Dementia: ‘This Is Still Not Sustainable’

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Yet again I’m at the keyboard at a ridiculous hour.  Maureen woke around 3.30 am this morning distressed, crying for her mum, and ‘wanting to go home’.  It is not easy to get back to sleep after witnessing such upset.  Her presentation this morning followed  another challenging day.  As her son said a couple of weeks ago ‘this is not sustainable’.

I’m going to suggest that my meeting with my Admiral Nurse on Friday morning becomes a  Case Conference.  I’m hoping that Chloe our main carer, and Sue our social worker will also be available to attend.  This would provide a sensible platform from which to review Maureen’s presentation, and plan a way forward.

Maureen is so confused, and frightened, at the moment that she doesn’t like me being out of her sight.  Her functional ability is so poor that I have to keep a watchful eye on what she does to ensure her safety.  If I don’t keep her stimulated she goes to sleep. This is an exhausting schedule, and it is not sustainable.

I need to ask family members to change their plans for later in the week. It is no longer sensible to have family visits so close to my trip to London. The Case Conference has to become the vehicle for deciding the best way forward in the current circumstances.  One essential component of the Conference is discussing how I can rediscover a life of my own in addition to being a Care Partner.

As I complete this post at 7am Maureen is crying out in bed that ‘she doesn’t know what to do’.  She has just joined me as I type and told me that ‘she doesn’t know what she can do to help today’.  She is also concerned that she can ‘hear other people downstairs as the radio is on’.  No-one is downstairs, and the radio is firmly off.  It’s just another day ……….

 

Dementia: Looking Back: Looking Ahead (Week 6)

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It’s been a busy week, and I think that is why Maureen has been exceptionally tired.  Attending the funeral on Monday really took its toll, as that was the first time for a year that Maureen had been in a gathering of relatives.  She clearly enjoyed sharing happy memories with some folk who she hadn’t seen for some time.

As Maureen’s dementia progresses I am attempting to keep to routines that minimise distress.  I let her rest whenever she needs to but try to steer her way from bedding down for the night on the sofa.  Sometimes these arrangements don’t always work out.  Last night a foolish intervention on my behalf led her to taking to  bed shortly after 7 pm. 

Following advice  gleaned from the Alzheimer’s Reading Room I am using mid-day and afternoon snacks to break up the day.  Elevenses and mid afternoon tea with biscuits have become milestones on what must be a very long day if you have forgotten how to fill time.

I continue to encourage Maureen to take a fair amount of exercise.  The cold weather doesn’t help on this mission, and it’s a shame we can’t seek some Winter Sun to make being in the fresh air more attractive.  I was so pleased on Wednesday when Maureen went out by herself, and returned under her own steam 40 minutes later.  We both have exercise routines that we carry out in the house or garden when we don’t fancy going far in this cold snap.  Anyone who stumbled on us yesterday would have been very puzzled.  Maureen sat adding a further pair of thermal socks to the two she already had on her left foot, and I was bent over, swinging my arm with a tin of chick peas in hand.

Yesterday the underwear crisis reared its ugly head once gain.  In Maureen’s view: ‘all of her gear had been stolen, and what had been left in its place was totally unsuitable’.  Seeing her so upset was disappointing after a really good start to Valentine’s Day.    

Radical changes of mood, and confusion appearing out of the blue, are now a  part of daily living. Thankfully, I’m getting a little better at understanding when ‘Mrs Dementia’ is in control rather than my dear wife.

I’m hoping that progress will be made on a further diagnosis on my shoulder problems today.  In the mean time I will follow the advice of the osteopath and return to tai chi classes as soon as possible.  As Maureen’s condition progresses the last thing I need is avoidable pain.  

Once again pain has woken me early this morning, and caused Maureen distress.  I’d gone downstairs to carry out some pain relieving exercises, and Maureen didn’t know where I was.  She thought I hadn’t been here all night.  There are real problems when I am out of sight, as confusion often reigns. This generally means that I’m left to pick up the pieces either practically or emotionally.

 I need some advice on how to resolve the tensions of being a Care Partner, and having some time to myself .  I will contact my Admiral Nurse today to arrange a time when we can chat over how to meet my own needs, and consequently increase my effectiveness as a Care Partner.

