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My father went into care just over 3 months ago. His dementia got to the point where he was not safe at home and where my mom could no longer be his primary caregiver. Since then, I've tried to visit with my kids on a regular basis, bringing our toddler one day and brining my two older kids a couple days after. I made a promise to myself when he went into care that I wouldn't be that daughter who did not visit, and that I would ensure he still felt like part of the family.


But each visit all he talks about his coming home. He demands to come home. He threatens to just walk out (he's been deemed a flight risk). He doesn't understand why he is there and, in his mind, he doesn't have dementia and he is fit as a horse. He becomes more and more agitated. I try to divert the topic and talk about something else, but it never works.


My dad doesn't even remember where home is right now, just that he wants to come home.


It doesn't help that he thinks the staff are all spies and that the government put him in the care home because... reasons? I don't know.


I'm debating cutting down the visits to once a month, but I am scared that will further contribute to his mental decline and I feel so guilty at the thought of breaking my promise to myself. I love my father and it breaks my heart to see him struggle and to see his mental health decline so rapidly.


I guess I am looking for validation and maybe a way to make the visits a little less emotionally draining.


The visits are becoming emotionally draining.

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My Mother has been in a nursing home for over two years. She has dementia. She wants to go home too. But I have come to the conclusion that the home she is talking about isn't the same one I am thinking of. I now believe that home to her is a better place. Home with the love ones that have gone before her and a home where she can have peace and not suffer with this disease. Because just like your Dad she doesn't remember her actual home. With dementia you start grieving at the onset, as you lose your loved one a little at a time. Don't stop visiting. You will want to be at peace when your father passes knowing you did all you could and you were there for him. I will be honest and say it really doesn't get easier, but you will get tougher. Find joy in what you can and learn to laugh when you want to cry. Take good notes, because we may be there some day too.
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MargaretMcKen Aug 2023
A lovely reply
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Of course you love your dad. It's not him that's doing this, of course, it's that horrible disease. But if he still had all his capabilities, do you really think he'd want to put you through the visits you're having? It's ok to take a break. Or you can do quick check-ins at a time when he's going to be busy, like at meals or activities, so you can slide out. And you don't have to take the kids if it's going to create bad memories for them about their grandfather. Maybe talk to his provider about medicating for the delusions if they seem to keep him upset (for his peace of mind).
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Your father is experiencing agitation and anxiety because the world doesn't make sense to him. Try to talk to his doctor about his symptoms and see if you can get him prescriptions for medications to help calm him. Then, your visits will be more enjoyable for all.
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anonymous1732518 Aug 2023
Subtle way of saying keep him doped up.

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I recently put mom into MC. She did not want to go, but she had no choice. With her advance dementia, a recent pulmonary embolism, she could not live alone any more. It was very helpful the doctor put his foot down.

I was trying to visit mom once a week (after 3 week of settling in) she I moved her to me much closure to me. While at MC, I would get reports, picture, videos how well she is doing. Except when I visit her. She would dump on me with both barrels and she HAS TO GO HOME. I keep explaining to her the truth she cannot live alone anymore, and she gives me all the reason why that is not true. After the visit, I would use the car to let go of my emotions. This was very hard on me, but I do want visit her, but the emotional unloading of my mom just hurts, and leaves me depress.

On the last visit, I had my wife visit mom. She did not recognize her. After talking awhile she kind of remember her. She talked about how the place she was staying at was very clean and the people friendly, and she believe she will have to stay there for while. To my wife she seem happy and doing well.

I know mom is well taken care of. She is enjoying her activities. She has put a little weight back on. The best of all she is safe, and seems happy except around me.

I fully understand your feeling and how you are torn between doing the visit and not wanting to go....

PS Keep us up to date on your progress.
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My situation is similar. I never foresaw my mom in any sort of care facility, but here we are. She was fine at an Assisted Living facility I found for her, and then she tried to run and I was given notice that she had to move, and then a day or two after getting that notice, she assaulted a nurse while she was running again and I was told she could not come back. I had no time to break her in to the idea of a new facility - it just suddenly was. In fact during the disturbance she created, the responding police officer only released her to my care if I promised to keep her in my direct control until I got her somewhere secure. So we wound up in a memory care unit 30 miles from my home. I railroaded her through admissions while my husband and son packed her stuff and brought it to the new place. From assault to new digs was about 10 hours.

