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.
Cover909
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.
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!
Good for her
Cover909
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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."
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.
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.