Memory clinic fall-out

@Polyanthus2 sorry to hear that your relative is not happy in a home. That's certainly a stage that you don't want to prolong.

When my Mum was first put on meds, it plateaued the symptoms while she still had a good quality of life. By the time she was end stage in a care home, she was refusing meds and most basic care. Thankfully that didn't last for too long as she gave up the will to live 😢

As a PP said, it really is the cruellest disease and I'm sorry for everyone who is living through this with their loved ones.

OP, this may be the first of many dramas. It is her disease talking at this point, not your mum. I tried to split the two things out when it became hard with my mum's word and behaviours. Try and think of her 10 years ago as a contrast and that woman is still in there, scared and confused. Look after yourself and perhaps look in to whether you have dementia carers groups that can support you.

All I can think reading this is that when it's our own turn to need assessments & support -- don't be afraid. Embrace the assessments.
As much as anyone can form resolutions about the future, plan to be constructive in how to manage our likely physical/mental decline.

Is something we can do for our future selves.

No two people with dementia are the same, and a diagnosis doesn't have to mean that a person can't live well and enjoy many happy years.

I know many people who have been living with a dementia diagnosis for over a decade and are still happily in their own homes with varying levels of support.

It's a shame that your mum is feeling betrayed. Fear of change and especially fear of being put in a home and losing control can be a barrier to getting the right support in place.

Hopefully with time you may be able to reassure your mum that a diagnosis is a tool that can help her access what she needs to live the rest of her life in the best way possible.

It's worth getting in touch with The Alzheimer's Society for advice. They will have information about what support you and your mum can access in the local area.

So hard OP. In my experience she may rage at you now but eventually accept it. She may also forget if you hide the letter. In the short term I'd suggest working with GP /clinic to get assessment completed (blame it on GP if necessary) and go for 'mild memory issues' or some such fiction.

Yes, important point re meds also, as perhaps they have contributed someway to the 8y we have had up to now.

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.

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.

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.

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.

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

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

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.

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.

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.

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.

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

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

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/

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.

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.

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