I cannot see any reason to visit anyone, SICK OR WELL, who will yell at me and be hateful. That's a waste of time. Many will tell you to realize this "is the disease talking" and to go. I am not going to visit "a disease". I would be visiting a father, or no one at all. I WOULD send lovely notes and letters, ALWAYS with pictures of people, places and things he MIGHT remember, so that the staff could read them to him if he's having a good moment. That's it. What sense is there in visiting someone who is ALREADY GONE. I simply don't get it, myself.
I did visit 3x a week. I have not gone in two weeks. He will scream at me until someone else drops by. He smiles, laughs & talks with them. As soon as they leave he starts the yelling and accusations at me. He wants to move into a house he owns, but he will require sitters 24/7. From past experience he will fire anyone who does not allow him to do what he wants.
Donna, no-one is forcing you to visit F in AL If he ‘complains and yells’, he isn’t enjoying the visit. If you aren’t enjoying it, there really isn’t any point. Suggestions:
1) Talk to the AL staff. See what their take on it is. They may find that he is wound up by your visits, and they are suffering from it too. Or they may have other suggestions.
2) Wear earplugs. You want to “see him”, literally, to see how he is. You don’t have to “hear” him. Watch and smile, take him something he can look at and handle, and leave it at that.
3) Drop down the frequency of visits.
Don’t let yourself feel guilty if you decide that there isn’t any point in upsetting both him and you. Sympathy and best wishes, Margaret
When my mother got ugly towards me while visiting her in Memory Care Assisted Living, I'd tell her I was leaving and why. That I'd be back at another time when she was in a better mood. Don't sit there and tolerate the abuse, dementia or no dementia! Your father knows what he's doing or he wouldn't be putting on a show for OTHERS AND TREATING YOU LIKE GARBAGE!
Time to cut back on your visits. No one has the right to treat you like he does.
He knows exactly what he is doing and that is abuse, don't take it. If he starts, grab your stuff and leave, telling him that you will do this every time he starts being toxic with you.
Don't wait for him to fire you....quit...he needs to understand that you will not take his abuse one more minute.
If he fires an aide don't fill in the gaps, let him figure it out, obviously he is not the independent, he needs to understand that you will not be his crutch.
When I told him he had to have caretakers day and night he told me I could chain him to the furniture so he could not wander off! The last time he got so loud and hateful with me I did gather my purse and jacket and walked out! Thanks for sharing.
Due to a particularly venomous visit, I now go monthly. The manager contacted me to say that seeing me left my mother agitated and she became physical with the staff. As they agree that I must be able to see her (to check on her, bring her stuff, etc) they discussed it with the doctor and will slightly sedate her first.
Your situation may improve when he forgets who you are. Most of the time my mother thinks I’m just some nice lady who pops by, but she can’t place me. So she treats me with courtesy. Although I have been subjected to hilarious stories about Ana, that daughter of hers!
My step-mother in MC is very passive, she no longer knows me or my brother by name, although sometimes she does recognize our faces.
She now thinks my brother is my husband.
This is one terrible disease. It is depressing to go there and stare at her, but we do to keep on top of her care. I go once a month and my brother does the same, unless we need to take her to a doctors visit.
My uncle isn't in AL but I can definitely relate to not wanting to visit to only get complaints and yelled at. I've tried for a number of years, and every single time it's been a miserable experience, and I always left feeling that I made everything worse for him by showing up. I never once got a thank you for spending almost 24 hours on planes/in airports to get to him, on a way out I'd get something like "I'm going to die soon" followed by some version of "after I die, you'll miss me being a complete a** to you." Dude, we'll all die, we just don't know when. All the more reason to actually attempt to be kind. He's outlived many people in his life that he was convinced he won't outlive.
I felt a lot of guilt for not wanting to go visit anymore. A therapist advised me not to, and just to send thoughtfully written holiday cards. It sucks. I'm working on accepting that I have to grieve losing who he was while he's still alive, and it's very hard for me.
