My sister and I are heartbroken that we cannot seem to provide any love, comfort or just distraction for my mom when we visit. I am a nurse and feel I was good at handling her dementia until now.
As soon as my sister and I arrive to see her she starts trying to get up and get away from us. We try to distract her, change the subject, back off etc to no avail. This always progresses to her hitting and slapping us. She pulls hair, kicks, bites and has even closed fist punched me in the face. She swears, accuses us of stealing money, killing babies etc. we have talked to the staff for suggestions, tried different times of day, and different places to sit. There is not one shred of her personality left. She has over the years been on many medications but is a huge fall risk and we walk the line of safety verses over sedation.(last month she had 11 falls) I am not a cry baby but leave there in tears and just miss her so much. She will not let me hug or touch her affectionately in any way.
Does anyone have any experiences like this? I just want to love and comfort her but she hates me and I end up doing the opposite. Our relationship before dementia was exceptionally warm and loving.
How is she with the staff?
She is in a nursing home ( locked dementia unit) and is not capable of using the phone. She has zero interest in anything that she’s used to like. She doesn’t care about foods, flowers, clothes, books, cards, photos etc. we have tried it all.
i think I will try walking away for 5 or 10 minutes and starting over instead of fleeing and crying all the way home. Maybe sit quietly without talking.
Hopefully this is just a phase and she will 'outgrow' it.
Check with staff regularly and see how she is doing. If your presence makes her rage, then stay away. It will only agitate her and make you sad.
She is safe and cared for. Sometimes, that's the best we can hope for. I'd stay away for the time being. Let your memories be the good ones, not the ones that are being created by mom being belligerent.
I am giving myself a break from my mom. I feel really bad because I deactivated my VM on my phone so she'd stop calling me with blame and VM messages left on my phone. It was interupting my days at work and personal time.
I did over the weekend and still have not taken any more of her calls even though I see that she's called me. It felt like she was bullying me and I just couldn't take it anymore but I feel like really bad for doing it like this.
I am a total stressball about the whole situation.
My husband keeps telling me, she's in good hands. Let the home handle her for a bit...but dang it, it is so hard. She is safe and cared for, but the phone is beginning to be an issue.
Thank you for your time.
I know this is not a popular view, but maybe it would be better if you don't visit her right now. Alternatively, the staff may need to put her on something like Ativan to calm the aggressive impulses. (That is what they needed to do with my late father.)
It isn’t helping her right now if you visit... obviously it upsets her. And it definitely upsets you & sister. You don’t want to accrue any more memories of her like this. It has to be awful and I hope things change soon.
My mother was moved to a higher level of care because she become a risk for wandering and forgetfulness.
I am the only family member that has helped her through this process and try to be as loving and caring as possible.
She has become very hostile towards me, won't talk to me when I visit, etc.
Over the weekend, she got upset with me on the phone and got really nasty with me. I asked if she could not be so nasty to me and she replied, "I can be as nasty to you as I want because you are to blame for all of this." And then to top it off, hung up on me and wouldn't take my calls. I was so upset but I've spent a lifetime of her manipulating me into getting what she wants with this behavior.
Dealing with her on this capacity, I had to start standing up for myself as I work through this and she doesn't like it. I've learned a lot about Borderline Personality Disorder and from all that I've read about it, it seems spot on for her.
She is in a safe place where the staff are very attentive to her and her needs. I've actually been told by them to basically step back and let them do their job (in a nice way).
After the last hang-up I was so furious and tired of her nasty calls and voicemails, I called my cell phone provider and asked that they disable my voicemail and have been avoiding her calls. I just can't take it, she's got me on the edge of a breakdown.
Yes, take the steps back. Can always call the staff and ask about her.
You need to realize this is the desease and I think, her Dementia is known to cause aggressiveness. In her mind she may see you as the people who put her "there". The caregivers always get the brunt of everything. They get something in their minds and won't let go. I would cut down on visits maybe even back off for a while. You are not helping yourself or her. Agitation is not good for them.
Read her a verse in the Bible, any verse. Just a few words.
Woman's day magazine has a weekly spot, positive story. Something about angels. It's been awhile since I picked one up and read it.
Just read something positive to her. If she starts screaming, tell her you love her and you will come back next week.
If she starts to try to get away from you, then that is your answer. Tell her you love her, and perhaps next week will be a better time to visit.
It's hard, very hard. My mom was nice, but she kept saying go home go home go home. That broke my heart.
So, just keep it simple and short. Read her a positive or fun short story.
She never spoke again.
If your presence causes so much upset it might be time to take a break and see if she can settle in to her new home.
This disease just stinks. Hugs!
I have been there.
Some days will be good, others hard. Make sure to do nice little things along the way for yourself. Do nice things for your sister, and others in your Mom’s circle. They are suffering too. These hard times can make you closer. Doing nice little things for others (when you can’t for your mom) will bring you relief.
Do you and your sister go together?
Is the reaction the same if you go one at a time?
It is possible that she may feel "ganged up on" if there are 2 of you at the same time.
And depending on her Dementia she may be getting the 2 of you confused and this would be frustrating for her if that is the case.
If you try going on different days and the reaction is the same then it is the disease not your Mom that is reacting. If that is the case would it be possible even with her being a fall risk that you choose a time when she is in bed and the staff can medicate her prior to your visit so you can see her for a while then let her have a nap or if it is evening just let her sleep. I understand if this is a risk that you and the staff do not want to take but I have to imagine that she is probably like this with staff as well and I would think they have to do something before showers or a bath it would be to dangerous to take a fighting person into the shower area.
