Newbie in need of advice

[loulou64]

Hi all - new to this so please bear with me (already lost my original post so obviously not a clue what I'm doing!).

I'll try to keep this as short as possible! I gave up work 3 years ago to care for my mum as she has osteoperosis and was having bad falls when she was left on her own. In the first year of caring for her I noticed her memory gradually worsening and went to my GP who asked her a few questions then referred her to the memory clinic. A nurse came out to see her and asked her some more questions, such as how old she was, what day it was, the year (mum said 1967) and who was Prime Minister. Mum didn't give one correct answer so she was referred for a brain scan which she had on 5 April 2011. To date I have not had the results of this scan - I have hounded my GP for them and he said he would chase them but stilll nothing - I was eventually told that because the memory clinic had requested the scan, the results would have gone to them. I rang the nurse in question 3 times and she said she'd get back to me - I'm still waiting!

I'm now at the end of my tether because in the 2 years since the scan my mum's memory has deteriorated even more - so much so that I had to take her to the emergency doctor at the weekend because she was so confused she couldn't string 2 words together to tell me what she wanted. I thought she was having a stroke but within a minute she was back to her normal semi-confused self. The doc said it could have been due to a temporary blockage of signals from her brain.

Mum has been getting recurring urinary tract infections which they say can make her confused - she's been on antibiotics for 3 months now and her last 2 urine tests were clear and they tested her urine at the weekend which was also clear so how can this be the reason for her increasing confusion? I just feel as if I'm banging my head against a brick wall all the time with them - the only real support I've had is from social services who have done regular assessments and seen for themselves the deterioration in my mum's health. They hadn't been informed of the scan results either but were told by the memory clinic that they'd closed mum's case, which they couldn't even be bothered to tell me.

I can't leave my mum on her own at all - I'm her sole carer, with her 24/7, and have to do everything for her - she even struggles to remember how to use her knife and fork. I'm so frustrated because I know there is medication that can slow down the memory loss and she could have been on this since the scan in 2011.

Any advice on where I go from here? I took her to another GP in our practice 2 weeks ago as her doctor has now left and he's sent her for a blood test which she's having tomorrow (she also has a history of anemia, but they haven't been monitoring her blood count - last test was in 2011 when she was referred for the scan!). Maybe the answer is to switch doctors??!

(sorry - took a bit longer to explain than promised!)

 

[chris53]

Hello Loulou, a warm welcome to Talking Point, I am somewhat flabbergasted on the total lack of communication and help you have had with the medical profession mum is having bloods done tomorrow so that is a good start, I hope they are testing for folic acid levels as well as vitamin b,as low levels can cause confusion - this is what they done for my mum as she was also having frequent UTI's when you get the results back I would request in a very firm way, that you need the results of this scan AND ask the doctor to chase up the memory clinic as well,also contact PALS (patient advice liaison service) and tell them what has happened, they may fast track mum however, I am so pleased you have had such a positive response from your social services, which most of the time get bad reviews! I hope you get some help for mum soon, please do keep posting, good luck, take care and best wishes-Chris x

 

[loulou64]

Thanks for the welcome and advice Chris - much appreciated. Not heard of PALS but if the bloods come back clear I'll be giving them a call if I still get no further with the doc.
Looking at the form, the blood test's for a full blood count, thyroid function screening and serum urea/elecs - no glucose. I'm hoping it's something as simple as that, tho if it is I'll still be mad because they haven't been monitoring her blood!

I was surprised at Social Services as well - but I think they've only been so supportive due to the fact I was having a really bad time coping one day and rang them in tears, demanded a carer's assessment review and they re-assessed my mum as well! (Perhaps I should do the same with the doctor.....)

 

[chris53]

YES Loulou....tears rather then tantrums do work with doctors, we get to such a hopeless stage, the tears tend to flow
Fingers crossed help happens very soon, and look forward to your next post.
Chris x

 

[Peda]

Hi sorry to hear of your struggle in getting your mum diagnosed, this is a rediculous time to wait, You have to insist on these results it helps when getting a care package set up, good luck I take my hat of to coping on your own Pedro

 

[velocity]

Hi I am also a Newbie

Hi all - new to this so please bear with me (already lost my original post so obviously not a clue what I'm doing!).

I'll try to keep this as short as possible! I gave up work 3 years ago to care for my mum as she has osteoperosis and was having bad falls when she was left on her own. In the first year of caring for her I noticed her memory gradually worsening and went to my GP who asked her a few questions then referred her to the memory clinic. A nurse came out to see her and asked her some more questions, such as how old she was, what day it was, the year (mum said 1967) and who was Prime Minister. Mum didn't give one correct answer so she was referred for a brain scan which she had on 5 April 2011. To date I have not had the results of this scan - I have hounded my GP for them and he said he would chase them but stilll nothing - I was eventually told that because the memory clinic had requested the scan, the results would have gone to them. I rang the nurse in question 3 times and she said she'd get back to me - I'm still waiting!

