Dakim Blog

January 22, 2010

Why Do People With Alzheimer’s Act So Mean?

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Written by: Dakim

I don’t know about you, but when I’m lost, scared, and in unfamiliar surroundings, I tend to get a little mean myself. For a person with Alzheimer’s, this state of fear and agitation never really stops. Even if they remember who you are, who they are, and where they are, five minutes from now they may lose it. One of the best things we can do as caregivers is to lovingly detach from their tangled emotions and not take what they say or do personally.

Easier said than done.

Alzheimer’s can cause the areas of the brain that house our emotions to go haywire—those feelings of mania, anger, and anxiety are all lit up even where there hasn’t been a trigger event to cause such feelings. Understanding why our spouses or parents are “acting mean” can help us realize that they can’t remember what we said five minutes ago, they can’t necessarily control their unpredictable and unstable emotions, and they can’t always feel love or connection with us. Also know that drug interactions can aggravate behavior and increase feelings of paranoia—so mention any changes to your loved one’s doctor.

I grieved when I lost my mother to Alzheimer’s. I grieved when I finally hit that wall and knew she didn’t know me and didn’t feel anything for me. It felt so cold. So lonely. And yet I had to keep on keeping on, as the saying goes. I had to do intimate things for her—change her clothes, bathe her, brush her hair—and yet to her, I was a “nobody.”

Finally, I turned the corner. I chose to remember for the two of us. Her “mean” behavior didn’t throw me nearly as much. I would be our anchor. I would love when she couldn’t. I would show kindness and patience when she couldn’t.

Yes, there are neurological explanations for Alzheimer’s behavior, but the bottom line is that we—the daughters, sons, spouses, friends, and caregivers—have to dig deep and choose to go on, to love, and to act with maturity and grace—regardless.

17 Comments »

  1. Very true and heartfelt account of caring for someone with Alzheimers- well done!

    Comment by whereforcare — January 23, 2010 @ 12:15 pm

  2. Carol,

    I remember my mother’s “mean” stage as well. It was so disconcerting – my mother had always been so sweet and compassionate, and suddenly she was losing her temper, even shoving the grocery cart at my dad when they went shopping….

    So often we loved ones and caregivers don’t know what to expect from our loved ones who have Alz. This mean stage is one of those documented and expected phases. If we know ahead of time that it will probably happen at some point, then it’s easier not to take it so personally.

    So that’s the message here. If your loved one has some dementia and you suspect it may be Alzheimer’s — then know that at some point, it’s very likely you’ll experience this meanness for a period of time.

    Trisha Torrey

    Comment by Trisha Torrey — January 25, 2010 @ 12:35 pm

  3. Hi Trisha,
    Thanks for stopping by. And yes, information is power. Knowing what’s coming down the pike can help you not feel like you’re the only one. I’m one of those people who don’t mind when someone tells me the movie plot–and maybe I’m the same with caregiving–fill me in! I hope you’ll hop over to Caring.com–I have a new forum, “Candid Caregiving,” and I so want caregivers to share their experience–and help each other. I’ve heard of a few people who say that their loved one got sweeter with Alzheimer’s–I was quite envious:)
    Again, thanks for commenting.
    ~Carol O’Dell

    Comment by Steve — January 25, 2010 @ 9:51 pm

  4. Thanks for commenting. I’m so glad that caregivers have an online village–we all need each other when it comes to caring for loved ones with Alzheimer’s.
    ~Carol O’Dell

    Comment by Steve — January 25, 2010 @ 9:52 pm

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    Pingback by Tweets that mention Why Do People With Alzheimer’s Act So Mean? « -- Topsy.com — January 26, 2010 @ 7:50 am

  6. I am struggling with caring for my 70 yr old mother and my three very young children. My mom is in the early-mid stages of Alzheimer’s. I often wonder if her behaviour, mood, attitude is because of the disease or if it’s just ‘her’. I find myself angry and frustrated. My mother wasn’t sweet and we weren’t particularly close emotionally. She was self-centered and self-serving before she got Alzheimer’s, but liked in the community for all her ‘good works’ that the public saw. My siblings wrote her off years ago…so did her siblings. My Dad died a few years ago. I wonder how much of my life I should give up to care for her when she’s got no one else. She’s mean to my kids, my husband and me, she bad mouth’s us to people in the family and community. Suggestions?? Also, she is in complete denial of her disease and has blamed me and her doctor for changes in her life. She failed her driver’s test but blames me for taking the keys or the doctors for telling her not to drive….she thinks we’re after her money, house and assets…when all we’re trying to do is protect her, as she gets taken advantage of often.

