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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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Look on the facility website to see when they have in-house events or clubs or special occasions. Visit during those times. Call ahead so that the staff can have him ready and at the event. Then leave before the event is over so that the staff takes him back to his room. Or, plan to bring him a special meal and eat it in the community dining room, then leave while in the dining room, have staff return him to his room. Keep redirecting the conversation to neutral topics. Show him funny animal videos on YouTube or pictures of your family, or videos of school performances, etc.

ALso consider contacting his doctor to prescribe meds for depression or agitation/anxiety. They work when the right one/dosage/combo is found. I wish you all the best.
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anonymous1732518 Jul 2023
Sorry but 😆.

He goes to an activity, daughter arrives hi join him then leaves before the activity is over, without saying goodbye?

In the interim try a different medication combo until the right one works, which could have him go through a range of emotions until to that happens?
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See if your father’s residence has a geriatric behavioral psychiatrist on staff, or can recommend one, and have him assessed.

An appropriate dose of mood stabilizer combined with a focused behavioral plan can work wonders.

Also ask his caregivers how he behaves in their care. If he’s better than when you visit, you can feel totally comfortable doing 5 minutes, giving him a hug and kiss, cheerfully saying “Gotta go now, Dad. LOVE YOU!”, and WALKING OUT.

You will have met your obligation, he will have had a visit, and you will have spared yourself the suffering.

My adorable, petite, immaculately dressed LO was SUCH an escape risk that her photo was posted in the entryway of her LOVELY MC residence like a WANTED poster.

This May never get any easier - it didn’t for me- but as carefully chosen medications and staff support helped her settle in, she grew to love her helpers and grudgingly enjoy her (my hotel!) surroundings, and our visits became much more pleasant.

Although it seems like a long time to you, three months may not be nearly as much time it will take for your dad to adjust to this life. My LO needed about 6 months.

Consider yourself TOTALLY VALIDATED! The more you love (and miss) them, the harder the process can be.

Fact is, you’re doing fine.
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Take 8 weeks off so he can adjust and you can get some distance and perspective. Plus, this can’t be good for the kids to witness.
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Don’t beat yourself up that, if you don’t visit more often, you will contribute to his mental decline. It will continue, with or without you.

I found the stage you describe to be the most difficult. Delusional, paranoid and mobile.

Your kids may be scared - too young to process what is happening to him.

I haven’t visited my mother in 2 months beyond popping in and out. (trying to work myself to “visit” next week) If she recognizes me, she rages. (staff has meds for this) When others visit she’s very happy. And she’s good with the staff, except for a day or two after she sees me. Ask his staff how he acts in your absence.
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Definitely look into mild anti-anxiety medication. With the proper dosage, he will not be sedated. Just taking the edge off. It’s no fun for him either to feel like he’s being spied upon!
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Speaking as one who had two parents with dementia, one after the other, and a LO with it now: They change. What you think is important is no longer important to them. Their world is not your world.

Their brains aren't functioning as they did, but yours still functions the way it always did. You think dad wants to see your kids; maybe it will cheer him up. He's probably not interested in them now. They aren't his world. He cannot remember much about them, probably. It's sad but unchangeable.

From your kids' point of view, they might rather not be subjected to this real-life horror show and perhaps don't want to hurt your feelings by saying they don't want to see him. Also, dementia patients need regularity, routine, and schedules. It's discombobulating for them when they must try to figure out who all the visitors are and why they're there (in addition to struggling to keep track of everything else minute by minute with a memory that can't do that). This creates agitation. No wonder they get angry.

Mental decline will happen at its own speed as his brain function continues to deteriorate. Trying to remind him of familiar faces or getting him to play bingo has no bearing on whether he loses brain cells. Amyloid plaque controls that. Whether you're there makes no difference in halting the disease. It can't.

When you made that promise to yourself, you didn't know as much as you know now. You thought it would be a good thing for him to feel like part of a family. I hope you're seeing that it wasn't a good promise to begin with. Instead, promise yourself that you will govern your actions by who he is now rather than your need to cling to what no longer is.

It's dismal, isn't it? I'm so very sorry you're facing this, and I hope you'll learn to go easier on yourself.
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bianca12 Aug 2023
I’m sure your VERY helpful response was appreciated. We all are looking at these situations through our own guilt clouded eyes….
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It would suggest that you stop visiting him. At least for a while until he starts being medicated for his agitation and anxiety.

Whatever you decide to do, don't bring your children when you go. If all your father does is complain and is paranoid about everyone being a spy, there's nothing there for yout kids to visit. Especially a toddler.

Your father may only be the demanding to go home, the threatening to leave, and the agitation when you are there. Many times an elder can be doing quite well in managed care. The second their adult child shows up the performance goes on. The incessant complaining, crying, thrreatening, demanding to go home, etc... Yet they are okay the rest of the time even well.

Don't visit for a while. What you can do is have someone he doesn't know just go and observe him and how he's adapting. You might be surprised.
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anonymous1732518 Jul 2023
He's in a home, so the solution for him to get "settled" in is to be "doped" up?
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I agree with all other posters! Cut back on visits and inquire about meds.
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Too many visits, the patient never acclimates themselves to the home.

They all want to go home wherever that may be, could be a childhood home.

I am not nuts about young children being exposed to this setting, it can be toxic and they can carry this experience into adulthood.

There is no reason for this self-imposed guilt, humans break promises to themselves all the time. You are keeping yourself stuck for no reason.
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BurntCaregiver Jul 2023
Well said, MeDolly. It's true that too many visits early on will prevent a person getting acclimated to their AL or NH. This is especially true if they are in memory care.

