Category Archives: minimising distress

Dementia: ‘Think Of Yourself’

minimising distress,

Image result for Think of Yourself Picture

During our adventure yesterday the Activities Organiser at my mum’s Care Home begged me to think of myself.   I have known this woman for a long time as she was a mature student at a local Community College where I managed adult learning opportunities.  She asserted that I needed to look beyond caring for Maureen: that something would happen that would mean I could no longer look after my dear wife.

Our visit to see my mum followed calling in to see my brother in his Nursing Home.  He only woke for a brief period of time as we sat by his side doing all we could to gently wake him.  As always he treated us to his beautiful smile and chuckled briefly before he drifted back to sleep.  Perhaps his morning shower had worn him out as he seemed exhausted; continually yawning, as he slumped comatose in his favourite spot in the dining room.

Maureen loved seeing my brother: remembering our last visit when we both danced holding his hand.  Unfortunately, we couldn’t put on a similar performance yesterday but we managed to give mum her usual treat.  She campaigned for a trip out as she always does when you go to see her.  The Ice Cream Man was not on duty at a local park but the Cafe was open and she assured me that her kit-kat special would not spoil her dinner. When I took her back to her seat in the Resident’s Lounge she begged me not to leave her, so I told the familiar white lie that I would be back shortly.

When I look back at what I did next I’m  not sure who I was thinking of – it certainly wasn’t Maureen.  We made it to a local pub on time where I had arranged for her son to meet us along with her granddaughter and son in law.  Their arrival was staggered and Maureen had some special time with her son before the others arrived.  She clearly loved seeing them all and the attention she got from one particular friend in the pub.

Maureen is worn out and very confused this morning.  I will never repeat what I coaxed her into yesterday.  We are both too old to endure long car journeys and busy schedules in Coventry or anywhere else.  It isn’t myself I need to think about it is both of us!

Maureen is not at all pleased with me this morning.  She thinks I’m conspiring to get rid of her and stealing all of her possessions.  I’m not pleased with myself when I reflect on what I coaxed her into yesterday: particularly how little time we spent with my brother and mother. How can I justify rushing way from my nearest and dearest, who both have dementia to meet with other family members?  If that had happened to Maureen I would have been fuming!

There is one positive outcome from our adventure yesterday: it has strengthened my resolve never to put Maureen into a Care or Nursing Home!

 

Dementia : A Nightingale Sang

minimising distress

Maureen loves Nat King Cole and would sing the above number word perfect.

How wonderful if another Nightingale: Dr Dan gives us both something to sing about:

Dementia: Positive Risk Taking In PJ’s Paid Off

minimising distress,

Image result for positive risk taking picture

When Maureen woke in despair yesterday I knew I had to pull out all the stops to try to shift her mindset.  I went for it throughout the day and my positive risk taking paid off with a beautiful climax in the evening.  It took me a while to decide whether to go for it as Maureen sat in clothes that were all inside out with pants on top of her pyjama bottoms.  However, I thought in for a penny and got more than a pound.

Maureen is transformed this morning after seeing her aunt and uncle.  She can’t stop thanking me for taking her to see them.  Seeing her with those who loved and looked after her as a little girl is priceless.  Listening to them they reminisce about the good old days is heartening. The amazing thing is my misreading of a crucial matter – I was frequently trying to steer the conversation away from Maureen’s parents for fear that her relatives would confirm they were dead: Maureen assures me she was on the same mission!

Wearing PJ bottoms paid off earlier in the day when Maureen had popped out by herself.  I heard the locked front door open as I was in the bathroom.  Maureen had scarpered before I could get some clothes on but I soon found her a short distance away being steered back home by some locals who had spotted her unusual attire.  I caught up with them as they were about to phone 101 about the lady with a key in hand who was looking for ‘her friend Paul who would have her dinner on.’

I’m not sure if there is a moral to this story apart from you never know what you are going to get with vascular dementia particularly if you are dressed appropriately.  One thing for sure we need to pop into the local Spa Store more often as the assistants there gave Maureen such a lovely start to the day yesterday.  They helped her to choose which cordial to buy and gave her so much more.   As she offered them a £10 note she had them in stitches as she bantered with me about all sorts of things.

