Alzheimer's disease

When I went to the COWs lunch yesterday I sat next to a lady who has Alzheimer's disease.  She is a wonderful woman: she has been a headteacher and a magistrate but that dreadful disease is robbing her of her dignity.    Another friend fetches her from home and we sit either side of her, making sure H doesn't wander off or purloin the cutlery.   The other ladies are glad she can still come but are also glad that someone else will sit next to her and take care of her.

Today I am going out to lunch with another friend who also has Alzheimer's.  J isn't as far advanced with the disease as is H but the conversation may become a little bizarre.

I have other friends whom I would like to visit but I just send cards or letters or make phone calls.  I wish I could do more, but the bottom line is that the person's for whose health I have most responsibility, is me.  

Please don't think I spend all my life as a ministering angel, but I have also been a carer myself for someone with dementia and I remember the gratitude and relief I felt when someone else visited and gave me a little time for myself.  It's just that two such meetings occurred on consecutive days and they have left me thinking.  I know my friend is slipping away and I want us to make the most of each other for as long as we can.  

I have to admit there is quite a bit of selfishness in this: I hope that if the time comes when I am housebound, others will remember and care about me.  

Pru

Writing about Alzheimer's disease yesterday brought to mind the death of Prunella Scales this week.  She was a wonderful actress (Sybil Fawlty amazed me) but she has had Alzheimer's for many years.  The courage shown by her and Timothy West, her late husband, when they spoke publicly about that terrible disease has been stunning.

She and Timothy West were married over sixty years until he sadly predeceased her not quite a year ago, having cared for her for many years.  He'd noticed that something wasn't quite right as early as 2001.  

She was a wonderful narrator of audiobooks.  Her reading of "Cranford" has long been one of my favourite bedtime stories.  She had just the right voice to read E F Benson's "Mapp and Lucia" books and I also enjoyed her renditions of some of the "Fairacres" stories by Miss Read.  I'm so glad that I will be able to continue to listen to her gentle but wonderfully clear voice.

Losing a friend

I've known J since both of us were children.  My parents were friends of her parents.  She's seven years older than me (a big gap when we were children, not so much now) but we both have fond memories of childhood.  

We saw little of each other for about thirty years but when we made contact again we were able to pick up the threads and laugh about our memories.  For years we have met for lunch two or three times a year.  Last year I was a little uneasy: something was wrong.

Earlier this year she had the devastating news that she has Alzheimer's disease.  She's having treatment to slow the advance of the disease but it is incurable.  She's aware that her memory is slipping and she realises that sometimes she may behave strangely but she's OK with being "managed".  Her husband was unhappy at the idea of her driving to a meeting point (we live about forty miles apart) so I decided to go to her and take her to a pub near her village.  We've done that three times this year and it is still a thoroughly enjoyable lunch we share.

Yesterday we were chatting about old friends and members of our extended families.  She asked after my sister G and I had to remind her gently that she came to G's funeral fifteen years ago.  It was painful for both of us but after a few moments sadness our conversation carried on.

We arranged to meet again early in the New Year.  I don't want to leave it long.  I know my friend is slipping away and I want us to make the most of each other for as long as we can.  

Maybe you would like to know what happened next.

 

I spent a week recovering from the journey before I was fit enough for surgery.  My left patella (knee cap) was totally shattered and was completely removed.  I was frightened that I would never walk properly again.

My right leg had been badly ripped in the accident and gangrene set in so the affected flesh was sloughed away and I was scheduled for a skin graft a week later.  Unfortunately I had brought an unwanted gift home with me - malaria!  I had to wait until that had gone before I was able to have the second session of surgery which involved collecting skin from my thigh and grafting it to my shin to cover the sloughed area.  

Then it was bed rest.  Total bed rest for a further month.  Eventually the plaster casts were removed and I was allowed to go to the hydrotherapy pool.  I was so excited.  A week or so of water supported exercise and other physiotherapy and I was allowed to walk for the first time in two months!  I was so excited.  I was shuffling along supported by two nurses and my Mother arrived to visit me.  She burst into tears at the sight of me.

