Memory clinic fall-out

[barkingmac]

I recently attended a memory clinic with my mum, who is in her mid-70s and has been showing signs of memory loss and confusion for a couple of years now. We were unable to complete the appointment, partly because the doctor we were due to see was off work with Covid, and partly because my mum became very distressed during the assessment (she is adamant that there is nothing wrong with her) and insisted on leaving before the end. Before we left, I was told that the clinic would send a letter to my mum's GP to update them on the appointment and was asked whether I thought it would be a good idea for a copy of the letter to be sent to my mum. I said that, if possible, it would be best not to send it directly to her and (I thought) it was agreed that the letter would be sent to me instead so that I could prepare her before she saw it. Unfortunately, she received the letter through the post today. It describes all of the concerns I discussed with the clinic during the appointment as well as the results of the tests she did complete.

Understandably, she is now extremely upset and angry with me and feels that I have betrayed her. She no longer wants to talk to me or see me. We are supposed to return to the clinic shortly to see the doctor we should have seen last time, but she says there is no way she is going back there.

What can I do? We don't have a diagnosis, I don't know how to access any support and I just don't know what I'm supposed to do next.

Any advice would be much appreciated.

Yes we too found the same scenario 'no diagnosis, no help'.

When symptoms are being noticed, it is a really good time to get an assessment. The person will still have full capacity at that point & the legal necessities can be put in place easily. Further down the line, it can cause all manner of problems.

OP your Mum will calm down, give her a few days. She's frightened & very much doesn't want to face up to what might be. Totally understandable really. Perhaps pop a letter in your Mothers Day card, explaining you're just concerned & you want her to be safe etc. Deep down she knows it's from love, seeing it written down, might re-enforce it.

I am sorry to hear that implantreplace. But refusing to provide care on the basis of lack of a diagnosis is very poor practice by social services. I work within a social care team and as others have said it is a needs based assessment. It is very common for someone to not have the dementia diagnosis. What is more difficult is to assess someone as lacking capacity, as the legislation says they must have a brain condition, so if they are not diagnosed with any cognitive condition but do in fact lack capacity, it can be more difficult. Particularly if a person is refusing care.

The assessment makes everything so so so much easier
As it’s an objective medical assessment that can be waved in front of services for help

So full Ct exemption
Makes obtaining power of attorney a great deal more straightforward
Accessing the many local nhs support services
And, if need be (likely) social services
Also - any run ins with the police (not uncommon) are swiftly dealt with

Without an assessment

It’s invariably just the family’s word

And obviously not all families have …. Shall we say the patients best interests as their priority

The assessment provides an objective opinion separate from the family

@countrygirl99

By the way, despite an assessmentof Alzheimers my mum is still convinced that everyone else is wrong and her memory is fine so it may not be that much help.

That is our experience too.

We are 5 years post diagnosis of Alzhiemers and still in total denial. Had carers to make sure she didn't burn the place down and she wouldn't let them lift a finger because "there's nothing wrong with me". My brother managed to get her in to a care home on Thursday by basically lying to her.

I would be prepared for mum to never accept it as it's very common.

We were asked by adult social services and care homes if she had a diagnosis. I would say that a proper assessment is invaluable.

It is different in different council & Trust areas regarding what support is available at what point on the journey. There are medications that can slow down or lessen symptoms but each human being is different in how their body responds to this. Capacity and insight are also 2 different things and can fluctuate depending on the day & the decision in question.

My relative was apoplectic when it was suggested he may have memory issues. He declined all assessments. Over the next 3 years he objectively deteriorated to the point where he was unable to refuse some treatment and failed numerous capacity assessments. He is now in residential care. The years between initially suggesting he had a problem and the present day were traumatic in parts but nothing else could be done except to watch and wait and keep him as safe as we could, as safe as hed allow us to make him. Conversely, another relative came to accept over time that things weren't quite right with them and has accepted some treatment voluntarily while she still has capacity.

It is HARD. For everyone. I wish i had a magic answer for you, OP.

I think it is cultural incompetence for a clinic not to be able to recognise a polite and mildly veiled statement 'I think it would probably be best if...' as a definite request.