You are also spot on about not exposing children to the nursing home environment.
To this very day I remember having to go to the nursing home to visit Zia (aunt) Lucrezia. She was an ancient Italian woman who wore a long black dress, smelled awful and had filthy, yellow nails that looked like claws. She was deaf, had gray facial hair, and spoke no English. She also screamed constantly and liked to pinch children.

The famous words of my father and grandmother:

"Give Zia a kiss".

I was a little kindergarten-age kid then. I'm 50 now and the memory of Zia Lucrezia still terrifies me.
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CPB, find out from the DON or Social Worker if you dad is like this ALL the time. If he is, it's time for meds to address paranoia and delusions.

If you are the trigger and he's fine otherwise, consider that you are a trigger. Staying away would be the kindest thing to do.
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BurntCaregiver Jul 2023
Exactly right, Barb. She may be a trigger and it's best to stay away.

I'm certainly a trigger for my mother. The second I come in the performance starts.

~BC 7/27/23
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OP, your dad is aware that: you’re the only way for him to get out of the facility; if he can convince you, then he can get out.
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ventingisback Jul 2023
He also knows, if he behaves really bad, they’ll kick him out. He would like to get out.

I’m not saying he should leave or stay in the facility. I’m saying that he knows what to do, to try to get out.

(Ventingisback)
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It's a big life adjustment. For him & you too.

I'd speak up to the Manager, see if staff can coax him along to group activities, dinner, hopefully start h feeling connected to his new daily routine.

Speak up to his Doc, see if his aggitation is in the normal range.

Consider winding back the visits a little?

If the visits seem good for the children AND Dad, take the chidlren. Eg if the children are OK, not upset, getting something positive out of the visit (with Grandfather, or even a smile or wave at other residents). If Dad is happy to see them too.

However, maybe you'll have to go on your own sometimes, until he adjusts more.

I get keeping promises to yourself. But consider how promises can be *adjusted* without being broken if you need to.

I wish you strength, luck & many (((hugs))).
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Stop taking the children if he acts like that. It isn't good for them to see that behavior, and their memories of Grandpa shouldn't be of him at his worst.

Agree with others regarding medications.

Personally, I would continue to visit, because abandoning him isn't a good thing for either of you. If you just can't take it, then I guess you can't take it, but if you realize it's his dementia talking, maybe you can detach from it a bit.
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How often does Mom visit? I think a month is too long. Maybe 1x a week. If he gets agitated, then you leave. Tell him he is were he is for now because the doctor felt he needed to be there.
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Grandma1954 July 28, 2023 9:30 am
Is he on any medication to help with the anxiety and the paranoia?
I disagree with a couple of comments that he "knows" that if he behaves badly he will get kicked out.
I think / hope that with proper medication the can be more comfortable and not have the anxiety that he is having.
How often does mom visit?
Does he try to get mom to take him home?
Is he involved with activities and otherwise seem settled when you are not there?
Ask the staff if he has the same agitation when you are not there. If he is more settled when he does not have visitors then visiting less often until he is settled (It may take a few more months as well as medication for that to happen)
And when you do visit time the visit around lunch and either leave as he is going to lunch or have lunch with him. (another activity that may take his mind off leaving)
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InFamilyService Jul 2023
Your reply is spot on. I also think he could benefit from mild medication for the confusion & paranoia.

Yes, limit the visits if it helps but he needs to be checked on to ensure his care is what was promised.

Maybe on the next visit bring his favorite lunch or treats to distract him from the focus of going home. He probably misses his wife. I hope she sees him often.
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I agree with everyone here. Try meds, cut back on visits for at least a while to see if that helps adjustment, don’t bring the kids ( easier said than done some days I’m sure! ) .

Confession; I hate every. Single. Visit. With my mother. But there is no one else family or friend to oversee her care. Timing visits before lunch helps, in her case now I feed her lunch because it’s something to do. I doubt you’ll feed your Dad lunch but going in before meals seems to work well. Keeps visits to a definitive start-stop timeline.

Oh and I utilize car crying, car yelling, and for better or worse usually visit a bakery after I see my mother. You gotta do what you can to get through these times.

Huge hug to you!

Madisoncuckoo
7/30/23
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Lvnsm72 Aug 2023
I did that with my father, I came before dinner.
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Dad has some sense left mentioning coming home

Cover909
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My visits with my mother with dementia are bad. She is unhappy but cannot remember where she is, where she was before, what she did today, etc. But she can really inflict emotional pain with statements like "what did I do that you put me here?" and "you did your duty visiting me, you can go now" and more. I cut back on visits, got into therapy, practise CBT, and take meds to deal with this and some other personal issues. It is OK to cut back on visits because they are not helping your father or your family. Your father, like my mother, is not the person you knew before, the dementia is taking over. Go when you feel you can deal with the pain. Best wishes.
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Sadly, this is the experience that is most often felt by both of and families when especially dementia pts have to be placed in facility. So, don't feel guilty.
Your thoughts on reducing number of visits is a good one to consider. If you are going every week now, perhaps go every other week or go once a month and give yourself a break. Do not feel guilty about this. Sometimes it is actually helpful for the pt to build more trust with staff and placement. When you do go to see him, keep the visits short, maybe 1/2 hour most. If he starts the " going home" battle, tell him you love him and will see him again soon; then leave. Remember he would not be in a dementia care facility if he was not assessed appropriate for such care which means by definition of dementia that his memory, especially short term, is greatly limited and therefore he does not remember conversation or what he is told; do hence his repetitive asking of same questions etc etc.
Take care of yourself and your children and give yourself permission to visit as infrequently or frequently as you feel is a good balance for YOU ! It is grief provoking watching loved one decline and change. Consider getting a bit of grief support and or counseling to help weather this time and going forward. God bless you.
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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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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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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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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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Yup. The car is a great place to "let it out". Thanks.
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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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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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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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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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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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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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