerves, it’s very helpful. For those of you needing medical help to get through this, seek it. I still don’t sleep well. ( Medicaid pending, no wonder). No one prepares you for this stage of life, do they.

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Try to console yourself by recognizing that her current situation may be less emotionally painful for her if she isn’t remembering (and dwelling on) all the loss she is experiencing.

Love her for who she is and savor every minute because they are precious and too fleeting.

Take comfort in knowing that many of us have shared this pain and suffered these long, difficult losses.

When you are not with her do things to take a mental break from your situation. I liked watching an occasional movie and felt it could give me a 2 hour respite from my sorrow. Workouts of any kind were also helpful. Make sure to preview the film’s subject matter to make sure it is not emotionally painful.

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I am so sorry. I know this sorrow and the repeated heart breaks that this disease brings to those of us caring for our family members. The repeated loss really is the long goodbye. They keep losing a piece of themselves and they are so intertwined in our lives and who we are...so it's a cut that is deep. I don't have any words of wisdom only to say that you are not alone. We are all here with you and we know the same pain you are experiencing.

Family members who are seldom around mom don't understand when I say that I feel I lost her a long time ago. She is not the same person and I am not the same person to her at this stage. I am taking care of her body until it decides to leave as well. I feel honored to do that for my mom. It makes me feel good that I have been entrusted to do that for her. It really healed me a bit to look at it that way.

Hugs. I know the first time is a shock.

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Nicely said. My mom left long time ago and replaced her with this lady. When her season is over, I won’t grieve as hard because she left long time ago. For now, I’m trying to care for this new mom until God takes His breath back.

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Dementia is a disease that steals your memories, cognition as well as many more things. It is progressive and can change abruptly. My husband would know one day who I was and within the same day or next think I was the lady who took care of him. It is not personal but rips your heart out. I suggest you join a support group. I fought it for a long time but it was the best thing I did for myself. Don’t take it personal but make every cognitive moment count. Show her pictures and recount family times. There are small windows where they will understand but I feel better being able to give him that. Mostly realize you and she are not in control of this and continue to love her unconditionally. I just smirk to myself wondering who I will be today to him but most of all he trusts me and is comforted with my presence and I feel there is recognition of some sort. It is definitely a mind set change for us also.
prayers to you and your mom.

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Yes, sadly it happens, but as time goes by, you’ll grieve less and less and begin to accept it. My mom had 10 children yet if you ask her how many she has, she replies that she didn’t have any kids. Such is this awful disease that robs them of precious memories. As you visit her, just enjoy that moment. She may have good days where she’ll remember memories of years ago. It doesn’t mean that she is getting better. Just enjoy that brief moment.

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This may seem unfeeling-and I don't mean for it to be.

You had/have a loving, wonderful relationship, that until very recently, was a great addition to your life. Things have changed, and you no longer have that. BUT...

you DID have it. One day, after all this is over, and mom has passed to the next stage of existence, peace will find you and you will find that the good memories will still be there and still shoring you up as you travel through life.

A lot of us on this site DID NOT and DO NOT have any 'warm fuzzy' feelings for our parents who are still with us, giving us grief and actual emotional pain. I ENVY you, I really do. My daddy was a sweetie, so, of course, the way life goes, we lost him waaay too early. Mom is, to put it nicely, difficult. My MIL actually hates me (states it to anyone she talks to, so it's not just me making things up)...how I wish I had that kind of relationship with ONE of these women.

I was blessed with tremendous grandmothers whose memories I cherish, so I'm not totally w/o that kind of love.

It is so hard to watch a LO slip away, quietly and daily just leaving us. My heart aches for you---but do spend some time thinking of gratitude for what you HAD. SO many of us do not have that.

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I was-47 for 5 years. Marriage was 45 years.
Your reactions and approaches match mine 100%.
Dolores, passed away two years ago. I know
She wanted me to go and on with life and with grave inability to do so, I did so, very slowly but
after two years and working hard I learned about new "life" and following loving suggestions.

Good luck.

