Is there a benefit in knowing?

[FawnDrenched]

Hi, I am unsure if my mum has dementia but reading up on things it does seem pretty clear cut.

She is 82 and over the last few years she has closed down. It is really sad to see the person she is now whilst remembering her past self. She is very child like and has a number of obsessions the main one being her health. She is absolutely convinced she has a stomach problem which manifests itself with the thought that she has not been to the toilet (number 2). A good example would be last Sunday. We got a call at 07:30am and she said that we (my dh and I) had to look after my Dad as she had to go to hospital. I would say that I have heard this so many times now. I explained that she was fine and would be fine. 20mins later another call and another explanation that she was fine. A short while late and Dad calls to say mum is in a state and they have called the Dr. out. This really frustrates me as they are forever calling a Dr. or an ambulance. The Dr. comes out on Sunday to tell her yet again she is fine. I call to ask what is happening and she said the Dr. came out and he says she is fine though she does not believe him. I say that she has to stop using these services are people are genuinely ill. She gets angry and says she will never call me again. Fast forward 3 days and the phone rings and here we go again she is going to die and needs a Dr. I explain she saw the Dr on Sunday and she is adamant that she did not.

My dad has type 2 Diabetes and is very housebound and unsteady (yes his own fault despite years of hassle from me). He goes to the Drs every other week. Mum goes as well and always ends up making the appointment about her and gets a checkover.

She repeats herself over and over again and where my patience is thin my Dh is great and caring. My sister lives 2.5hrs away and my brother in another country so it is just me and my Dh.

She is paranoid about security, about dying and often just sits with a blank look saying nothing or sat on a stool in the corner with a face mask on.

I could go on and on but I guess most of you have seen all this before. It is not possible to hold a conversation with her of any kind.

We do have lasting PoA for both health and finance and have had it in place for a couple of years but only use the finance one to look after everything for them or rather my Dh has.

There has been a worsening of the situation gradually for years but recently there has been a step change and it is awful to see.

My question after that very long explanation (sorry) is:

Is it worthwhile knowing if she has dementia and if so why would that be as materially nothing would change and we would just have a label?

Thank you. My mum is caring for my Dad in that she cooks albeit they eat the same meal everyday (honestly) and she puts the washing on (last week I arrived and she had one small hand towel and a tea towel in the wash). I am also worried she does not have the capacity to understand the situation and my get very angry (she does on Occassion) if I suggest a Dr's appointment.

Thank you again

Sorry I should have said she was in hospital a short while back but in the middle of the night they had to call to get her home as she said the nurse and the person in the next bed were whispering and plotting to steal her money which amounted to two single pound coins that she had hidden. She got angry/upset with everyone so had to be allowed to come home.

((HUG)) I'm sorry this is happening to you all. It's very very difficult.

it doesn't sound like your Mum would object to going to the Drs. I'd just lie about why & ask the Dr to assess her whilst doing 'a check up'

i think 'knowing' makes it easier to have more patience & you will get some help if you can 'name' the issue.

is your Dads diabetes well managed now & is he getting the foot care etc he can & should get?

was he not on medication/exercising/eating carefully before?

Thank you for the reply.

Dad's diabetes is well managed by the GP and very poorly managed by him. He has been in denial for years even though he cannot stand properly or walk very far or that he has no feeling in his feet etc. His diet is incredibly poor and I kind of gave up a while back as nothing I said or did made any difference.

Dad...the Dr called and she said I was doing really well so she has upped my tablets.
Me...that's not good news
Mum...yes it is he said he was doing well
Dad...keeps quiet

I like you idea about speaking with the GP (maybe an email) explaining things and calling it a check up. She would like that and it is an easy sell

I am pretty patient with them or as best I can be my Dh is great unlike my Dsis who calls once a week to tell them what they should be doing and how to live their lives. My brother calls maybe once a month.

I guess from that pov at least they can be told my mum is not in a good way and you never know they might make more of an effort. my Dsis has not seen mum since last Christmas (at our house where she brought a stinking cold with her which laid both myself and my Dh low for 2 weeks). She is only a couple or so hours away. Sorry for the rant (brother is bloody useless). Fortunately my Dh is great with them. He does jobs, lifts their spirits etc. without thanks from them. He shopped for them for a whole year through the pandemic and he looks after all their finances without complaint. It took him ages to sort out the financial mess.

Sorry I am ranting again.

I don't think a diagnosis helps really. For benefits that they are entitled to claim because of the dementia, they don't need a diagnosis. And for most people, there isn't any medication rhey can take. Although for some forms there might be. I've asked other people on here if the memory clinic made any difference and they've said no.

However as the pp above said, it might make you feel better to have a diagnosis.