I decided not to go today. I stayed home and enjoyed my afternoon. I put a card in the mailbox to go out tomorrow. He has called my husband multiple times all afternoon and tonight, but never says anything. My husband has tried calling him, but he never answers. 🤷♀️
My mom was similar. Lashed out over and over. Tried to talk w/her to stop. Of no use. Limited/shortened visits and calls. Time between visits or calls got extended. Finally, went no direct contact. Dropped off a bag of snacks once a month w/a very brief note “you enjoy the treats” as the longer letters would just trigger a ranging voice mail message. There was no point in direct contact for her and certainty not for me, for my mental health
She passed a month ago bi have no regrets on the no direct contact decision. Was grieving the loss while she was still alive and now able to grieve her actual death
All of this is terrible for any in the midst of the dementia journey. Best of luck with your journey. Working with a talented therapist can be very helpful. Hope you do what you need to do to take care of yourself.
I appreciate your response very much. We grieve our loved ones because they are no longer who they once were, and at times it feels like guilt. I have to believe I do not need to sacrifice my life for my father, it is my job to make sure he is well cared for, not to make him happy. This forum has helped me to look at things differently and has taught me a lot.
My father had Lewy Body. My father also became very critical and angry. I came to learn from a wonderful neurologist that he was not properly medicated. He was put on an antidepressant that also helped him with his enormous anxiety. He was on escitalopram, but everyone’s chemistry is different. My father was suffering and the proper meds helped tremendously. Good luck!
Consider limiting your visits to less frequent and/ or shorter time spent there when you do go. It will be healthier for all. And remember, the loved one with dementia will not remember if you were there,when nor for how long; hence don't bother saying I'll see you again on a specific day or time. Simply say, I love you, see you soon. This is not in any way uncaring; on the contrary it is very caring for the loved one and yourself. Sometimes dementia patients are actually more content and may have less anxiety the more " routine" their day is with the facility caregivers ; visitors, although needed and caring, may actually provoke unintentionally increased pt anxiety which is presented in many ways including anger
Take care of yourself !!
This does not mean that you do not care nor love the person. Do not let anyone guilt trip you if you make this decision.
Thank you!! Since I have limited my visits, make quick exits when he gets extremely agitated, and “let it go” when I leave….I am so much better emotionally!
He needs someone coming by to ensure his care remains good and he’s being properly looked after. If it’s on you to do that, please continue at a distance emotionally safe for you. Drop by at varying times, talk with the staff for an update, see him from “around the corner” or whatever way works where you can briefly put an eye on him without him seeing you to start the yelling. You’re still his advocate, but importantly caring for you as well. I’m sorry this horrid disease has put you both through this, it’s beyond cruel. Protecting yourself is always wise
I do make impromptu visits dropping off supplies, quick visits, etc. There are only about 25-30 residents where he lives and he gets lots of attention. Thank you for the advice! I appreciate it!
I'm sorry Donna. I have heard that folks with Lewy Body can be very aggressive and even violent. Talk with his doctor and let him know what is going on and hopefully they can knock his aggression down a notch with meds.
I have a friend whose husband was kicked out of memory care because he was so violent and the nurses were afraid of him. Try and get it under control now so it doesn't come to that.
Until he is properly medicated, shorten your visits. Keep the conversation light while there and change the subject abruptly if you see it going south.
Thank you! No physical aggression yet. After a visit to his doctor where he cursed the doctor and was very rude, his doc called me and asked if he had physically attacked me. The doc did increase a medication he is taking. I have limited my visits and phone calls. I also try to change the subject when he starts his accusations. Sometimes it works. I am learning to make a quick exit when he is extremely agitated.
I also hate visiting my mother with dementia. She vigorously complains, makes me feel guilty for her being there, refuses treatment and medicines, and I end up feeling awful. I have to remind myself that this is the best place for her and that I am doing my best.
Exactly!! As I am driving to visit my dad my stomach gets in knots. I wonder which dad will I see today…my sweet, loving dad or the mean, hateful dad?!?! For several months now he tends to be very mean. He has not physically “attacked” me (yet), but he verbally lets me have it! I did take the advice of several by not visiting him as frequently. I remind myself he is safe, he is being cared for, and he has made new friends. My motto for 2024 had been “Let go and let God”!
I read a few other responses and the negative behavior describes can be mitigated by proper medication so the patient can feel and be the best of who they are while living with Lewy Body. Bear in mind that Lewy Body patients are very sensitive to medication. Beginning with the smallest dose is essential. Anxiety in Lewy Body patients is off the charts.
Yes yes and yes. My brother with Lewy's actually had paradoxical reactions to medications in which something given in hospital to calm him sent him straight through the ceiling. Also anxiety great for him though as he and I always laughed, we are total control freaks. If we feel/felt someone else in control we went quite frantic indeed. I so agree with you.
