challenging dementia – Handbagwarrior; verbal ramblings

I feel sad for the NHS, I feel sad for us all in the UK who use it. Good services in the NHS is a postcode lottery. Sadly, those of us living with Dementia in the North East of England the service falls short of acceptable.

Go on prove me wrong!

On more than one occasion have I heard it said by Memory Clinic consultants and Community Psychiatric Nurses (CPN) that “once you have a diagnosis then you don’t need any other [clinical] follow ups because there is no treatment”. Yes, that has been said to me with the advice that there is no point in even visiting me to check on my progress. I felt that I knew more than the CPN about dementia and put it to him the reasons why the service should be ongoing e.g. developing more than one type of dementia.

At present I am seeing a consultant at the Eye Infirmary because I am having real problems with my right eye. After a myriad of tests, it shows: there is no physical abnormality with my eye, nor blood supply, my visual field test is normal, but I am missing vision in a barcode pattern. So, areas of vision is not being processed by my brain. This is becoming a big problem for me because my vision is becoming blurred.

I recently saw a Neurologist for the first time in this area, after one of the practice GP’s referred me, who discussed with me the problems that I am having with intermittent swallowing issues, and the fact I have not progressed with Alzheimers in over 8 years. I sometimes choke when I am eating; it feels like I sometimes forget how to separate breathing and swallowing at the same time. Not majorly problematic at the moment as I always cough – then sneeze explosively scaring the life out of all those around me ! We talked about how it may be that my brain has to really focus on what I am doing to maintain the attention to do the actions. Including automatic actions such as breathing and swallowing. She suggested that I may be able to be referred to someone in Newcastle who specialises and does research regarding people with atypical dementias (dementia that doesn’t follow normal patterns). She would not see me again but would write to the psychiatrist I have seen in the Older Persons Memory Clinic (there is no provision for younger people in this area) and suggest that.

Meanwhile, one of my GP’s at the Surger also wrote to the memory clinic suggesting an MRI because I have only had a SPECT scan (which measures blood flow). An MRI would certainly give a clearer picture of my brain.

I was sent an appointment for the MRI and had it done. Then comes the waiting for the appointment with the consultant (Old Peoples Memory Clinic) to discuss the results…………………………….

But, there is NO appointment! What do I get – a COPY of a letter she has written to the Neurologist, who is not seeing me again, to say that to:

1) this raises the question of whether I have Alzheimer’s,

2) I have FTD, Frontotemporal Dementia and

3) Starting the medication Rivastigmene very early has indeed had a slowing effect on my dementia,

4) All of the above

5) She is..

“..leaving and will not be able to follow this up with her but she will remain open to the team at this point. If she does wish to have a referral onto Professor G, I would ask Ken S to either liaise with yourselves or discuss with my replacement about the possibility of a referral onwards if necessary”

Let’s recap: Neurologist is not seeing me again, Psychiatrist is leaving and has no intention of seeing me or following up on my MRI. NOBODY has discussed anything with ME and has no intention to. IF, if I want referral!! Of course I want a bloody referral, well this has been left to the CPN who appears to know less about dementia than I do. This is based on my experience in discussing with him about dementia some of it he was totally unaware of. Maybe this is because he only sees elderly people who are in the medium to late stages of their disease.

Am I fuming? Too damn right I am fuming. A new diagnosis to come to terms with is not just a simple, Oh, I’ve got FTD not Alzheimer’s, or Oh, I’ve got FTD and Alzheimer’s. The prognosis is different, this is my life, my health that nobody seems interested in. It took me 6 months to come to terms with Alzheimer’s, is this something new I now have to come to terms with?

TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST – YOU ARE TOTALLY RUBBISH!

Having dementia means I now have to push myself to do things, but recognise when I need to step back and say that’s just too much. Am now having some tests done for Angina, which has stunted my physical activity for the present. I just hate it when my body throws me a new problems to deal with.

This has been a long standing problem, and 16 months ago was diagnosed with asthma which may have been incorrect. I realise that I find it extremely difficult to explain symptoms when visiting my Doctor so have recently been taking my daughter with me. She tells me I give too much information which can confuse things because they may not be relevant. It is that difficulty, to sift out what should be said and what is not relevant that eludes me at present. I need to plan out what exactly I will say when I go to stop overloading my Dr with information!!

It is a help to take my daughter though because my Doctor keeps asking “how long..” and I have to answer, “I can’t tell you because my sense of time has completely gone”. Still he asks that question, so my daughter steps in and says what she knows. So, it is a lot less stressful to have someone who is close to you at an appointment.

Being able to be concise is something that gets more difficult with dementia, and not being able to describe something is a real problem. Think about when you have a pain, how does it hurt? ache; sharp; sore….it can be more difficult to describe when you have dementia.

Also, I may have a pain but unless the Doctor asks me if I have a pain, I have a tendency not to say. Why? I don’t know, I just don’t. My ability to offer the relevant information is sometimes lacking.

I think one problem is that I hate going to the GP Surgery. I really don’t like having to take medication, although I will if I have to. So when I do go, I may have a couple of things that have been niggling me a while and Doctors these days only like you to talk about one thing during one appointment. The way my mind works is that most ‘illnesses’ have more than one symptom so if you can’t give a list of symptoms how can a doctor diagnose you correctly? I get breathless, my inhalers don’t work, when I get breathless I keep losing my voice totally. It sort of feels uncomfortable in my chest/neck/throat. My Dr tells me that he will deal with my loss of voice another time but what if it is connected. What if I think that I can no longer tell them all of my symptoms because I think that it is too many? I have fibromyalgia I am always in pain, so won’t say that I also have pain. I get pain in my arms, my shoulders, even across my chest so I am now confused as to what pain belongs to what.

With my dementia I am beginning to feel I should make allowances for others not understanding the intricacies of my behaviour and speech, but actually I realise that I’m wrong, it is not me who should make allowances it is others who take these things into account.

Of course Doctors are trained to talk to people with dementia aren’t they? Sadly it seems a many need training. All the staff in Medical Centres should become Dementia Friends; have training. What is missed or misdiagnosed I wonder because someone with Dementia cannot tell you or explain if they are feeling unwell? Having said that, I know that there are some superb Medical Centres/Surgeries. Doctors and nurses around, but not in every areas of the country.