Not sure where I go next- frustrated!

[saraht40]

My mum has had memory issues now for a number of years. My father, who has since died, told me about them over 4 years ago and they weren't new then, but he didn't want to worry her so kept quiet and managed her life for her. Her memory is getting worse now and she often feels confused and has notes written all over the place and uses her calendar to record everything. She finds it hard to retain new information, never knows what day, month or year it is and is starting to forget things from her past.
She had a brain scan nearly 2 years ago which showed deterioration, but not enough to warrant a diagnosis. Last summer she was feeling bothered about confusion (although every time she is confused she thinks it's the first time she has felt that way). I was finally able to get her to a GP and she, of course, had a good day and did quite well on the memory test. She failed on the questions that the GP asked me, though, and the GP said it was probably dementia, but would arrange a brain scan and to come back in to discuss the results. She even talked about medication.
The scan was October and we never heard anything again. I've been having trouble getting any information as I don't have authority and she can't phone as she gets confused and doesn't even remember having a brain scan. I finally managed to get a reply via Ask My Gp to say the results are back and nothing to worry about, but they'll call her to discuss the results.
I just don't know where to go from here, as it's obvious to those who know her and see her that there is a problem, but she won't get access to any support without a diagnosis and I don't know how or when I'm supposed to push for one again. I thought early diagnosis was supposed to be really important. Sorry for the long message! Any help appreciated. Thanks

 

[Collywobbles]

While the GP can’t speak to you about your Mum, you can always email them and tell them what you’ve told us? Maybe emphasise the fact that if they speak to your Mum, she wouldn’t remember the call, retain any information, or be able to act on anything they have suggested. Ask what their protocol is for dealing with that situation - it won’t be the first time they’ve encountered it.

My Mum’s GP waived her right to privacy on the grounds that she could no longer manage her own medication after she had ended up in hospital as a result of not taking it as directed. The GP accepted this as proof that she could no longer make decisions in her own best interests, and will talk to me about matters involving Mum’s wellbeing and safety.

 

[SAP]

Hi @saraht40 , it sounds very frustrating for you. I think it might be an idea to get a GP appointment for her that you attend as well to ask about the results. If there is a likelihood of some kind of dementia then she will need a referral to the memory clinic and I’m afraid that might be quite a waiting list.
Early diagnosis is good in terms of some medication to slow the progress such as donepezil but this is only for certain types of dementia and does not always agree with everyone taking it. It is useful for family and carers to start getting things in place especially Lasting Power of Attorney. If your mum is still quite independent but getting muddled, I doubt any services would get involved, this maybe for further down the line. If you can take on the stuff that causes the most confusion such as paying bills and banking then that may ease the situation.

 

[saraht40]

Hi @saraht40 , it sounds very frustrating for you. I think it might be an idea to get a GP appointment for her that you attend as well to ask about the results. If there is a likelihood of some kind of dementia then she will need a referral to the memory clinic and I’m afraid that might be quite a waiting list.
Early diagnosis is good in terms of some medication to slow the progress such as donepezil but this is only for certain types of dementia and does not always agree with everyone taking it. It is useful for family and carers to start getting things in place especially Lasting Power of Attorney. If your mum is still quite independent but getting muddled, I doubt any services would get involved, this maybe for further down the line. If you can take on the stuff that causes the most confusion such as paying bills and banking then that may ease the situation.

Thanks. That was the original plan when we saw the GP, but I've been given the brush off and I don't have authority to make appointments. I already manage all her finances and have set the ball in motion for a Health LPA, but that won't come into effect yet. She just about manages in the house on her own, but if anything happens that uses any of her brain power, she is all over the place. She cooks, but that's just microwaving a ready meal and boiling some peas. I've started finding strange things in the fridge when I go round and the other day she thought the microwave was the fridge. She constantly asks the same questions and has to repeatedly check her calendar multiple times in a day, sometimes immediately afterwards or she doesn't remember what she's doing.

 

[SAP]

It might be time consuming but I would walker her into the dr surgery and make an appointment with her there.

 

[saraht40]

It might be time consuming but I would walker her into the dr surgery and make an appointment with her there.

Thanks. It is an option but I don’t think she would see the need. She’s a bit more aware of her memory problems and puts it down to old age, but each time she’s feeling confused she thinks it’s just that day and she was fine the day before. We’ve been through the cognitive assessment and brain scans so not sure what else they’d do now

 

[LouiseW]

Hi
Getting established as a contact / carer with the NHS is very hit and miss, do not assume it will get better when that Health and Welfare LPA is granted - it will still be hit and miss.