I'm now at the end of my tether because in the 2 years since the scan my mum's memory has deteriorated even more - so much so that I had to take her to the emergency doctor at the weekend because she was so confused she couldn't string 2 words together to tell me what she wanted. I thought she was having a stroke but within a minute she was back to her normal semi-confused self. The doc said it could have been due to a temporary blockage of signals from her brain.

Mum has been getting recurring urinary tract infections which they say can make her confused - she's been on antibiotics for 3 months now and her last 2 urine tests were clear and they tested her urine at the weekend which was also clear so how can this be the reason for her increasing confusion? I just feel as if I'm banging my head against a brick wall all the time with them - the only real support I've had is from social services who have done regular assessments and seen for themselves the deterioration in my mum's health. They hadn't been informed of the scan results either but were told by the memory clinic that they'd closed mum's case, which they couldn't even be bothered to tell me.

I can't leave my mum on her own at all - I'm her sole carer, with her 24/7, and have to do everything for her - she even struggles to remember how to use her knife and fork. I'm so frustrated because I know there is medication that can slow down the memory loss and she could have been on this since the scan in 2011.

Any advice on where I go from here? I took her to another GP in our practice 2 weeks ago as her doctor has now left and he's sent her for a blood test which she's having tomorrow (she also has a history of anemia, but they haven't been monitoring her blood count - last test was in 2011 when she was referred for the scan!). Maybe the answer is to switch doctors??!

(sorry - took a bit longer to explain than promised!)

I am in a similar situation but my mum doesn't seem as confused as yours, I have been trying to get my mum some help for eight years now, the only advise I have had from my GP is that I cannot help my mother. Mum has refused assessment and the Memory Clinic basically because the GP just hasn't handled the sitation very well and has said to Mum she is ok even though she has carried out a small assessment and has said to me we seem to have a bit of a problem! My Mum has suffered wih severe anxiety and has been suffering terribly. The GP is treating her for anxiety but this is just not doing anything for her. I have involved PALS who where very helpful Try speaking to the Practice Manager go with somebody if you can to explain the situation they might help you also. Wishing you well

 

[zeeeb]

I would go back to the GP, request that he give another referral for another brain scan. go through the process again, unless they can come up with the results from the first one, pretty much immediately, then they should just do the scan again.
Sounds simple enough, doesn't it? I know nothing is that simple, best of luck, hopefully you'll crack them before you crack your head open banging it on the wall.

 

[Just thinking]

Welcome loulou64

Why not ask the Dr. point blank about medication for Mums memory too? I'd also make your feelings known about the length of time she's gone without about the harm a TWO YEAR delay may have done. Good Luck, we're all behind you!

 

[mum23]

Have you got Power of Attorney? If so you can request a copy of your mums hospital records, all hospital records should be kept for 10 years by the hospital, that way you should be able to chase up the scan results. In fact you could probably get your mums records, without having POA, if you just contact the hospital's record department, ask for the form you need and get your mum to sign the form, do not tell them why you want it you do not have to disclose the reason. Truth be told you would be wise to get the records as soon as possible if you are thinking of taking anyone to task over your poor mum's very poor medical care.
You can also do this for your mums GP records, which might be wise!! Did the GP do a Thyroid panel and B12?! Might be worth asking ok.

 

[tre]

Hello LouLou,

I am really sorry to here of the struggle you are having with your mum.

My mum, who died two years ago, had vascular dementia. I too struggled to get the results of the scan and they also closed the case at the memory clinic. When we first attended the clinic at the hospital the consultant was helpful and started mum on medication( Rivastignine) but then they signed us off to the memory clinic and the consultant there was extremely reluctant to keep mum on the medication saying it did not work for vascular dementia although my mum definitely improved on it. He persuaded us to try mum without as the patches were irritating her skin and she went downhill really fast. He also took her off his list, without telling us, so when, seeing this deterioration, we went back to the GP to try to get her back on the medication we were told she needed to be re-referred as only the consultant could prescribe it.

My husband has AD and I have had a constant battle to keep him on his medication ( first Aricept now Ebixa) which again I am sure is beneficial.

A couple of things I have learnt on the way which may help you. Firstly, in our area, they only give you a provisional diagnosis for AD or vascular dementia. I am told this is because the scans only rule stuff out, so the only way you can get a confirmed diagnosis is post mortem. This was not explained to us so we spent some months expecting another letter with a confirmed diagnosis.