I stayed in hospital for a while longer, learning to walk with sticks.  I had nearly three months hospitalisation all told.  Then home and working hard to build up my strength.  

For the next thirty five years I was able to walk and run fairly normally.  But as time passed my legs complained and I had to use first walking sticks, then mobility scooter and walker.  My left knee joint has been replaced.  I have an adapted bathroom and ramped access to my home.

However I am profoundly grateful for what I can do, thanks to the skill of doctors, nurses, physiotherapists and so many more.

My Mass Observation Report

I thought you might like to now what I wrote for Mass Observation.  This is going to be a really dull post but the brief is to write about just this one day in my life and 12th May was really dull!  

"Today I am feeling a little bit sorry for myself.  I was supposed to be taking care of a friend’s dog at her house but I have a lot of pain in my legs so I can’t do it.  I enjoy doing that particular favour as my friend’s house is high on the Lincolnshire Wolds and has magnificent views.  I regard it as a holiday with self-catering accommodation. 

 Instead, I am at home in my bungalow.  I am a tenant of The Church of England Pensions Board and the Board is an excellent landlord.  I am disabled (but usually in better nick than I am today) and my bungalow has ramped access front and back, a wet-room and an accessible garden.  Many older people have gravitated to the cul-de-sac where I live and we keep an eye on each other.  My housing situation could not be better. 

 As today is the twelfth of the month my pension for the early part of my working life arrived in my bank account.  Although I finished my working life as a vicar, until I was thirty, I worked in local government and the civil service.  These last few years have been a period of high inflation and I have had to economise, cutting down on car usage, food and energy bills.  The rate of inflation has started to drop and the latest consumer price index is 3.25%.  

 I wrote a post for my blog: indeed, I wrote about Mass Observation!  Blogging is a declining activity and seems to attract only older people but I enjoy it.  I have met a few fellow bloggers “in real life” and have written letters to a few overseas.  I read blogs about ordinary, everyday life, and people’s hopes and reflections.

 I’m very sleepy today, probably because I am taking pain relief.  The great joy of retirement is that it doesn’t matter how sleepy I am!  However, I can’t be bothered to do anything which is rather unpleasant.  I just keep nodding off. 

 Whilst I’m not able to do much I have had a few video calls with friends.  I think video calls are great.  The idea of being able to see friends miles away seemed like a fantasy only a few years ago.

Normally I enjoy cooking good food for myself from scratch but I don’t feel up to that today.  Breakfast was a sandwich which I had in the freezer and lunch was canned tuna, canned sweetcorn and mayonnaise.  For an evening meal all I could be bothered with was mashed potatoes from the freezer with a scattering of cheese.  I’ll survive.  But I shall be glad to eat properly again.

 This is probably my most boring day of the year!  I can’t move far, I feel “spaced out” on pain relief and my get-up-and-go has got-up-and-gone.  But it’s an honest record!"

In case you are feeling concerned, life is looking better today and the only way is up!

Information needed, please!

 I've had my regular mediaction delivered for yonks.  I just order on line from the GP who authorises it and sends the script, also on line, to my chosen pharcmay which for many years has been the Co-op.  Until recently I was very happy with the service but it has been reorganised and I am now distinctly unhappy.  It takes over a week to be delivered and they don't tell me when they can't supply something.  At the moment beither of those is a major problem as I am well organised to cope, but there may come a time when I won't be as able.

I've had a flier from Royal Mail offering a similar service and I wondered of any of my readers use it.  If you do, or if you have done, could you comment below as to what the service is like.  I would be very grateful!

Head above parapet

 

I had great ideas for December but on the first day of the month I woke crying out with pain.  I think I may have slept very awkwardly but the pain took several days to subside.  Then the dizziness started.  I've never had this problem before but Christmas lights in a spinning room adds a certain originality to the season.  

Anyway the spinning has downgraded itself to the occasional pirouette so I am now starting on the usual December things except that I won't drive.

Focussing on one very definite  thing seemed to help my head so I was able to sew.  These are a couple of the bags I have made. 

 

How is it for me?

