II have been watching a wonderful series of videos on YouTube on a channel called "Joe Joe". It's about a journey of a son and his mother as she goes through the stages of Lewie body dementia. It's very touching and educational at the same time. Seeing first-hand the interactions of care and time spent is very heartwarming. It's probably one of the best learning tools for dealing with and understanding dementia I can think of. It's the reason why the son decided to make the videos.

humble78, you have a lot going on. It's good your children are visiting your father for you. If you haven't already go see your doctor and see if you can get help for yourself. Then when you feel up to it take small steps forward. Go in to see your father for a short visit with your children.

Nobody like having to see their loved ones go into a nursing home. It's tough to visit them there but you do it anyway. Even with Covid-19 restrictions I will stand outside my mother's window in the teeming rain so she can have a "visit" from me. My mother had to go into a nursing home because a hospital procedure left her completely bedridden and needing 24/7 care which I am not qualified or equipped to give. I live with guilt for not being able to care for her every day.

Before she got sick my mother was always a kind and hospitable woman offering tea and sandwiches to all. Some family and neighbours were very good and visited her in the nursing home before Covid-19 restrictions,

Others who benefited from her hospitality didn't visit. One woman in particular used to wring her hands whenever she saw me and say "I'm sorry, I'm sorry, but I just can't go in there". My mother was very kind to a cousin and her family and none of them bothered to come see her or call her before Covid-19 restrictions. I still talk to them but my icy polite manner makes it clear to them that I am not happy with their actions. If they try to ask for my mother I either give them a look that stops them mid-sentence or I don't answer and change the subject.

I know the OP was young when this happened but she had the maturity to be employed as a social worker in the SAME NURSING HOME her grandmother was. From my experience social workers are low in empathy (it seems to be a requirement for the job to prevent burnout) but how could she not visit her grandmother even if she didn't seem to recognise her? From what I can gather her grandmother wasn't abusive. Not only that, her father doesn't seem to have visited his mother much either.

This forum would be the last place I would go if I wanted validation for not visiting an elderly relative at the end of their days especially if my work brought me into contact with them.

Humble, you don't have to keep trying to be strong and say everything is OK when it really, really isn't OK. That's really a form of pride and its utterly immobilizing, as you are finding out. Tell someone you are scared and overwhelmed and can't keep pretending, because it is getting to the point that you are ashamed and you are even ashamed of being ashamed, and its got to stop somewhere, but you need help...and then go get the help. Being laughed at would not be as bad as what you are doing to yourself, which is tying yourself up in knots, and the chances of a hotline or professional person laughing at you instead of helping you are slim and none.

I am a very strong individual but at this moment I'm weak. My wonderful mother passed away when I was 19 at the age of 55 of a heart attack sadly. My dad was about 60 at the time. He was working really hard as a builder Lee's construction. I am the youngest of my parents kids I'm 37 now. When I was 21 I was working hard and things was looking up so I told my dad to stop working I will take care of him. I wanted him to work we he wanted to not mandatory. One summer I remember him smiling and working in the heat with sweat pouring off of him. I was successful in taking full care of my dad until the day my life changed. He was diagnosed with Alzheimer's or dementia at about 74. I lost a piece of me when my dad lost his mind. It was so sad very painful. We went everywhere together before and after the diagnose his grandkids games to work with me. He took care of his plants even through the sickness he fought his mind up until the age of 77. January 2015 our life drastically changed my dad had a stroke it messed my dad up really bad feeding tube, diaper, bedridden, etc... When this first happened I thought ok this is just a set back. He was in a coma for a month and a half the doctors gave up and asked if I'd like to make him comfortable to die I said please no doctor comfortable to live he's a fighter he would want me to do everything in my power to save him. I stayed everyday with my dad while he was in his coma and when he woke up. I was taught how to suction my dad I help change him etc... Now my dad is in a nursing home and now I'm not a good daughter, I've not seen my dad in a month it's killing me. I think about him alllll day my heart is heavy all the time. I'm depressed, sad, my hygiene became an issue I think I'm I'm losing my mind. I'm trying to save myself from losing my mind being that I'm aware what's going on. My kids go to see my dad for me almost every night. My dad still has his since of humor shockingly through it all. The main reason I searched this post is because I'm having a hard time going to visit my dad. To the point where I want to just die. One week I became an acholic, one week I was just angry, another week heartbroken it goes on. I've always told my dad not to worry I can fix it. I'm helpless. My dads brother passed away right after I sent him to Jamaica to visit. My dads brother was healthy when my dad saw him and they talked everyday. I wasn't able to send my dad back to Jamaica. This was 4 mths later my dads condition had worsen to confusion not just forgetting things. So we missed his brother's funeral. My dad went down hill a few mths later. My life is crazy right now on top of June 4 2015 my daughter had a benign 7 lb tumor removed out of her tummy. She's already had open heart surgery. I will end this post now. I'm sorry no one to vent to. I have an embarrassing case of anxiety that's not treated, and could be laughed at so I stay to myself. I'm thankful for my 2 dauggter's and husband. I don't want to every explained to them what I'm going through. They wouldn't understand because I always tell them don't stress everything will be ok.

