Any advice

[Mollycolly]

Hello everybody

I'm new here but have been lurking for several weeks and have learnt so much already from you all. Your support to each other is awe inspiring.

Mum has not yet been officially diagnosed with dementia but we (my brother and I) know that it is happening. We recently saw her GP ourselves to talk about this and she has an appointment herself next week.

Six months ago she had a memory test and was told at that time that she 'just had old lady forgetfulness'. However, my Dad died a few weeks later. He was her carer (poor mobility) and did everything in the home. They had been married 67 years so, as you can imagine, it has knocked her for six.

She has not been too bad, lives alone, brother or I go every day and has always 'seen' our Dad. We call him The Ghost but she has previously not lost sight of the fact that he is dead.

However, the last week or so she has been extremely confused and is now 'hearing' him come in and spends ages looking for him, making him some supper which she then eats for breakfast the following day and so on. The latest is that there is The Ghost and also The Real One.

Yes, I know that to her this is all real but it is now causing her distress. She half suspects that she is 'going mad' or that my Dad is living somewhere else. It takes us a long time when she phones one of us in the evening to reassure her enough for her to go to bed.

Any advice on what to say to her to help her?

By the way, the Compassionate Caring article has been a great deal of help to us and we really, really try not to use logic or reason or argue. So hard, though, isn't it?

Thanks for listening.

Molly

 

[Norrms]

Hello

Hello my friend, firstly i am horrified that someone would call the possiblity of Dementia "Old Ladys forgetfulness!! Please take your mum to the nearest memory clinic and not the Drs and and insist on a fiull examination by the relevant pepole there, please dont hesitate to ask any more questions if neccersary, you will get all the help you need on here my friend xxxxxxxxxxxxxxx

 

[Christin]

Hello Mollycolly, welcome to Talking Point.

I am sorry to read about your mum, it sounds very distressing for you all.

I do agree with Norrms, I think your mum needs another assessment with the memory clinic. Do you have any contact numbers? If not, you can go via the GP and ask for another urgent referral. You do sometimes need to make it very clear what is happening, and it helped us to write in advance of appointments.

Very best wishes to you, and I hope you get some help for your mum very soon. x

 

[creativesarah]

Dont know what to say but know that I am thinking of you in this sad situation

 

[rjm]

Hi, and welcome Mollycolly,

Sorry to hear about your mum and condolences on the loss of your dad, this has not been much of a year for you.

You seem to be doing the right things. Support and re-assurance is pretty much all one can do. Depending on your mum's level of reality/delusion sometimes little lies can help. If she thinks he is coming and going into the house you could maybe say "oh, he's helping his brother and had to pop home for a minute to pick up some tools" or maybe he could be living at your place for a couple of days to help you out somehow. Basically, anything that she will accept and that will calm her is a permissible lie in my mind.

And I do agree with others that another assessment with someone not so "old school" in their thinking as her GP would be a good idea.

Best of luck,

 

[FifiMo]

Hiya Mollycolly and welcome to talking point,

We had similar situation with our mother who swore blind that my father had been resurrected and was living upstairs with his new wife (her best friend!). We also had the situation where she was buying loads of food in order to feed these "visitors" which by then included her mother and father also.

You are right in saying that this is their reality so there is little point in trying to convince them that they are wrong as they truly believe they are experiencing these things. One thing that worked with us for a while was when she phoned and told us about him being there we would say "Put him on the phone, I'll talk to him and ask him what he is up to". Of course she couldn't then do that and used to say that he must have gone out. We used to say "Fine, go lock your door and get yourself ready for bed. If he comes back then he will phone me and he can stay here tonight." We would wait on the phone whilst she went and checked everything was locked up and she would go off to bed quite calmly.

What is bad is the distress that all of this can cause and it is frustrating because there is little you can do to put things right, given the circumstances. There are however medications that can be given to help stop the hallucinations and if it was me then as well as getting her checked out at the memory clinic, I would insist that her GP gets the hallucinations dealt with as soon as possible.

As everyone else has said, the best way to deal with things is to say whatever is necessary to calm the situation down. If this means lying then so be it. I would far rather have her believing a lie than having to spend hours in distress trying to cope with something she doesn't understand. One thing to be on the look out for is that, if she is looking for your dad because she heard him come in or she is expecting him home, she doesn't wander out of the house to look for him! There is a big risk that this could happen so you need to be alert to this possibility. One day, by way of example, I got a phone call from the police at 7am saying my mother was in the police station having gone there to report my father missing and to say he had left with her money too. The police said that their concern was that they had no idea how she got there. They were concerned that she may have been out for hours. They were concerned about whether her house was secure or did she just leave and leave the door open etc. They were concerned about whether, given her hallucinations, that she might open the door and let strangers into the house thinking they are there to visit my father etc etc. The police did report all this to her GP and to Social Services and this led to her being seen by the memory team and the psychiatrist there. So don't be concerned about involving the police etc too, if things are really bad.

Hope this helps,

Fiona

 

[Mollycolly]

Thank you so much for all your comments and help. I will acknowledge your suggestions individually later but for now we have reached a crisis and Mum is being admitted to hospital - sounds to me like a raging UTI possibly/probably.

Molly

 

[Mollycolly]

Well a few weeks have passed since I last posted though I have been reading other threads as usual.

Mum was admitted to hospital in a dreadful state just before Christmas. She did have a UTI and was soon responding to antibiotics and was discharged a week later.

The emergency duty team put in a care package, then the reablement team. All went fairly well for a day or two but, probably because of carers coming in, Mum started to think that her home was a nursing home that looked like her home.

No more hallucinations about Dad but this time she started to believe that she had to make coffee for the 20 people that were there . . . . etc, etc.

Carers were then put in place to go in during the night and whilst this helped in one sense it caused her more confusion. Upshot was that after 4 nights in a row where Mum was phoning all sorts of people, including the police (anyone but us as she didn't want to be a burden!) we got her into a very nice home and there she remains.

She couldn't wait to go into the home at the time but now we get many negative comments from her and of course she wants to go home - although home now seems to be one she lived in 25 years ago. 'You won't leave me here for ever, will you?'
Just for a while, Mum. Hmmmm. . . .

This is a great relief for my brother and me as we know she is safe, warm and there is always someone there if she starts to hallucinate again or has a fall or needs any sort of help. And no middle of the night phone calls. It is, though, extremely sad-
making and guilt-inducing.

We are now so much more aware of just what Dad was coping with. He did say she would not manage on her own (he knew he was dying) but she was adamant that she would. Well she did for a time, 5 months. Good going Mum.

Thanks for reading. It helps me to write it down.

Molly

 

[rjm]

Safe, warm, and someone available when she needs - can't really hope for a better situation than that! I hope you can all settle comfortably into your new situation and enjoy the peace in your lives.

 

[Mollycolly]

Thanks Richard. Indeed, what could be better? (Other than this terrible disease not happening in the first place!)

Yes, the peace for me and my brother is lovely and all is going well for Mum so far.

Molly