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I am going through the same thing but with my husband who is 72 years old. We were high school sweethearts and we’ve been married for 52 years he’s the love of my life. Yesterday I had to place him because he has gone downhill in the last two years and basically can no longer do anything for himself. He no longer recognizes me as his wife and asked me when my shift ends and he’ll call me by my name but thinks I’m just a friend or a healthcare provider. I’m a retired nurse and I feel helpless that I had to place him and I’m not physically or emotionally able to do what he needs done. I cry nonstop as to my two adult children. He sometimes knows who they are but he does not know which child belongs to which daughter and no longer knows our grandson’s name which is devastating to all of us. The only thing you can do is just keep remembering his their brains are broken and they still feel the love that we have for them deep with inside of them. We just Can continue loving them as much as we can and hope they feel our love. You’ll need to get some type of counseling in order to help you deal with it. This is an evil disease that is so unfair and so cruel. Good luck to you I’m sending hugs your way. I understand 💜💜

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There is nothing you can do to 'fix' them - they are broken. Try to love them, if you can, and recall the good old days. Know this is your grieving time for what now is and it too shall pass. Just accept this is part of life. Heartbreaking but true.

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Mfitz03: I am sorry that your dear mother is ill. Continue to show love. Virtual hugs coming to you.

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Mfitz, yes, grieving the loss of her, while her body is still alive is very normal.

If she is responsive in anyway, you can make your visits a happy time for her. My grannie had no idea who anyone was, she remembered she had a daughter but not a son but, couldn't recognize her daughter sitting next to her. My grandmother on the other hand was completely unresponsive to human interaction. She just looked right through everybody and nothing registered. Those were the tough visits, because the lights were on but, there was nobody home.

Finding things that bring her joy in the moment is how I got through. Visits included changing her babydolls clothing, tucking her in for a nap, after making a fuss about how beautiful she was. We shared a coke, which made her shiver from the carbonation, she would giggle and so would I. Then we would go for a walk, me pushing her and pointing out pretty pictures or flowers, then we would sit in the garden and chat, couldn't understand many words but, agreeing or making sounds of sympathy, all dependant on her facial expressions, then back to her room to play toss with a plush stuffed animal. These visits were very active for her and didn't last longer then an hour. Short attention spans require constant activity. She was always an amazingly happy, playful person and that atmosphere continued until she died.

I really recommend finding a treat that mom really enjoys, bring it every time. Take her out of her room and point out things that are pretty to look at, mostly find ways for both of you to have a good time in the moment. My grannie didn't have a clue who I was but, she knew that her time with me made her feel loved and happy and safe, how do I know, because her eyes would light up when I said hi grandma, it's me come to see you.

Visits were all very similar, she enjoyed what we did and it worked. Made it easier then trying to come up with something new for every visit. She didn't remember that they were groundhog day and that was what mattered.

I am so sorry for your loss. Alzheimer/dementia just sucks. Give yourself the grace to cry but, please don't do it in front of mom. I think they understand emotions, even if it's not comprehended, your tears can make her sad. So smile, laugh, play and you will find your way through these visits.

I still miss my visits and it's been 9 years.

Great big warm hug!

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My grandmother would put on her "company smile" when I went to see her. After about 10 minutes, she'd look at me and say "Now I know who you are" and she'd call me by my aunt's name. I never corrected her, because it really didn't matter.

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Quite literally you are mourning the loss of your mother; I suppose it's one reason they call Alzheimer's/dementia 'the long goodbye.' Grief is not just at end of life but during a relationship when it changes drastically; it is completely 'normal.' It is unsettling to discover your beloved is no longer 'there' but still in a familiar form. It's baffling and requires shifting to a new way of relating to that person; you ARE now 'just' a 'nice girl' to your lovely mom; even if she doesn't recognize you she feels your heart, which is the most important part. Let yourself cry when you need to; some of it is loss, some of it is the poignancy of love even when it hurts. Your mom cannot 'mother' you anymore, but you can be the nice girl who brings comfort and companionship to a lovely older lady you just met, because you have in fact just met her; she 'reminds' you of your mother, and that's a beautiful thing. Bless you.

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My mother's decline began last year just as the Covid shutdown was beginning. Our visits were through windows and talking on the phone but I could see and hear how she was slowing losing her faculties. I knew things were getting bad when she started calling me by my aunt's name and telling me tales of seeing long dead people. She didn’t recognize my brother and kept asking if her mother had died.

Mom really enjoyed the crafts at her memory care. It was sad to see a woman who had been a skilled painter and seamstress making crafts like a kindergartener. But then I saw how happy and contented she was doing simple things like coloring and decorating cookies. That was her new reality and that was OK.