The next day Hubs and I went back to finish getting her settled in and she sat by the only door out of her room and glared at me and dared us to leave her there again. She smashed a picture I was trying to hang and shrieked at me for staining her white bedspread when I laid her clothes to be hung on it. At one point, she dragged a sweet little lady from the common area to her room to show us that "SEE? This is what they do to people here. This woman was perfectly normal a week ago and now she's an idiot." We finally gave up for the day and managed to sneak out the door, but she caught up with us and followed to the locking doors and wedged herself into the door as we were leaving. I had to go back in and lure her in and wait for a nurse to distract her so I could quickly exit, but I had to listen to her banging on the locked door behind me and screaming.

I could not make myself go back the next day, despite feeling like I should. I felt horrible for leaving her, horrible for not loving her enough to take her home with us, horrible for her circumstance, horrible for what she was putting my family through. I called the MC to check on her and a kind nurse assured me that although she was a little worse than most, they all go through this and they all settle down. She told me I was doing the right thing by staying away, that she would begin to rely on them instead of me.

The next time I went about four days later, I checked in before I went on the unit and they assured me she had settled down and was doing well. I picked up two fresh hot cookies from the lobby and went to her room and gave her a cookie. When she thought I made it, she loved it, but when I told her they had them in the lobby, she threw hers against the wall and knocked mine out of my hand - claiming they use cookies to poison people into submission. As soon as I was there, she flew back into defensive mode and pulled out all the stops to get me to take her home. It was like I had triggered her fight or flight reflex.

The first two months were hell. Pure hell. I visited her at least once a week and I never knew what I would face when I got there, but it likely wouldn't be easy. But then she started settling down. They got her med mix right and the staff really knew how to deal with dementia patients. They went slow and easy winning her over and during that time, I realized I did not have to go every week. It didn't seem like I was making more than an "in the moment" difference (and not always good), so I could take time for myself to take care of myself. I've settled in to a once every two weeks schedule, unless something happens and I go immediately (i.e. a fall). She seems to cycle through paranoia and rage and calm and happiness, but 10 months in, none of the stops on the cycle are too extreme.

When I saw her last, she had found a boyfriend and he was all she could talk about. I just wonder if he is real or not, but I ain't gonna probe too deeply to find out!
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anonymous1732518 Aug 2023
She sounds like a hoot.

Good for her

Cover909
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our situations are so very similar, along with the paranoia that the facility is trying to drug him, he doesn’t trust the nurses or caretakers. It’s the “prison”. I have limited myself to once a week. It seemed that my visits didn’t help and he just complains to us. I want to give him time to settle in and get used to this new home without me or my brothers being distractions and also thinking we might take him home. I may then go to every 10 days then every two weeks. We’ll see how it goes.
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<3<3<3 I am so sorry your going through this. It is ok to stop visiting him. It is ok to honor your own needs. Visiting him is clearly very upsetting to you and seems to agitate your dad because he doesn't understand. You are still a good, kind and loving daughter and human if you stop visiting. If stopping visiting is to hard you can start by just going less. It's ok, it doesn't make you a bad person or a bad daughter.

