Happy Birthday

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As I write this (on Wednesday 13th December) it is my mum’s birthday.

She is now eighty-eight years old.  Eighty-eight! That’s a fine old age.

I’m a bad son though.

I haven’t phoned her to say “happy birthday”. 

Which is probably the first time I haven’t visited or phoned on her birthday for over forty-five years. December is an awkward time for me though as my birthday is on the 7th, and my granddaughters’ is on the 3rd (lots of December birthdays) – and with all the Christmas shopping and ‘stuff’ – you know?  And, we’re not in the country.

But then again, I could still have phoned. 

Mum has Alzheimer’s disease and, because she sits nearest to the phone – she answers it every time it rings.  Then, because she is also deaf and ‘forgets’ to turn on her hearing aid, she cannot hear the caller – she often says “who is it?” (you comply with her request), then she will say “I can’t hear you, who is it?” (you comply once again, louder this time) and then one of two things happen:

  • – she says “oh bugger off – I can’t hear you” or …
  • – she hangs up.

Occasionally, (very occasionally), she will hold a semi-lucid conversation with you, then, in the background, you will hear my dad say “who is it?” and she will pass the phone to him and say “I don’t know

We do have a system of calling that overrides her habit of answering EVERY phone call, but sometimes she beats even that.  I once visited just in time to turn a mattress salesman away from the door (she had said “yes’ at some stage during a telephone cold-call presumably).

So – I didn’t call.

Happy Birthday mum XXX

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Continence

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I’ve really struggled putting this post together.

We had the visit from Locala’s Stephanie, a specialist continence nurse, last week.  She was lovely, as they all are, and was able to check mum’s vitals – all of which are ok, all normal for her age – other than the fact that mum is (besides everything else) diabetic.  Stephanie talked to my dad about strategies to help the (double) incontinence: basically, get mum to drink more liquids!

Nevertheless, it took her very little time to recognise the main problem chez Sugden.  They talked about the various problems he/she/they have to bear because of mum’s Alzheimer’s and Stephanie suggested that dad take up help offered by the various agencies and maybe let mum visit a day-care centre, at least once a week.

Of course, all of this has been on the table before and dad still stubbornly refuses help as he “can manage” and will “let us know when he can’t manage”.

Mum just sits there now, falling asleep from time to time, unless she is spoken to.  When spoken to, she can react perfectly to the question or conversation at hand, but immediately loses all interest once the conversation drifts away.  Constant stimulation is not something she gets, nor, I suspect, wants.

Dad has begun to complain of pains in his back and is worried that his hip is playing up again (he had a new one fitted eight years ago). He has therefore visited the doctor himself – something he will have seen as a priority as his main aim in life is to look after mum.

However, us trying to tell him that his back hurts because he’s lifting mum in and out of the bath (and that therefore someone else could be employed to do that) is like shouting at the moon.

So frustrating.

I can manage

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There have been several developments in mum’s care over the last few days. Things are certainly not improving.

Since my last post, I’ve had contact with Yasmine (Locala) and with Mags (previously with Kirklees) but now with Mid Yorkshire Carer’s Trust.  I’ve also had an appointment cancelled by Katie Dixon, the Admiral Nurse.  This remains sine die.

Yasmine has been kind enough to put pressure on the Locala incontinence team and we now expect a visit on Tuesday this week.  We’ve been waiting for this to happen since early August when it was first mentioned to Locala and it has been frustrating to see mum’s health fail so much during the time we have been waiting.  Hopefully, the visit will help – although I cannot guess how at this fairly late stage.

Mags, who is now the Business Development Manager for our local Carer’s Trust, had remembered the meeting we had some weeks ago and had asked if mum and dad wanted to take part in a new initiative that would mean mum receiving a subsidised day-care appointment.  For £6.00 she would be ‘looked after’ at a day-care centre from 10:00am to 3:00pm.  Lunch would be included, as would things such as bathing and/or hairdressing (at extra cost).  At first, dad seemed excited by the prospect of five hours to do what he liked but given a couple of days to think it over he rejected it quite firmly saying that it would be too much stress for him to get mum ready (etc.)  So, we’ve had to reject this amazing offer from Carer’s Trust.

Dad seemed quite agitated when he told me this and he added that whilst he appreciated everything I was doing – he ‘could manage’ and that I ‘could pick up the pieces‘ whenever the time came that he couldn’t manage.