My daddy did not have Lewy Body or at least he was never diagnosed with it. He did have ALZ and he yelled at me, cursed at me, told me I was the worst daughter ever, to top that he would tell others as we were in a doctors waiting room that I was the worst daughter ever! Did I hate visiting him when he was in a home? No, I loved him too much. I hated when he would yell at me or tell others but I just chalked it up to the disease and if he got really bad I would just leave. He wasn't far from me about 12 miles each way from me. I always visited him and somedays were good somedays were bad. Yes its hard - my prayers for you!
My 90 yr old mom has Lewy Body {year 5} and she is in an assisted living. Her newest stage has her fluctuating between sweet and non-stop complaining with some meanness sprinkled in. She uses meanness with me but not with my sibling. The mean days are horrible. The constant lost items drives me crazy. Her show-timing is amazing. She can be miserable with me and then syrup sweet when staff walks in. I hate Lewy but love my mom. I frequently dread visits but love the wonderful days. When it all gets overwhelming I take 7 days off and tell her I am going on vacation. Sometimes I do go out of town. That restores me and I can do another 4-6 months nicely. I also recommend counseling…two sessions monthly helps take the edge off also. Tough road to walk.
I understand about the misplacing items. Of course my dad is persistent that someone has stolen from him! I also experience the extreme meanness from my dad which turns to sweetness when someone else walks into his room. He can turn it on and off like flipping a light switch! i am also taking breaks from my visits and phone calls.
I would just go to bring whatever supplies are needed, speak to the caregivers and administrators who are there, and lay eyes on him. Smile wave and go. Or don't even do that if he starts in. You are there to facilitate hus care and see to his needs. He is no longer an appropriately functioning person. They will understand. They will not blame you. Before I was on your end of things I was a long term care nurse. Trust me.
As much as I loved my mother, my visits were very agitating for her. For both our sanity, I visited a lot less and for shorter periods of time. I felt guilty at first but was explained to me by experts smarter than myself that she was no longer capable of recognizing me as her son(at any real level that mattered) and it was ok to protect myself from that reality.
DonnaFT: I refused to be treated like the proverbial 'chopped liver' by my mother when she was in a nursing home. I told her that I would return when her mood was better. You don't have to tolerate complaining and yelling.
Donna- I can really relate to dealing with a parent with Lewy Body! I have lived with my parents for 2 1/2 years and my Mom has LBD. For 2 yrs she was often very verbally abusive of me, but other times she was just fine or just really anxious. It became so hard to know 'which Mom' I was dealing with and when she was going to change again. It is really bad for me because I live here now and there is no one else to take care of them both if I leave. Lately Mom hasn't been so awful to me, but she is getting REALLY forgetful and shaky and unsteady. She has a condition called anasognosia, which means she can't even comprehend that she's ill. There's something wrong with everyone else (i.e. me), but she's fine. I agree with the others- if your Dad is in a good care facility, you shouldn't feel you have to sacrifice your mental health to see him and get raked over the coals. He is no longer himself and maybe you need to accept that and that it's OK to start distancing yourself from his currently abusive self. You take care of you, and don't about what others might think of you. They can't relate to your situation, so who cares what they think!
I worked at a dementia care unit with a man very similar to your father. It's the hardest thing to deal with. Im sole caregiver of my father right now as well. Your only peace will be to take frequent breaks from him if that's possible. Is he in a facility or living with you?
SRY I just saw the AL in ur message. We need to talk on Facebook or messenger. Lots to compare and maybe we can vent to each other for help. I was crying today about my dad's expectations of me. I can't keep going this way. 2 yrs in since mom died. I'm in a burn out and I'm losing all sight of myself. Currently in therapy
It is a heartfelt, extremely emotionally and psychologically difficult situation - or certainly can be. That energy draining useLESS word pops up in our psyche G-U-I-L-T. And, if you do not feel this, count your blessings.
Even for someone like me who is quite ... (?) mindful, aware of my boundaries, understanding of / educated in dementia behavior ... it can lurk around the perimeter of our being, squawking about.