(Just another thought if she is not combative with staff next time you visit wear scrubs so you look like staff and see if you get a different reaction)
My dad was also a fall risk but the neurologist explained that unmanaged behavior posed an even higher risk to his ability to be housed and cared for. LBD patients can be problematic and many facilities won't take them if they have a reputation for difficult, and particularly combative behavior.
You may need to rethink your position on her medications and treat these interactions with her as a symptom that you need to get addressed on her behalf. Perhaps your own visits will improve as a result. Mine did, although irritability was always present.
One thing you can't successfully do is explain missing brain matter back into existence in your interactions with her. Others are correct that there is a level of acceptance incumbent on you because things will never be like they once were.
After my dad died, I spent 6 weeks dealing with infections because I was so run down from my severe stress. Others are also correct that to protect your own well-being you may have to take a break and manage her care from a distance.
Being a care manager for someone with dementia is as much an exercise in courage as it is in compassion. Sometimes you just have choose the best option from among unhappy choices because the good choices are no longer in play. It takes real personal fortitude to set your own desires aside and realize that your decisions for your mom's highest good sometimes will leave your own wishes unmet.
Wishing you strength and health through this tough journey.
I would encourage you to seek out a compassionate Hospice organization, interview them, and start immediately talking with the social worker and/or grief counselor/bereavement specialist. While, clinically, she may or may not be eligible for the service at this time, 99% of hospices will welcome you with open arms. Support groups often have other people who, too, are no longer capable of giving or receiving physical affection from a beloved parent... you may have multiple ways to give the care that is your intrinsic need.
Use a journal to write down all of the kind, loving moments and words from your Mother that you recall... from your entire life. Make that your time together. Tell her in your journal what you would do to ease her suffering and yours, because in the flesh you cannot. Tell her why you feel guilty... and then forgive yourself- if she knew and had the physical capability of processing that information, she would forgive you, too. You're not a bad person for taking care of so many others and now not being to care for her in the way that you want to. This is not your fault... and not hers either.
There's nothing you can do or could have done to stop the amyloid plaques in her brain from clustering. There's nothing you can do stop this horrible digression in its tracks. You can though, allow her to get thru her day without an episode like the one you described... that too, is caring. Merciful caring for both of you.
I am (80), and have two longtime friends and one family member by marriage suffer from LB dementia. It is a particularly devastating disease because, at least in my (3) encounters with it, the extreme combativeness and downright meanness seems to be where that type of dementia ends up.
My wife has had Alzheimer’s for (9) years and while it is difficult, I have not had to deal with that extreme personality turn. We are blessed, but you must consider yourself blessed that you had your “real” mother for as long as you did. Miss and grieve her now because that is only human. But carry no grief or burdens forward. You both have been good and loving daughters. God bless! And, HE does!!
My mother, also, began exhibiting behavior like that toward me. I was her caregiver, and had to put her in AL, because I could not physically handle it. However, she treated the aides in her new home in the same manner.
One day, in anger, and desperation, while having a tantrum, my mother blurted out, "My back hurts!"
A couple months earlier, while my sitting on her bed, she had slipped off onto the floor, landing on her bottom. Since my dad couldn't get her up, paramedics were called. They brushed her off and said she was fine. In actuality, she had two compressed fractures in her lower lumbar. Of course, no one knew that, and continued with her in her usual routine, which was badly hurting her. She didn't have the verbal abilities to let us know the pain we were causing her! Perhaps your mother is in pain?
Whatever the reason, it could be that she is trying to express some discomfort, and is angry you aren't get it. I'll pray that you find her need.
I grieved for my mother in her years of infirmity.
This is many times that grief.
I relate to the movie '50 First Dates' only I get to court her 50 times a day.
She has bvFTD, not the same as FTD, not Alzheimers.
bvFTD is Behaviour Variant FrontoTemporal Dementia.
She became mean in 2006, at age 53. institutionalization was recommended.
I kept her home, kept her close.
In 2011, she became violent and forgot who I am, who she is.
Doctors administered Alzheimer's drugs which had adverse and permanent physical effect,
I am sitting here watching her. She has to be watched as she will suddenly get up and pace. She has no 'safety awareness and will bump into objects. I do not restrain, as she is enraged by restraint and the pacing prevents muscular atrophy and clotting
She used to attack if approached when there is any discomfort. constipation, headache, has to pee, or already did.
Life was hellish for several years.
Life has been good since we discovered cannabis in 2013, and I am so glad I kept her.
There is no recovery, no healing, no improvement possible with bvFTD,
Christy's doctor says that the Cannabis administered for her seizures probably calms the bvFTD chaos in her brain and allows her momentary connections with who she was.
The Christy I married is gone, but I love this person and enjoy my days with her.
Today my visit was heartbreaking. When I got there she was crying. My mom has become so nasty towards me, saying I hate her so much I locked her in that place. She's in a beautiful retirement home with staff that treat her so lovingly. The staff tell me she participates in all the activities and is happy most of the time.
From reading these posts I don't know why but it seems to be me that triggers her to be so upset. I am the primary caregiver and used to visit 3-4 times a week. I've been having seizures so only go once a week when I can get a drive to see her. I don't know if me not being able to visit as often has upset her routine or if she thinks I've abandoned her.