Which leaves me in the unenviable position of wanting to help as much as I can but being kept at arm’s length.

I will attend the incontinence visit as ‘Mr. Memory’ and note-taker but after that, all I can do is watch from the side-lines and talk to the professionals as and when needed.

Photo Credit – https://flic.kr/p/FdhadA – With thanks.

Adult Pants

Error MessageIt’s been a strange, but busy month: It started in Spain but almost as soon as we got back I developed man-flu, and then Sharon then caught it.  Also:

  • We’ve had various plumbing issues in the house which meant complete disruption in the kitchen and bathroom for most of the month.
  • We’ve been guests at a friend’s wedding.
  • We’ve travelled to London and eaten there.
  • We’ve had my brother and partner over from Australia staying with us for a couple of weeks. They’d come to help us all with:
  • The celebration of my dad’s ninetieth birthday.

We had come back from Spain early, because my dad had seemed to be getting a little edgy, so I took the opportunity of being back early to arrange a meeting to discuss a Carer’s Assessment with someone from Kirklees Adult Services.  That meeting went well, a nice lady Mags Rogerson, was very helpful, but she was leaving two weeks after the meeting – so we have no continuity there. [Updatenot true. Next post will explain.]

Nevertheless, Mags was able to gee-up the Locala incontinence service before she left her job.

We’d been promised contact from that service during the first visit by Carol back in August.  However, nothing seemed to be happening and my mum’s lack of bladder control was getting worse.  By the time my dad’s Carer Assessment came along, early in October, mum was having more serious accidents and had progressed from ‘pads’ to ‘pants’.  So, thank you for your help Mags Rogerson – now (I think) at Carer’s Trust.

The big issue for me still is to convince my dad that he needs help.

Although he was 90 last week, he still maintains that he is ok and is managing well.  But he’s not!  Mum needs more care than he realises, especially personal care – but he is the gatekeeper and until he can be convinced that more care is needed, it will be difficult to get someone in.  He still helps mum bath – which is, in itself, not easy, but when you only allow yourself a wartime measure of hot water in the bath, it’s doubly difficult.

However, I’m nearly there with him. He’s told me now that it’s up to me (as if!) but I think he realises that “I’ll let you know when I can’t manage” will be too late. All being well I will soon have someone going in and helping out at least once a week. We’ll see.

Deterioration

Hyperbole_and_a_halfI’m picking up the feeling that mum has deteriorated quite a bit while we’ve been away  in Spain. Dad has begun to sound like he’s approaching his wits end. I’m updated by him when I phone (irregularly – see below) and says that he’s – ‘ok’, and often adds – ‘oh, I’ll tell you more when you’re back’.  Peter and Linda (brother and wife) fill me in more thoroughly by phone and via WhatsApp.  Things don’t sound too hunky dory.

First of all, we agreed – before we set off at the very end of August, that I would set up a telephone re-direct. Mum and dad had been getting all sorts of calls which had to stop. This resulted in me emailing dad’s telephone provider (Royal Mail) and then speaking with someone who purported to be in Preston. We put the re-direct in place and it seems to work. However, as all calls are redirected, we had to find a way to get through to mum and dad without a redirect. We found one, it works – except – mum often answers says ‘who is it?’ then hangs up.  So, getting through to speak with dad more regularly is a little hit and miss.

I also set up a Kirklees Gateway Carer’s Assessment for my dad. That is something not to be undertaken lightly! The response was remarkably swift and I have since had emails from, and talked to, the care worker assigned to my dad.  Many issues have come out to the discussion but I cannot progress them until we all meet together – all being well next week.

Because I’m away this month and because of her other commitments, I cannot meet the Admiral Nurse, Katie Dixon until November.

So, for the moment, the only contact mum is receiving from organisations is a weekly visit from Yasmine, of the Locala Adult Therapy Team.  I know that both mum and dad look forward to her visits very much. She has helped them with bathroom arrangements and helps mum with her mobility. She and I have also talked at length on the phone and she has set up quite a few things on my/our behalf. Thank you Yasmine.

Photo Credit: http://hyperboleandahalf.blogspot.com.es/p/contact.html
(found elsewhere on the web – all credit to Allie for the cartoon) http://hyperboleandahalf.blogspot.com.es/p/about.html

Admiral Nurses

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Earlier this week I was visited by Katie Dixon, an Admiral Nurse working with the South West Yorkshire NHS Trust. I really should have ‘Googled’ Katie before she arrived – it seems that she’s a bit of a star.