 

Thank you for all your good wishes.  I've now been home fr a couple of days.  There was a suggestion that I should come home the day after the op but I resisted very firmly as there would have been no-one here. 

My lovely nephew will be staying until Friday.  I have set up an "SOS family" on Alexa so that she can call for help if I need it.  It's quite a lot cheaper than the usual Lifeline system and I feel it is better as it doesn't rely on me remembering to wear the alarm.  I feel very blessed as there is no shortage of kind friends and family offering to be on my SOS family list.  

I also feel rather lucky that I don't have to wear those horrid surgical stockings!  My legs are in such a mess (from previous accidents and surgery) that I can't tolerate them so I have extra medication to prevent blood clots.  I've also got pain relief to take and that makes the exercises less uncomfortable as well as making sure I can sleep at night.  

Home

 

Home again!  I had surgery Saturday and came home this morning.  All is well.  I am in far less pain than I expected, except at night.  My nephew has come to keep an eye on me.  God's in his heaven, all's right with the world

Thankfulness

 I'm quite busy at the moment as I prepare to go into hospital for the knee replacement.  And I have so much to be thankful for!  

Today is World Gratitude Day.  And I am so grateful for all the love and care I am receiving right now.  My nephew is coming to spend a week with me which will be quite difficult for him and I am very grateful.

He will have to go into work one day while he is here but the friend I phoned to ask her to come that day not only said "yes" but also. "I'm so pleased that you asked,"

Annie-the-Home-Enhancer has agreed to come more often until I can do more things for myself.  Jack too, will be keeping an eye on me - and I'll bet no-one is surprised at that.

I'm grateful for the skill of the surgeon and the rest of the hospital team and I'm also grateful for our wonderful NHS.

Thank you!

At Last!

To be replaced with chocolate - please!

 "The letter" arrived yesterday!  I will be having surgery on my knee in less than three weeks.  I will be going as an NHS patient to a small private hospital in Grimsby and I expect to be there just one or two nights.  

I am inundated with offers of help.  I am so lucky!  I have offers to take me to hospital and to fetch me home.  Someone will sleep here to make sure I am OK.  Jack and Annie (my home enhancer) have both offered extra help.  Others will shop, cook and odd-job for me and I suspect I will be checked on so much that I will be lucky if I get any sleep.  

And I am so grateful!  Grateful not just for the offers of practical help but also for the love and care behind them.    I am truly blessed.  

Preparing for a Pandemic

I've been looking through old papers before I sling them and I found a fascinating advice sheet "Influenza Pandemic Special"  from the Bay of Plenty District Health Board.  I have no idea why I printed it out - the Bay of Plenty is on the North Island of New Zealand and is about as far from Lincolnshire as anywhere can be!  Our present pandemic isn't influenza but this still makes fascinating reading.  

Back in 2006 The Medical Officer of Health said "It's not a case of 'if' but 'when' ", and he went on to describe what was already happening.  "Already we are seeing examples of how pandemic planning activities are benefitting our communities  ...  neighbours are getting to know each other, households are making general preparations."  Sound familiar?

He promoted the mnemonic "CHIRP" 

Cover your cough or sneeze; 

Have healthy hands by washing them often and well;

Isolate yourself by staying at 1.5 metres distance from others and staying at home if ill;

Reduce germs in your home and workplace by regularly disinfecting surfaces;

Prepare yourself and your family by being vaccinated and having a plan.

It's a four page document with lots of useful information.  I wish I understood as much about our current regulations as I do about pandemic regulations in the Bay of Plenty in 2006

Adjusting 5

Way back in March when I decided to withdraw into my home for my own safety, I started to keep a diary "Personal thoughts during a pandemic" and I have made entries in that journal ever since.  I'm very "lucky" - I don't have children or grandchildren whom I am desperate to hug (which is what most of my friends are missing most, I think) and my basic income is secure so my worries are minimal.

To be honest I have sailed through lock down and for the most part I have enjoyed it!  I have taken the time to smell the roses and the lavender, to listen intently to the blackbird,  and to savour life.  I've plenty of hobbies and plenty of stash to enjoy those hobbies.  Five years lock down wouldn't exhaust the stash.  Now Jack is back looking after me I have a garden to relax in even though I am missing Annie-The-Home-Enhancer and my house isn't quite as relaxing as it was!