As a previous poster said, you do not need a diagnosis to access support, or to access Attendance Allowance.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/attendance-allowance/claiming-attendance-allowance/how-to-claim-attendance-allowance/

The stumbling block for you will be your mother's refusal to acknowledge there is anything wrong and accept help, regardless of diagnosis. When social services visited my mother (who has Alzheimers) she told them she was fine and didn't need any help, and they were more than happy to beat a hasty retreat. They will not force help on someone who refuses it.

But the way you access that help is to google Social Services Adult Services plus the area where you mother lives, and call them, and they will visit and assess her needs.

As others have said, it is possible your mother will forget the letter and become more amenable to seeing the doctor at the memory clinic.

Do you have Power of Attorney for her? I am guessing not, but that would be a very useful thing to get done as it would allow you to handle her finances and make decisions on her behalf. That assumes she still has capacity to sign a POA, and would agree.

The most useful resource for you is probably the info and forums at

forum.alzheimers.org.uk/

Thank you all for the advice, recommendations and empathy - I have a lot to work through and process. We do have both powers of attorney sorted, so at least that is one less thing to worry about.

Things have not improved overnight. She has told my brother that he needs to watch me because I'm a liar who is determined to put her in a home and suggested that I am the one who needs to see a doctor because I clearly have something wrong with me. She has made several copies of the letter and dropped them off with various friends and relatives who live within walking distance as evidence of what I'm trying to do.

I am struggling with how to handle this because if I try to reassure her that I have no intention of putting her in a home and am just trying to get help to make sure she can stay in her home for as long as possible, that just makes her worse because I'm contradicting her and she then feels that I don't listen to her and am bullying her.

She is due to have a home visit from the mental health support team this week, but is currently saying that she won't let anyone into her house so they can't take her away.

I really did think that the memory clinic nurse had agreed that the letter would not be sent directly to my mum. It was hard enough feeling like an informant during the appointment and I don't know if I'd have been able to do it if I had any idea that it would be reported to her in this way.

@Polyanthus2

What did you hope to gain from the assessment. I'm happy to be corrected but as far as I'm aware there is no medication that helps much. Was it to convince your DM she needed carers? Or to get help from social services? I ask because maybe the assessment isn't needed. And the GP or Social Services can move forward with support without it.

Medication, financial support (reduction in council tax, attendance allowance-living expenses can increase with dementia)

I ended up using emotional blackmail with my dad to get him to accept carers

@Polyanthus2 while there’s no cure for dementia, some of the medications can slow the progression

OP unfortunately your mother was sent a copy of what was prepared for her GP. The clinic would include your concerns as they would help illustrate areas which you beleive your mother needs help.
This in turn would help the GP formulate a referral of what SS need to look at.

You can call the clinic ask for a note to be placed at the front of her file to not send out the detailed medical assessments directly to your mum.

The clinic will usually have a social worker who will have seen the same dynamics in many famalies and may be able to offer you suggestions. They will be best places to advise you of what you can and cant do at the current time.

It a long journey ahead 🌻

@Polyanthus2
There are medications which can help slow some types of dementia.

As pointed out the abilty to have diminished capacity but still legal capacity is very important for setting up legal stuff like power of attorney and how the various services can interact with family.

If the OPs mother is in full control of her faculities then she has the right to reject any plan that the GP or SS put in place and to prohibit them from speaking with the OP again.

If she has diminished capacity then the GP and SS need to take account of the risks involved when she is not fully capable of assessing what is and is not in her best interest.
GP's and SS will also be aware that people try to do their best for the tests and that they can lie to cover up problems they are having or because they don't see the problem.

Been there done that. The complete denial of anything being wrong and the absolute rage directed at me in my case was very hard to bear. It was vascular dementia with my mum. Finally we got to a memory clinic which was hard for my DDad and me to watch her struggle so much even though we knew things were very bad by then. She fell soon after, ended up in hospital where they diagnosed it (there were countless CT scans from previous falls which spelled it out in all but name).

Try and get her to give you financial and health power of attorney asap whilst she still has capacity, that will be be very helpful later on.

My MIL never accepted she had any problems. She's been in a care home for some years. Social workers only felt able to overide her refusal to try a care home when she was unable to keep herself safe e.g. had unexplained black eye, replied "call my sister" as to what she'd do if there was a fire in her house and similar.