My sister completely cut my mom off shortly after my mom was diagnosed with stage 4 lung cancer that spread to her spine and brain and left her paralyzed from the waist down. She did what was best for her. She is living her own life. Nobody had to understand why. People will always have opinions about everything you do. Do what is best for you. Doing what is best for you is also what is best for your children and family. Honor yourself. It's ok. <3 I truly hope this helps you <3
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You're looking for validation? You know you have the answer. It's painful, heartbreaking and it leaves you lifeless. Go when you have the strength and go by yourself. It's really hard to humor people in that condition, I told Mom last night she confused me too much and I had to hang up, hurts badly. She's bedridden and has been talking to the science museum about a 16 foot fish in her freezer and she was working with crepe paper ( not there) and she wanted to find pictures of the family that were lost in a fire 50 years ago!?!?!? How do you come to terms with this?
It sounds political when he talks about conspiracy,too much news??? I'm not saying that it doesn't happen, government hides lots. How old is your father? Could be in the era of JFK? If so, there's so much going on back then. He's probably wanting some validation himself? Maybe he needs to get something off his chest that no one took time to listen to? Listen and respect his eagerness to tell you. There's a reason why they go there,I don't know why. Bits and pieces of memory they try to hold on to and they don't intend to hurt, but it does. I wish my father would have told me more, left me to find out everything he had going on about taking care of Mom. Take this as an opportunity to talk to him before he can't communicate fully. Hey Dad, what's up? So many memories of my father leaving with no information on his finances. Go see him and try to ignore the stories. Just, now and then, they are coherent and want you to hear. Be strong! You can find the strength to do it. He might just be trying to help you in the only way he can. It's hard to understand but if you really know him, you can figure it out. He's trying to tell you something,I feel it. Time has no meaning, he's not in the current year. Ask him what year is it? If it's this year? No more News! Mom thinks it's 2003? What year is he in? Go back and live in his shoes. Whatever year he says it is, is where you can reach him! Tell him you are there and you won't let those people hurt him! No conspiracy! You have his back! I'm trying to prove 50 years later there's no information of what she wants. Don't hurt, try to help him.
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I visit as often as I can mentally handle it. Sometimes once a week but sometimes once a month. It depends how much energy I have after dealing with work and kids. I do the best I can and realize I am not perfect and neither is m mother.

my suggestion is to get the neuropsychiatrist involved and see about altering medication. It made a huge difference for my mom without making her a zombie. Find a doctor who will take it slow and not overmedicate. She no longer thinks people are poisoning her food or plotting against her. Huge relief

good luck and don’t let anyone shame you into doing more than what you can handle.
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I would consider going alone. That way you are still showing your love - even if he is less capable of appreciating it and hopefully you will have no regrets when the end comes. As for the kids, they are kids, not an adult like you are. As such, they do not have the maturity and life experience to understand and be exposed to this kind of thing every time you visit. Take them occasionally if you want, but maybe do most of the visits on your own.
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stop being scared and visit your dad. He needs you and familiarity. If you love your dad and he was a good dad then this is your duty. This is part of his life with you in it. No Regrets! This is also a learning experience for your children---you showing them what you are doing and how you handle things and them learning about their grandfather with this disease. This will make you all stronger in the end.
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I think everyone is different on what they can tolerate in terms of visiting a parent with dementia. Also some people are closer by to their parent making it easier to visit regularly especially in a major metropolitan area with a lot of traffic. I decided to take a break of a month from visiting my mother. All the stress of the hospital trips for my mother and sadness I feel at the memory care facility was causing problems for me including performance at work and in general not taking care of myself. Some people can deal with it more and some cant. Everyone is different mentally and fortunately society is getting better at recognizing and accepting the importance of mental health of an individual.
The staff at the place where she is know and like her and I know she is getting good care where she is but of course I still feel guilty about not visiting for a while.
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I think it is important to visit. When I’m doing my one month taking care of my parents I try to go every day. I think it is important for him to know his family is still here for him, he wasn’t discarded and he is loved.

It took a few months for my father to adjust but he’s doing better now. I don’t like going, it is depressing but I suck it up.
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No, I don’t think it is ok to not visit. Would you want that if you were in the same situation? All these people saying it is ok blows my mind. It’s not like this is N indefinite thing. He’ll die. Not going because you don’t want to see it is one of the worst excuses I hear from people. What comes around, goes around.
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anonymous1732518 Aug 2023
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Yes, it is okay not to visit. However, I would not take your kids on any more visits until his incessant behavior diminishes.

When I'm around this type of behavior, it takes all of my wits and focus to deal with it in a compassionate manner. I don't really like the the fibs as I can never tell if my Mom will remember or not. In addition, I was never good at "small talk".

