Mum won't go to Memory Clinic

[Lcon]

Hi there,

I think it highly likely that my Mum may have some form of dementia but she has not been formally diagnosed.

I would say it was probably 4 years ago when I first got an inkling something was not quite right with her memory/reasoning. Now, she seems to have very little short-term memory.

Mum has always been very proud, very stubborn, prone to depression and a bit fearful of going to the doctors. As a family, we knew that any mention of memory loss/mental health issues would terrify her and that should would react angrily and lash out.

We got Mum to the doctors last year on the pretence of a general health check. Docs took blood samples which were all fine but on the memory test she scored 2 out of 9 and was referred to the local memory clinic. Mum did not take this well and was up all that night crying and shouting about it and even threatened to commit suicide. This frightened and upset my Dad so much that he said he didn't want to take things any further regarding a diagnosis and he would just cope with how things were.

I think things have now gotten worse - Mum doesn't have a good word to say to or about Dad and he totally doesn't deserve that. She constantly has a go at him, attacking most things he says, it must be soul destroying for him. I worry about Dad's health and how this constant strain must be taking it's toll on him. He's a lovely gentle man and is naturally quite gregarious but now he spends most of his time just looking after Mum.

I don't know what to do to help them both. I live hundreds of miles away so can't pop round each week to give Dad a breather at the moment and they won't come and stay with me as Mum refuses. Could anyone please give me any ideas of what I could do to help the situation? Thank you in advance.

 

[Jo Sutton]

Oh Lcon, I feel for you so much.

My mother is also terrified of "senile dementia" as she calls it. Her aunt developed it, and ended up in a care home (not the best thing in the '70s) and died about a month after she got there.

We have coped with it by telling her that 'dementia' is the name for any sort of memory problem and that 'vascular dementia' is different to 'senile dementia' and just means she has some memory glitches at the moment, which the doctors will try to help her get over.

It sounds as though your problem is that your Dad is also in denial, and you are not around enough to take it off him. Is there any way that you can persuade him that this is only going to get worse, and he will need the help in the future?

You seem to have the hang of 'love lies' with your Mum. Can you get her to the memory clinic under the pretense of it being something else? The memory doctors and nurses are very used to dealing with patients who are frightened or in denial, and will work with you to minimise the stress on your Mum, so if you do manage to persuade her, get in touch with them in advance and warn them of your Mum's resistance - and your Dad's if you feel you need to.

Is there any way you can take a holiday and go and stay with them for a few days to get this done?

Alternatively, can you talk to your Mum's GP and tell them what is going on? It may be that your Mum would benefit from anti-psychotics or another drug to calm her down. Again, GPs have seen this again and again, so should be in a position to help you. If they tell you they can't discuss your Mum with you because of confidentiality, then tell them you don't want them to tell you anything, you want to tell them. They shouldn't have a problem with listening.

Sending you all the virtual support I can to get over this hurdle. It's important that your Mum gets the diagnosis, as that will get her into the 'system' and allow your Dad to access the support he needs. Get the professionals on your side and let them know what's going on.

Hugs

Jo xx

 

[Philbo]

Hi Lcon
It can be very difficult in these early stages and speaking from a husband's perspective, you can be inclined to try and ignore things and hope it goes away.

My wife was only around 59 when I first started noticing that she was having some sort of memory problem. At first it was repeating herself quite often, forgetting how to do things (got in the car one time but couldn't not remember how to start it for about 30 seconds, for instance).

We all put this down to "funny 5 minutes" and even our GP initially said "we all do daft stuff as we get older!" However, it was whilst on holiday in Ibiza that summer, she commented that she knew the lady over the other side of the lounge. I said that it was unlikely, as we're in Ibiza? She replied that I must be silly, as we were in our home town!!!

When we got back, I managed to get her to the doctors and she scored very badly on the memory test. We got her to the memory clinic by saying that they needed to to some tests to check/eliminate any problems with migraines, epilepsy etc.

It took about another 6 months (to get initial appointment, scans etc) before being diagnosed with dementia in Jan 2014 (aged just 64). Luckily, after this, she quite quickly seemed to no longer be aware that there was any problem.

If your fears are proved right, then your dad will need all the moral support he can get. I would try and get him to seek out and get in touch with any local support groups.

Good luck.

Phil

 

[Moggymad]

My mum was frightened & absolutely refused to go to the memory clinic at our local mental health hospital due to memories of her own mothers mental health experiences. In the end psychiatric nurse made a special case & visited mum at home to carry out the tests required. Following this & a brain scan mum was offered medication to slow the decline. Just wondered if you might be able to get special circumstances for your mum. We were told it was necessary to be reviewed at the clinic after some months so that would have been a problem further down the line but it didn't come to that as meds didn't suit her so no follow up was required. This mean't the case was closed & care passed back to GP.

 

[northumbrian_k]

My wife would not have gone to the memory clinic if she did not believe - rightly - that this is what her GP had recommended. This was stated clearly in the referral letter and - despite some awkward moments all the way until we actually go to the clinic - my wfe went along for that reason. Once she was there she relaxed.

 

[Slugsta]

Hi Lcon and Welcome to TP.

What a horriuble situation you are all in, you have my sympathy

I was lucky that my mum became very passive as a result of her dementi. Added to that, she left me to look after most of the medical stuff as I was a nurse. We simply colected her and drove her to the clinic without explaining where/what we were going. When we got there I told her that she had an appointment - deary me, did I forget to tell you? My memory is terrible these days!

