AIBU To think this is an urgent appointment?

[Glitter99x]

Hi bit of a sensitive topic here. My DP’s grandmother has suspected dementia. All the classic signs- forgetting often, asking things multiple times etc. Over the past year it has gotten worse, even her brother who lives in Fife and doesn’t have that much contact with her, has noticed within a few months how much she had changed. She thinks DP and I live together, we don’t and we have said this before, she was adamant once her daughter (DP’s aunt) was mad at her when she had been there the day before. That his mum hadn’t taken them shopping when she had that day earlier. I may be not that accurate about the last two incidences but they aren’t far off if they are a little wrong.

Anyway, my DP’s grandfather who lives and is married to his grandmother is worried sick, they are elderly. It’s too much for him to cope with, he has us of course but he is struggling. He confided in the pharmacist when getting his medication. The pharmacist without even being asked booked an appointment for DP’s grandmother, which was really kind. DP’s grandmother is Very stubborn, and there is no way she would of gone if she wasn’t told it was for a checkup. We thought it was with a doctor she would be seeing. It was a nurse. DP’s mum went with them as she was worried DP’s grandmother would kick off 😂. This nurse was pathetic. She didn’t know what grandmother was there for, DP’s mum had to actually tell her she was there for a blood pressure test and blood tests. They had thought she would be seeing a doctor regarding what we think is her dementia. DP’s mother and grandfather went to the receptionist and told her it is urgent, she needs to be seen ASAP. They were told a three week wait. AIBU To think that they should be prioritising a dementia appointment at the doctors? That is should be an emergency? DP’s mum said it is an emergency to us, but not to them, as it doesn’t affect them. I’m sorry but surely a dementia appointment is more important than a person with an infected toe for example?! She is elderly!!!!

An issue that has been going on for a year is not an emergency. Her condition will not significantly worsen in 3 weeks. Using your example, an infected toe could be an emergency due to the risk of sepsis (I developer sepsis from mastitis, less than 24 hours after initial mastitis symptoms, and spent a week in intensive care).
Book an appointment for 3 weeks time and offer as much support as you are able in the meantime.

The majority of people you meet for dementia treatment will be clinical nurse specialists.

My mum going through the same. The GM needs to be referred to the memory clinic by her gp so the support can be put in place. Good luck.

YABU No where near an emergency. The fact that it is distressing to you/family does not warrant emergency medical treatment. A huge majority of the population have a family member with dementia and it's an awful disease. But it's still not a medical emergency.

I’m not sure others understand the impact dementia has on a family. It’s absolutely heartbreaking.

Really? Most people have.

You could also use the time to find out about things like attendance allowance, carers allowance (gathering proof of pensions etc). Find out about Day Centres in your area. My mum, mentioned earlier, had to wait for four months for a space to become available on a waiting list for our day centre so don't expect to just ring and book a place. You could start by chatting to them now.

Have a word with your DP's grandfather. What sort of help does he need? There are places like Wiltshire Farm Food who will deliver frozen food (some love them, like my mum did. Some don't like the food at all but you can test it out without a contract of any sort). Or would it help to get ready meals in, could the family provide casseroles etc., or does his GF like to cook? Does he need help with helping her wash? He doesn't need a diagnosis for that - just a social worker doing a care assessment. That can be amended if and when a diagnosis comes through. All that sort of care is paid for by the user - none of it is free whether you need it for dementia or just for old age/limited movement.

Check if the pair of them are getting every benefit they should. Could they claim pension credit - that alone opens up all sorts of other benefits.

There's a lot of financial and practical things that can be started now so that, when a diagnosis is made, things are a little smoother. All these things take time so just starting that conversation now moves you a bit further towards a more settled period.

You also need to have honest talks to each other about how much you can help between you. We used to do our mum's shopping (she did the list - she had dementia, she wasn't stupid), we got a cleaner for her as her house hygiene slipped a bit, we did her washing with her when we visited. We helped her do her ironing - it's important that the person with dementia doesn't just sit there all day. It took my mum the same amount of time to change the pillowcase as it did for me to strip and remake the whole bed but it's her bed so she helped. You need to be aware that you could be doing this for years so don't make promises that can't be kept. What about holidays? Who will take up the slack if you and DP are on holiday and usually do the shopping? Can you get a delivery so DP GF doesn't have to drag around the shops with an increasingly more confused GM? Can someone sit with her whilst he gets to his golf club or out for a drink with his friends or a coffee morning (whatever his 'release' is) because he will need a break.