A friend had a schizophrenic brother who was 2 years older than he. He remembered his brother before the diagnosis and got along well with him before and after. One thing he told me was to just keep on asking questions and talking, therefore entering their reality and that you, are a visitor and need their guidance.

Therefore, I would tell your Dad that "yes, they are spies. They are watching what he eats to ensure he is well fed and watch what he is doing because they are figuring out how to join him." Explore those emotions with him. When he says that he is as fit as a horse, ask him "how does he keep so fit?" In other words, enter his reality with a lot of curiosity (and chuckle or laugh if you are at loss for words or the idea is so absurd.) There is no need to promise anything (say "I don't know if I can do that"), nor to directly answer his questions. When my mother asks if I hear voices, I say "no, I don't hear voices" if they are no external voices. When she asks again, I say "no, what are they saying?" When my nieces came to visit my Mom, she constantly asked when they would be back (yes, even on the first day). They answered "this year" or told her a specific month, the current month.

I cannot do this type of thinking if there are other people in the room. It takes all my energy to "play the game".

So if you are looking for permission to see your Dad less, yes it is okay to see him less. However, for me, I find it easier to go alone and make more visits but keep them short (if I don't have the patience that day, the visit has been less than 10 minutes).

About visiting, the reason why I like to do the frequent visits is to stay on top of what is going on. For instance, I see the nurses each day. If my Mom has a genuine gripe about something, I can usually follow up on it immediately. My Mom loves food, so I bring her a little "healthy" snack every day. Right now, it is watermelon. In fact, I won't listen to any of her gripes until after the snack; many times, she switches over to "happy" subjects after the "snack".

However, for you, I suspect, you will need to hear him out or get past this phase first. Whichever way you want to do it, it will work. The point is that you are making the effort to visit with him and for that, you should be proud of yourself.
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CPB1987: Many individuals with dementia who reside in facilities hang onto the 'I want to go home' story. However, many times their brain malfunction has them believing the 'home' is one that they lived in as a child or a much younger person. Any brick and mortar structure may no longer exist. Give your father some more time to adjust and yes, you can cut your visits down since you know that he is in good hands.
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It took about 6 months for my mother to settle into her new nursing home. We were fraught with guilt the entire time. I visited every day to help her adjust and I’d come away with a pressure headache each time. But I still went. The idea of leaving her alone there was too painful for me and it made the guilt worse. She was incredibly anxious and clutching at us every day. Her doctor put her in anti depressants and we started to notice an improvement within a few weeks. Things are much, much better now. We’ve also hired a private caregiver for two afternoons a week to give us time out. i know how difficult it is. Hang in there
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Just my two cents on answering the "I want to go home" requests. In my case, my mother has no concept of time so she thinks every day is Wednesday. I tell her she will be going home next Saturday or that she has a doctor's appointment first. She doesn't ask when, just, "oh, I need to stay for that?" I say yes and that's it for an hour or so. Some days it doesn't come back up, others it comes up again and again. She's happier thinking it will be soon. I don't know where your dad is on this scale but practicing "therapeutic lying" or simply giving truths that lead nowhere helps me a lot. She always has another Dr. appointment in the future, she is 81 year old so I just tell her she has one in a couple of weeks, more than likely she will.
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VPCA721 Aug 2023
That is a wonderful answer. It is so true. With the Alzheimer’s, my mom doesn’t know her days of the week or time of day. My mother lives with us and is always saying she wants to go back to California… we live, in CA. She always wants to go home. I will need to try this approach. Thank you
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It is OK not to visit daily. He probably will not remember, anyway.
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I think there is no answer to this question. I think you have to go with how you feel about how often you should visit your loved one. My husband has been in a memory care facility for well over three years and I've gone every single day. Most recently I do not go on Sunday, I feel I need a break and have so many things to do I feel I need the whole day. He did ask quite a while ago that he wanted to go home, and I explained to him that when he's better he can come home and that seemed to satisfy him, he never asked again. There was one time I didn't feel well, and I didn't go. The next day he was very upset and thought that he did something wrong and that's why I didn't visit him. I think he understood when I explained that I wasn't feeling well. It's a personal decision how often you should visit, I think you have to go with your heart and put yourself in their place. I always think if things were reversed, I know he would visit me every day. Some days I don't want to go, but I do because I don't want him to feel forgotten. I usually only stay 30-45 minutes. I'm sure it's hard for some people to understand going every day and it's a personal choice. I see so many of the residents in the facility that have no visitors and I feel so bad for them. I stop to say hello to the ones that can respond and smile at the others. It's not much except it makes me feel better. Sometimes someone saying hello or just smiling at you makes all the difference to that person. Maybe not, but it's how I feel about it. Sometimes I feel like I'm all alone and then someone smiles or says hello and it chases away the doom & gloom. It may seem like nothing but to someone that has no one it can change a gloomy day for them.
I'm so sorry about the decision you have to make, and I know it's hard not knowing what to do. Just follow your instinct no matter what the outcome is. It is a personal choice and don't let anyone make you feel your decision is not the right one for you.
Blessings and lots of hugs to you.
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My husband was prescribed medication to control his anxiety, paranoia, and hostility. However, if I was anxious, worried, and scared while visiting him, his demeanor reflected mine. Eventually, I became pretty good at acting like a carefree, happy-go-lucky lady despite having body rashes due to anxiety. It also helped that I planned my visits about an hour before scheduled activities so that he understood why I was leaving. He had an appointment to get to, not me. If he was going to the dining room or activity, I walked him there, told him that I loved him and left. In my view, my visits were as important, if not more important, to the staff than they were to my husband with dementia. Many times, I purposefully went while he was in an activity. During those visits, I would take the opportunity to briefly chat with the medication technician, the facility coordinator, and any staff member caring for my husband. I tried to visit my husband every other day up until three weeks before he passed. Then it was ever day. My son and I were fortunate enough to be at my husband's side when he passed thanks to the staff member who called me and to say that she believed my husband's passing was imminent.

