Letter to GP about mother?

[LozzaChops101]

Hello everyone - just after some advice about sending a letter to my mother's GP. This might be a bit garbled as my brain is completely fried at the moment, apologies.

My mother (74 now) tried to bring up cognitive impairment to her GP when I accompanied her to an appointment after she had a heart attack in early 2018. She thought she was becoming "forgetful" due to her heart attack, but I had been seeing signs for several years. Her GP was extremely dismissive, saying if she knew where she was and hadn't left the gas on then there was nothing to worry about. There was definitely something to worry about then, and it's obviously got worse since. I need to somehow get him to take it seriously as I'm now struggling to cope with her on my own. Another problem I have is that my mother is (has always been) quite difficult with me, and this is only getting worse as she gets older - she gets furious with me, then stops speaking to me for weeks if she feels slighted, which includes any suspicion that I might have noticed that she's done something a bit batty. I don't know how she remembers that she isn't speaking to me when she forgets everything else(!) but I really would like her not to know that I've been in touch with her GP about her.

We've got to the stage now where her friends are bringing it up to me, and each other. She can't remember any appointments, or that she's meeting friends, she struggles to follow conversations, and she completely messes up her (vast array of) medication; forgetting that she's already taken it, or forgetting to take it at all. We have the same conversation literally dozens of times a day, each time can be within a minute or two, and she won't remember. She can't remember very recent events, eg. last night I helped her fill in an online form for an imminent asthma assessment, the second she pressed "submit" she said "Oh, I think have to do a form about my asthma somewhere, but I don't know what that is." She is also now becoming very belligerent with her friends for little/no reason and then can't remember that she's done it. She's cut off completely two friends that she's known for over 60 years without explanation to them.

Her own mother developed vascular dementia in her late 50s, but this feels different, and if a stranger spent a few minutes talking to her they might not notice. She's also physcially quite active, she can garden all day, has pilates weekly (that she almost always forgets to attend now) and volunteers to go leafletting (then obviously can't remember where she's been) etc, so she doesn't fit the average image of an old lady with dementia to outsiders.

TLDR!

A) Can I write to mother's GP re. concerns about dementia/cognitive impairment?

B) If not GP, who, if anyone?

C) What should I include if I do?!

I think this is probably a garbled mess, apologies.

Thanks for reading! Yours in mild desperation, etc.

The Alzheimers Society have a helpline: 150 3456 0333 150 3456

I am sure they will be familiar with this sort of situation and able to advise.

I know they would call her in as she would tell me, the GP wouldn't tell me anything. Eventually I suggested to mum that it might be a good idea to let her surgery know they could talk to either my sister or me, as she sometimes asked for us to arrange a prescription or an appointment. I don't know if she realised it meant we could actually have a conversation with her GP about ongoing concerns or changes in medication. It certainly was a help for us to support her, as we knew what was going on.
We currently have the same situation with my brother, the surgery are brilliant, and it means we are all on the same page.

I feel for you @Pinkpro It does seem that we are on our own due to the reasons that @letsgoskiing explained. Until someone has a dementia diagnosis, they are deemed to have full mental capacity, and if they won't allow us to seek it on their behalf they remain undiagnosed. And so they continue to make their dangerous choices. It put enormous amounts of pressure on us, doesn't it? Every time my mother has been to hospital or her GP they ( I suppose quite rightly) make a point of talking to her not me. I try to tactfully say something but it just gets brushed off.

It's actually unreal. For me, what I am seeing, it's not so much dangerous choices from my mother but maybe at some point it may lead into that. I am seeing a lot of odd stuff and I think at some point or another it will lead into something much more.

Like last year I observed her wiping her armpits with a tea towel - kitchen towel.
Another time I found that she wrapped the TV up in blankets to keep the sun of the TV. When I came home at night time the kitchen smelled of a warm electronic shop (possible fire hazard?).

Today I discovered she filled the bath with shoes and soaked shoes.

The cat likes to get in sometimes and sometimes he will take a seat on the couch and her reactions are too intense and involves infumicating the place and doing more and more laundry. She's washing stuff every second day that doesn't need to be done.

You said it, it's like watching a slow car crash.

No.

Make an appointment.

GO WITH HER

OWN YOUR CONCERNS

TELL THE GP IN FRONT OF HER WHAT YOU ARE WORRIED ABOUT

What good is this. They will only just advise you to write to the GP and explain that you don't have any permission to write to the GP not do they have any knowledge of you doing it.

There's a GP here who's explaining to us it's an impossible situation.

So if she said there were no issues, what did you expect the GP to do? Sometimes, if the person retains capacity and refuses treatment, there is nothing we can do until the car crash happens. it's very sad.

Exactly.

Some charities are hugely helpful.

Some.......aren't.