There is not a raft of care available out there OP. You need to be aware of that. A diagnosis will help you access what there is but the most they could offer my mum was 4 x 15 minute visits a day. That's not a lot. You and the family will have to take up the slack and will have to pay if domestic help is needed and you can't provide that for example. But you don't have to wait for those things. You can put them in place now in most cases - bar the things that social services can help with.

@Glitter99x may I suggest that you join the online Talking Point forum. I did this when my FIL was diagnosed and the people there are so knowledgeable and understanding. Google Talking Point Dementia and you will find it, it's part of the Alzheimers Society pages.

As others have already mentioned it's not an emergency, dementia diagnosis takes a while. My Mom's referral to the memory team was made on 18th January and she got her diagnosis on 26th May (nurse appointment, psychiatrist appointment, CT scan and final psychiatrist appointment). Prior to the referral she'd been back and forth to the GP for tests to rule out infections. She's on medication but it's only effective in 50% of patients with mild to moderate effects.

The best thing to do is to get support in place to help your grandparents. I contacted social services soon after Mom's first GP appointment and she had a home assessment. I knew she wasn't eligible for social care but they helped to explain the options and who to contact. Mom lives on her own and I live too far away to pop in every day. We've ended up employing carers to go in every day to help her. Mom's much happier and I've seen a huge improvement in her overall mental and physical health.

The dementia diagnosis is only a small part of ensuring your family are safe and coping. Don't wait for a diagnosis find out what can be done.

They let it go on a year
But now it’s an emergency

Ok

I’m not sure others understand the impact dementia has on a family. It’s
I don't think this is a fair comment at all. Posters have been very understanding and very specific in the routes to help in the short and long-term (short term paid carers, food delivered, getting family members to pick up slack on helping grandfather. Long term getting benefits eligibility sorted, a formal diagnosis, adult social carers involved and the like).

It's perhaps a family emergency but it's not a medical one that a gp or nurse can help with the same day.

No threat to life, limb or property here.

If there is a danger (e.g. op thinks she isn't compis mentis enough to safely be around an open fire or gas cooker or something) it's still a social care issue, not an emergency doctor one.

YABU thinking the nurse is pathetic.

I think your family is BU leaving your poor Grandad to care for her the past year on his own. Time for the family to step up now.

OP
First thing get an appointment at the doctors for a urine test to see if she has a water infection
When my mother gets a water infection she is like that crazy mad doll Chucky and Freddy Kruger in one
As soon as she take the tablets within hours she is back to her normal mad self 😂
We keep a few of them in her house as we can tell straight away when she has a UTI
if we act on it straight away it’s over in a few hours

Second thing to do tell the doctor with regards to the appointment for the possible UTI that you want to have her assessed for D&A That should get the ball rolling but it’s not a quick thing

My mother has Dementia and Alzheimer’s and my dad is her Carer
Get in touch with Adult Social Services for them and ask for an carer assessment on both GP and a financial assessment as well

Make sure they are getting everything they are entitled to so Attendance Allowance. The forms are long and repetitive but you might be able to get help both my parents get thin each

It is worth either yourself or your DP being at the meeting and arranging for the SW to contact you and copy you both in on anything to do with GP
The social worker has both me and my DH telephone numbers and email address so when they visit my parents they call or email us to let us know what is happening

My mum has just got carers coming in everyday now to give her her tablets and wash and dress her

My father had his own disabilities and would struggle to do this for her

She doesn’t have to pay for this either as she is assessed In her own right and not on what they both have together

She also goes to a day Center 3 times a week so that my dad gets a break

It’s awful illness and it won’t get better only worse so it’s better to put stuff in place now and before you really need to

Jeez the vipers are out tonight.

It's not being a viper to point out that something is not a medical emergency.

Dementia is horrible. Getting appropriate support in place takes time. Getting a diagnosis involved a full assessment period.

Many on this thread are speaking from our experiences. Call it vipers if you like, but a medical emergency and a family tough situation are not the same thing and it doesn't help posters to take the 'yes man' approach to them.

Lots of good advice here on getting the family up to speed on local services, allowances and assistance. Sadly there may not be much but my dad is receiving 3sets of services which gives my dm a break.

Can your family meet and decide on a plan of who can offer what help? Unless there are plenty of funds available for outside help it will, sadly, fall largely on the family to support both grandparents.
Irrespective of the actual diagnosis the care needs are the same.

Also try Age UK for support as they can point to local services and will offer brilliant help with things like fillingbthe the awful Attendance Allowance forms and so on.

Dementia is truly a marathon not a sprint and railing at the GP services won’t help. Of course you are sad and frustrated but save it up and channel it into some of the suggestions made here.