    Any help or suggestions or similar stories would be much appreciated.

    Comment by Ashley — April 13, 2010 @ 8:07 pm

  7. Ashley, I noticed your posting was over a year ago. If you change the sex you could have been describing my husbands behavior. The disease is something new but the meanness is not. I was wondering did things get any better?

    Comment by Linda — June 3, 2011 @ 4:44 pm

  8. My mom is 78, in fairly good health except for the
    Alzheimers. She’s had it for about 31/2 years now.
    I feel like my mom is dead, and this other person
    Is someone I really don’t know or like. I know
    That sounds so cold, but that’s how I feel.
    She used to be wonderful to me, I was always
    the favorite kid! Now she only thinks about
    My brothers kids, who are lazy no good thieves
    And never talks about my decent hard
    Working kids! Why is that?

    Comment by Holly — October 5, 2011 @ 6:25 pm

  9. Thank you, Holly, for sharing your experiences with your mom, as difficult as things have become. Alzheimer’s disease (AD) is so deeply personal to the individuals with it and to their families and friends that I hesitate ever to insinuate “knowing” anything, but what I do know is that as a caregiver, finding sources of support is essential. That’s because, like any significant loss we can experience, the very nature and magnitude of AD’s impact on our relationships fall in the “Meaning of Life” category of life lessons. It upsets everything, exposing vulnerabilities in ourselves and our relationships and often bringing out the worst in everyone involved. But the fallout from that impact doesn’t have to sink us completely. In fact, our caregiver path through Alzheimer’s can be one of reflection, shifting gears, and experiencing life through a new and perhaps even more meaningful set of definitions and criteria than we had before.

    With that said, here’s where your question took me:

    In short, whether a person has Alzheimer’s disease or not, it seems like negative or worrisome thoughts and feelings are just easier to hold on to than positive ones. This has fed the families of millions of therapists and self-help writers over time as we all try to rid ourselves of the negative recordings that play over and over again in our minds by committing positive affirmations to our hearts. As a student of nature (human and otherwise), I think it has to do with how our brains are wired for problem-solving–specifically, if there is no perceived problem, our brains say “forget about it and move on.” It’s only if there is a perceived problem (or threat) that we focus on it. I know that if I am already worried or agitated about an aspect of my life, I can focus obsessively on problems (even unrelated ones) until I am satisfied that I’ve solved at least some of them.

    A person with advancing Alzheimer’s is often worried about a great many things–particularly stemming from a disconcerting awareness of their gradual loss of connectedness. They are often trapped between not always understanding what is going on and barely being able to remember things. Positive news and reassurances from family and friends can fall on deaf ears because it does not require that “fight or flight” attention. Sometimes good news or encouragement can even be received with a measure of suspicion–particularly that you are treating them with kid gloves and not telling them everything. That spotty and ever-more-garbled sense of the world, along with gradually losing control over most aspects of their daily life, puts them on extra alert to anything that is amiss or missing. A vigilance takes over, focused on the aspects of things and people that they feel require their attention—a loop of check, check, double-check, check, double-check, etc., that everything is correct in their minds as they perceive it and that everyone they can remember is okay.

    This kind of attention and vigilance takes an enormous amount of energy and time away from thinking about anything else. Specifically, your nephews/nieces may, deep down, be a considerable concern to your mom (particularly if she hasn’t seen or heard about them in a long time but still remembers them), while she may be confident that your own kids are okay (particularly if she sees or hears about them more regularly). Therefore, the positives are let go of to make room in her mind for the things and people she believes really need her attention.

    That’s just one possibility, though–you are unique, your mom is unique, the course that her Alzheimer’s is taking is unique, and your relationships with your mom and the rest of your family are each unique, so I don’t want to speculate too much on your mom’s trigger issues–you just need to try different approaches to see what helps turn her negativity around, even if only for short periods of time. To my mind, the bigger issue at hand isn’t how your mom is relating to the world but how you are coping with that.