Actually, a diagnosis can make it easier to access support and benefits, as well as giving a clearer prognosis and ideas around treatment.

The Alzheimer's Society can offer some advice for people who are awaiting diagnosis (and their families) but a great deal more for people who have the diagnosis in place. There are peer support groups for people with dementia as well as their carers, and in some areas Cognitive Stimulation Therapy that can be beneficial.

If the dementia is caused by Alzheimer's disease, there are medications that can be prescribed to improve some symptoms and delay the progression.

BUT the first port of call is the GP, to rule out several other conditions that affect memory but are reversible. (B vitamin deficiency, thyroid, depression, etc.)

Thank you very much for the replies.

After chatting with my Dh about it I thought it best not to do anything at the moment. She has fallen off a cliff recently although though this goes back a long time. My Dh reminded me that he took my dad to hospital for a routine op and mum (who was in the car) kept asking him where we were going. He kept saying taking dad to the hospital but she kept asking and also asking if it was her that was going to go into hospital.

I think at 82 there is not much that could be done and it worries me that some way either my dad or mum would find out if there was a diagnosis. I believe at this point my mum would shut down completely. I visited yesterday afternoon with my Dd and her dog and my dad loved it. My mum however had nothing to say at all and did not get involved with anything.

My dad, who is 84, really does not see it happening to my mum and recently called her a 'nutcase' when she started locking things and hiding the keys (which then subsequently got lost). That is not helpful at all.

My auntie has dementia and is in full time care and both my mum and dad have made no effort to help my dad's brother who is going through the whole process alone.

thanks again for you help and maybe I can revisit later in the year but at the moment this is our lot. I am very fortunate to have a wonderful Dh to talk to (he btw thinks we should get a diagnosis but says it is my call to make). My Ds would be awful so I cannot discuss it with her and my brother checked out years ago and for some reason hates dad. I guess he has his reasons but he has not shared them.

thank you

So I have reversed my last post on waiting. Today Mum called out an ambulance as she had a shortness of breath. The medics checked her over and did an ecg and no surprise there is nothing wrong. They have now taken her in and she has been waiting for the last few hours for an assessment. Called the hospital etc. keeping Dad in the loop. Got to speak for a long time with Dad, which is a first, and he is in a real state. He said he told the medics there is nothing wrong with her and it is psychological but they took her in for safety sake. He then spent ages explaining how miserable his life it. He said she has had a hospital bag packed for weeks as she is desperate to go to hospital.

Tomorrow I will make an appointment to see her GP with her for an assessment of some kind.

thank you

Sorry should have asked. Are there any questions or things I should ask/mention to the GP?

If anyone has experience of this I would be grateful.

Thank you

I’m sorry, how awful for all of you.

My aunt had Alzheimer’s, GP referred her to a Psychiatrist and that appointment basically involved drawing a clock (which she couldn’t do) and answering a few general knowledge questions, like who is the current PM. She answered all of them correctly.

She was also suffering with hallucinations, sun downing and her depth perception - or lack of resulted in falls.
Does your mum get enough water? Lack of water can make an elderly person very unwell mentally.

We were able to obtain a care package for my aunt, so she was able to stay in her own home a little longer. She was given medication, she never knew she had Alzheimer’s. She was much happier once admitted to hospital following a fall and then onto a lovely care home. She loved it there. We couldn’t have done this without social services involvement, they were very caring and persuasive.

In my experience it was difficult because you want your loved one to get better, but as we know there is no cure. We were able to establish my aunts likes/ dislikes and her wishes. Once admitted to hospital it was as if a huge weight was lifted from her, she was happier, ate very well, became very relaxed.

The diagnosis imo is more for the family than the person affected. You can ask what to expect etc the stages of decline, whether memory clinic is appropriate or not. What help is available and so on.

Thank you @Suzi888

When you say care package was that something that was agreed with Social Services?

My mum and dad are financial ok. Not super wealthy but for sure they have savings. Does that mean we cannot get SS involved or does that happen automatically after seeing the GP?

thank you

It's really hard to get a care package, but in my experience medication does help. It's two-pronged; helps to even out the memory loss and confusion and helps the person emotionally. By that I mean that it's frightening and sad, and medications to help with that are not something to sniff at.

Thank you.

She lives 10 mins walk from the hospital. Dad called and said she was at home. I was surprised but he said she walked. I specifically asked the hospital to call me on her release as they said I could not go in to see her.

I spoke to her on the phone and she said that she had been kept in overnight. I explained that she had gone today and was only a few hours. She then got really angry with me and wouldn't speak (it seems to be a dance we now go through).

