Mam

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Mum ‘n’ Me (look at those knees)

It is forty-five years ago since my maternal grandmother died.

During her seventy-three years ‘Mam’ (as we all knew her) had witnessed and/or survived the birth of flying machines, the great depression, two world wars, the space age and, The Beatles.  She had raised two children and was adored by four grandchildren.

Until I was fourteen, she had lived next door to us, next door but one, or ‘just across the road’.  She was very close to us in many ways.

My mum is now coming towards the end of her fourth week in the residential nursing home I mentioned before.  She has settled in well, often remarking how warm it is (something she never said at home).  She knows she is not ‘at’ home, but really has no concept of what ‘home’ is.  Whenever she sees one of us she beams with a happy smile and fusses over where we will sit.  When she and my dad are together they seem like teenagers; holding hands, smiling at each other and looking generally very happy.

Conversations with mum tend to be very much question and answer.  When we run out of things to ask or say, mum will ask us things.  For example, she often asks “how is my mam?” – which is the most telling and most heart wrenching aspect of meeting with her.  We stopped telling her that ‘mam’ had died forty odd years ago, long before she entered the residential home.  Instead we now say that ‘mam’ is doing ok.

My mum had spent some time, long before I was born, in a local sanatorium for T.B. patients.  She’d contracted T.B. from her brother, returning from naval service in the far east.  I wonder now, if that’s where she thinks she is because having asked how her ‘mam’ is, she often says – “she’s a natterer you know, I don’t want her to be nattered”.

:_(

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Residential Care

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This last week hasn’t been easy.

We moved mum into the specialist dementia-care wing of a local residential care home yesterday.

It became obvious once I’d returned from Spain at the beginning of February that something had to be done. Dad was at his wits’ end and really struggling to keep my mum and the house clean and hygienic.  He was still making meals, making sure mum had her medication as and when needed, and still ensured that she was drinking enough liquid to combat her double incontinence as well as her diabetes. He’d already suggested to me that he was struggling with it all, but he’d said that before and then refused all help when it was arranged for him.

This time, I had to tell him that there was no going back. The offer of respite-care he’d had earlier in the year (and said ‘would wait’ until I got home) had gone and would actually (probably) not help much at this point.  Mum now needed more constant care than he could offer.  Dad is now in his ninety first year and has his own challenges.

Besides, a care-home would also have their central heating on no matter what the weather!

So, Sharon researched the homes available locally and came up with a (quite short) list that had ‘Good’ or better on the CQC web site.  Luckily, one of these is located in-between our house and the house that mum and dad live in. Furthermore, when we asked, they had a room available. We were told to just pop along any time and to take them as we found them.

We visited last Wednesday and met the deputy manager and staff. The home had a relaxed feel to it, was warm, and the room mum might take up had a great aspect. Every question dad asked (and there was lots of questions dad asked) was answered positively and with confidence, so he was reassured that this was the place for mum. She was booked in for Monday; yesterday.

She was aware I think, that something momentous was happening but she couldn’t follow the thought through to completion. She asked “where are we going?” but didn’t respond when told (apparently, dad has been telling her daily).  She smiled and was pleasant with everyone she met when we got there and luckily, Sharon was able to stay with her for a few hours as she settled in to her room and had lunch.

I had to take dad away as he was falling apart and was really struggling with what was happening.  He’d wanted to go to town, so I took him there and then called in at their house to collect some medication that hadn’t been packed; things that he hadn’t been giving her because he hadn’t realised how important they were. When I got back and after her lunch, mum asked me “have I been dumped here?” – which hurt.  I told her that ‘dumped’ wasn’t the right word. I explained that she’d have no stairs to climb to get to the toilet, that the heating would always be on, that there would be people to talk to at any time and that we would visit. I cannot assure myself that any of that ‘went in’ but it was all I had.

Now our efforts have to be with supporting dad who is alone for the first time in almost sixty-eight years. He says that he will visit mum, but not every day as that would break his heart. He says that he will find stuff to do. He says that he realises that he will feel lonely, but that we are all at the end of a phone. He says that he will eat. And, with that in mind I’ve started making a few single-portion things that require little or no effort on his part. All being well he will survive the first few weeks and begin to relish the new life he now has.

I will visit mum on Friday (they asked us to stay away for a few days) when I go in to complete the contractual arrangements.

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

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