    If you’re like me, dealing with something I cannot control–particularly something like change, where I am feeling feelings within myself that I may be appalled by or even ashamed of–is frustrating and upsetting. I have learned from friends in hospice care, however, that we all are constantly in a state of grief over some loss/change or another, no matter how insignificant it may seem.

    A change in our relationship with a parent we were once very close to is, obviously, no small grief. Beyond the sense of loss we experience, much of that grief comes out of our long-held beliefs and expectations about that relationship, which the adult child in us wants to have stay the same for as long as we need it. That’s a lot of pressure, particularly since life IS change. My best tool in all of this has been coming to know myself better than I ever thought I would. This self-knowledge has helped me be better at recognizing the rock and the hard place I keep putting myself between by denying change and my feelings about it, and then adjusting (or even, at my best, completely letting go of) my expectations.

    For example, in the final stages of my mother’s life, when I’d visit her, she’d rarely acknowledge my specialness to her when I was in the room, even if I came bearing gifts. She’d talk fondly about anyone and everyone who WASN’T there at the moment, which I reacted to by feeling sad and insecure about her love for me. When I finally compared notes with my siblings, I learned that they were experiencing the same thing! This helped give me some sorely needed perspective–and we began a practice of sharing what Mom said about us when we weren’t in the room.

    At that time, I also had to realize the hardest thing of all–my mother was indeed going away from me, gradually, day by day. I couldn’t be her little girl anymore, expecting all the nurturing and expressions of love I had grown up with and come to rely on even as an adult. My biggest cheerleader, my touchstone was not there for me anymore. That’s when I knew I was already in the grieving process, long before my mother passed away–because our relationship was changing. My mom had a saying when any one of us was pushing her to her limits (particularly when she had FOUR kids in puberty under one roof!): “I love you. I may not like you very much right at this red, hot, bloody moment, but I always love you.” In her final time on the earth, it had landed squarely on me to simply be there for her in that same way–to be in her moment, whatever that consisted of and whether or not I liked how she was behaving at the moment–because I loved her. This has become my codicil to the Golden Rule.

    My mom’s been gone a long time now, and I still miss her unbelievably. Now, however, I also carry with me the comfort of knowing that what was happening to our relationship was not by my mother’s choice, it was the course of life. And that I had chosen to relate to her in a different way that made much of the remaining time I had with her something I could remember with fondness. And I’m proud I was able to find something within myself so I could make that choice.

    I hope this helps you in your quest to understand your situation with your mom. There’s nothing like hearing from the caregivers in the trenches, so keep surfing the Net for others who share your situation. One website I find myself going back to again and again is the Alzheimer’s Reading Room, which not only chronicles the experiences of founder Bob DeMarco and his mom, it offers lots of connections to other caregivers and resources.

    All the best to you and your mom!

    Comment by Brenda Matteson — November 9, 2011 @ 3:10 pm

  10. I feel so alone. I am taking care of my 89 year old grandmother. She treats me so mean. Not to mention she did not treat me well when I was younger. She has Alzheimer’s and I am stressed. I decided to care for her so that I could show her what type of person I really am, but it has backfired. Sometimes I feel like crying, I just can’t take this anymore. But the rest of my family seems to be so buzy with their lifes, I can’t just desert her.

    Comment by Nichelle — December 9, 2011 @ 11:26 am

  11. I’m so sorry that your efforts to care for your grandmother are causing so much strife in your life. The first thing to remember is that you are absolutely not alone. There are roughly 6 million people with Alzheimer’s in the United States alone, and virtually every one of them is being cared for in part or in whole by loved ones who are trying to do right by them.

    Secondly, as Trisha says in an earlier comment above, remember that the mean stage is a documented, expected phase of Alzheimer’s disease (AD). Millions of caregivers are going through this with their loved one and looking to share support with others in the same situation.

    It sounds like you are caring for her in your own home (true?). Caring for an aging loved one, regardless of their cognitive fitness, isn’t easy when you’re trying to do it by yourself. It can have its rewards, but overall, it is an exhausting effort, physically and emotionally, and one in which it can become virtually impossible to get any distance from the hardship.

    Knowing all that, the next step is for you to get some support.