If you don't mind me asking what medication?

thank you

It depends what's sort of dementia she has as to what medication is appropriate if any. Some people can get quite aggressive so sometimes it calms them down. And I think there is something for Alzheimer sufferers that might slow the progression down. My mum has dementia but there's no medication that will help her.

SS will do a financial assessment to see if she is entitled to help. We didn't bother because my mum had savings and so she's entitled to nothing. Her carers are privately funded. You might he able to get aids funded by them. Honestly it all seems a bit hit and miss. Until you get dragged into the social care system you don't realise how bad it is and how little provision there is. And if you're not entitled to help, there's no one to turn to for practical support. I rang the council, alzheimers uk, the dementia society, age uk, the gps. They were all nice people but none of them had any practical help to offer even though I was willing to pay for it. It's a nightmare and I hope the govt can sort it out with the new NI increase but I really doubt it.

It's a horrible disease, your mum will be getting angry because she's scared that she can't remember things. My mum did the locking away of keys then hiding the last key which we couldn't find. She still hides keys, they just all have fobs on them now so I can find them by pressing a remote control. I really feel for your poor dad.

She's entitled to Attendance Allowance. You don't need to be assessed for it, you just fill out a form. When she's severely mentally impaired she can get council tax reduction for which she'll need a letter from your gp.

I work in advanced dementia care and she certainly appears to be displaying symptoms. Unfortunately I don't know much about the process before someone gets to a point before needing a home.
A dementia diagnosis can be scary and is often the reason why people don't wish to get assessed for it.
If you have POA for her health, are you able to speak to your mums doctor and ask what their opinion might be? If she's ringing for health services regularly, they may already have their suspicions.
If your parents have less than £23k (or thereabouts) they should qualify for government funding for a care package. If over that amount they would need to pay for it themselves, until their savings get to that amount.
If I could recommend anything it would be to educate yourself, the more you know, the more you understand about the disease so the more you can do to help and know which services to reach out to.
Dementia is a very cruel disease and you could be in for a difficult stage in your life. I'm so pleased you have a supportive DH, lean on him. I really hope everything works out ok for all of you.

Thank you for the replies they have been really helpful as I would not have known where to start.

Called the GP surgery this morning and the receptionist was lovely. She listened to me and wrote all the notes for the Dr. who will call me tomorrow as she does not work today.

Got a bit resentful last night but have my big girls pants on today. Spoke to my sister who did a lot of crying (not helpful) and she then msgd my brother (who I was not going to involve as he lives in another country) with chaotic messages so I have cleared that up now. I think it is a case of me and my dh going it alone on this as we are the ones 'on the ground' and too much noise is not helpful at all.

Really pleased we got the lasting PoA in place a while back (big thanks to Dh) and all the finances in order to the point that we have been managing them since during the first lockdown (again thanks to my Dh).

The note to educate myself is great advice and one of the reasons I am on here as this is real world experience so thank you.

The have more than £23k so no care package. My Dh runs their finances and a while back he sorted out Tenants in common, split their money into single accounts and the PoA for both. He has PoA for finance I have it for both finance and health. He did not want to be put in the position of making health calls as he felt uncomfortable about it.

Bizarre but my mum gets attendance allowance for my dad who as I mentioned has very poor physical health (type 2 diabetes and not in a good way). I would not want to get aa for them as we can afford things and it may be the case that if diagnosed she loses it for my dad (not sure on this one).

Thank you again for the replies they have been super helpful and I will post an update regarding the GP should anyone else be starting this journey.

Been to the Dr's with Mum. She had some cognitive tests such as months of they year backwards, counting backwards from 20 etc. and some memory tests. Overall she did pretty badly but she could have been stressed so I understand this is part of it. Got to the hospital for blood tests to rule out deficiencies (vitamins etc.) and the GP is going to book an appointment at the memory clinic.

The GP feels there is a lot of anxiety which I agree but clearly there is much more to it than that. Mum agreed that she would take something for her anxiety which she has never agreed to before so that is a plus.

Dad is no help whatsoever and he makes lots of ridiculous statements in front of her. The term 'doo lally' is not helpful for heavens sake.

I do have PoA but the GP would not agree to me having access to Mum's medical records. I looked on the NHS app and I can only create a linked profile if we have the same GP surgery. The GP knows to call me when dealing with Mum so that is a positive. There were some other bits and bobs that I would like to put in place such as attending appointments at the hospital with Mum but at present I am unable to get approval for that even after explaining that Mum has no idea what happens in the appointments. I will keep pushing on this one but on an appointment by appointment basis.

Thanks for the previous advice and could anyone let me know what to expect at the memory clinic and how long people have had to wait for an appointment?