Go down the the surgary and ask if you can register as your mums carer you can then go on to ask what they need from you and your mum in the way of permission for them to talk about her medical issues with you - i've no idea what they will say as it seems to vary from surgary to surgary but it may help you out.

Hospitals will totally ignore you whether you have POA ir not so you need to factor this in.
You will save yourself ALOT of grief if you update her phone contact details with your phone number - I cannot tell you how much devastation and chaos was caused by the GP phoning Dad and then him forgetting one minute later - or even worse phoning me to tell me that he had recieved an inportant call but he didnt know who from or what it was about.

Prepare yourself for only ever having a fraction of the info you need because calls will be forgotten, post from the NHS will be stuffed into the freezer or the laundry basket and most NHS staff will totally ignore your POA or requests to contact you rather than your mum.
The Memory Clinic was a little better I had no problem booking appointments for Dad on the phone - they did however send all post to him and insist on phoneing him with any appointment changes which he forgot straight away.

Good luck

 

[saraht40]

Hi
Getting established as a contact / carer with the NHS is very hit and miss, do not assume it will get better when that Health and Welfare LPA is granted - it will still be hit and miss.

Go down the the surgary and ask if you can register as your mums carer you can then go on to ask what they need from you and your mum in the way of permission for them to talk about her medical issues with you - i've no idea what they will say as it seems to vary from surgary to surgary but it may help you out.

Hospitals will totally ignore you whether you have POA ir not so you need to factor this in.
You will save yourself ALOT of grief if you update her phone contact details with your phone number - I cannot tell you how much devastation and chaos was caused by the GP phoning Dad and then him forgetting one minute later - or even worse phoning me to tell me that he had recieved an inportant call but he didnt know who from or what it was about.

Prepare yourself for only ever having a fraction of the info you need because calls will be forgotten, post from the NHS will be stuffed into the freezer or the laundry basket and most NHS staff will totally ignore your POA or requests to contact you rather than your mum.
The Memory Clinic was a little better I had no problem booking appointments for Dad on the phone - they did however send all post to him and insist on phoneing him with any appointment changes which he forgot straight away.

Good luck

Thanks. I've completed a form with the surgery to allow them to discuss things with me and make appointments, but they said they needed to phone her first before I can use it. As far as I can tell they haven't phoned her. I'm lucky if she emails me as soon as something happens; if she doesn't she will forget. It's so tricky when you don't have all the information and if you ask and they don't know the answer, they blame you as they told you and you should remember (even when they didn't!).

Thanks for the tip about the phone number - I'll definitely try and do that as much as possible. Same with email addresses. it's helpful to know that it is a common problem and I'll try and persevere.

I guess I need to know at what point I go back to the doctor again with her when they have already done the tests that they will do and don't seem to feel the need to pursue it?

 

[LouiseW]

If it were me I would start with the scan - contact the department that did it and ask when the results went to the GP and ask what they said. You may hit a brick wall but you may not so its worth a go.

As the NHS is not joined up you will find that links between departments and/or GPs are really dodgy and info does not get passed around in a reliable way.

You can go Private to get a dementia asessment and diagnosis, this would remove the unacceptable timeframes and lack of information.
I used private healthcare for Dad when the NHS were missing in action because dementia does not run on NHS waiting list time.

I was ALWAYS kept in the loop and treated as a vital part of Dads care and wellbeing, something the NHS to this day don't do.

It is well known that dementia is worse for the family / carer than for the person who has it, one of the manifestations of this is that the combination of dementia behavoiurs and the NHS/other agencies ignoring you and dealing with the PWD.

It is really hard to care for your PWD when you never have all the info you need but sadly this is what happens - so do not be hard on yourself when things go wrong because often its because you are missing vital information through no fault of your own.

You are doing an impossible job, you have by sympathy and support.

 

[SAP]

Some GPsurgeries will accept an LPA for either finance or H &W even if it is not in force yet, as a way to ensure you are kept in the loop.

Hospitals will totally ignore you whether you have POA ir not so you need to factor this in.

This wasn’t my experience , I was named as NOK and I have had calls from hospitals and GP surgeries even when I didn’t know mum had been admitted or seen. Like you say , it is very hit and miss.