    My first stop would be to get some information from the Alzheimer’s Association (www.alz.org) on caregiver support groups and start attending them, even if you have to arrange for someone to look after your grandmother while you go. You have to meet others in your same situation, if only to prove to yourself that you are not alone.

    The Alzheimer’s Association can also point you in the direction of caregiver support services. If you are caring for your grandmother at home, you may be qualified for respite periods–weekends or a few days where your grandmother will be cared for in a facility so you can have a little recovery time to yourself. And programs like this are in place because there are people out there just like you who need a break.

    Aside from that, keep surfing the Web. I’m sure you’ll soon find pockets of support in all kinds of places that can help you through this.

    As for the rest of your family, you’re right and they’re right: Life is busy. That’s a fact for everyone. We all have a lot on our plates at any given time. You need to find out a little more about where your family members are in relation to caring for your grandmother. Here’s a few questions to ask them or yourself:

    Are your family members as invested in and inclined to care for your grandmother as you are? Life is busy for most people, but we usually can make room for the things we want to do. The key word is “want.” You need to know who’s in this with you and who isn’t, even if they will just be willing to accept it as a family responsibility they will share with you.

    Are their any members of your family that your grandmother treats (and has treated) better than she does you? Trying to prove yourself worthy of your grandmother’s affection isn’t likely to be successful at this stage of her Alzheimer’s and is only going to make you feel worse. There may be someone else in the family who has had an easier relationship with her in the past or has the ability to maintain some crucial emotional distance from her mean behavior–how she’s acting isn’t necessarily personal, but it can feel like it if you are emotionally vulnerable.

    If you still ultimately end up remaining the primary caregiver for your grandmother, ASK FOR HELP. What are some things the others in your family (or even your friends) can help YOU with? In the midst of the wealth of practical tasks and chores involved in caregiving, getting even one unkind word can break you. If no one in your family feels inclined or prepared to “work the front line” of caring for your grandmother, ask them to be your “back office” of helpers, supporting YOU with shopping, cleaning, transportation, etc. That will help you reserve some energy for the actual interaction with your grandmother, which is just about impossible to uphold when you are exhausted.

    Finally, don’t ever forget your friends. They can be a remarkable source of support for you in very practical ways. Because they have a little distance emotionally from your grandmother, they can help you out with the tasks at hand without the relationship worries. As your friends, they’re there to help YOU more than they’re there to help your grandmother. So don’t forget to ask them for help now and then–sometimes just having them there with you can dilute the tension.

    I hope this helps you in some way, Nichelle–your sense of responsibility in caring for your grandmother is so commendable, even if your intended outcomes have not proven out. What you do now will make all the difference in how you get through this with your grandmother, your family, and your friends.

    Comment by Brenda Matteson — December 9, 2011 @ 4:48 pm

  12. Does the meaness ever go away? I love my Mom dearly, I find myself looking at her and I do not know who she is. When she calls me bad names, throws me out of teh will, tells me I am teh worst child ever, I cannot help but cry. I have only been caring for her for 5 weeks now, I have cried daily. I feel I am grieving the loss of my Mom. My Mom has always been here for me. When I was in my early teens, she wrote a letter to Ann Landers. She explained that she is a Mother of 7 children and her youngest daughter is Gay. ( Mind you, even I did not know I was). She wrote, How much she loved her daughther, and was afraid that my life would be hard and unforgiving. I cry everytime I read that and Ann’s response to my Mom. Ya see, I am teh executor of my Mom’s, along with the will my Mom gave me a Vanilla envelope that reads, To be opened upon my death. In that envelope is the letter. I am now 54 and I still cry over her need to protect me.

    Anyways, I mourn her daily now and wish I had an expert to write to so I could protect my Mom also. I want so bad to be here and make sure she lives the rest of her life with dignity, laughter and plenty of Love.

    Any advice from anyone? Will teh meanness go away?

    Thanks\Colleen Sunnyvale CA

    Comment by Colleen — June 5, 2012 @ 3:19 pm

  13. Thank you for sharing your situation, Colleen — this blog article is the single most responded to post we have on our site, and for good reason. The emotional changes in a person with advancing Alzheimer’s can be incredibly heart-breaking, particularly when, as you say, you are already in the process of grieving the loss of your loved one.

