Mum Update

[Moggie]

Hi all,

Firstly I would like to thank all who responded to my last post regarding my 85 year old deaf mum who has now been been diagnosed with MD.

Wanted to give you all an quick update on the continuing battle to get her seen by someone in the NHS (and at this stage of the fight I would be happy with the hospital cleaner, at least it would be someone!!!!!!!). It turns out that her GP has messed up yet again and not given the low vision clinic enough information, so more phone calls and time spent trying to get her GP's practise manager and the consultants secretary on the same page and communicating directly with each other - please can someone tell me why getting her an appt has turned into some sort of farce and is like trying to wade through treacle to get anyone to see sense let alone book her an appt. The levels of incompetence I have witness is unbelievable as no one in the NHS seems to know what other departments in the NHS needs or requires to actually help my mum.

I wrote an email to my brother yesterday saying I can now understand why elderly people, who have no relatives to fight for them, are often left to fend for themselves with no help at all because if I cant get anywhere with 8 weeks of phoning, emailing and pestering then what chance would they have.

So for my update - not much to update really except to say my blood pressure has reached boiling point on occasions this week, my mum isn't helping matters by refusing to slow down and act like someone who is deaf as well as almost blind and in the process hurting herself, unbelievably she now wants me to take her shopping tomorrow to buy a deep fat fryer - yes I did type that right, a deep fat fryer. She can hardly see her hands let alone cut up chips and then fry them, looks like I will have another fight on my hands tomorrow when I tell her no. If I dont laugh I might just burst into tears.lol.

On a positive note, the sensory team are visiting her tomorrow (am hoping that they can talk her out of the deep fat fryer idea!!!!) and Support 4 sight are coming next week to show her some aids she can purchase. Seems to me that charitable organisations are doing a lot of what the NHS should be doing and are better at understanding the need for swift action.

Will update again if and when my mum finally gets an NHS appt.

Thanks for reading my rant.lol.

Moggie x

[Hidden]

Hi moggie.....and breathe....Lol x

Yes the NHS is appalling at joined up thinking and communication. Was it always this bad I wonder or are we just older and wiser now?! I'm always saying things are "run by 12 year olds" as that's about the level of forward thinking I witness daily.

Anyway, have a look at the hot air "fryers" - only a teaspoon of oil. Ours is by tefal but there are others. We put frozen chips in ours. Might be a good compromise for your mum?

Best of luck.

[Moggie in reply to Hidden]

Morning,

Sorry for delay in answering but I was with my my all day yesterday as she had the sensory team out. All the sight guy could offer her was a few "bumps" for her cooker and he couldn't see a problem with a deep fat fryer (she flatly refuses oven chips and has had the hot air fryers but didn't like them so it was back to what she knows, which is frying in deep fat!!!)

Thanks for the reply

Moggie x

[Beldie]

Hi Moggie

That's a completely understandable rant! Deep fat fryers are great but your mother might be persuaded to go for the Tefal described by eyesright, or do you think she would like instead to use oven chips (no hot fat at all though not such tasty chips...)? I trust that the sensory team advised on lighting, too, and all the other things your mother would benefit from. It must be frightening for you to know what might happen: falls, burns and so on. Tell her that I too am 85 with compromised vision and a bit of hearing loss - not as bad as your ma's, I guess - but I take much more care nowadays on stairs, steps, using knives, etc., than I ever did because my body tells me to. (But I don't live alone - big difference.) Tell her too that I admire her trying to carry on as usual - it shows spirit. You'll know how to put it.

Anyway, let us know how it all goes and meantime keep smiling - while gritting your teeth!

[Moggie in reply to Beldie]

Thanks for the understanding comments and spirited it one way of describing my mum, stubborn is another as, unlike you, she will not slow down, will not take into consideration her deafness and her sight lose and still does everything at 90 mph.

She had both the sight and hearing lose sensory team visit yesterday and out of the two it was the hearing lose lady that was excellent. She brought all sorts of aids around, door bell, smoke alarm, headphones ect that my mum could try but all the sight guy could offer was some pumps to go on her cooker. No information about lighting or anything else, I was really disappointed. He didn't even think a deep fat fryer was out of the question. I have a charity coming out to her on Tuesday with some sight aids so lets hope she can benefit from a few of those, even if she was able to read again it would lift her spirits and give her something to do.

Thanks for your comments, it's always helpful to get someone else's view who is in the same situation as my mum.

Moggie x

[Beldie in reply to Moggie]

Good morning, Moggie. It is so disheartening when such things happen - unnecessarily. Whether your mother will be able to read again depends, I suppose, on the extent and type of her AMD. Is it the wet or the dry type? One eye or two? Mine is wet, in both eyes, with ongoing injections, and my overwhelming fear is to become unable to read. Currently only one eye works but that is enough - so far. The very best help in my case is proper lighting, which the Macular Society can advise on. On the larger issue of the geographical pot-luck, what about contacting a patients' group (via Google)?

If you mother insists on a deep-fat fryer, I suppose it is much the safest way to get good chips, but there's also the problem of lifting the thing - if it's not kept on the counter - and the act of lifting the chips from basket to plate. Changing the oil would be another possible nightmare. Ah me...

Very sorry to hear of your thyroid problems - take good care of yourself and keep in touch with this group - even if only to let off steam.

All the best.

[Moggie in reply to Beldie]

Thanks for your input.

My mum has the dry type of MD and it is in both eyes, although one is worse than the other.