All staff at our local Spa Store are dementia friendly and such support in the local community makes a real difference to our lives.  I’m just wondering if we pop down there shortly if it would distract Maureen from her current focus of us ‘getting a move on or we will miss the bus to take us back home.’

Dementia: ‘Nobody Loves Me: I’m Such a Nuisance’

minimising distress,

Image result for I'm Such A Nuisance PictureWhen Maureen woke early this morning she was very sad feeling unloved and a nuisance.  She was beside herself with her loss of independence and her reliance on others. Her feelings are not surprising when you reflect on such a capable woman now being limited by dementia.  I hope my assurances that I loved her and would do all I could to help her rediscover her capabilities and enthusiasm for life had some impact.

Our Circuit Training went well yesterday and a similar approach is needed to address Maureen’s sadness this morning.   If I pitch it right I have no doubt that Maureen will see glimpses of her old self.  Dementia will mean that she forgets those brilliant moments when she shines but the feel good factor will remain.  Her performance on walking around Royal Court by herself yesterday was remarkable.  She stopped at a lamppost outside the house of a new found friend.  I would speculate that she wanted another conversation with her friend from Durham who she had a lovely chat with the other day.

Her performance on walking around Royal Court by herself yesterday was remarkable. She stopped at a lamppost outside the house of a new found friend.  I would speculate that she wanted another conversation with a lady from Durham who she had a lovely chat with the other day.

Circuit Training will take place again today along with another cunning plan.  With luck, I will persuade Maureen to visit a nearby Auntie who looked after her when she was a young child.  Maureen will feel, and remember, the love of this elderly couple and I will get to hear a more about my beautiful wife when she was a little girl: a BOGOF approach to reminiscence therapy!

Just had the first smooch of the day in the kitchen to this one from the Brothers Gibb:

I think the answer from both of us is an emphatic YES.  What I continue to wonder is if Maureen will ever let me lead?

 

Dementia: A Headless Chicken?

minimising distress, ,

Image result for Rushing Around Like Headless Chicken PictureI had a stark reminder early this morning that I’m trying to do too much.  Last night I was so exhausted that I went to bed at half-past eight and left Maureen to her own devices. Five hours or so later I found her sitting on the sofa looking terrified and desperate to relieve herself but no idea where to find the bathroom.   She was so relieved in all sorts of ways to see me, particularly as there had been ‘a strange man in the room again’.

It is painfully obvious that I’m not able to cover all bases at the moment.  I’m trying to solve too many issues and wearing myself out often running around like a headless chicken.  Tiredness kills when you are a driver: it causes distress when you are a Care Partner.

The bookcase in the lounge has now predominantly become Maureen’s space with lots of opportunities for cognitive stimulation.  I need to summon further support from Occupational Therapy to see how the remainder of the house can become more supportive of Maureen’s needs.  However, too many changes could well cause further confusion and a focus on our lounge towards the end of the month would be sensible.

Maureen’s refusal to engage in personal care or take her medication continues to cause concern.   All carers have been alerted to the need to try and get Maureen to shower and change her clothes.  The medication issue is something I will need to discuss with her GP. The progress on these issues will be reviewed with our Key Worker when he visits on Friday.

The ‘headless chicken’ is also painfully aware of the stiffness in his body after a consultation with a Fitness Instructor at  Cleethorpes Leisure Centre yesterday morning.  He has now decided that hydrotherapy is preferable to Tai Chi and will be walking on water later this morning!  Cue Loudon Wainright:

Footnote: Just had a lovely moment after seeing Maureen looking tearful.  When I asked her why she was looking so sad she said:  I’m going to miss you when I go home.’

 

 

Dementia: A Marathon Of Compassion

minimising distress, ,

Image result for Compassion Dementia Picture

Yesterday turned into a marathon and it was almost 5 ‘o’ clock before we were able to hit the sack this morning.  Following an evening telephone conversation with a G P, I decided to take Maureen to Grimsby Hospital.  The waiting room was busy on arrival and packed during certain times during a long night.  At the end of our stint, I’m not sure how much had ‘cleared’ but I’m hoping that laxatives will return things to normal in the next few days.