Deanna, first I want to apologize if my post came across as judging you...that was not my intention. I wanted to be honest about how it does hurt me when people say, I would go visit but I don't think she will remember me. I don't judge the friends of my mother, I really do understand their feelings. I still keep in touch with them, tell them how my mother is doing. What I will say to you Deanna, for every family you help, you also honor your grandmother. Many Blessings to you!!

I was asked to write about an experience I had shared with someone with dementia that would hopefully help others on their own journey. An experience that taught me more than any amount of college ever could. The experience with my grandmother lead me on my professional journey where I have helped thousands of families to continue a "healthy" journey with their loved one with some form of dementia. I may not be able to reach every family and assist them yet the first step is to open your heart to receive. The point of sharing my story was to help other caregivers to not beat themselves up if they were having a bad day, month or year as a caregiver. To know that someone is here to answer questions or to listen without an ounce of judgement... Wishing you strength, courage and happiness with those in their days gone by,
Deanna

That's some intense stuff there - I do think people are being quite harsh toward Deanna. She was a *granddaughter* - yes it would have been good if she were more involved of course, but honestly her obligation is far less than if she were the adult child overseeing her mother's care. It almost seems like people are judging her as if she were a child of her grandmother rather than grandchild.

Deanna, Alzheimer's dementia is very hard on family and friends. I understand your hurt and pain with your grandmother not knowing who you were at different times you did visit. My father passed from Alzheimer's in 2003, Dec. 27th. I visited him 2 x's a week. One particular day, I could not engage him at all...after 30 minutes of trying, I told him I was going to leave, "I love you". As I got up to leave, he said loudly..."Don't Leave!" I then realized that even though he could not engage with me, sleeping most of time, he knew I was there. I sat back down beside him, we talked for about 20 minutes before he dozed off again. I am so grateful for that moment in time with him.

My mother also has Alzheimer's and is in memory care. When I talk with people who have been long time friends of my mother, it hurts me when they say, I haven't been by to visit her because I don't think she remembers me. Do you think she remembers me? It really does not matter if she remembers them, the visit is all about her...not them.

I realize that being forgotten by a loved one hurts...but it is also very painful to hear or get emails from family and friends saying, "I would go visit, but I don't think she remembers me.
Love and hugs to you!!

I have indeed done far too many things that I regret and am ashamed of. I try to own up, apologise, and avoid repeating them. I don't generally publicise them.

Deanna, I congratulate you on having the courage to come back onto the thread and state your case. I am sorry for your early loss of your mother, and I agree that your grandmother's mistaking you for her must have been traumatic. But you cannot come onto a forum like this, spend any time at all reading about what other people are currently - today - going through, and expect them to have much sympathy. What did you imagine you were going to teach us that we didn't already know?

I'm with vstefans and Deanna. Jeez! haven't you ever done something that you were very ashamed and regretful about? Deanna took a big chance confessing to her "abandonment" of her grandmother. And I bet the book advance was about $5,000, if that, and they won't be turning it into a movie any time soon! So she's not exactly raking in the big bucks from her book.

