Upsetting conversations with others

[Chunky12]

Our mum has middle stage dementia. She takes Memantine. We have helpers go in 3 times a week, meals delivered every day and my brother and I visit, call and help out whenever we get a call because something has gone missing.
However we have had people contact us to say mum has been saying things to them that are quite worrying, about us (her son and daughter).
This is mostly about money in that we're stealing from her, we've taken over ownership of her house, we're waiting for her to die and we're trying to kill her dogs by slitting their throats.
This is all untrue but it is so so upsetting. Mum can "present" very well and sound like she has full capacity. To those she speaks to on the phone or sees briefly when out and about they wouldn't see any significant changes apart from she doesn't look after her appearance like she used to.
Mum is quite sharp and nasty with us but lovely with everyone else.
We can't do anything right.
We just want her to be safe, in her own home with her dogs, in a familiar area where she can do what she wants to do. But the stories she's telling people are upsetting us and we feel like we're having to justify ourselves and actions to everyone. It's starting to affect us both, emotional and physical health . 😔 just needed to post as we're at our wits end and don't know where to turn.

 

[Grannie G]

we feel like we're having to justify ourselves and actions to everyone.

There is no need for you to justify yourselves to anyone.

I would say calmly and without using a defensive voice,

`This behaviour is typical of many people with dementia who are confused and frightened and I do not appreciate your misguided concern.`

End of story.

 

[MaNaAk]

There is no need for you to justify yourselves to anyone.

I would say calmly and without using a defensive voice,

`This behaviour is typical of many people with dementia who are confused and frightened and I do not appreciate your misguided concern.`

End of story.

Well said @GrannieG. Dad was very good at host mode and he did tell my youngest brother stories about me but at least my brother understood. These people should be offering their assistance.

MaNaAk

 

[Chunky12]

Thank you to both of you for your reply,
Host mode is a perfect description of the change in character from confused and muddled to seeming like they have full capacity.
Thank you

 

[maisiecat]

My husband is in a Nursing home and can still "showtime" as I call it so much so that the Manager said she wondered if he still needed to be on the dementia floor.
I didn't reply that perhaps she needed to be on the dementia floor as I thought that was rude but I think she learned a lesson when he was asked to look after a staff member's bag and they nearly had to anaesthise him to get it back.

 

[Chunky12]

My husband is in a Nursing home and can still "showtime" as I call it so much so that the Manager said she wondered if he still needed to be on the dementia floor.
I didn't reply that perhaps she needed to be on the dementia floor as I thought that was rude but I think she learned a lesson when he was asked to look after a staff member's bag and they nearly had to anaesthise him to get it back.

That did make me chuckle - that would be the same with Mum!! And like you say people do question whether they have dementia when they're on their "best behaviour". It makes us look as though we're making it up but we see them or talk to them nearly every day so we do know what their true personalities / character is like and how dementia has changed them ... 😔

 

[Rosettastone57]

My mother in law was like this. In fact she was the queen of hostess mode. My husband and I never justified our decisions to anyone. She had carers three times a day ,most of whom were regulars who knew what was really going on. It was only when a new person came along that she was able to impress them with telling them how awful we were to her. Sadly it's all part of the dementia journey

 

[Toopie28]

There is no need for you to justify yourselves to anyone.

I would say calmly and without using a defensive voice,

`This behaviour is typical of many people with dementia who are confused and frightened and I do not appreciate your misguided concern.`

End of story.

This.

Unfortunately this happens. Ma would say I was stealing all the time. She would say I was trying to drive her mad by hiding her purse/keys/etc. People who have dealt with a PWD will know exactly what this is - so no need to justify anything.

I used to try and explain to people. But they don't know - they've never dealt with it. So I don't bother now.

Ma is so good at hostess mode that the care home thinks she can take care of herself. That's another battle in itself🙈

 

[maisiecat]

My husband always wanted a divorce and then would refuse to leave the house with me in case I was taking him to the solicitors.
Don't attempt to justify anything to anyone. Its a hard journey we are all on and they are lucky they aren't on it. People who have had contact with PWD know and don't judge.

 

[Spottydog]

Everything you describe about your mums behaviour is familiar to those who understand a bit about this cruel disease. Those closest bear the burden and she is so lucky to have you both caring for her. Unfortunately this disease stops her from appreciating you are helping her. I don't think you have to justify yourselves to anyone other than someone in a position of authority. Maybe a bit brutal but I would advise these people contacting you to contact Social Services or the police if they feel they have cause for concern.

 

[sdmhred]

What a good idea @Spottydog 🤣🤣🤣

Ive learned it’s only ok to talk to people who have hands on direct dementia care experience ..

