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.

Hi Lozza, I could have been reading about my own DM reading your post! The mixing up of medication, confusion over form filling, the conversations repeating constantly, the belligerence etc and yet to anyone outside the family she could be so convincing that all was well with her. Looking back, I realised that she was very afraid of what was happening to her and she hid it for as long as she could.
We contacted the GP who was supportive and she invited her in for a check up…she was already well known at the surgery, calling in or phoning regularly. She had extreme health anxiety. Anyway, the GP tested her and basically diagnosed dementia…she couldn’t answer any of the questions and 10 minutes later couldn’t remember having been to the GP.
I would suggest contacting her GP again or a different one in the practice if there is someone you feel would be more supportive. They will invite your DM in and not tell her that you initiated it. We also contacted Social services for an assessment. Tell them exactly what you have written in your post with your examples. We were able to then get Attendance Allowance, a gardener and later on a carer for personal care when she deteriorated.
Hopefully others will be along soon with more advice as there are so many of us treading or have trodden that path.
Sending you best wishes and remember to have a plan for looking after yourself.

Yes absolutely
Write all your concerns to gp
Ask gp to ask Pharmacy to supplyvtablets in daily dispenser pack roll

Dosette boxesIf the person you care for has a complicated medicine regime with different pills taken at different times of the day, a pharmacist may decide to provide them in dosette boxes.
These are plastic boxes with small compartments that clearly show which pills need to be taken at what time of day.
Dosette boxes are not always available for free on the NHS and they're not suitable for every type of medicine. Ask your pharmacist for more information about dosette boxes if you think they could be helpful

https://www.nhs.uk/conditions/social-care-and-support-guide/practical-tips-if-you-care-for-someone/medicines-tips-for-carers/

Another one with a v similar situation with a mother at a very similar age. Possibly a fraction less advanced in confusion, but v similar. I wrote to the GP to share my concerns, emphasising confidentiality. It 'worked' in the sense that the GP did a memory test at her next appointment and referred DM to a memory clinic. But that, I'm afraid, is where the positive news ends. Referral took 9 months until an appointment came through. Memory tests done, diagnosis of MCI rather than dementia. Referral to a 'healthy minds' service, which she never heard another word about. No scans, no medication, no GP follow up. Another nine months on, she's got progressively worse, and I strongly suspect would now meet the dementia threshold if retested (to be honest I think she should at least have had further tests last time). I'm probably about to write to the GP again, to lay out my concerns again.

Yes definitely email the GP and tell them that she's not taking medication, is confused and anxious and you think it would be in everyone's interest if they could find out why she is confused and anxious as you want to try and keep them at home. I'd also ask that she be allocated a SW.

I'd also request a Care Needs Assessment for her and make sure you're there when it's carried out. She won't be able to articulate what her needs are and won't remember the daily havoc that her confirm is causing.

Think carefully about what care you're willing to give before the assessment though. Remember if you're offering care, it's 7 days a week without a holiday abc can go on for years.

You might also want to contact the local Carer's Hub for some practical advice on what's available in your area and support.

I'd also apply for Attendance Allowance. She doesn't need a diagnosis as it's based on need. If you phone first the application forms, and the claim is successful, the payments will be backdated to the day you called.

I'd also recommend the books The Twilight Shepherd for practical advice and I haven't read this one but I've seen it recommended a lot and will read it next. It's Contented Dementia.

Wishing you the very best. Sounds like you have a very difficult time ahead

Do you have a health LPA? If not, they may not be able to deal with you. I had concerns about my own mother and her GP practice refused to speak to me because she hadn’t given me permission so I was unable to voice my concerns. The problem she had that went untreated had a very detrimental effect on her for the rest of her life. It was utterly frustrating and upset me a lot but there was literally nothing I could do. Not all GPs are as awful as my mother’s was but just be prepared in case.

I would definitely contact GP again (any form will be fine)!as she needs to be referred to mental health services for a full dementia assessment. I would also contact any organisations you have in your area such as dementia forward as they are pretty good at speeding up the diagnosis process and have lots of advice!

Do you have a health LPA

If you haven't got a Health POA abc a Finance POA I'd see if she agrees and apply now, before she gets a diagnosis. It will be so much easier for you if you have these in place.

You can apply heree*.

Dossette boxes don't always work if there is dementia. Mum forgets what day/time of day it is and still gets in a mess. She now has a pivotell on loan from social services but I have to go round and load it up which is no good if you live miles away and they are on 4 x a day meds which means it needs loading every week.

That's true a Doseette box is great if there's someone there to give the medication or stop them taking everything all at once. Not so good if the person with Dementia has access to it.

They won't tell you anything about her health , but they will read your concerns.
We've done it.