She certainly was for me.

The visit was made to discuss my needs with regard to the support I am trying to give my parents. She asked me to tell her about my mum and about my dad, mum’s main carer. What kind of woman was my mum before Alzheimer’s? What is she like now? That’s quite a cathartic exercise I can tell you.

How was my dad coping? Ok – ish. But he’s 90 next month and needs support whilst he looks after my mum – pretty much full time now.

We then discussed the various services that are available: Those which we HAD accessed and those which we had NOT YET accessed. She advised us to start the ball rolling with a Carer’s Assessment, something we’d looked at before but dismissed for the moment, as there is a 6 month waiting list. She also gently urged me to try and get my dad to consider paying for my mum to have a few hours of care per week as this would help to prepare mum for the extra free four hours care that could/should come once the assessment is made. The care provided by outside agencies should/could help us to halt the ever decreasing world-view that mum has just now.

We also discussed a number of other topics including finance and how funding might be judged at some time in the future. Diet. Mum is losing weight and body mass quite rapidly now and Katie suggested that a return to full fat products, butter etc. is often recommended for dementia patients. However, mum is diabetic and dad is fighting cholesterol with diet – so a visit to the doctors to request a visit from a diabetic nurse was suggested. There were other, more mum-centric personal matters discussed, which have now been passed on to my dad.

Photo Credit

CC BY-SA 3.0 Nick Youngson
http://thebluediamondgallery.com/tablet-dictionary/a/alzheimers.html

Milton Keynes

Lost and Confused Signpost. No date.Last Friday, we visited friends in Milton Keynes. The drive down was fine, with intermittent, bright sunshine. I was therefore constantly changing from normal driving glasses to prescription sunglasses; an easy enough task, as I keep them on old-fogey-strings around my neck.

Having arrived at our friend’s house, I didn’t need the sunglasses again until setting off for a walk on Saturday.

I should say here, that I own two pairs of prescription sunglasses; I keep one pair in the car and another in my rucksack, and as I couldn’t find the car ones, I used the rucksack ones during our walk.

So – I ‘knew’ I had both glasses on the way down to MK but had ‘lost’ a pair somewhere after our arrival. They could not be found!  We searched high and low and eventually left our friends on Sunday without them.

Once we were home, I booked an appointment online with Specsavers (one was due) for Monday and as a consequence I bought another pair. Returning home from Specsavers I immediately found the ‘lost’ pair in a basket at the bottom of our staircase!!!! They had never been to MK.

So, how did I wear them en route and still find them in my rucksack? Remember; I had driven down with sunglasses on – but couldn’t find them when I needed them on the Saturday, so I used the rucksack ones – which, it turned out, hadn’t left Huddersfield!!!

The only explanation I have is that I’d put the ‘car glasses’ in the rucksack after we arrived in MK – and completely forgot doing so. Even now, I cannot make myself remember.

Photo Credit https://www.flickr.com/photos/wildrose115/23173416364 – with thanks.

 

Mobility visit – mum

A_Forest_of_Walking_Sticks_(26107976093)Last week, mum had a visit from the Locala Adult Community Therapy Service. This was for them to carry out a ‘mobility assessment’, mum having had a few falls recently.  The Occupational Therapist that attended was lovely with my mum and I suspect, stayed well beyond her allotted time chatting and helping us with mum.

Dad had errands to run, so I was there when Carol, the therapist paid her visit.  She began by chatting with my mum and asking her a variety of questions about dizziness, wobbliness, eyesight etc. and the first thing I made a note of was that mum needed an eye test. [This was later found to be incorrect as she has a diabetic eye test AND a normal eye test each year, and despite mum’s contention that she only wears glasses for reading, she has pairs to be used on a daily basis – so much for trusting the word of an Alzheimer’s patient!]

The next thing we discussed was shoes.  Mum has shoes made by the orthotic department at HRI and following her most recent fall – one pair are back at HRI being repaired.  Carol suggested that future shoes should have no heel, but wedges would be fine. She also suggested that mum’s slippers should have Velcro fastenings, so they could be tightened more appropriately. The ones she has are ok just now, but bear in mind the Velcro for the future.