 

Dementia: A Change of Heart on Valentine’s Day

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Maureen went upstairs while I was following the Sky Blues on my Lap Top yesterday afternoon.  When the full-time whistle went I found her asleep in bed.  As she slept peacefully I drafted the two paragraphs that follow:

After a great deal of thought I have decided to let Valentine’s Day pass without a mention. I think it would be chancy to make a fuss of Maureen today, as this would only remind her how poor her memory is.  Despite all sorts of efforts Maureen has little idea any longer of; day, date or time.   My approach to life is to try to make every day special by following Kate Swaffer’s advice: ‘To live every day as if it is your last’.

If things go well today I may well let my 70th birthday, in 9 days time, pass us by.   Celebrating birthdays is hardly a priority as we travel on this hazardous journey:  minimising distress has to remain our prime focus.

We were both awake at 4am this morning and I mentioned it was Valentine’s Day, completely going against my earlier thoughts.  I’m glad I did as I can now add a romantic theme to the day.  We will search out old cards as we always do, and have them on display.  I have even chanced my arm and mentioned my forthcoming birthday.  Maureen is back in the land of nod now.  She may well have forgotten our plans for today when she wakes later.  We hope top wander along to the Sunday Market and find a second- hand L P that has resonanace on this special day. It’s very likely she won’t be sure who I am when I take her her first cup of tea of the day.  In fact I would put money on her asking me: ‘if I’m going to work today’: that’s a home banker!

Last week I decided that Saturday would be my day for showing gratitude. Pondering over Valentine’s Day meant that I almost forgot a new dimension for this Blog.  I want to concentrate on the NHS this week, as we both have so much to be grateful for from the Health Service.  

On Wednesday I travelled across to Hull to see Andrew an osteopath.  I am so grateful that Clee Medical Centre utilise the Pain Management Service.  On Friday I confirmed that Andrew’s assessment has been sent to our Medical Centre.  I know that by Monday morning I will be able to speak to a GP, and set in motion the next stage of investigation for the problems I’m having with my left shoulder. I have also confirmed that my recent blood tests have showed no abnormalities.  I’m very grateful that our Medical Centre is efficient and supportive of patients.

I’m very grateful for staff at the local Branch of Lloyds pharmacy for the support they continue to give to us.  Mel my Admiral Nurse was on holiday last week so late on Friday afternoon I wandered around the corner for advice, and support at Lloyds.  I didn’t realise how demanding I’d been until Liz had to let me out as I had stayed beyond closing time.  I’m very grateful to Yvonna for her support and owe her, Liz, and Rosemary an apology for extending there working hours.

In a week when some Health Service staff have been in the headlines for taking industrial action it is important to show my gratitude to NHS staff for ongoing support to us on this journey.

 

Dementia: Impermanence On Display

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‘Impermanence on display – the wild garlic is beginning to transform the woodland floor into a lush green carpet’.  This quote, and photograph, has been been shared on Facebook by Kelsang Dorde of the Madhyamaka Kadampa Buddhist Centre near Pocklington.

I hope to return to the Centre and spend time meditating in the company of  Dorde, and his fellow Buddhists,  very soon.

Dementia: Letting the Cat Out the Bag?

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Yesterday morning I wondered if I had sold the Local Authority short in a praising their services with an update ‘Economies of Small Scale’ on  Linkedin.  From Maureen’s point of view they’d perhaps gone the extra mile, and sent me an early birthday present.

Maureen had been very confused during the morning about all sorts of things.   We had been chatting, with our carer, about Hen Nights when a knock came at the door.  A young lady arrived from the Care Agency expecting to do ‘a double up’.  Maureen thought she was an early birthday surprise for me: a Stripper to match what often goes on at Hen Parties around here.  Thankfully, she didn’t encourage her to get her ‘kit off’, as the young lady had merely come to the wrong address.

It’s possible that Maureen has a surprise in mind for me on my 70th, in just over a week’s time.   I just hope she hasn’t let the cat out the bag and spoiled a surprise present.  With her confusion over days, and times, anything is possible at the moment.  Double up the mind boggles!