They won't tell you anything about her health , but they will read your concerns.
We've done it

I've done it to a couple of times. You have to make it really clear that you don't want to know anything, you are simply informing them that their patient may need attention and why.

Yes, you can write - when I was a frequent visitor to the Alz. Soc Carers’ forum it was often recommended. Of course they won’t discuss anything about the person with you, but you can make them aware, so when they do come in, checks can be made.

Definitely contact GP . I'm so sorry GP was so dismissive in 2018 that's terrible as there could be several things that could be wrong/ could help from a medical point of view dementia obviously one of them but thyroid issues also. There is support that and treatment ppl can have early in there dementia journey which really helps to prepare for future changes if people are happy to talk about it.

Your mum deserves a full cognitive assessment not just a GP screen, this should include a head scan to help dementia diagnosis. When you contact GP again firmly request a referral to memory clinic ( or dementia diagnosis service) these should operate in all areas ok uk. Most don't offer that much aftercare but do help with dementia meds and sign posting to support ( which can be mixed) but so much easier with a proper dementia diagnosis.

I did the letter to the GP about mil.

It did work, eventually. She was diagnosed at home as she refused to go to any medical appointments.

I am going through a similar situation. My mother is 3 years younger than your mother.

Over the past few years I noticed behavioural stuff from her and mood stuff. There's things not right with her. Every day is different with her. My observations began two and half years ago but when they began I was able to go back further and there were issues for a few years. It's only within the past two years I am piecing so much together.

It's all behavioural and mood based with her. I have been to her GP a few times but they keep asking for memory loss. It's odd stuff that's happening.

It's not so much a memory loss. Her GP keeps asking me about memory loss. I know I don't have a diagnosis for her but I am leaning towards dementia. Exploring online and there's different types of dementia and depending on what kind, it affects the brain differently. Memory loss is likely the most common symptom but not all the time. In the later stages of dementia the different kinds can all mimick each other. It appears to me as of doctors are looking for a textbook style of forgetfulness before they might help me and my mother.

I'm coming to a hard place now with my mother. It's all behavioural. She wasn't feeling well last week and she kept refusing to go to the GP. We have plumbing problems that she's ignoring. There are so many issues with her. It's unreal.

I am thinking about writing a document on my laptop with a list of my observations. Hopefully writing to the GP.

I didn't even write a letter. With each of my parents I called the GP and said that I thought they had dementia and could they give them a memory test.

With my mum in 2018 the GP invited her to a well woman appointment which was a cover for the memory portion of the appointment which she did poorly on so was referred to the memory clinic.

In 2021 I asked for my dad to be similarly assessed. It was Covid times so the GP did the test on the phone. I was with dad and he tried to cheat. Plus mum who had dementia whispered some of the answers to him. Again he was referred to the memory clinic.

Neither had a head scan at any point but both were given Alzheimer's drugs.

My mum cheated a phone memory test. We got on to the GP as we didn't believe the results. GP repeated it with DB1 there and he saw what she was doing. At the beginning they gave her a phrase to remember and she wrote it down. When they asked what time of day it was she answered exactly as she looked at the clocks, day and date from the newspaper. He stopped the test and spoke to the GP. He took the prompts away and they started again. This time she thought it was spring 2003 instead of November 2020 and had no idea what time of day it was. As the GP knew she had checked both those a few minutes ago they didn't go any further with the test and referred her to the memory clinic.

I didn't even write a letter. With each of my parents I called the GP and said that I thought they had dementia and could they give them a memory test.

That's a perfectly acceptable way of doing it. I just prefer to enrol as you can take time to make sure you include all of your points, emphasis that you don't want them to pass on confidential information and you also have a trail of the concerns you raised and when.

I contacted a relative's GP some time ago and they declined to help. The senior partner's view was that everyone is assumed to have full capacity unless proven otherwise and they are not in the business of co-ercing people to come in to the surgery when they clearly don't want to.

Relative continues to decline, but as he won't go to the GP off his own bat, he remains undiagnosed, unsupported and a potential risk to himself and others.

@NorthernDancer that's laughably shit. Hope the relative has another go and then makes a complaint (and I'm the most pro-GP person on the planet).

I wrote gp about relative. Triggered specialist nurse visit and whole host of other assessments .
Write again with a list of examples

We had the same. Mother, carers and GP/hospital HCPs all say she's fine. She can hold it together for the short times she's with them. As her family, we are noticing changes daily and it's so frustrating. She's making some very questionable decisions at the moment, and there's nothing we can do about it as she has mental capacity. She is extremely vulnerable. Siblings and I spend a lot of time doing damage limitation (and a great deal of worrying)

Do you or your relative have this in writing from your GP? Surely this could be considered negligent. Are they waiting for an accident to happen. I hope you have it in writing because if anything was to happen, you could go down the compensation route at some point.

Compensation/negligent route