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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
I'm certainly a trigger for my mother. The second I come in the performance starts.
~BC 7/27/23
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)
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))).
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.
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)
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.
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
Cover909
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.
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.
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.
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."
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.
https://www.youtube.com/watch?v=CrZXz10FcVM&ab_channel=memorybridge
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.
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.
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.
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.