With my mum, the scan also went AWOL, but when I enlisted the help of PALS it did turn up and things did start moving. However, if when the scan turns up they decide it is vascular dementia they may still deny your mum any medication.

I have been having a struggle recently regarding my husband's treatment which was all running smoothly but has all been changed owing to the cuts I think. I found the way that has worked for us to get things moving has been a letter of complaint to the Chief Executive of our local NHS trust with a copy to my MP. We were forgotten about for months but now things are getting sorted.

Do not forget that you also need support as a carer. I have found this in my local carers group. If you look at www.carers.org you can put in your postcode and find out what is on offer local to you.

I hope you get some answers for you and your mum but I am sad it is such a fight to get them

love Tre

 

[loulou64]

Hi again all and thanks for your replies and advice (knew I'd come to the right place!)

Sorry to see that mum's not the only one who's been let down by the system, but it helps knowing I'm not alone in this situation. Just feel so let down by the NHS who appear to wash their hands of people my mum's age (83). Feel so isolated being sole carer for mum - lost my friends, separated from husband, and feel like I've been left floundering in the wilderness with my mum drifting further and further away from me each day.

The only ray of sunshine has been the occupational therapist who's done more for mum in the last month than anyone else in 3 years. In 2 weeks she got mum a bathlift, new wheelchair and is arranging for a stairlift to be fitted. Thankfully that will greatly ease the mobility issues. She also recommended I apply for power of attorney which I'm in the process of doing if the doc will sign the forms....???

Took mum for her blood test today so roll on the results. She does have B12 injections every 3 mths for her anemia and I just found out due to the power of the internet that the antibiotics she's been on for the last 3 months can cause anemia and should be prescribed with caution to elderly patients with blood disorders....

 

[Kate01]

It might be an idea to ask for a referral?

When my husband was 57 and we noticed he was having memory problems, he saw the local neurologist who's assistant did 3 x 1hour memory tests, blood test and eventually after a lot of persuasion a brain scan. His assistant recommended to his senior that something wasnt quite adding up, but we were then sent a letter saying basically 'just as he thought nothing wrong with this gentleman's memory' so this was like red rag to a bull, I'd lived with my husband for 25 years I knew things wernt right. so we asked for a referral to the London college of Neurology Queens Square London. They accepted my husband as a patient and within 4 - 6 months of tests: memory, blood tests brain scans and a lumber puncture they pronounced he had Alzheimer's and started him on Aricept straight away. 4 years later, my husband is on Aricept 10mg and ebixa 20mg, he has hardly any memory but with the ebixa he can find his way around the home, get dressed with prompting, etc but he cant hold a proper conversation or get himself a cup of tea, or follow a thread of instructions and would get lost if he went out alone. but he is very happy and we go for long walks to maintain his strength, and ive even got him to skip with a skipping rope! but without Ebixa I am sure he would do none of these things. Good Luck.

 

[Poppy79]

Hi Loulou

Hi Loulou, I'm so sorry to hear you've been having such a battle. Re. your idea to change GP, be warned that it might not be the magic panacea you're hoping for: my mum changed GP and it hindered things for about 6 months whilst they got her notes through and 'established a relationship' with her. As it happened Mum changed to a surgery that's obsessed about saving time and money, whereas her old surgery was much more thorough. These days all GP surgeries are obsessed with saving money and not ordering tests that would be done in an ideal world.
Ask for asking for a referral, as per Kate's advice above, it's not easy. The patient themselves has to ask for the referral, or at least impress upon the GP during the allotted 5-10min appointment that things are really bad. That's fine if the patient has insight into their problems, but my mum still insists she doesn't have a problem with her memory and plays down any incidents where her memory loss is revealed. So in order to get this referral to the memory clinic I've had to keep a diary of incidents over the last 5 years whilst trying to impress upon mum's GP that her memory loss is serious enough to warrant concern. Basically, I had to make a nuisance of myself. I think in the end the GP made mum's referral just to shut me up.
Another idea, which I think someone on this thread has already suggested, is to make an appointment for yourself with the GP and just burst into tears saying how you can't cope. I reached that stage last November, necessitating a hospital visit. Carers save the NHS a *fortune* and so GPs are now quite clued up about recognizing that looking after carers = saving the system money, so they might make the referral to take the pressure off you. After all, if you're suffering from a mental breakdown then the NHS is not only paying for your care but also for your loved one's care in your absence.
Sad to say, it's all about knowing how to play the system. Good luck with it, I hope you make some headway.x