This is how I would recommend you proceed and/or consider for your own sanity and well-being, and his:
* If you want to visit, keep the visits very short. * Understand that he is speaking through a declining brain / cells are continually dying and he is doing the best he can, which may be minimal. * He is confused and likely scared, if not terrified. When you look at the situation from his point of view, you can find compassion and feel some shift / relief inside you. You 'reset.' If you cannot do that, leave (for the day or take a break).
* When he yells (Oh ... I had a client for 3-4 years that yelled at me almost daily and it was difficult - and I had all these strategies in place...) --- visualize a protective bubble of light (give it a color) around you ... that bubble will not allow anyone or anything to enter your sacred space. "It" (the yelling) bounces off you and disintegrates into the air. Try this visualization BEFORE you are there. Practice this or some kind of self-protection healing visualization as often as needed. If you have difficulty doing this: - lessen your visits - stop visiting - find / secure volunteers (church, universities (geriatric or social work dept students) - Bring music or art, gardening, football (?) books / pictures to show / share with him (to see if this might interrupt his yelling).
Provide self-compassion all the time you can be aware to do so. This is certainly difficult, especially - perhaps - when it is a parent (although I sense a sibling or spouse would be (as) difficult, emotionally, too).
Read about Lewy Body. Study a bit so you know the 'why' he responds as he does. Read / google / review Teepa Snow's website about Lewy Body. In many cases - being educated in these areas can counter the emotional pull / natural tendency to feel bad.
Do what you can and then leave. Take care of yourself. Be good to yourself. Always forgive - your parent(s) and yourself. Every moment is a new opportunity to be present and re-act differently with the objective of compassion and healing light - to all.
Lewy Body dementia does cause distressing behavior. Please understand that the words and actions are part of the disease. Also notify your loved one's doctor about the words and actions your are experiencing. Nobody should live the latter days of their life with pain, fear or unreasonable rage. Medications can help to calm the behaviors and make visits easier for you and your loved one.
Does the AL have activities, so that you can attend them with your LO and then leave before the activity ends?
Do you try to visit in the mornings when he isn't sundowning?
Do you know how to apply strategies like distraction and redirection?
Is he on meds for this or anxiety/agitation?
You are not obligated to tolerate such behavior. I personally often wonder if there's any real benefit in visiting the LO in such conditions, anyway.
I don't blame you... it was really hard to be with my very elderly LO who had mod/adv dementia. Maybe consider just calling, if possible.
That's a waste of time.
Many will tell you to realize this "is the disease talking" and to go.
I am not going to visit "a disease".
I would be visiting a father, or no one at all.
I WOULD send lovely notes and letters, ALWAYS with pictures of people, places and things he MIGHT remember, so that the staff could read them to him if he's having a good moment.
That's it.
What sense is there in visiting someone who is ALREADY GONE. I simply don't get it, myself.
1) Talk to the AL staff. See what their take on it is. They may find that he is wound up by your visits, and they are suffering from it too. Or they may have other suggestions.
2) Wear earplugs. You want to “see him”, literally, to see how he is. You don’t have to “hear” him. Watch and smile, take him something he can look at and handle, and leave it at that.
3) Drop down the frequency of visits.
Don’t let yourself feel guilty if you decide that there isn’t any point in upsetting both him and you. Sympathy and best wishes, Margaret
Best of luck to you.
He knows exactly what he is doing and that is abuse, don't take it. If he starts, grab your stuff and leave, telling him that you will do this every time he starts being toxic with you.
Don't wait for him to fire you....quit...he needs to understand that you will not take his abuse one more minute.
If he fires an aide don't fill in the gaps, let him figure it out, obviously he is not the independent, he needs to understand that you will not be his crutch.
Sending support your way!
The last time he got so loud and hateful with me I did gather my purse and jacket and walked out!
Thanks for sharing.
Your situation may improve when he forgets who you are. Most of the time my mother thinks I’m just some nice lady who pops by, but she can’t place me. So she treats me with courtesy. Although I have been subjected to hilarious stories about Ana, that daughter of hers!
She now thinks my brother is my husband.
This is one terrible disease. It is depressing to go there and stare at her, but we do to keep on top of her care. I go once a month and my brother does the same, unless we need to take her to a doctors visit.
I felt a lot of guilt for not wanting to go visit anymore. A therapist advised me not to, and just to send thoughtfully written holiday cards. It sucks. I'm working on accepting that I have to grieve losing who he was while he's still alive, and it's very hard for me.