I don't blame you guys for getting angry. We all know people who have let us down, and who had pretty pi$$-poor explanations. But judge not that ye be not judged. I'm certainly not free enough of sin to be casting the first stone.

I thought I would comment since I am Deanna Lueckenotte. My grandmother died from dementia when I was 28 years old. I had just started working in the social work arena around the same time. I chose to continue my journey in the field by achieving not only my social worker license but my assisted living certificate as well as my nursing home administrator license. I wrote my book in 2009 after I spent many years learning everything I could about all types of dementia after my grandmother's passing to honor her memory since I failed her while she was still living. My goal is to help others through the journey that I did not understand as a granddaughter all those years ago. I made a decision that if I was going to stay in the geriatric arena I had to find better tools to offer to families. It took me some time to figure out that at first I was fueled by guilt and regret...through the years by helping other families I now have forgiven myself and pass on all the tools I can. I am now 41 years old and have spent over 13 years in the geriatric arena. I share my extreme failure at a personal level so many years ago in hopes to help other families to not fail at the level that I did. I will always regret my decision yet I know my grandmother loved me unconditionally. Watching my mom suffer for 6 months with cancer and die at the age of 21 and then to have my grandmother call me my mom every time I visited was too much for me. I do not excuse my behavior and I have apologized to my family and talked with each of my family members about writing the book and why it was so important to me to share my failure as well as all of the tools I have gained since her death. I wish each of you strength, courage and happiness with those in their days gone by,
Deanna

i visited my aunt one day several years ago and shed had some sort of mental episode and was spewing like a teakettle about how her daughter had financially ruined her and stole her savings. in another breath she was claiming her 8 thousand dollars was safe in the closet. it was phsyco babble at its worst. i didnt know about dementia or agitation in the elderly, or persecutory delusions back then. i was very uncomfortable with the manic assault on my senses and stayed away for a few months. i dont regret it now because i had been trying to keep her home , my home, and my mothers home maintained and it was too much. it was time for her leaching kid and grandkids to step in and care for her. i was making it too easy on them. edna is 90 now and we are again pretty close. it is indeed a head spin when an elder assaults you with a torrent of delusional babble. it wouldnt offend me now, i understand much more about dementia.

Let's just agree to disagree.

aw, ya'll...I think she knows. Part of my religion is a belief in personal forgiveness, not in terms of excusing as much as but being open to admitting failures and receiving mercy. Do I think she had excuses? Sure. Were they great ones? No, not necessarily, a deeper love for GM might have overcome the fear she had, and like so many stories we hear, there was also the knowledge that aunt was in there with her so not abandoned, which is good for GM and not so good because it helped her let herself off the hook too easily. It is not as bad as if she never even tried to visit at all though, and well, what else can I say, I think all of us need mercy in our lives at one point or another. Have not bought the book and probably won't, but maybe she's trying to write the book that would have helped her if it had been available, and trying to make a living at it so to be able to devote more of her life to the effort, which is not all bad as a way to atone...Maybe she does have a chapter on cowardice, failure, and regret in there. This whole thing and realizing it may make her a better SW than she was before, really. She knows how little people may know and how lost they may feel when they come into this arena at least. The one book is probably not going to make her rich though..the speaking engagements are probably better income wise. Just my $0.02.

suzie, you hit the nail on the head. How sad that she either doesn't realize how pathetic her actions were or, worse, knows and doesn't mind benefiting financially from her selfishness. Either way, if she's looking for understanding and sympathy, she's surely not getting it from me.

Once again I agree with CM and totally disagree with vstefans. In this enlightened world (and especially for someone as young as Deanna) there is help everywhere for emotional problems of every kind. As a social worker, she should have gotten help for her emotional dysfunction so she could deal with it head on, and be able to step up to the plate to do the right thing. If she really has the guilt she says she has (which I seriously doubt) she should quietly get help from a professional, and stop earning a living by exploiting her own bad choices.

vstefans, I take your point that it is important to understand why people feel negatively, when they do, towards mentally or physically suffering elders. Some go on to experience a kind of squeamishness which they find it impossible to overcome; and in my own case I experience a very extreme irritation with their then wringing their hands about how guilt-stricken they feel. What about how bereft their elder relatives feel, eh? Concentrate on that.

