I went for an eye test last week. After a few days of feeling a bit “weird” and slightly dizzy and spaced out, I decided that I must have some sort of brain tumour just behind the eyes and so needed an eye test to diagnose my inoperable growth.They didn’t find anything, which I am quite surprised at. Oh, I am slightly long-sighted so need some specs for reading and close work (typing up my blog) and I failed the periphery vision test thing in my left eye twice, but other than that, I was given the all clear. A clean eye bill of health.
I was, I must admit very excited about my glasses. I used to have some for “close work” when I was doing my A levels many moons ago and also through university. But, being long sighted meant I had to peer over the top of them, like some wizened old biddy in order to see my teacher or lecturer clearly. It annoyed me intensely and I stopped wearing my glasses and haven’t worn any for the best part of twenty years. So, to be let loose in Specsavers with the help of Wendy, who would assist me in finding the right pair of glasses for my colouring and face shape, seemed like a real treat! Wendy was more helpful than I initially gave her credit for – apart from when she told me the Karen Millen blue frames brought out the blue in my eyes when it is obvious to everyone who bothers to look that I have brown eyes. The brownest of brown eyes – in fact they couldn’t be browner and are so far away from being blue that I laughed out loud at Wendy’s short-sightedness / lack of interest / disdain for her job (delete as appropriate). She pre-empted me when she said out loud, “Wendy, you should have gone to Specsavers!” Ha!
I plumped for the blue Karen Millen ones in the end (maybe I felt guilty laughing at Wendy) plus a nice tortoiseshell pair that does compliment my fair hair and brown eyes (apparently) and I was so excited when I picked them up last Friday, convinced they would solve my weird dizziness and the spots in front of my eyes that don’t seem to want to disappear. They didn’t. But I did enjoy flouncing around at work feeling like a naughty secretary in my new specs!
The novelty has now worn off and I am again convinced there is something very wrong with me. My eyesight seems a little blurry and I have a constant mild headache. Perhaps because Wendy knocked my confidence with the company, I called them to ask them to re-check me and so returned yesterday for them to take more pictures of the back of my eye and squirt air on to my eyeball to test for something or other. The optician refused to re-test me so soon after my test last week. There is no point apparently, or maybe it is that he can identify a paranoid freak from 100 yards. “Go and get your blood pressure checked,” he advised me.
“Okay,” I replied. “Do you think I might have low or high blood pressure?”
“I don’t know. I’m not a doctor.”
I went to Boots today, after the Mr Helpful and Informative Optician told me they can do blood pressure tests there, only to be told, after queuing for about half an hour that, of course, they don’t. So, I am no wiser yet as to why I have weird eyes or why I have a constant dull headache or why I feel dizzy. Maybe I’m just tired, with three kids and a business to run and an ill mother on my mind, perhaps my dizziness is understandable and I just need a good sleep! Or maybe it’s the hidden tumour!
A good friend of mine has also struggled with getting help from a medical professional this week. Her neighbour has been showing signs of paranoia and possible dementia for many months, with symptoms very like my mum’s. My friend is regularly approached by her neighbour, who asks for help getting rid of strange and frightening men in her house (there are none, only her husband) and she talks fearfully of people wanting to come and take away her dogs (they are like children to her). She is in her late 60’s at a guess and her husband is away every day from the early hours until late at night. My friend contacted the local GP last week to ask for help and advice and to check that someone is aware of how this lady is and how erratic and worrying her behaviour is. The GP advised my friend to talk to the husband.
Now, my friend is lovely. In my opinion she goes above and beyond what a good friendly neighbour should or would do naturally. She is always helping out, she is constantly concerned and she is regularly helping her neighbour with lifts here or there. However, she has previously tried to talk to the husband about the wife’s behaviour and it was (apparently) blatantly obvious that he does not want to hear it, or does not want to talk about it. Denial? Possibly and understandably. But, my friend is not a health professional. She does not understand the intricacies of mental health or the help her neighbour needs now or in the future. To ask her to get involved and to try to engage the husband in a dialogue about his wife’s mental health, in my opinion, was very wrong.
I think back to when my dad was a hard-working GP and what he would have done had he received a call from a concerned neighbour about one of his patients. Would he have fobbed them off, asking them to try and get the husband to talk about it? No. Would he have put a visit in his diary for that day and gone and checked personally on the patient to see what he could do to help? Of course.
I have spoken to my mum a few times over the past few days. I’d have loved to have shared my eye issues with her, or to have sent her a picture of me in my new Karen Millen blue frames, but some of the time she has not known me and the rest of the time she has struggled to follow a conversation about the weather. At least she knew me tonight when I called. I asked her if Stephen was there with her.
“Oh, well have you had your dinner?”
“No. The children always get their dinner first here. Then we will eat.”
I have no idea where she thinks she is or what children are there with her. There is no option but to agree or to make some noise of approval and then try and move on to something else. It is so f**king sad! This woman who could do absolutely anything she set her mind to. This woman who did achieve so much, who gave so much of herself to others, who loved so hard and had so much more to give…..and she’s gone. Oh you bloody bastard disease…..you f**king evil illness. You have robbed me of so much, of things I didn’t even know I valued and I am bereft.
Deep breath Sarah.
I had a chat with a different friend at the kids’ tennis club tonight. She was asking about Mum and I was in the mood to chat so a lot of it came out (sorry Kate!). She asked about the help my dad is receiving and I had to explain that currently, it’s not a lot. He has a lady who goes in first thing in the morning to help Mum with her tablets and then the same or a different lady goes in at night to do the same and to sometimes help get her ready for bed. That’s it. The rest of the time, other than an occasional visit from a psychiatric nurse, he’s on his own. His days are long and lonely and are filled with constant stress and anxiety. Where is the help for my dad? Where are the people who know what the next stages of this disease are and who can help my dad negotiate his way towards these stages and through them? Where are the support groups with people like my dad who have a young dementia patient they are struggling to look after? Where is the help for my friend and her neighbour? Where are the experts who can tell us anything at all? I’d love to hear from them, I really would.
It’s dementia awareness week next week and I look forward to seeing and reading all about how things are going to change, about improvements in resources and improvements in care…..That is of course, if I can see anything at all by then. Maybe my eyesight will have gone altogether by then! Maybe the tumour will have grown so big it will be billowing out my nostrils! Maybe my neighbour is calling the GP about me as I write this and getting fobbed off, told to approach Hubby about my paranoid behaviour. “Get her another glass of wine and some white chocolate,” he’ll retort. “She just needs a good night’s sleep.”
Chance would be a fine thing!
The top and bottom of it is that with vascular dementia you are discharged as there is no treatment for it . Therefore you get ‘Prescribed Disengagement’ (Swaffer) in it’s rawest form. Then you have to battle for a Care Plan which you might be lucky enough to get before you keel over! Hope that your eyes are feeling better.