Dementia: Reactions amd Limitations

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I follow Teepa Snow on my Facebook Timeline, and an extract from a publication she is highlighting today is incredibly pertinent.  Maureen is low this morning; thinking her life isn’t much fun.  I need to ‘up my game’ to help her move forward.  She isn’t the type of person to share her deepest thoughts on her condition, and publicly remains in denial.   Therefore, I have copied statements from others who have a diagnosis of dementia to help me to revise my Game Plan:

How We Reacted to Our Diagnosis

Everybody is unique, and this news has different meanings for everyone. These are some of our first reactions, and some advice about how to deal with the news:

“The first thing you should know is that it’s not that bad. Everybody thinks it’s horrible, but it’s not that bad.” – Les

“I got the diagnosis and I thought I was going to die, then I thought I might not.” – Les

“Not being sure of my diagnosis… I was so scared…. I didn’t know which way to go.” – Evelyn

“Dementia… I hate that term.” – Elizabeth

“Don’t overreact. Get support. Try to avoid getting sick with worry.” – Elizabeth

“This is a major attack on your confidence. You think ‘This isn’t fair, why me?‘ It helps to talk to others who are going through the same thing — to understand how they are experiencing it.” – Gerrit

“So you have Alzheimer’s. Let’s talk about it.” – Les

Limitations

There’s no denying it, dementia — even in its early stages — is going to stop you from doing certain things. This is how we felt:

“Some of the simple things I used to do in the past, I just can’t do.”– Gerrit

“I want to do something and I can’t. I want something I can do.”– Evelyn

“Sometimes it’s good to forget about what limits you and find something else to do.” – Les

“My golf game is gone, mostly because of physical limitations.” – Gerrit

“I used to run 3 or 4 times a week and now I can’t. I miss it. The legs just aren’t what they used to be.” – Al

“Being told you should not drive is the first thing everyone thinks is terrible

My Game Plan

 

I ‘m fortunate that I have had periods of low mood so I can easily empathise with how Maureen is feeling.  Having a stroke that has led to dementia isn’t much fun for anyone.  However low mood isn’t an illness, it is an affective disorder: a reaction to environment.

During my periods of depression I have been supported by a counsellor who to helped me think my way out of an unhelpful approach to life.  Fortunately, I also came across the research of Irving Kirsch; grasped the myth of chemical imbalance, and the shortcomings of antidepressants.

Maureen does not need antidepressants to lift her mood: she needs to change her approach to her environment.  Unfortunately, she has not been offered professional support to talk about her condition.  My guess is if it was offered she would be reluctant to discuss the consequences of her stroke.  This means that it will be largely down to me to help her out of a fairly dark tunnel of despair.

My starting point is to address Gerrit’s point about ‘wanting something to do’.  I have to come up with things to do beyond housework.  My take on the situation is that Maureen needs to find more fun in her life.  What better focus for the day than helping my lovely wife to enjoy herself again.  I have one or two things in mind and I will let you know how it goes……

 

Dementia: Finding the ‘Correct’ Path

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Many describe lives where dementia features as a journey. My experience with Andrew an osteopath yesterday may just help me to find my way a little better.  Andrew has a way with words, and often answers an enquiry with just one word: ‘correct’.  My appointment with him yesterday has encouraged me to reconsider the path I have taken on our journey, and set off on the ‘correct path’ again.

Ironically I got lost on my way to see Andrew in Hull yesterday.  On previous occasions I had seen him in Cleethorpes, and he had helped me to solve the problems I was having following hip replacements.  My appointment yesterday was to seek his opinion on what was causing problems with the rotator cuff in my left shoulder.  He concluded that I needed an ultra sound scan to confirm his assessment that I have a damaged tendon.

Andrews simple message to me yesterday was to get back to my routines that he had previously recommended.  The problems I was having with my hips were eased by walking in waist high water.  Once I addressed the muscle weakness in my glutes the pain melted away.  He had a similar message over my shoulder: I need to build in stretching exercises into my daily routine until the results of the scan are known.  Then it will be a medical judgement about steroid injection or repair.

When I asked Andrew’s advice on returning to tai chi, you could probably guess his answer by now: correct he responded.  He went on to remind me of the benefits of time out from being a Care Partner, and the need for social-interaction.  I know Andrew is right on these matters: even correct!

Maureen also took an interesting path on my return from Hull.  She told me how she had resented by being looked after by carers for four hours.  Once again she had tried to send Gail off early, reminding her how she had successfully raised three children whilst their father worked away, often over-night, as a long distance lorry driver. She decided to take herself off after a small snack, and returned 40 minutes later refreshed from her walk. Her description of her route was rather vague but she had apparently made it back home under her own steam, without the need for help.

