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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 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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Dad has some sense left mentioning coming home

Cover909
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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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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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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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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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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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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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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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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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I agree with all other posters! Cut back on visits and inquire about meds.
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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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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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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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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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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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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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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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