It is also true that Deanna wouldn't have had internet access to all the resources and support we have. But she did have access to her grandmother. She was then, and still is, in the business of caring for and protecting the vulnerable; and it wasn't so long ago that nobody had any enlightened attitudes to share with her.

But the real brass neck of it is in her now presuming to lecture anyone else - for profit! It is akin to a book on frontline warfare tactics being written by an avowed conscientious objector. I hope there's a special chapter on "Cowardice: how I failed miserably to overcome it."

I'm going to disagree, a little, and gently, with the majority here. There was a time when rather than understanding Alzheimer's and other kinds of dementia, people were ashamed of it. And what Deanna is sharing is that she found fear and worry that she was making things worse not better when she did visit. She truly did not understand and even though she is a social worker she did not have the kinds of resources we have, right here, and all around us on the internet, to find out. She did not have somewhere to post about how hard this was, or what to do about being mistaken for her mother. The decision to place Grandma was not even hers...but she still feels guilt about it. I think she is openly and honestly sharing her regret, and acknowledging that those of us who did visit and figure out more of how to handle things somehow had and have a blessing she does not share. It could inspire us to count our blessings, maybe begin to understand where at least some of those people who can't face their fears are coming from, and maybe even bring some of those people to do better for themselves and for their loved ones.

Hey, I know its hard not to be judgemental towards people who are not doing something that we found really really hard to do but did anyways, but this would be an opportunity to try. I did what I could, and I did my best, and I was with Mom when she passed on, but I have regrets too where I maybe could have done better.

I agree with the previous comments. I just have to add, or vent, that I witnessed something similar nearly 35 years ago while my mother was dying at home from cancer. She lived in a small, close-knit Pennsylvania mining town and her closest friend and several neighbors wouldn't visit her the last couple months of her life. "I just couldn't bear to see Lillian like that!" is what they told me at the funeral. And I told them that they should have visited, even for 10 minutes, because my mother missed them. Boo hoo is right, poor me! To this day I can't understand that behavior. My mother was mentally alert right up to the end and would have appreciated the visits. And, this is what grates, these women were the good "church ladies"-- in the choir, ran the bake sales, ironed the altar cloths, etc. etc.

I am trying to do with my dad. Enjoy and being present and even see the beauty of it all. Then, he comes up with a rampage/nasty comment and it is very hard to keep the initial romantic intention. Right in the moment, you are just trying to survive. I"m sure when he's gone, I wish I would have done better. But how do I do better today?

And now a rich social worker, with all those book sales. Rare species!

It is very hard to see someone who was once so full of life and outspoken slip away before your eyes. My father had mild dementia at the end and his last week on earth I held him almost all day because all he kept saying was help me help me. That is embedded into my brain. My ex-husband wouldn't go see his mother her last couple years because he couldn't stand seeing her that way. Then when they called to say she didn't have much longer he went to see her. We all hope our loved ones go peacefully and don't suffer. Every person handles it in a different way.

I agree with Countrymouse. No one likes to see their loved ones deteriorate due to a debilitating disease. You do it because that's what families do for each other. This sounds harsh and, truthfully, that's how I mean it to sound. Her refusal to deal with this difficult situation was selfish. She did what was best for herself, not her grandmother. She should feel guilty and if writing a book helped alleviate that guilt, fine. But her success as an author will not overcome her failure as a granddaughter.

I have looked in vain through Deanna's profile for mention of the relative with Alzheimer's to whom she was a caregiver, as is claimed above. The whole point of her article "Why I Couldn't Bring Myself etc." is surely that she bitterly regrets having rejected the opportunities to care for her grandmother - opportunities, by the way, which were more frequent and better supported than those which many people are presented with.

I realise that I will sound harsh. I accept and sympathise with Deanna's sincere regret; indeed it is my concern that my brothers are headed for similar emotions in the future. But I don't think I'm being entirely unreasonable when I say that this is the most striking example of "don't do as I do, do I as say" that I have recently witnessed. It grates, rather.