Is it ok not to visit?

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Is it ok not to visit?

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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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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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I did that with my father, I came before dinner.

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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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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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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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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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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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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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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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I agree 100%.

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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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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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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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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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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.

Is it ok not to visit?

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