It’s been a busy few days with several additions to our normal routines.  I’m hoping we can get back to ‘normal’ now.  I hope don’t get carried away againand ignore Maureen’s energy levels as I did on Tuesday.  Carer sits on Monday, Wednesday and Friday are obvious choices for initial steps on my correct path.  Once that route has been firmly trodden I hope to make daily exercise part of my routine.  Hopefully Maureen will buy into the exercise routine by accepting my need follow Andrew’s advice.  With luck she will join me on occasions as things settle down.  The real bonus is she has seen that she is at liberty to escape for a walk whenever she likes.  Now that really is a positive direction for her to take on our journey or as Andrew would say: a correct path!

 

Dementia: Tiredness Almost Spoils A Good Day

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The sun shone on two ‘outners’ in Cleethorpes yesterday.  As immigrants to Cleethorpes we will always be ‘outners’.  Even so we took advantage of the blue sky that shone down on us yesterday morning and made a really good start to the day.  Our first port of call was Maureen’s bank to deposit her recent very small winnings from Premium Bonds. The cashiers were really supportive, and eased her through investing her winnings.

We walked further down Sea View Street in pursuit of more LP’s but to no avail.   What we used to call Glad’s Shop in memory of Clarice’s friend seemed to be out of stock. However, our luck really changed as we made our way through the Market Square.  I eased Maureen into a hairdresser’s salon for a facial with a ‘cunning plan’ in mind.  While the Beauty Therapist carried out her work I chatted to the owner of the salon.  I wanted to find out how her husband had faired with his appointment at a Teaching Hospital near Sheffield.

Pete, Margaret’s husband had a stroke at the same time as Maureen.  He was fortunate to be red lighted to the Stroke Unit in Scunthorpe for treatment.  Pete has similar problems with his vision to Maureen.  Margaret was full of praise for the approach of the Neurologist at Sheffield, and was optimistic that help was at hand.  She encouraged me to seek a referral for Maureen: Lemony, who commented yesterday, wouldn’t expect me to do anything else!

I made the classic mistake in the afternoon, and evening, of forgetting the toll that stroke has taken on Maureen’s energy levels.

We returned home from our trip to Cleethorpes and stuck to our usual routines. I rustled up lunch, with Maureen busying herself around the house.  Our siesta went well with an hours rest for me longer for Maureen.  Then I suggested that we deliver a piece of haddock we had bought for Maureen’s Aunty Clarice.  As always Maureen’s compassion outweighed her own best interest, and my naivety.

We were well received by Clarice but were soon overtaken by events.  This meant that conversations about the day before were elongated.  Reflections on the funeral took place around assisting in furniture removal, from Clarice’s house to the next door neighbour’s. Therefore, we were with Clarice far longer than expected.  Not content with this misdemeanour I went even further in the evening.

Following tea, as the music session was underway I interrupted my Songbird in full flow. She was accompanying Nat King Cole as I encouraged her to take a phone call.  Not an unsolicited call but one I had encouraged.  Maureen returned from the call exhausted, and took to the sofa shortly afterwards.

I got my just reward for my misdemeanours as I tried to prise Maureen off the sofa at 10 pm.  She was grumpy, almost hostile, from being woken from her slumbers.  Once upstairs she struggled with her night time routines. As she stood looking dazed in the bedroom, she said she was: ‘asleep on her feet’.  Not at all surprising after the day I had subjected her to!

 

Dementia: Sleeping It Off

General,

 

Well blogging at 9.22 pm is a departure.  This is not part of a new shift system, it’s a pragmatic response to a challenging day.  It might also help me to stay in bed until after dawn in the morning.

Chloe played a blinder this morning.  She arrived on the dot at 10 am, briefed from my text, and soon had Maureen at her fingertips.  I listened from upstairs as she shared her experiences of her nephew’s christening the previous day.  At various intervals I heard her pose the hair washing question.  Her persistence paid off as I heard her suggest it would be easier to do it in the shower.  I took my leave so that Maureen would have privacy, and not feel threatened by any man in the house.  Towards noon I made a classic mistake, and nearly paid the price.

Once the ‘hairdresser’ had finished her work Maureen was anxious to send her on her way.  Chloe delayed as much as possible but eventually went along with Maureen’s wishes.  This led to Maureen panicking at all sorts of levels about our plans to attend her uncle’s funeral.  It took everything I had to get us to the crematorium as the service began.