Few people have no experience of dementia unfortunately.

I appreciate you are upset that you will not be seen as quickly as you hoped. A good thing is that the pharmacist has organised a appointment with the nurse who has taken bloods and checked her blood pressure. There may be things that could contribute to memory loss symptoms that are reversible, I wonder if the pharmacist has access to her medication record and has noticed that she is over due a review on certain medications that she regularly takes or that not taking certain medications correctly or at all might cause an issue ?

From what you have described though, it does sound as though the most likely reason is a form of dementia. I would seriously consider speaking to adult social services about an assessment so you know where you stand going forward

Sorry but it's not really urgent in GP land and definitely not an emergency.
And to be honest I'm not sure what that pharmacist was trying to achieve with a practice nurse appointment, a waste of time for all involved.

Grandad not coping is something to contact social services about not the GP. If you think the GP appointment isn't coming quick enough just wait until you hit the 3 month waiting lists for assessment from the LA when he feels like it's a crisis.

Speak to the GP receptionist again and ask if a referral to the memory clinic can be made without the GP seeing her.

@LolaSmiles I have plenty of experience unfortunately of dementia. And have experience of it not being an "emergency" funnily enough it can soon turn into one when your Nan sets the house on fire after repeatedly being told "she's fine" then all of a sudden oh yes it's fully entrenched dementia and she shouldn't be living on her own.

JazzyGG
Yes, it can turn into one but as many of us said when it becomes an emergency then an emergency response is required.

You're outlining a situation of someone living alone. The situation in the OP isn't someone living alone. They live with someone and there's family around.

Just because something is difficult doesn't make it an emergency. Just because something could become an emergency later doesn't make it an emergency now.

E.g. Catching myself whilst doing DIY isn't an emergency, but it could become an emergency if it got infected or I got sepsis. Demanding an emergency response for the first situation and ridiculing medical staff who wouldn't advocate me calling an ambulance would be inappropriate.

Lola you are full of excellent advice here.

For us it is an emergency

I dont doubt that but in the great scheme of things for a busy GP its NOT an emergency

As pp have mentioned if you've been aware of this for a year why have the wheels not been put in motion to have help. Why after all this time is it suddenly an emergency

OP, I understand that you are worried about your partners grandmother a d the impact on his grandfather. But YABU.

This has been going on for a while from what you’ve said. It’s not life threatening. So not an emergency or urgent appointment, i’m Afraid. Of course, in an ideal world the wait for a routine appointment with your GP would not be three weeks. But, unfortunately, with primary care in the state it is in thus is where we are.

I would also say that you need to moderate your expectations of what can be done. You say the nurse was pathetic because she didn’t know why you were there. Totally unreasonable- you have no idea what the pharmacist told the receptionist, nor what was put in by the receptionist. Even when she does see the GP there is no “ quick fix”- they may well agree to refer on to psychiatry (old age) for formal diagnosis, as well as sound some basic checks, e.g. bloods to rule out any underlying/exacerbating causes. The GP or the psychiatry team may well also organise a scan of her head. Only after that would medication be considered- and the medications for dementia aren’t suitable for everyone anyway. Sometimes the psychiatrist may suggest medication for other things- agitation or sometimes co-existent low mood for example. But this will only happen if your partners grandmother consents to referral/investigations/medications- and it sounds like she may not- unless she is deemed to lack capacity.

The thing that would give your partners grandfather the most support if he is struggling is to speak to “first contact” in the social work department (or whatever your local equivalent is called). They can organise an assessment of what care needs both grandmother and grandfather, and put in place anything they are entitled to. Again, both your partner’s grandmother and grandfather would have to agree to this.

As pp have mentioned if you've been aware of this for a year why have the wheels not been put in motion to have help. Why after all this time is it suddenly an emergency
This is the crux of it.
If everyone has been involved and is aware of this situation for a year then that's 12 months to have made contact with social care, relevant agencies, look into the assessment process for the area, rally the family round, check what the grandfather needs in terms of support.
It can't be suddenly an emergency when a nurse (who isn't in a position to do anything) doesn't do much about potential dementia and a receptionist (who doesn't decide the rules) can't book an urgent appointment with a GP (who can't do anything practical about dementia in the time frame the OP wants).

There's a long journey ahead and it will be tough on everyone, but the process starts with the family and going for assessments through the proper route, not bitching about a nurse for not jumping.

@JazzyGG what happened with your Nan sounds awful and we had my DM (a smoker) doing similar things, but that doesn't make it a medical emergency. It is however a social care emergency. Once social workers are involved the OP may find medical services more responsive. There's good advice here on how to get going with that.