I know its not real but....

[PMM1485]

Hi there,
I went to see mum at the new care home today. She was really angry and I found the whole experience really difficult. She was covered in bruises which I know relate to her falling out of bed - the care home told me about this. But she comes out with the most horrific statements about being beaten and abused. In my heart of hearts I know they can't be true - she even said she was raped. She has said this about every care home so far. The first I believed her and had her moved. The second threw us out because they couldn't deal with her and now this is the last option.

All staff at the home seem really nice and they have a good CQC report, there is just a niggling voice saying 'what if some of it is true? You here such awful stories'. I KNOW ITS NOT and I am the one getting paranoid now and it is playing into my fear of being an awful daughter. I don't know how to counteract her accusations. She says the staff are evil - often to their faces. Is this part of settling in? Will it get better? Has anyone experienced the same?

Today was the first visiting session and a member of staff sat there with her. Is that what others have experienced? At the previous care home they left me and her to chat in the lovely garden for an hour. Here I am restricted to 20 minutes with a member of staff on hand. I presume it is in case she falls, or I attempt to hug her or something. It is just adding grist to her (and my) paranoia. I guess I must be patient and hope she settles.

 

[Jale]

At mum's nursing home we are allowed a 30 minute visit once a week, difficult because we used to go and see her every day but because of the restrictions this is more than enough to be honest. The visits are sort of supervised in so far as there is a member of staff around but they haven't actually stayed with us.

Before the lockdown (and probably still now, we just don't see it) Mum could be downright viscous both verbally and physically one minute and then a few minutes later the person would be her best friend. It is difficult to have to sit and listen to the hate that can sometimes be let loose by a loved one's lack of inhibitions.

I would be concerned about the falling out of bed, mum has bed rails up whenever she is in bed, having said that she is not capable of trying to get out of bed, not sure if this is the case in a care home, perhaps someone else can help on that.

What I am going to say now is all what happened prior to lockdown, Mum does play me up, she constantly says that she hasn't had anything to eat or drink, and also says that she doesn't join in the silly things (activities), but we have seen her without her knowing and she is a different person when we are not around, she does join in with singing and other activities, laughing and smiling, when we turned up it would be like someone flicked a switch and the evil side of her came out. I try to take things she says with a pinch of salt and if I am concerned about something that she has said then I will have a chat with the staff.

As to your question will it get better, I doubt it but you may get better at spotting the real truth as opposed to the truth according to your mum.
Best wishes

 

[canary]

Its really hard when they say things like that and it makes it harder because they really think it is true, but dementia messes with your memory and frequently gives you false memories (confabulations) to fill in the missing gaps. Its such a shame that these false memories are all to do with violence in your mum.

My mum was generally sweet tempered and her stories were generally benign, but even so, while she was living at home, before she moved to a care home, she was accusing me of abusing her. She once showed me a bruise on her arm about the size of a thumbprint and told me it was where I had pinched her really hard the day before and had really hurt her, but the day before I had been with her at the doctors when the nurse had taken some blood for blood tests and this was the resulting bruise!. I think the anxiety and fear that she experienced from living on her own drove her paranoia and once she settled she improved considerably.

Your mum has has several moves and is bound to be very confused and unsettled. It will take a while for her anxiety to lessen, probably a few months at the very least. It will also take a while for you to learn to trust the care home, rather than your mums stories. It is OK to acknowledge these feelings.

 

[lemonbalm]

I am familiar with that niggling voice @PMM1485 . I moved my mum from the previous care home, as they were not able to deal with her "challenging behaviour" and she has been in her current care home for over 2 years. The only care home in the area prepared to take mum, it was thankfully the one I would have chosen anyway. I used to visit every afternoon at the same time. One a good day, I would leave feeling happy and knowing she was in the right place but on a bad day I would think in horror "Oh my God, what have I done?" and have a bit of a cry in the car. Sometimes mum thinks she is in a prison camp or has been arrested, sometimes she thinks she is in a pub.

I know that mum can be very aggressive (and scratchy) and yes, I have seen bruises on her hands on occasion. I know from previous experience how out of control mum can be. She can hurt herself and I suppose a firm grip from a carer moving her into a quiet area to calm down or preventing her falling may cause a bruise now and then. She can also be heart-achingly sweet, cheerful and funny. I know for sure that the staff genuinely care for her. Several carers have told me that they all love her, and like her feisty nature!

I expect that your mum will settle down and the staff will know how to help with that. It sounds like the right place. I am very keen on regular med's reviews, which have helped enormously over the past couple of years!

 

[PMM1485]

Oh thank you all. Came on here tonight after a really taxing few days when mum's behaviour has been off the scale. I was so low because I felt we were running out of options. So its really helped to see these fabulous messages.
I so want mum to have some piece, if not happiness. I feel myself getting resentful. Why is she doing this to us? I know it's not her, it this God awful disease. It helps so much to hear the experiences of others and know I am no alone. It gives me hope that mum might settle in at some stage.
Home are getting a psych assessment, so hopefully that will help. Her stories are so dark and alarming. She must be perpetually terrified. Living in a nightmare.

 

[lemonbalm]

It is traumatic to see our loved ones in such distress @PMM1485 . You can perhaps take some comfort in the fact that your mum is very unlikely to remember this awful time. I hope that the assessment helps to calm your mum down. The community psychiatric nurse has visited my mum a few times in the past and has achieved very good results. Mum has actually been calm and cheerful for some of the time! Will be thinking of you and keeping fingers crossed.

 

[PMM1485]

I really hope so. Just phoned her and she was quite upset. She kept saying that she wanted it all to go back to normal, with all the family together. How she didn't know what had happened and why she was the way she was. It is almost as if there is a flicker of her old self caught behind the mask, trying to get out.

My brother thinks we may be doing more harm than good by ringing her each day. Not sure if he is right. My instinct is that at least if she hears us each day she will not feel so alone.

 

[canary]

Yes, @PMM1485 , these flashes of partial insight are painful to witness.
I think that deep down they know that Something Is Not Right, but they cannot put their finger on exactly what that Something is and I found with mum and OH that if I tried to explain what that Something was they didnt believe me. I found it much better to say, when mum told me she had lost her memory and didnt know what was happening, that I knew and was sorting it out.

It is almost as if there is a flicker of her old self caught behind the mask, trying to get out.

Yes, I believe you are right, but its so deeply hidden at times, its hard to see.

 

[lemonbalm]

I think that flicker is one of the hardest things about it all @PM1486. I would give anything for mum to be cheerful and content all the time, even if she stopped knowing who I was. Possibly not a popular view but it's how I feel.

 

[imthedaughter]

I think that flicker is one of the hardest things about it all @PM1486. I would give anything for mum to be cheerful and content all the time, even if she stopped knowing who I was. Possibly not a popular view but it's how I feel.

I absolutely agree. My worst fear is that dad knows what is wrong and is horrified by himself. Look, he's not perfect and never has been but him being largely unaware but mostly happy is the greatest comfort to me.