Thanks again

Get your mum to sign a letter giving you access to her medical records and to be able to discuss matters on her behalf. My mum did this and it has made my life tons easier.

Thank you. I thought having PoA and it being registered with the surgery would be enough. I will contact them with a signed letter

Lots of good advice above. Diagnosis itself will vary but basically a more detailed version of what the GP did and maybe a scan to identify the type and extent of the dementia.

There should be a followup appointment and this bit is where you have to be on your toes - if it's good they will tell you about your local Dementia services which will include Dementia Navigators - may have a different name but this person will be crucial to guiding you to local services which tend to vary by area and to be fragmented. They can also be your first port of call for questions. GPs do not know what's available and you'll be lucky if your mum's gp is much use to be honest.

If your mum has dementia diagnosis + you have POA it does make it much easier to take control.

Start looking around for a dementia cafe/carers groups etc - they are a mine of information and emotional support. Alzheimers Society is useful, they have a service called Dementia Connect which can help you find local services.

It is inevitable you are going to end up doing a lot of caring - pace yourself, delegate whatever you can, pick your battles and lower your standards.

POA for health only kicks in when someone is deemed to have lost capacity. Dementia diagnosis helps a lot with this!

There's no disadvantage in getting attendance allowance for your mum. FILs both get the higher rate and as MIL is totally dependent and can't communicate I'm not sure how she is supposed to assist FIL overnight🤷‍♀️

I agree with the previous poster who said make sure the GP surgery have your name on file as being someone with whom they can discuss your mum's (and Dad's?) medical records. My mum now doesn't go to an appointment without one of us siblings being present. She's very deaf and even without a dementia diagnosis she clearly struggles to follow the conversation thread so we have to break it down into simple things for her, act as advocate and fill her in afterwards.

Please apply for attendance allowance and mobility allowance for both your parents - the benefit is for them, so your income isn't relevant and it helps further on down the line.

In my experience (3 parents with dementia - -both of DP's & my Mum), when you ask for help you will be offered the absolute minimum and it may not be directly useful, however if you accept this, next time you ask for help, they have to give you the next step up. So if you haven't claimed attendance and mobility and you ask for help with incontinence and self care, you'll be told to claim first, whereas if these are in place, the next step up is offered.
Should you parents ever need to go into care home, both allowances continue, which helps with fees.

Once you have the allowances sorted, ask for a carer's assessment by social services - this gets the family in the system. Accept any help offered. Just to wart you, after a while the importance of the GP drops away - it comes down to social services as they are /should be better placed to arrange home care, cleaners etc. GPs will not get involved - took us a while to get this.

Whether you have a formal diagnosis is a good question - reading some threads on here, some social services seem to require a formal diagnosis, we were fortunate as both social services accepted help was required and offered. My Mum did attend a memory clinic but became very distressed at the questions so didn't complete the assessment - didn't make a difference to social services - she was confused, unable to prepare the most basic of meals, wandered at night and didn't know where she was, incontinent - you get the picture.

Having said that, different councils do run things in different ways - we have been fortunate with both councils for our parents - both well organised for dementia care at home. get as much care as you can going into the home and prepare for the crisis, which requires admission to a care home for one or both. This will happen - you'll see it coming a mile off - it's like a slow motion car crash.

LadyGardener has it spot on -

It is inevitable you are going to end up doing a lot of caring - pace yourself, delegate whatever you can, pick your battles and lower your standards

I would add - accept you will never be able to make things better, make them perfect and don't be guilted by anyone - including yourself. You're doing what you can - you can't be there 24 hrs a day, the needs of your DF maybe at complete odds with those of your DM and you can't please everyone, in fact it may feel at times you can't please anyone. This is normal in this situation - there's many of us have got that particular Tshirt.

Thank you I have made a list of things to get on top of.

The GP did put my name on the system as someone to contact and also confirmed the PoA was on there. She has said that the reception team can see on the system that they are able to speak to me about Mum.

I will look at the benefits for them. As I said early Mum has Carers Allowance for Dad.

When I went to pick her up this morning Dad took me to one side and said she was up and dressed very early yesterday as someone had called her at 3am to take her house away, which of course never happened.

I agree that Mum will get very very anxious about the memory clinic but at least it provided some light relief when she asked me for the fourth time where she had to go and I said 'I think it is the memory clinic but I can't remember'. She got it and we both laughed.

I don't feel guilty about things but I do get frustrated with my Dsis who is happy to provide advice from afar. I need to work out how to ignore this but as she is not part of things she then confuses the process with Mum by calling them and suggesting things that are clearly not possible. It doesn't help that when we speak she is permanently on 'send'.

I am hugely grateful for you kind advice