 

[maggie6445]

I registered LPA for health at the GP surgery when OH stopped talking on the phone and able to order and take meds.
His GP has dealt with me since I registered it but he does see OH and I together in surgery and knew OH was ok with me being there.
It was me that signed for OH sigmoidoscopy ,as POA ,when he had his procedure at the hospital.
Maybe easier as a partner rather than parent?

 

[Spottydog]

I am glad you have found this forum as it will be immensely helpful to you throughout your mums journey. I wish I had found it sooner. As you are finding nothing is consistent, efficient or even straightforward. Dementia is a constant learning curve for the carer and you have to be a squeaky wheel to get anywhere. My dad got a diagnosis based on symptoms I relayed to the GP and then we were left to just get on with it. From what you have said your mum is managing 'fairly well' in what she can do day to day so it is a case of discussing with the GP what the 'next steps' are from a treatment perspective as well as what you and your mum think the 'next steps' should be. What professional support you can get depends on how much money she has/is willing to pay for help. If she already has a good support network then lean on that, if not think of getting some 'befriender' support in to keep her on an even keel as long as possible. If she gets an official diagnosis she can save on council tax and apply for AA. Check out the local carer networks to see what is on offer and also if the surgery has a social prescriber they might be able to advise. In terms of the NHS it's a battleground... I have the MYCARE app (which is the app my dad's hospital uses) signing him up with my email so I get his letters and appointments, plus I also got a 'correspondence' address added so paper stuff should come to me. Some departments still ignore this and contact him directly. Getting your mum listed as vulnerable with utility companies etc. Is also something I would advise doing. Also, if she isn't, sign your mum up to MPS and TPS to reduce calls and junk mail. Finally and most importantly, make sure you look after yourself.

 

[saraht40]

If it were me I would start with the scan - contact the department that did it and ask when the results went to the GP and ask what they said. You may hit a brick wall but you may not so its worth a go.

As the NHS is not joined up you will find that links between departments and/or GPs are really dodgy and info does not get passed around in a reliable way.

You can go Private to get a dementia asessment and diagnosis, this would remove the unacceptable timeframes and lack of information.
I used private healthcare for Dad when the NHS were missing in action because dementia does not run on NHS waiting list time.

I was ALWAYS kept in the loop and treated as a vital part of Dads care and wellbeing, something the NHS to this day don't do.

It is well known that dementia is worse for the family / carer than for the person who has it, one of the manifestations of this is that the combination of dementia behavoiurs and the NHS/other agencies ignoring you and dealing with the PWD.

It is really hard to care for your PWD when you never have all the info you need but sadly this is what happens - so do not be hard on yourself when things go wrong because often its because you are missing vital information through no fault of your own.

You are doing an impossible job, you have by sympathy and support.

Thanks, that's really helpful

 

[saraht40]

I am glad you have found this forum as it will be immensely helpful to you throughout your mums journey. I wish I had found it sooner. As you are finding nothing is consistent, efficient or even straightforward. Dementia is a constant learning curve for the carer and you have to be a squeaky wheel to get anywhere. My dad got a diagnosis based on symptoms I relayed to the GP and then we were left to just get on with it. From what you have said your mum is managing 'fairly well' in what she can do day to day so it is a case of discussing with the GP what the 'next steps' are from a treatment perspective as well as what you and your mum think the 'next steps' should be. What professional support you can get depends on how much money she has/is willing to pay for help. If she already has a good support network then lean on that, if not think of getting some 'befriender' support in to keep her on an even keel as long as possible. If she gets an official diagnosis she can save on council tax and apply for AA. Check out the local carer networks to see what is on offer and also if the surgery has a social prescriber they might be able to advise. In terms of the NHS it's a battleground... I have the MYCARE app (which is the app my dad's hospital uses) signing him up with my email so I get his letters and appointments, plus I also got a 'correspondence' address added so paper stuff should come to me. Some departments still ignore this and contact him directly. Getting your mum listed as vulnerable with utility companies etc. Is also something I would advise doing. Also, if she isn't, sign your mum up to MPS and TPS to reduce calls and junk mail. Finally and most importantly, make sure you look after yourself.

That's really helpful, thanks. She doesn't know she has dementia and quite often finds she feels confused for the first time! she has been given tablets which are for dementia, but she didn't know why she was taking them. It's interesting what you have said about the support available with a diagnosis, as I feel we have been completely left on our own. She has 4 weeks of tablets, but no follow up and no idea what happens next as they phoned her to discuss her brain scan. They did ask if I was there (although won't speak to me normally about it), but I don't live with her so I wasn't there.