I would award Grimsby Hospital top marks for being dementia friendly.  From the moment we arrived at reception until Maureen was discharged she was treated with dignity and respect.  She was never once challenged when she felt the need to explore her surroundings as she waited for examination, treatment or medication.   In fact, staff went out of their way to reassure me that her presentation never once caused them any concern.

Clee Medical Centre have also been extremely supportive in the last 24 hours: as always.  I have received almost instant responses to my telephone calls with advice that has always been person-centred.

We are not out of the woods just yet and Sleeping Beauty is catching up as I post.   It has been good to have 5 days of Respite as I don’t think I would have got anywhere near a personal best yesterday without it.   As a fun runner, I decided a half marathon was far enough.  Maureen went well during the ‘race’ as her compassion shone through.  Despite her discomfort; she consoled distressed children, chatted with anxious parents and entertained fellow patients with her repartee.

Dementia rather than personal choice is often calling the shots in our lives.  However, with the compassionate support that is always on offer in this area, we will always try to give it a run for its money!

N.B. I have decided to break my new regime and post today so I can copy the above to Grimsby Hospital PALS and staff at Clee Medical Centre.

Dementia: It’s Good News Week

minimising distress, , ,
  • Maureen will be overjoyed this morning with good news from Girl Monday.
  • The Best Interest Meeting is now only days away.
  • Spring is here and Maureen wants to be out in the fresh air.
  • Maureen went for a walk on Saturday and Sunday and found her way back home.
  • The repainted green doors are helping Maureen find her own way to the bathroom.
  • Reorganising our bookcase is providing another creative outlet for Maureen.
  • Professional advice is pending to make our house, even more, dementia friendly.
  • I am learning to sleep when Maureen rests thereby easing my sleep deficit.
  • I have found a Care Home that may be suitable for a Respite Break.
  • Family members are reviewing their availability for providing additional support.

I had a great day yesterday watching the Sky Blues win the Checkatrade Trophy on TV. Coventry is often seen as the Phoenix rising from the ashes.  Perhaps dementia has been our blitz and we can find a way to rebuild our lives.  How fortunate that Thursday offers an opportunity for such discussions.

Oh, I nearly forgot about the Roller Coaster:  it had a day off yesterday!

Dementia: We’re Almost There!

minimising distress, Uncategorized

Image result for We're Nearly There PictureI’m optimistic that within a month there will be some good news to report from this neck of the woods.  Our difficulties have originated from the national approach to vascular dementia: there is no treatment available.  This means you are almost left to find your own way on this hazardous journey; even if your personal history adds a layer of complexity to your route.  It has taken a while but there is now recognition that being cast adrift is hardly a person-centred approach to care in Maureen’s situation.

There are lots of people working behind the scenes to put in place arrangements to provide the support that is needed as we attempt to address the ongoing impact of changes within the structure of Maureen’s brain.  This is taking place at a time of dwindling resources; when there is a  relentless demand for services.  I would like to extend my sincere thanks for the hard work that is going in so many quarters to create a level of support that will attempt to minimise Maureen’s distress and help us all give dementia ‘a run for its money’.

Dementia: Calling In Sick

General, minimising distress

Image result for Calling in sick picture

I feel dreadful this morning despite following advice on how to handle this infection.

I’m going back to bed and will try to rest for the remainder of the day.

Thankfully, Chloe our most experienced carer will be here at ten.

 

Dementia: Seeking A Best Interest Decision

General, minimising distress,

Image result for Best Interest Picture

I contacted Single Point of Access -Focus at 2.30 am to request a Best Interest Decision this morning on her future care and accommodation needs .

Maureen has kept me awake for most of the night because she has an infection.

I will seek an appointment with her GP this morning to try to prevent a heavy cold becoming something more serious.

A home visit may well be necessary and will be available if needed: we can always depend on Clee Medical Centre.

Our social worker is not working today so I have requested the Duty Manager to facilitate the Best Interest Decision.

To put it mildly, I am rather tired: no Care Partner can sustain being on duty 24/7.

Footnote: Posted a little earlier this morning in a quiet moment as Maureen sleeps.