Category Archives: General

Dementia: In Like A Lion Out Like A Lamb

General,

It would be fair to say that the prospect of seeing her G P yesterday sent Maureen ‘off on one’  Ten minutes before we left for the appointment she was going to sort out her G P.  After all ‘why did he need to see her when she wasn’t ill?  Why was he wasting his time on her when people were dying?’  The lion was roaring as I nudged her into the car and helped her to fasten her seat belt.

Once with the good Dr Munjal the lamb came on the scene.  Mrs Angry remained in the car as Princess Charming stole the show.  Rav is superb with Maureen he treats her like an elderly relative and they shook hands even embraced as we left his consultation room.  We had both received good news all Maureen’s tests were in order, and my scan was set to take place early next month.

We both had a good afternoon siesta.  Then a bizarre exchange took place that is worth summarising.  Maureen announced that she couldn’t possibly go out for a walk as she had no suitable clothing.  I enquired what she needed and she replied everything.  Any solution I suggested to her clothing issue was rebutted by one difficulty or another: too tired to go out, no money, no proof that she has money in her account etc etc.

As I walked alone to buy some milk from a nearby shop I reflected on my approach to the clothing shortage.  I am beginning to think that I need a complete change of strategy: rather than trying to solve problems perhaps all I need to do is empathise with her distress.  I have spent hours trying to find suitable clothing to no avail.  Suggesting Maureen joins me on a shopping mission is equally unproductive. I am going to empathise from now on rather try to find solutions and see where this leads.

The Lioness came out roaring with delight in the evening as I called on Bing (Crosby) for support.   Whenever I put on the man YouTube you can  feel her joy as she remembers her dad singing this little gem to her.  Maureen then mentioned her fondness of Dean (Martin), and we sang along to some of his renditions.

When hunger took its toll I put some vinyl on, and we moved from YouTube in the lounge, onto vinyl in the dining room.  We  called in at the the kitchen, on the way, where the singing and dancing chef was in his element.  Following an evening meal our  ‘Singathon’  continued for a couple of hours.

 Anyone seeing ‘Maureen in Song’ would be amazed at the transformation.  Her enjoyment of the evening was so profound that she said we should have such evenings more often. The vinyl ranged from Johnny Nash, through to the Hollies, and finished with John Denver.

By 9pm the poor Lamb was exhausted by her efforts and had to be eased into bed.  She clearly struggled to know who I was after my role as a supporting act to so many stars.  That may well have been why she gave me a peck on the cheek, said goodnight, and shut the bedroom door firmly behind her.  However, my ‘cunning plan’ to join her at the first available opportunity worked.   Once the coast was clear, as soon as I heard early morning movement, I slipped into bed beside her.  What sort of Alpha male wouldn’t come to the rescue of Lamb in distress?   Anyway it’s rather cold, by yourself, in that back bedroom!

Footnote: When I returned from buying milk Maureen appeared to be contemplating making an ice cream sandwich.   She had a number of visible options for a sandwich filling but decided in the end she wasn’t hungry:  shame really as her concoction might have made an interesting addition to my Favourite Dishes page. 

NB. I must change the kettle today before Maureen has an accident.   It was boiling away with the lid off again yesterday!

 

Dementia: Exceptional Support Services

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I cannot fault the support I receive in my role as Care Partner to Maureen.  This morning I pressed the red-button in an earlier post to indicate an emergency.  Before 9am I received a return phone call from our G P at Clee Medical Centre.  He has arranged a joint appointment at 11.30 am to monitor Maureen’s presentation, and progress my shoulder problems.  I have also received a return E Mail from Sue, our social worker, to progress the Case Conference, and suggest a home visit next week to review further support.  As my dear old dad would have said ‘you can’t be fairer than that’. We continue to count our blessings for the support we receive:  gratitude will of course be duly shown on Saturday’s Blog! 

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!