I stopped taking our beloved dog for visits after my husband ceased to acknowledge her presence during her visit. I encouraged my son and daughter to forgo taking my ten-year-old granddaughter for visits because I vividly remember dreading my mother forcing me to visit my 100-year-old great grandfather. The last time my mom took me to visit him, I locked the car doors with me in the car after mom got out. I was 11 years old and completely terrified. No amount of explaining helped me overcome the sheer terror of those visits.

Be easy on yourself and do what is best for you. Hugs.
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Does he show an interest in the children?
Does he find meaning or pleasure in seeing you?
If "no" and "no", then visits are only feeding his focus on going home.
And that's not pleasant even for him, only bringing him frustration.

These visits are harmful to your kids' developing concepts and values.
And these visits are clearly harmful to you too, beyond just "feeling drained".
The process affects your whole outlook on life, tainting it a little more each day, affecting even how you speak to your children.
So in conclusion, it is VERY ok not to visit.
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Maybe a good idea to cut back on visits, and definitely DO NOT bring the children.
Sounds like you are a trigger and getting the blame.

Find out what he's like when you aren't there. Forget the promises to yourself, it was good intentions, but you aren't dealing with a normal person anymore.

Try calling once a week, and visit once a month. Don't feel guilty, it's not your fault. Your main responsibility is for your own kids and yourself. If you get sick or go off the deep end, what happens to your kids? Step back awhile and let the pros handle Dad.
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I am one of the few who believe there should be more visits for people with dementia who have been warehoused. Of course, for agitation, anxiety, and/or depression - some kind of medication should be available that can help. It may take some trial and error.

I am not a dementia professional, but based on my years of experience in a "care center," courses I've taken, and readings: People with dementias are still "there." Their mental capacities and processing become impaired, but they still have souls. The threads between memories break down. Some memories are lost - generally from present (very short term, then short term, then mid-term . . . ). I agree with someone who said try visiting without the kids. That can just be too much to process, and memories of them may no longer be easily accessible, if at all. If you cut back on visits, expect your father to eventually forget who YOU are. Familiarity is very, very important for their well-being.