But it isn't plain sailing.  During lock-down I have suffered four bereavements - the two I've blogged about and two other very close friends.  None was covid related but all have been made more difficult because of the current circumstances.   I can't give the families the hugs which I would normally react with.

I've been quite involved in ministry both by being a telephone pastor and in writing pieces for reflection.  I've valued the pastoral ministry of others.  I've joined in Zoom and YouTube worship but I have missed standing next to other Christians to praise God and I have missed leading worship. 

Friends have been kind in shopping for me and Sainsbury's have delivered regularly but I'd like to choose my own fruit and veg and discuss my purchases with my butcher.

One of my slightly unusual "activities"  during lock down has been regular corona virus testing.  You may notice in news bulletins that calculations are made on how the virus is spreading (or not) and that about 11,000 people are being tested regularly to help in the calculations.  Well, I'm one of 'em!  I was invited by The Office for National Statistics.   I have the swab test (which indicates whether I have the virus at the time of testing) very frequently and also have a blood test (which shows if I have antibodies as a result of having had it) occasionally and apart from that I just do whatever I would do anyway under the present regulations.  I would be told if I have the active virus but not if I my antibody test shows that I have had it.  This means that my behaviour is unaffected by the results.  I'm really pleased to help in this way and they also give me a little something for the inconvenience!

January

I went to church on Christmas Day and I went to church on Sunday but apart from that I haven't left the house.  I have a truly disgusting cold.  I don't get many colds these days - it's nearly two years since I had one - but when they come they certainly make themselves at home.

This is not a good start to 2020.  I don't feel like doing the usual looking-back-and-looking-forward post for 1st January. However, I want to wish you, Dear Reader, a happy 2020 and I want to resolve that this will be a good year for me too.

So it's back to a very old theme for me this month.  For me (as for many other people) January and February can be very "bleugh".  Christmas is over, the summer seems a long way away, we get colds and flu and life doesn't seem very rosy.  So I want to use this blog as a prompt to make me look for life's little pleasures, the little joys which can too easily go unremarked.

And today's pleasure was a phone call from a friend to make sure I was OK and then her visit to the shops to fetch me something to alleviate my cold symptoms and to get the bananas which I was craving.  And what's more she even brought me some flowers.  Life is looking up!

Kindness

It was a mistake!  Never again!  Never again will I call a post February Fitness.

February was OK for a few days and then it was downhill.  I'm fairly sure that it is "only" a cold but it has knocked me for six.  I can't remember one like it.   When I'm feeling ill I don't like other people so I've spent a week in bed.   Ten days into the cold I still feel really ill.

And that's when I rely on the kindness of others.  I'm never able to drink coffee when I'm ill so I've needed a constant stream of orange juice but my dear friend Claire has kept me supplied.  She also offered bed changing and laundry but I have a big enough supply of bed-linen.  

I live alone.  I am disabled.  I am getting older.  I have frequent need of the kindness of others.  And I am rarely disappointed.

Big Baby

Today I have a truly disgusting cold.  I spent the morning in bed.  This afternoon I have sat wrapped up in an armchair.  When I have a cold I go into childhood mode – Big Time! 

When I was little my Mother used to have a stash of special hankies which came out when we had colds.  They were old ones of my Father, worn thin but worn very soft.  There were also the middles of worn out sheets, hemmed and put away ready for the sneezing season.  Earlier this year I put my foot through a sheet and some parts of it were duly hemmed and put away.  That sort of pure cotton is much gentler on my nose than any tissue and today I’m feeling glad I took the trouble.

Ribena was a great treat in my childhood because it was very expensive.  Now it’s a great treat because it’s so full of sugar.   Yes I have tried the light version and it just didn’t hit the spot.  When I have a cold I don’t like my usual black coffee so Ribena is wonderful. 

I think my cold is illness in sympathy with Bobo who still awaits his prosthesis and my laptop which is still in London at the specialist computer hospital.

Normal service will be resumed as soon as possible.