    The good news is that in the vast majority of cases this is indeed a stage that your mom will pass through, followed by greater emotional distance. The hard news is that everyone is unique as to how long the stage will last. If your mother’s Alzheimer’s has been progressing quickly, this stage may pass fairly quickly as well. But what still remains is what do you do in the meantime?

    In short, this is an unbelievably difficult stage to handle on your own, regardless if you know that at some point it will most likely end. The situation is simply too emotionally charged with her dementia (full of confusion, frustration, grief at the loss of her cognitive abilities and independence, etc., which fuel the anger) and your grief to handle it alone. If it is at all possible, you should get help from others–preferably those who know and love your mother–who can spot you time away from her side.

    Also, know that this is the dementia lashing out at you–your mother is still in there somewhere, loving you and wanting to protect you as she always has in the past, but shrouded in decreasing understanding of her environment, what people are saying to her, and even what she herself is thinking. I don’t know about you, but when I was a teenager, and as it is with most adolescents, hormones would often get the better of me and cause me to be, as my parents used to say, “unfit for human consumption.” During those times, I was unreasonable (and only infuriated by people trying to reason with me) and just felt so frustrated, confused, and angry that I was miserable until it passed. This is the way I think of the mean stage in Alzheimer’s, and I remember the patience (albeit “strained” patience) my parents worked to show me, which was about loving me despite the fact that at the moment, they hardly knew who I was because I was so out of control. I now know that they were doing their best because they loved me. And that is what you are doing for your mom now–loving her despite the way she is behaving, and remembering that she is doing and saying awful things right now but she is not an awful person.

    Of course, despite my parents’ patience, there were times when we all needed a time out. That’s what your friends and family can do to support you–give you a stop-gap, emotionally and physically, so you can get out of the firing line. We all need that space to not only work through our emotions thoughtfully but even before that, to allow ourselves some room to let off a little emotional steam–be angry, be sad, be unreasonable, be ungenerous, be selfish. You have the right to feel those things. When I am taking in a lot of negativity (wherever it is coming from), lots of times I feel I need to maintain a level head and be practical with my reaction to it–either for practical reasons or because that was socially how I was raised. But feeling trapped in that negativity only makes it all the worse, so that’s when I go to a particularly caring and understanding friend or family member and unload it–complain, cry, rage, rant, whatever–to relieve the pressure of being reasonable. My sister has always been a good person for me to go to because she knows how I am wired–she knows that when I am a little sad or slightly crabby, there is something much bigger underneath. She then pesters me until I come clean with all that I’m feeling–and the only rule is that I don’t direct it at her!

    Here are a few of our previous blogs that may contain some advice you may also find helpful as you continue to settle into your caregiver role:
    How to Deal with a Grumpy Parent or Spouse (September 19, 2009)
    Caregiving at Home? Seven Tips to Beat Loneliness and Monotony (September 9, 2009)
    Stressed Out Caregiver? Laugh, Cry and Scream Your Way to Wellness (September 3, 2009)
    My Mom Gets Confused, How Do I Help Her? (September 2, 2009)
    Caregiver strategies for coping with cognitive changes in dementia (August 9, 2009) (This one is less about highly emotional times but still may offer you some practical ways to get the business of being a caregiver down so you feel a little more confident about managing your mother’s needs as they come at you on a daily basis.)

    There are lots of places to go online for mutual support and to learn and understand more about the stages of Alzheimer’s–I would start with AARP and the Alzheimer’s Association. Also, go ahead and search on your own online on “the stages of Alzheimer’s”–it can never hurt to learn more about what you are experiencing and what you can expect in the future as the disease progresses–reducing the surprises can help reduce the emotional impact of them.

    I hope this has helped you, Colleen. Please keep us posted on how it’s going, and certainly feel free to share some of your own learning and advice as you go along.