Mum said that she probably had 4 or 5 cups of tea per day and it was suggested that she have at least one, preferably two more drinks in the day. She also needs her toenails cutting – mum’d said she usually did them herself. [Something else I found to be erroneous! She periodically attends a ‘foot clinic’ where such things are taken care of.]

Her blood oxygen level was logged at 97% (good), and her sitting B.P. 135/64 (again, good). Standing B.P. 142/60 (good, as expected) and stood-standing B.P. 140/70 (again, ok, as expected). Pulse was ok too.

Carol watched mum walk up and down the stairs and around the house.  She then suggested that rugs are removed, as they become trip hazards and that a second handrail be fitted on the stairs. We discussed this and agreed that it would be impossible as the l/h side is not a solid wall and inappropriate for such a device.  She then had my mum go through a variety of exercises aimed at testing mum’s foot, knee, leg and hip strengths – these all seemed to be ok although they wore mum out.

The nurse then discussed bathing and agreed to request another visit from elsewhere in Locala, to advise about bathing (tips, tools and techniques – now arranged).  This visit would also see mum being given some short, while-sitting exercises to do.

The single point of contact number for Locala is 0300 304 5555

D.I.Y.

From_commons.wikimedia.org_wiki_File-Inbus-sruby.jpgThis time it’s only a small thing, a very small thing, both literally and actually.

The door latch to our bathroom was sticking and eventually, it refused to allow the door to be locked or closed.  I repaired it.

I stripped it all down, WD40’d the bits that needed it and reassembled, only to find that the lock (some kind of swivel mechanism) was too tight to work.  I adjusted that and hey presto – it worked properly again.

Well, it worked for a couple of days before the lock fell apart.

A locking screw or something had fallen out of the barrel. I’d obviously not tightened it back up correctly. So I searched the floor and the vacuum cleaner bag – but no screw could be found. On Monday then, when the hardware shop was open again, I popped along to see if he had such a very tiny screw that would fit our lock.

Of course, I took the barrel with me and he inspected it for a few seconds before saying that it wasn’t a screw I needed but an Allen Key. I was puzzled and asked how he knew that. He said that there was an Allen bolt still in there and that it had obviously not been tightened enough. To prove this he removed the Allen bolt to show me.

And there is the issue: I had no memory whatsoever of using Allen keys to repair the door. None. But I must have used a set of keys to remove the lock mechanism. Even now, writing this, I cannot trick myself into remembering.  Hey ho.

The Maze

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Rather than take over my Saturday Walks blog with memory related posts, I have decided to continue logging my mum’s decline here; along with my own reflections of (perhaps) increasing memory loss.  Earlier ‘Mum’ posts can be seen on the Mum’s Memory page.

Since my last post (https://saturdaywalks.wordpress.com/2017/07/19/alzheimers/), mum has started her treatment.

I continued to phone the clinic every day and left the same message with whoever answered.  We eventually conversed on first name terms and I told Kerry that I just needed to know whether mum could have the Donepezil or not.  The doctor didn’t actually have to speak with me, she could just say “yea or nay” to someone who could give me the message.

Eventually however, the consultant/doctor did ring me and explained that the cardiology appointment that has caused the delay (the consultant/doctor not having been aware of it before she met my mum), was nothing to worry about – the ECG that mum had had, had just shown up some lines (I think that was the word) that are probably historical; so it just needs checking out to be sure.

I’ve since learned of other people who are or were on Donepezil, including close relatives.  Some of these have heart problems – so why it caused a concern in mum’s case I don’t know.

We met Jade from Making Space on Thursday.  She helped us to fill in the Attendance Allowance (AA) form – which is a quite invasive document.  Things are now in the hands of the Department for Work and Pensions (DWP) – who, given the reports on their performance over the last seven years, will probably say that mum should stop shirking and get back to work!

Nevertheless, without my dad there to help, mum couldn’t really look after herself anymore.  Dad shops, cooks and makes sure that mum remembers to eat and take her drugs.  For a man approaching ninety years of age, he’s doing a cracking job.

However, he too needs respite and the AA will hopefully allow him to get that.  We’ll see.

My next job – to explore and contact Kirklees Council’s Gateway to Care.  I’m told that I may lose the will to live!

* The appointment made for 31st July has now been cancelled and eventually (after phone calls which have been ignored) re-sheduled for early September – ANOTHER six weeks wait.

Photo Credit: reproduced with kind permission of
Simon Kneebone – Cartoonist and Illustrator
https://simonkneebone.com/