I didn’t intend to but talked to a friend yesterday who is a psychotherapist about the ’weight’ of holding health POA when it comes to pre-planning end of life. Bless her she was trying and did acknowledge it wasn’t the same …but started to talk about weighing up the decision tp have her cat put down ….I wasn’t cross as she meant well …but hey ho…I just wanted to be ‘heard’ not lectured…

 

[SeaSwallow]

What a good idea @Spottydog 🤣🤣🤣

Ive learned it’s only ok to talk to people who have hands on direct dementia care experience ..

I didn’t intend to but talked to a friend yesterday who is a psychotherapist about the ’weight’ of holding health POA when it comes to pre-planning end of life. Bless her she was trying and did acknowledge it wasn’t the same …but started to talk about weighing up the decision tp have her cat put down ….I wasn’t cross as she meant well …but hey ho…I just wanted to be ‘heard’ not lectured…

I think I might just have lost it during that conversation @sdmhred. You were very understanding.

 

[canary]

Maybe a bit brutal but I would advise these people contacting you to contact Social Services or the police if they feel they have cause for concern.

Umm, Im not sure that is very good advice. If SS or the police take this contact seriously it can cause a lot of problems for the carer. I have read threads on this forum from distraught carers where exactly this has happened

 

[Spottydog]

Umm, Im not sure that is very good advice. If SS or the police take this contact seriously it can cause a lot of problems for the carer. I have read threads on this forum from distraught carers where exactly this has happened

Yes, good point. I wasn't thinking straight.

 

[Canna]

Umm, Im not sure that is very good advice. If SS or the police take this contact seriously it can cause a lot of problems for the carer. I have read threads on this forum from distraught carers where exactly this has happened

If you are ever contacting the GP/Social Services with a list of concerns, I'd be sure and add this sort of thing in. Flag it up, with examples.
We were lucky - Mum was convinced that the surgery receptionist was hiding in her cupboards, drinking her whisky, and trying to cut her with knives. So after I'd been up to the surgery to explain that we really didn't have a problem with the receptionist, I felt they were going to take any new wild stories with a pinch of salt.

 

[maisiecat]

What a good idea @Spottydog 🤣🤣🤣

Ive learned it’s only ok to talk to people who have hands on direct dementia care experience ..

I didn’t intend to but talked to a friend yesterday who is a psychotherapist about the ’weight’ of holding health POA when it comes to pre-planning end of life. Bless her she was trying and did acknowledge it wasn’t the same …but started to talk about weighing up the decision tp have her cat put down ….I wasn’t cross as she meant well …but hey ho…I just wanted to be ‘heard’ not lectured…

I don't know how you didn't explode. Well done

 

[canary]

I just wanted to clarify what I meant about asking people to report things to SS

If friends/neighbours are concerned about things that the person with dementia is doing, like wandering outside, making wild accusations or obviously not eating/washing/changing clothes, then yes I would encourage them to contact SS about their concerns.

The problem comes when the person with dementia makes accusations about their relative/carer and friends/neighbours believe them, or the friends/neighbours dont think that the carer is looking after them properly. In this case, if the friends/neighbours report their concerns to SS then it will be the carer who is investigated. One would hope that SS would realise that these are dementia fuelled accusations, but they do have a duty to investigate and they arent always that clued up.....

 

[SeaSwallow]

I just wanted to clarify what I meant about asking people to report things to SS

If friends/neighbours are concerned about things that the person with dementia is doing, like wandering outside, making wild accusations or obviously not eating/washing/changing clothes, then yes I would encourage them to contact SS about their concerns.

The problem comes when the person with dementia makes accusations about their relative/carer and friends/neighbours believe them, or the friends/neighbours dont think that the carer is looking after them properly. In this case, if the friends/neighbours report their concerns to SS then it will be the carer who is investigated. One would hope that SS would realise that these are dementia fuelled accusations, but they do have a duty to investigate and they arent always that clued up.....

I knew exactly what you meant @canary but that is a really good clarification.

 

[Toopie28]

I wonder if you should get ahead of them and report it? Basically make them aware of your mum's situation.
I had to do that with the police about my (ex) sister-in-law as Ma thought at one point she was stealing (this was before I managed to convince her it was me - I wasn't stealing she was misplacing).

It helped enormously when my brother's partner called the police to do a welfare check on Ma. (yeh, that's a story for another time)

Anyway, I had made sure they had some numbers to call before coming to my home as Ma was by herself and would have been very afraid. And they did, thankfully as they had noted that there was a PWD living at that home and to be accompanied when/if they turned up.

I called one of my neighbours - they went over, I popped on the Alexa, they walked around the house. Were satisfied that she was well taken care of and left.

 

[Chunky12]

Thank you all so much for taking the time to reply.
This has/is causing a huge lot of worry for me and my brother ... however, knowing this is what normality is when caring for someone with dementia does make it some what easier.
We just have to be patient and do what we can to continue to support Mum living independently. Thank you