You can keep your visit short, the fact that you are there is what is important. In Mom's final weeks I would stay 15 minutes and by then her attention had drifted somewhere else.

Yes, it's hard to watch someone lose themselves. But at the same time you have, I hope, good memories of your life with her. If she had died you go through a grieving process. It's the same thing with dementia, the person is gone even though the body goes on living.

My advice is to visit and just go with the flow. Don’t try to force her to remember, her brain can’t and you will just frustrate both of you. Mom would tell me stories about things that had happened and I would just smile and say "how nice that so-and-so was making a movie down the hall!" You will need to figure out how to find joy in any interaction you have with her.

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So many people use the term "heartbreak" in so many situations. The people posting to this site truly know the meaning of this term. We (or at least I) physically felt my heart "breaking" each and every time I interacted with my sister during her last year of life, especially the couple of months she was in a memory care facility. She smiled whenever I was with her; she clearly found some comfort or pleasure even though she didn't know who I was. It's been almost 7 weeks since she passed away and I really don't want to do anything except veg out watching reruns on TV. My patience is stretched thin and I don't even want to talk on the phone with anyone. My husband has been wonderful about it but I think he thought that once my sister passed away everything would go back to "normal." While my sister was alive, what gave me the most comfort - and I think gave her a great deal of happiness - was giving her lots of hugs every morning and telling her how much I loved her. Use this time to consciously do everything you need to so as to not have any regrets once she is gone. The sadness and permanence of the loss are hard enough to cope with.

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Oh honey, I know exactly how you feel, I am going through a very similar situation. My mom was an amazing mom too, she was a single parent and I am an only child so we are very close, and I thought we always would be. I marvel at a universe that is seemingly so unkind and random that it allows the body to live but lets the mind go to pot, ensuring that those of us who retain our mental faculties suffer the crushing pain and grief of watching our loved ones slip away from us. You are grieving, absolutely. You're grieving the loss of your former life with this person, the security of having them support you and love you and share in your life. My mom has moments where she doesn't recognize me, and the pain of that is unreal. You are definitely not alone in feeling this way. The agony of knowing that your rich history together might be gone from her memory is so hard to deal with. I wish I could offer some magical solution, but I can't. I haven't figured out one for myself either. The only thing I can tell you is what I know for sure, and that is that the price of great love is great loss. I have cried nearly every day for a month, and I torture myself with memories of my mother being her old self, which was a strong, smart, independent woman who I now see reduced to a barely communicative shell of her former self. The only comfort I have is hoping that my efforts to make her smile are making a difference, that in the past I made her life so happy that those memories sustain her. If not, and her current mental state is tricking her into believing that I'm against her or that she's unhappy all the time, then I know that I've done all that I can and that in her clear moments she will know that. I have no idea if any of this helps, I'm exhausted because my mom was taken to the hospital this morning for her third time in about two months, and I'm going to be dealing with a fresh Hell when I tell them that she can't come home this time because she needs to go to in-patient rehab for a while. I hope your heart heals, I hope you find peace, I hope you find at least something to laugh about every day (my go-to is puppy videos on Tiktok) and I hope your situation improves. God bless.

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I'm so sorry. These situations are heartbreaking. Does she remember any songs? Perhaps you could start humming or singing one of her favorite songs or hymns and that might make her smile.

This video is quite good...

How to talk to someone with dementia
https://www.youtube.com/watch?v=ilickabmjww&t=10s

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Be with "nice girl" who visits and does pleasant things with her: tell stories, share photos, bring snacks, do crafts, listen/sing to music... She may not remember the relationship and the face but she will connect heart-to-heart with you. Cherish those moments.

Might I also suggest joining a dementia support group for family members. You will get a lot of loving support from people that also are dealing with the same issues.

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IMHO you need to see a grief counsellor. For you it is as though your mother has died. It sounds harsh but you are doing neither of you any positive good as regards your mother daughter relationship by continuing to visit. Yes she gets some company, and yes you get to feel you are being a good daughter in a way. But these visits are not part of your relationship with your mother - she has left the relationship as much as if she had died so naturally you feel grief and every time you go and visit it all starts again and again. Please seek some help for yourself you need to grieve and take a counsellors advice on visiting.

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Get help from the in house psychologist.

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