He has called my husband multiple times all afternoon and tonight, but never says anything. My husband has tried calling him, but he never answers. 🤷♀️
My mom was similar. Lashed out over and over. Tried to talk w/her to stop. Of no use. Limited/shortened visits and calls. Time between visits or calls got extended. Finally, went no direct contact. Dropped off a bag of snacks once a month w/a very brief note “you enjoy the treats” as the longer letters would just trigger a ranging voice mail message. There was no point in direct contact for her and certainty not for me, for my mental health
She passed a month ago bi have no regrets on the no direct contact decision. Was grieving the loss while she was still alive and now able to grieve her actual death
All of this is terrible for any in the midst of the dementia journey. Best of luck with your journey. Working with a talented therapist can be very helpful. Hope you do what you need to do to take care of yourself.
This is sadly a common occurrence.
Consider limiting your visits to less frequent and/ or shorter time spent there when you do go. It will be healthier for all. And remember, the loved one with dementia will not remember if you were there,when nor for how long; hence don't bother saying I'll see you again on a specific day or time. Simply say, I love you, see you soon. This is not in any way uncaring; on the contrary it is very caring for the loved one and yourself. Sometimes dementia patients are actually more content and may have less anxiety the more " routine" their day is with the facility caregivers ; visitors, although needed and caring, may actually provoke unintentionally increased pt anxiety which is presented in many ways including anger
Take care of yourself !!
This does not mean that you do not care nor love the person. Do not let anyone guilt trip you if you make this decision.
Thank you for the advice! I appreciate it!
I have a friend whose husband was kicked out of memory care because he was so violent and the nurses were afraid of him. Try and get it under control now so it doesn't come to that.
Until he is properly medicated, shorten your visits. Keep the conversation light while there and change the subject abruptly if you see it going south.
I have limited my visits and phone calls. I also try to change the subject when he starts his accusations. Sometimes it works. I am learning to make a quick exit when he is extremely agitated.
I did take the advice of several by not visiting him as frequently. I remind myself he is safe, he is being cared for, and he has made new friends. My motto for 2024 had been “Let go and let God”!
i am also taking breaks from my visits and phone calls.
I agree with the others- if your Dad is in a good care facility, you shouldn't feel you have to sacrifice your mental health to see him and get raked over the coals. He is no longer himself and maybe you need to accept that and that it's OK to start distancing yourself from his currently abusive self. You take care of you, and don't about what others might think of you. They can't relate to your situation, so who cares what they think!
G-U-I-L-T. And, if you do not feel this, count your blessings.
Even for someone like me who is quite ... (?) mindful, aware of my boundaries, understanding of / educated in dementia behavior ... it can lurk around the perimeter of our being, squawking about.
This is how I would recommend you proceed and/or consider for your own sanity and well-being, and his:
* If you want to visit, keep the visits very short.
* Understand that he is speaking through a declining brain / cells are continually dying and he is doing the best he can, which may be minimal.
* He is confused and likely scared, if not terrified. When you look at the situation from his point of view, you can find compassion and feel some shift / relief inside you. You 'reset.' If you cannot do that, leave (for the day or take a break).
* When he yells (Oh ... I had a client for 3-4 years that yelled at me almost daily and it was difficult - and I had all these strategies in place...) --- visualize a protective bubble of light (give it a color) around you ... that bubble will not allow anyone or anything to enter your sacred space. "It" (the yelling) bounces off you and disintegrates into the air. Try this visualization BEFORE you are there. Practice this or some kind of self-protection healing visualization as often as needed. If you have difficulty doing this:
- lessen your visits
- stop visiting
- find / secure volunteers (church, universities (geriatric or social work dept students)
- Bring music or art, gardening, football (?) books / pictures to show / share with him (to see if this might interrupt his yelling).
Provide self-compassion all the time you can be aware to do so.
This is certainly difficult, especially - perhaps - when it is a parent (although I sense a sibling or spouse would be (as) difficult, emotionally, too).
Read about Lewy Body. Study a bit so you know the 'why' he responds as he does. Read / google / review Teepa Snow's website about Lewy Body. In many cases - being educated in these areas can counter the emotional pull / natural tendency to feel bad.
Do what you can and then leave.
Take care of yourself. Be good to yourself.
Always forgive - your parent(s) and yourself. Every moment is a new opportunity to be present and re-act differently with the objective of compassion and healing light - to all.
Gena / Touch Matters