We also made it for ‘afters’ at a pub a short distance from our house.  Once in the company of her family Maureen was surrounded by relations who wanted to ‘catch up’ with her.  There were many dodgy moments as some folk inexperienced in dementia committed cardinal sins of : ‘do you remember’ etc.  We were very fortunate that Debbie came to our rescue and shepherded Maureen to safety on several occasions: she has personal experience of the condition.

Three things come to mind from this afternoon.  Firstly, Maureen remains a very popular member of the family.  Lots of relatives have fond memories of Lilly and Jack’s daughter.  Secondly, unless you have cared for someone with dementia 24/7 there is little chance that you will understand how to interact with someone who has dementia.  Thirdly, Maureen is exhausted from the support she has tried to give to Clarice this afternoon.   She’s been in bed since 6 pm, and I expect her to sleep late into the morning.  I also expect it will take her a couple of days to recover from today’s strenuous efforts to put on a good show for the sake of the family.

 

I’m now typing away, shortly after 7 am, just to show how wrong I often am.  If I could really predict what’s going to happen here I’d better start doing the lottery.  How wrong I was about Maureen being out for the count.  I’ll just give a brief timeline on what followed.

10.30 pm:  Maureen woke up uncertain where she is and very frightened.  I joined her in bed and she drifted back to sleep.

1.30 am:  Maureen jumped out of bed with a start.  She looked out of the window to see if her car is on the drive.  Then she went downstairs and opened the front door.  I hot-foot it downstairs in case I need to follow her on walkabouts.  Thankfully she closed the door and Mrs Angry is letting off steam about being confined to this house.  She wants the people who drive her car to take her out of here:  she needs to get away after the day she had yesterday.

2.30 am:  Maureen lets me know that she is a grumpy old thing, and reassures me that none of this is my fault.

6.45 am:  Maureen is sobbing as she looks through her wardrobe.  She is unsure which  clothes are hers, as she doesn’t recognise any of them.  I take the blame for putting new things around without letting her know about my latest purchases: my nose grows as I tell yet another Love Lie!

Now: Enjoying the efforts of her Tea Boy in bed.

I am not really sure how we will spend today but there one thing I’m sure of, as I always tell Maureen: ‘we’re going to have a good day today’.

Dementia: Looking Back Looking Ahead (Week 5)

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There have been some interesting developments this week on a couple of fronts.  I now contact carers by text to suggest their daily focus.  This prevents us having to catch up by whisper or sign language when they arrive.  I have already texted Chloe this morning to advise her of Maureen’s concern about today’s funeral.  If I felt Chloe or Gail needed a little more information on how Maureen has been since their last visit I can always forward extracts from my blog. The other interesting development in the last week has been playing Maureen records that remind her of younger days.

The music idea came from another helpful conversation with Yvonna at Lloyd’s Pharmacy.  She mentioned an experiment where music had been used to transform the behaviour of people with significant disabilities.  Maureen seems to be transformed back to her youth when she sings along to Nat King Cole or Frank Sinatra.  Her recollection of those old favourites is remarkable, and I can almost see her dancing around her parents’ front room as she listened to this music as a teenager.

The other benefit of rejuvenating Maureen’s interest in ‘raves from the grave’ is a new found hobby for me.  I have had great fun trawling Charity Shops for old records.  Finding hidden gems at 50 p gives great pleasure.  It’s amazing what some folk donate, and we are the beneficiaries of their generosity.

Sunday morning was been an eye opener on Maureen’s functional capacity.  Her struggle to put out the washing gave an insight on her ability to carry out one of her favourite tasks.  When a neighbour called in I was surprised she offered to make him a drink.  Unfortunately, she served him a cup of coffee that was stone cold.   A little later in the morning I caught her just before she poured boiling water onto a cup containing fenugreek seeds rather than coffee.  

There is little doubt that I need to be extremely vigilant as Maureen’s dementia continues to progress. I need to prompt her more than ever on how to carry out basic tasks.  Routines and regimentation now need to become an integral part of our lives.     We have made a good start on this front by having a music slot on most evenings.  It has also given us a lovely end to the day.  However, Maureen’s presentation is so changeable at the moment that I couldn’t predict that this new found interest will stay the distance of another week.

Footnote: The really good news – I’ve perfected the art of joining Maureen for siestas.