    Comment by Brenda Matteson — June 13, 2012 @ 11:22 am

  14. i understand where u all are coming from. my great aunt is 76 years old and she is in the early stages of this. she has been doing terrible thing to het family such as sewing her sister calling the cops on ppl in the family the worst this is she is hurting herself on purpose callibg the ambulance so she can go to the hospital to get more pills that she takes. her children have all turnes on her because of what she has been dping. this has been so hard for are entire family but we cant help her unless she helps herself. the doctors say she has to agree to get help bit she isnt so we have no clue what to do for her. she is a very important person to me and my fear is that my favorite aunt is going to forget me i really snt think i will be able to deal with that. i have been doing all i can but she has to do ot herself. all i no os that this is going to be a long stressfull road…

    Comment by hannah — July 4, 2012 @ 6:42 pm

  15. Thank you for sharing your experience, Hannah. It sounds like your family is in an extremely difficult situation. To begin with, though, remember that your aunt is not choosing to behave this way; it is the Alzheimer’s that is causing the behavior. With advanced Alzheimer’s, there can be a significant loss of the ability to process information in a way that allows your aunt to make decisions for her own benefit–and that includes possibly viewing her family and friends as “the enemy.” Choosing to help herself or get help could also be beyond her cognitive abilities at this point–and if that’s the case, those who love her will need to take the lead on her care for her safety’s sake.

    Secondly, as Alzheimer’s progresses and they feel their loved one moving further and further away from the person he or she used to be, families often begin to mourn their loss at the same time they are trying to relate to and care for that person. Do not underestimate the emotional support each of you will need in order to do right by your aunt, whether it’s finding support groups where you can meet with others who are experiencing similar trials or it’s “sharing the care” with family and friends so that everyone gets a break now and then from being on the “front line” of caring for your aunt.

    And finally, now more than ever, do NOT give up looking for the RIGHT professional support for your aunt, you, and your family–this is about not only her happiness but her safety. You need a team of healthcare professionals to help you understand your aunt’s specific progression of Alzheimer’s and the available care options so you can make decisions on her behalf, and by “RIGHT” I mean that if you are not satisfied with your aunt’s care team at present, shop for others. Your aunt deserves the best care possible, and you and your family deserve professional support that can help you help her.

    My wishes for the best to you, your family, and your aunt!

    Comment by Brenda Matteson — July 25, 2012 @ 12:43 pm

  16. My father in law has vascular dementia he has never liked me since I met his step-son 14years ago (or his daughters boyfriend)that I can put up with however we now have a 16 month old daughter who is doing really well using baby sign (as recommended by the early years framework) but he told her she “looked like a spastic”.
    I find this wholly offensive in so many ways having worked with people with disabilities. My daughter didn’t understand the words but was upset by the tone of the comment when she expected to be praised.

    I don’t think I should subject my baby daughter to this kind of behaviour but my husband says he didn’t mean it. Whether he meant it or not doesn’t change the effect on my daughter, and if he said it to rile me it is vile that he is willing to upset a baby to do so

    Am I wrong to prevent him seeing my daughter?

    Comment by Maria Christie — October 15, 2012 @ 5:12 pm

  17. One thing we learn as we grow up is that love is one thing and the expression of love is another. (And as we all know, organic mental illness such as dementia only plays into a relatively limited number of relationships in which this is problem!) If the brain’s wiring is affected by dementia, it is possible that while love is there, the expression of love is compromised.

    Damage to the brain can also affect mood and impulse control–both of which play largely into how we humans self-edit our thoughts before we express them to others. This could also be at play in how your father-in-law is expressing himself.

    I’m no child psychologist, but I do have two nephews that lost their mother to cancer at a very early age. In my research on how to help them cope with that, there were two things that stood out: 1) Children do not have the same cognitive and emotional ability to process life in general (much less the harshness of life) as we have as adults. 2) The impact of life on a small child needs to be revisited and reexplored throughout the child’s life as he/she goes through stages of cognitive and emotional growth–allowing him/her to reprocess such events each time they develop a few more tools with which to do so. Until then, the child relies on his/her parents to protect them and explain life until they are armed with the capacity to do so for themselves.

    That said, and from my reading, a small child is not equipped to process statements like the one your father-in-law made, regardless of his intent, and especially when you yourselves are not sure of his intent either (especially as to whether it was the dementia, as our husband believes, or simply meanness, as you believe). Such things even said in jest are beyond a toddler’s ability to interpret as humor or sarcasm. In either case, I would remember that your father-in-law’s behavior (dementia-related or not) is hard enough for you and your husband to sort out, so you can imagine how a less-equipped person like your toddler would struggle when confronted with the same dilemma.

    I hope this helps!

    Comment by Brenda Matteson — October 19, 2012 @ 10:56 am

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