Yes I can see problems with her new deep fat fryer but she has been using one all along, she just wanted a new one with a bigger basket. It stays on her kitchen worktop, along with ever other gadget she has as she does love her gadgets. I think it will be down to me to empty the oil and change it from time to time as I suppose the bigger picture is try to work with my mum and not suffocating her but letting her find her own level, I just wish she would recognise that she cannot do a lot of what she used to do and accept help when it is offered.

My mum keeps insisting that light hurts her eyes - is this normal?? - and so sits in darkness most of the day.

It silly things like making sure she is taking the right medication that is causing some trouble, like her thyroid medication is now in two different strengths - a 50mgs tablet and a 25mgs tablets - so how can we insure she is taking this correctly and not take more or less that she is supposed to. I have put the two different strengths in totally different size boxes and in different draws in her cabinet as this was the only way I could see around the problem so any practical help from you guys on here would be helpful.

Whilst typing this reply I have just had a phone call from the low vision clinic and she is booked in for a months time, and so progress is being made thank god.

Thank you for your comments and I hope the treatment you are receiving will lead to many more years of reading as books are extremely important to me and I could not imagine a life without books.

Best wishes to you.

Moggie x

[Ayayay80]

Hi moggie, how frustrating for you and your mum!

I waited 2 months from the diagnosis at the optitian to actually seeing an ophalmologist at the hospital, mainly due to a long waiting list. I know how unnerving the waiting is and I am so sorry for you both. It is propably harder for you than for your mum as you are trying so hard to get things moving. You probably feel as if you were bashing your head against a brick wall. Don't forget to consider your own health though, moggie. You'll be no good to your mum if you collapse in a heap.

I know you want your mum to slow down. Old age slows us down automatically. I am 5 year's your mum's junior (a mere baby yet) and my eyesight and hearing are nowhere as desperate as your mum's yet, but I take much more care these days at home and when I am out and about. I can sympathise with your mum wanting to do all these things for herself even if there are risks involved. She will be loth to throw in the towel. There are some very good aids available that may help your mum to live a more satisfactory life. One of my friends is totally blind, yet she manages very well to do her basic household chores. So there is hope for your mum too.

My very best wishes x

ayayay

[Moggie in reply to Ayayay80]

Thanks for your encouraging words. I think the stress is catching up on me as I am off sick from work today with a very heavy cold, although saying that a thyroid sufferer will always go down worse with something that others as the immune system is broken so cannot fight bugs and other nasties so well. Stress is a thyroid sufferers worst enemy, and I try to stay away from it as much as possible, but the incompetence of the people I am having to deal with over my mum is so frustrating.

I am hoping against hope that the charity I have going to my mums on Tuesday will show her some aids that will at least allow her to be able to read again because at the moment she is just sitting in silence and darkness so for her to be able to read a book or a newspaper would be a huge step forward for her.

The lady for the sensory team was horrified to hear that my mum has been paying for aids to keep her safe. She paid £900 for a button to go around her neck in case of an emergency, she also bought a smoke alarm that vibrates under her pillow if there is a fire at night. She bought all these aids because we were told that there was no help available for mum as far as her deafness was concerned. The lady has now registered her as deaf and has got the fire brigade going round to fit some more flashing/vibrating smoke alarms for her. She also showed her a fantastic flashing very loud doorbell, which my mum refused but she has now had second thoughts so I will be getting back in touch and asking for one for her. There is help out there for people like my mum but trying to find it can sometimes be very frustrating.

Thanks for your comments, it has shown me there can be light at the end of the tunnel.

Moggie x

[JimGlanDwr]

I'm sorry but I have nothing but praise for the NHS and their hardworking staff this includes one of our daughters. At a recent check up my wife had lost a stone in weight, the practise nurse referred her to the GP, the GP to the hospital where she had a CT scan, and two internal examinations all in a matter of weeks. She has been enrolled into balance and fitness classes, she has had memory tests and OT home visits all free on the NHS.

Shortly after Chemotherapy my wife woke up with severe chest pains I called the NHS help line, we live in a rural area down a farm track. Within ten minutes a Paramedic and an Ambulance were outside our door, in rural areas ambulances are stationed in laybys and village car parks so they can respond quicker and my wife was taken straight to hospital, where a chest infection was diagnosed (people on chemo lose their resistance to infection), this was at three in the morning.

I don't know who referred me to the Eye Clinic, I received an appointment out of the blue, however I had been to Specsavers a few months earlier and had been given an Amsler grid and advised to have reading glasses as well as my existing varifocals and how to use the grid was explained to me. However a few weeks before the clinic appointment I had my annual diabetic eye screening so they may have seen something.

Rather than list even more instances when the NHS (in Wales) has been superb, I'll finish by saying both myself and my wife are alive because of it.

[Hidden in reply to JimGlanDwr]

Hi Jim. Yes when it works it works brilliantly. So glad you and yours got the benefit of that. Individual staff are without doubt hard-working (I include myself in that lol) but the organisational management etc and leadership has a huge impact which can go either way. It's just such a shame the different areas/trusts etc don't all operate to the same good standards. Bit of a postcode lottery for some of us.

[Moggie in reply to Hidden]

Couldn't agree with that comment more. My mum is in Essex and I live in Suffolk and the difference in the NHS service is unbelievable. I cannot praise Ipswich Hosp enough, as they have been marvellous with me, but go into Essex and the difference in service is shocking. Maybe this is why the unusual step has been taken for Ipswich Hosp to also run Colchester Hosp as the later has been in special measures for over two years now.

It would be a wonderful thing if everyone got the excellent service some trusts can, and do, give their patients but unfortunately this just does not happen.

Moggie x