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.
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.
Cover909
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
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.
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.
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))).
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)
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
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.
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.
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.
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.
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?