Without the assessment, which is an objective assessment of the situation, it is all but impossible to access nhs treatment and support. Its important not to get confused between the Social Services assessment of needs, which is I think what you are talking about, and the memory clinic assessment possibly leading to a diagnosis of dementia.

The Social Services assessment of needs is the first step in getting help from Social Services.

An assessment by the memory clinic is not necessary to access Social Services help, and there is no need for a diagnosis of dementia.

@HeddaGarbled

*The assessment is the gateway which opens up any and all support

Without the assessment - the door remains firmly shut*

That is not correct, please ignore that post.

I’d go as far as to say the opposite has been the case in my experience! Trying to access support for my FIL after his diagnosis has been nigh on impossible

So different council social services have different criteria - no surprise there.

My Mum was just like the OP's - refused to complete the memory Clinic assessment, and from what they said, this isn't unusual. Didn't not stop social services assessing her and home care kicking in at all.

I would suggest that if a social services dept demands a distressed person undergoes an assessment which causes more distress that this is cruel as well as being totally unnecessary

@barkingmac

Thank you all for the advice, recommendations and empathy - I have a lot to work through and process. We do have both powers of attorney sorted, so at least that is one less thing to worry about.

Things have not improved overnight. She has told my brother that he needs to watch me because I'm a liar who is determined to put her in a home and suggested that I am the one who needs to see a doctor because I clearly have something wrong with me. She has made several copies of the letter and dropped them off with various friends and relatives who live within walking distance as evidence of what I'm trying to do.

I am struggling with how to handle this because if I try to reassure her that I have no intention of putting her in a home and am just trying to get help to make sure she can stay in her home for as long as possible, that just makes her worse because I'm contradicting her and she then feels that I don't listen to her and am bullying her.

She is due to have a home visit from the mental health support team this week, but is currently saying that she won't let anyone into her house so they can't take her away.

I really did think that the memory clinic nurse had agreed that the letter would not be sent directly to my mum. It was hard enough feeling like an informant during the appointment and I don't know if I'd have been able to do it if I had any idea that it would be reported to her in this way.

How upsetting for you! Can you get your brother, or a friend of hers, to help? It's not fair for it to be entirely on you. Sometimes working in a tag team is helpful- your brother takes over as first point of call until she falls out with him and comes back to you, and so on.

Shes scared of being put into a Home. Perhaps she doesn't understand that most often keeping the elderly person in their own home - with help - is by far the best option for them

Maybe your brother needs to be more involved for a while , while DM feels angry

@GreenFingeredNell15

Shes scared of being put into a Home. Perhaps she doesn't understand that most often keeping the elderly person in their own home - with help - is by far the best option for them

Maybe your brother needs to be more involved for a while , while DM feels angry

I think where dementia is concerned keeping someone in their home is NOT often the best option. My mum has had carers in her home for a couple of months now because she puts the gas cooker on with the ignition turned off, won't bath or shower and won't eat properly. She won't let the carers do anything for her. They are paid a fortune just to stop her blowing the house up and it's not worked out at all.

In a care home She will not be able to refuse help so much, although I expect bathing to still be an issue. She will be safe and properly fed though. It really is the best place for her. She's gone to the same care home that my dad has been in since his stroke, so they are together again.

Her older sister is good mentally, but not physically. She has a 24 hour carer in her home and that works for her.

Every situation is different and no one solution suits every older person.

If not being able to cope was the gatewayz we'd have been waiting 8 years. Memory test showed problems then. Only unable to cope now. You were right to try. Always get the supports in before they are strictly necessary if you can. Great you have both POAs.

When someone has dementia, the emphasis is on physical support and keeping them alive as long as possible. Sometimes the person who is developing dementia is hoping that something else will carry them off before they lose control of their life.

@MereDintofPandiculation

When someone has dementia, the emphasis is on physical support and keeping them alive as long as possible. Sometimes the person who is developing dementia is hoping that something else will carry them off before they lose control of their life.

I initially read this & thought FFS but sadly, it's true. My Dad is end stage & there honestly is no crueller illness.

I posted that was the assessment necessary as the medication doesn't cure dementia.
Someone else said teh medication slows the development of dementia - my thoughts were 'is this a good thing'.

Very depressing but I have a family member in a care home and it seems like a prison sentence, as they aren't happy, rather than a supportive and happy arrangement.