I know I was lucky and this aproach will not work for everyone. Some people manage to persuade their PWD (Person With Dementia) to go to the appointment 'to do the tests and show everyone that you don't have dementia' or, as has been suggested, to rule out other problems that might need treatment (indeed, the appointments could actually do that!). It certainly looks as if you might need a fair amount of guile and 'love lies'.

As far as your mum not accepting she has dementia - this is very common and is actually a part of the disease. The fancy name for it is 'anosanagnosia', which simply means 'not knowing that you don't know' and it is the brains way of trying to protect itself and not show weakness.

I hope you find a practical solution to the problem that brought you here - but I can certainly guarantee that you will find understanding and support, if nothiing else!

 

[Lcon]

Thank You

Hi to everyone who replied to my post of 'Mum won't go to Memory Clinic' - and thank you so much for taking the time to share your experiences and advice with me.

As it happens, on the day that I made that post, my Dad got in touch to tell me that the previous couple of days had been so bad that he called the local Dementia care team and was lucky enough to arrange to get a nurse out to see Mum the next day.

This feels very sneaky to do this but I called Dad in the morning of the appointment and he pretended to Mum that it was the local council calling to say they were going to come out that day just to check on how they are doing, is there anything they need etc. Mum seemed to quite like the idea of a visit like that and was happy for the visit to go ahead.

Dad said the nurse mentioned the memory clinic but Mum said there was nothing wrong with her memory - so she still seems resistant to the idea that there is anything at all wrong there. Really interesting to learn that this is a common trait and has a specific title of 'anosanagnosia' - learning things like that is a real help in understanding what is going on with the brain (thank you Slugsta). Dad said the visit went well, Mum seemed to think that any mention of ill-health was purely to do with her sore leg. When she gets upset sometimes and thing get a bit too much for her she seems to put it all down to having a sore leg - I wonder if this is her way of realising that something is wrong and searching for an answer to it. As much as there is the denial, I'm sure on some level she knows something isn't right, and that must be so scary for her.

I'm so pleased that Dad reached out to the local Dementia team, like you Philbo, (and as you guessed Jo Sutton) I think he was kind of in denial hoping it would go away, and doubting himself too - it feels awful at times to feel like you are 'diagnosing' your loved one - 'what if I'm wrong?' he thinks at times. He also worries about not pushing her to get diagnosed - like he's letting her down by that in a way.

We just have to wait for the nurse to come back with her findings now, I'm hoping that to take things further (would the next step be a brain scan?) that we can just tell Mum that it's all to do with her sore leg - using the 'love lies' methods as advised.

Thanks to you all once again, it's really helped to get things off my chest here. I will send all the replies on to my Dad so he knows he's not alone.

 

[Risa]

Hi Lcon

That is good news that a diagnosis is being sought. I wanted to mention that if you think your Mum might be a bit freaked out by having a brain scan, you can ask the Memory Clinic to provide you with a sedative to give to your Mum ahead of the scan. My Mum went into a panic at her brain scan appointment and I wish we had been told that a sedative could have been provided as everyone's time was wasted when she refused to go through with it. The second time it went ok as Mum was mellowed out

 

[Amy in the US]

It might feel sneaky or underhanded, but often we have to get creative in order to get our PWDs the care they need, and keep them safe. If it helps, think about outwitting the disease, not lying to your mother. I know how hard it is to do what the PWD needs, and not what they (say they) want.

My mother also has anosognosia and this was very challenging, especially when she was less affected by the dementia, and sounded and acted more "rational." It's so difficult when there seems to be capacity, or it fluctuates, but the ability to make a considered, appropriate decision is no longer there.

Sending best wishes to you and your family.

 

[Jo Sutton]

So glad things are moving in the right direction for you. I'm sure you will find a creative way to get your Mum to the memory clinic.

Good luck!

Hugs

Jo xx

 

[Maggiemol]

I found that the more my husband's symptoms became obvious the more determined he was not to go to the memory clinic. He had attended quite willingly four years ago when he was diagnosed with mild cognitive impairment. In February he became very agitated and confused. In one of his sessions he turned on me verbally and along with alot of other weird thoughts, began to accuse me of having a breakdown and trying to undermine him. I encouraged him to phone our GP's surgery which he did and they were able to get a good idea about his state. As a result the GP agreed to be in touch with me via email and we were able to arrange a visit for a review where a member of the local mental health team would also be there. At the 'review' it was agreed my OH should go on Respiridone an anti psychotic.
The following week someone from the mental health team visited us at home and did a memory check and after he had been on the drug for about a week and was settling down, we did visit the memory clinic. He was diagnosed with Alzheimers, they didn't bother with a scan.
I wouldn't be able to get my husband to the memory clinic again but he has got a diagnosis, he is on medication which seems to be working and I can contact the team at the memory clinic if I need advice.
Dealing with dementia is really scary and knowing you can call someone if things get really difficult gives me a little comfort.
This disease is really tough but help and support from the people on TP is hugely valuable. Take care

 

[Lancashirelady]

I wouldn't put too much faith in the memory clinic. My Dad was really resistant to going to the memory clinic but we got him there by subterfuge - and I wished we hadn't bothered. The consultant was offhand and totally unsympathetic. Dad got a score of 18/30 and not offered any meds but referred for a CT scan, without any explanation why or support in the meantime. Dad managed to hide 2 appointment letters while steadily getting worse and by the time we got another memory clinic appointment he was incapable of walking. We then were given a home appointment for 6 months time. He died 2 months before the appointment, still without a formal diagnosis.