I strongly urge you to contact the Alzheimer's Association hotline (800.272.3900) and talk with a counselor who can provide guidance and helpful information on engaging with your father.

Just my 2 cents. I know the situation is difficult.
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elisny Aug 2023
p.s. Music he can connect to will be important. ** Just watch this -- watch it to the end:

https://www.youtube.com/watch?v=CrZXz10FcVM&ab_channel=memorybridge
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My Mom is in late stages of dementia diagnosed approximately 8 years ago. I work full time and I am 65 myself. No other family or siblings around. I check on my Mom every day, at different times so I can ensure she is getting good care from all shifts, I will take leave if I have to every once in a while. I am a pro at changing the subject. While I am there, I always do something to make her feel better or relaxed. Like trim her nails or paint them or practice flash cards or write our abc's. I always have a bag full of distraction. Games, fresh colorful socks, pictures, a new toy or something sweet. It makes the visit fun and positive. It's difficult to leave because she cannot use a phone or electronic device anymore. So, explaining I will see you tomorrow is a chore. I just tell her she will go to sleep, wake up, have some breakfast and lunch and I will be back. I don't tell her to be good because it starts a whole round of more questions. I give her lots of praise and goodies and stay positive the whole time!! I listen, I check her out, watch for new symptoms and take names and notes. When I get in my car, I can breakdown from grief and exhaustion.
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Yup. The car is a great place to "let it out". Thanks.
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You must use your Therapeutic Lying techniques.

Tell him that he IS going home in a couple days. He just can't today because (insert excuse: he's getting some important treatment, or the house is being painted, or . . . . ).

Visit often because nurses in care homes do not give them all of the proper care. They can't because they have other patients to attend to. You have to constantly be on top of things because things easily "fall into the cracks."
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my2cents Aug 2023
Couldn't have said it better myself. Patients DO need someone to ensure they get proper care and no one can do that better than those who care about the patient.
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Good Morning,

Even in the best of places if they don't see family around, don't expect the same service.

I know it's hard but show up. Put yourself in his shoes. Suppose you were there all day and no one checked on you.

Every place is short-staffed, overwork and underpaid. I wouldn't be so trusting to put your loved one's safety. I think once a month is not enough. Perhaps shorter stays but never let them know when you are coming.

I'm just being upfront, but it's your father and they need to be protected. One month is too long.
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NinjaWarrior3 Aug 2023
I agree 100%.
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It is OK not to visit, at least not very often. It does not sound like your being there helps his agitation or decline at all--it may make it worse-- so don't feel guilty about not being there.

Wanting to "go home" is pretty unovetsal. Whether he likes it or not, "This is nowhome." Medication may help his agitation. Your visits do not.
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My children saw my mother once a week during my mother’s nursing home years and I went alone more often. We hated every visit. There’s no doubt though that the visits had the impact of the staff seeing that she was a person who was valued and loved and therefore they valued her more and cared more. Maybe not the best side of human behavior but true just the same, when people see you care, they care. That said, it’s also possible in a hard situation like yours to visit without your parent seeing you, just checking in from a distance where you see him but he doesn’t see you. See that he’s clean and has appropriate clothing, looks reasonably healthy, and ask the staff for an update, then leave. Has the same impact. Every resident in care needs an advocate and for the staff to see that they are a person of value to someone. I’m sorry this is such a hard time and wish you both peace
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rancks10 Aug 2023
This is an excellent response and I have found it very true with my parents, as well. I don't always take my children with me when I visit my parents (usually twice a week) because the sweet memories they had only 5 years ago are now tainted by this horrible disease. However, we do try to go in on Sundays as a family and share a meal with them. My children are learning important lessons by seeing me model what it means to care for our elderly, even when the elderly are challenging and not what they used to be years ago. But the heartbreaking thing is that the nurses have told me that very few people advocate for their parents, even in an emergency like a visit to the ER. It breaks my heart to see. My parents are very well cared for and I believe it is because I'm constantly talking to the nurses, trying to find solutions to all the issues that pop up, and visiting my parents weekly. Blessings to you in all you are doing.
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