I would approach social services. They were fab with my aunt, came out, assessed her, and made a plan for her care needs. They were the ones who organised carers to come out, recommended cleaners, helped with things like attendance allowance.

i don’t think the diagnosis itself is so relevant, it’s whether they’re capable of independence.

one thing that really rung true is when aunt’s social worker said to get the help in as early as possible. Because as they progress they can resist, so if they get to know carers and establish a routine it is easier to transition when they start to need help with showering and personal care. Aunt wouldn’t accept help initially but we stuck with it, saying that SS had got her a “bit of help” with cleaning, shopping etc. the lovely carers did initially make tea, chat, clean, then after a couple of months progressed to helping her in the shower and more personal care. Obviously over time the visits increased from twice a week to daily.

a GP can’t really help with any of that, and whether you are coping.

I think it's very hard to explain - personally I am the child of a woman who is in awe of 'authority'. I was in therapy for some years as a result of how my mother treated me, and there are still times when I feel like that scared small child. There was a hope that if I could get her in front of a GP, they, by dint of their training, would know what questions to ask. The letter from me ( I've not done this so it's hypothetical) I hoped would give the GP a 'heads up' if you will, regarding what was going on with her. If a GP suggested memory clinic I've no doubt she would go. I'm wondering if this is the situation that @LozzaChops101 and @Pinkpro are also in.
My mother had that brief memory assessment in hospital, which as she says, she 'passed with flying colours', but it goes nowhere near some of the stuff she's been doing.

I don’t know @letsgoskiing . None of us is experienced in this when we start out. I think I thought there would be some help out there but I was wrong.

What would you advise your best friend to do in these circumstances?

So to turn that around, if I’m offered statins, there’s a 1 in 200 chance that I’m the person who has had a vascular event prevented?

ah @letsgoskiing - I see you’ve answered that above. Fair enough. Not practical in my circumstances but I can see why you say that. Sorry - still raw.

The problem with that is I’m her only relative and the only person she trusts. So if she rejects the GP’s help, she will also reject me and she’s then alone in the world.

The alternative is no help. These things are tough but in the end she won't reject you if there's no one else.

I'm viewing this as discussion @letsgoskiing, not trying to have a go, particularly as as you've already explained how your hands are tied.
But this is the problem as I see it - somebody presumably retains capacity all the time they insist that there is nothing wrong, even though there very clearly a lot wrong.
It's a conundrum all right ( I've come to terms with my mother and the slow car crash effect, partly because of the therapy and partly because I have siblings and we support each other, but it makes trying to keep her safe extremely frustrating.

Yes. And so on a population basis, giving them to millions, we stop a lot of events. But as an individual, the chances of you benefiting are small

If you don't have POA for your mum, you need to organise it now - many medics won't discuss her medical matters with you otherwise.

Yes.

If you have capacity, you have the right to make your own decisions.

Even if everyone else thinks that they are bad decisions.

It's very frustrating to watch - I've seen patients with eminently treatable cancers refuse all treatment, then seen the fall-out when they change their mind and it's too late, the cancer is everywhere.

I've waited for the car crash with relatives, and cleared up the mess afterwards.

But what's the alternative? Legal powers to remove decision making ability from competent adults? That's a very slippery slope.

Having the permission to just watch the car crash is helpful, actually. @letsgoskiing

Yes I get that.

good luck.

This is exactly what I am going through. My mother was very dominant when I was younger. She did mellow. But now it's like she is on steroids. I would love to sit her down and talk to her and tell her that I am genuinely concerned and ask her to attend to the GP but she will never tolerate that.

I am on a dementia support group. I know I don't have that diagnosis but I strongly suspect it. Even people who have diagnosis find it hard and it's suggested to give notes to the doctor because many people are unable to say anything information front of their person.

Is the 200-300 people to stop one event per year or a lifetime risk?

Per year

The first time I said anything at the GP office to the GP, I was at my own appointment and the GP asked about my mom. I said it in conversation that there's some things that are not quite right. My GP said that they will never go to the GP and say this and talk to them about this kind of stuff and someone has to do it for them. She was invited for a wellness check and she did attend. But since then I am coming up to a brick wall.

I mentioned your response in a dementia group that I am in letsgoskiing. I never gave your name but I said that there's a GP in an online discussion saying that they hate letters from patients families because it creates an impossible situation for them and in relation to dementia concerns they would much prefer someone to attend to a GP appointment and sit in on the appointment and tell the GP in front of the person.

There are people utterly utterly utterly shocked at this. In that dementia is hard enough and it's so hard to even get them to the doctor and now you expect people to sit in front of their parent and explain everything and all your concerns and worries and observations when passing a letter to the receptionist to give to the doctor is often more than enough for some doctors. It's an American based group but still.

I find the idea of sitting in front of a doctor with my mother and listing out all my observations and worries and concerns in front of my mother sickening. One of my observations is that she is taking my plus size underwear and she is half the size of me and it's appearing in her laundry as if they are her own. Other observations is that she has plus size period swimwear from Primark in her wardrobe. She is a size 10 and she doesn't swim and her periods are over. Imagine saying all this in front of her?

The very idea of it is enough to fill me with dread and sick and fear and her response will be one of rage where I might as well just go and buy a rope. This isn't a joke or an over exaggerating. I am trying to do the best I can but I feel like my hands are tied. I just don't know what to do. The majority of my observations are behavioural and mood based. Not memory loss. I think if there was memory loss it would be easier.