Dementia: ‘When I Need You’

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I always try to listen to When I Need You by Leo Sayer on this day every year.  It is something I have done for the last 40 years as it is the birthday of Annette, my first wife, who died at the age of 29.  She passed away after a very brave battle against cancer.  I can recall listening to Leo on many occasions and getting great comfort from the words of the song.  So 40 years later, and once again my wife has a diagnosis that may well shorten her life.  However, the similarities in what has happened to these two beautiful people don’t just end with being married to the same man.

Annette, and Maureen, have both experienced a delayed diagnosis of  life threatening conditions.  All of the tests Annette had for her condition suggested that the lump in her breast was benign.  It was only when we insisted on a  biopsy that we were given the news that the lump was malignant.  We will never know but earlier intervention may have led to a different outcome.   There is no doubt that the options for treatment that are now available, may well have extended her life.

Maureen has also experienced delays in her diagnosis.  There is no doubt that had she been sent to the Stroke Unit at Scunthorpe her treatment would have been different.   It therefore seems likely that the damage from stroke could have been contained with the use of thrombolytic medication.  She may well have regained her vision, and dementia may not have occured.

One of the shining star in both Annette’s and Maureen’s experience has been the contribution of General Practitioners.  Annette’s G P looked after her like a daughter, and shed tears on her passing.  Dr Munjal couldn’t do any more to help us on our journey with dementia.

One other positive about Dr Jarrett, who looked after Annette so well, he supervised the home delivery of three children to my ex wife Julie.  He has sadly passed now but he was there as Juile delivered, Steven, Anna and Esme.  We are so lucky in the country to have such skilled and devoted G P’s

Dementia: Maureen Is Missing

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Yesterday evening it happened once again; I turned my back for a few minutes and Maureen went missing.  I had spoken to her few minutes or so before, as I took a call from one of my daughters on my mobile.  Five minutes later  there was no sign of Maureen in the immediate area, so I took to the car to widen my search.  I eventually found her making her way in the general direction of home.

There are many aspects of concern from this incident.   When I picked Maureen up she said she thought: ‘I had gone to work, and didn’t expect me home for some time’.  Evening was drawing to a close and light was fading.  The temperature was dropping and she was clad: in a T shirt, wearing light joggers, and shod in slippers.  She commented that few people were around to help her find her way home.

As we travelled the short distance home she was completely unaware that her behaviour could have caused any concern.  When we got back in the house she thought it was strange that the light was fading, as she thought it was morning.  She expected that we would be taking breakfast as our next meal.  Later in the evening her behaviour raised further concern.

Maureen often goes to bed early but last night she was frightened to retire unless I joined her.  This meant missing ‘Match of the Day’ and I revealed my addiction to football in yesterday’s Blog.   However, as she was obviously so tired I agreed to an early night.

The developments of yesterday are an illustration of Maureen’s current presentation.  She has no concept of person, place, or time, and her behaviour is unpredictable.  This means I have to maintain constant vigilance to ensure her welfare.  Little wonder that I need a break no-one could sustain this 24/7.   The Pussy-Footing Around  simply has to come to an end and a revised Care Plan along with a Carers’ Assessment is required as a matter of urgency.

The irony in all of this is that Maureen went missing while I was talking to Anna on the phone.  She is the Campaigns Director for a Missing Persons charity – you couldn’t make it up!

Dementia: No More ‘Pussy-Footing’ Around

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I am going to try another approach to getting some time off -respite- from my role as a Care Partner.  It is two months since I had a break, and then it took a threat to abandon Maureen before I got a chance to visit my family in Coventry.  This time I have given far more notice of my plans.

In the past my opportunities for organised respite have often been frustrated.  On occasions I have been let down at the last minute, and had to cancel travel and hotel bookings.  This has left me frustrated, and out of pocket.  It has also led to disappointment for family members who are beginning to question their status in my life.  I fully understand their concern, and upset.

Social services now have a couple more weeks to sort out Maureen’s care in my absence.  They will have to agree with her what is needed while I’m away from home.  I need a break, and to see members of my own family.  I plan to take my time off: it’s social services responsibility to ensure Maureen is cared for in my absence.

I look forward to receiving details of the arrangements that will be made while I’m away from home.  I will take legal advice if I feel the inaction of social services put Maureen’s or my welfare at risk.  I can see no other way forward.  I’m absolutely fed up with social services and our Care Agency passing the buck, and care not being available.  This ‘pussy-footing’ around needs to come to an end.

This is an early morning post because  we went to bed early.  I will be blogging about that, and Maureen going missing once again, later today

Dementia: Nine Ways to Provide Comfort

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Generally people, even family members, don’t know how to provide comfort once a diagnosis of dementia has been made.  You read all sorts of stories of family and friends not keeping touch, once dementia takes hold.  If they do ‘hang on in there’ they may be unsure what to say, or how to help.  I think the following suggestions from a book by Mara Botonis, ‘When Caring Takes Courage’,  are really helpful on this front:Get out of your comfort zone:

  1. A small gesture goes a long, long way. The gifts that matter most are the ones that help me save time and energy and are a treat that I can enjoy at home without arranging care. I don’t always have time to read a book or watch a movie, or take advantage of invites to restaurant meals or spa treatments, but these are things that I can and will enjoy. Dropping off a pre-made dinner, a CD with my favorite songs, a favorite dessert or snack, a photo album you made of pictures of us over the years, a soft cuddly blanket, fresh flowers or a selection of teas and coffees would be so welcome.
  2. Please don’t make me feel guilty. I’m sorry I may be missing family gatherings, not remembering important events or not calling as often as I used to. Please try to understand my whole world is turned upside down right now.
  3. Write me a note or an email. I can’t always talk on the phone or devote the time to an in-person visit. The times during the day when I’m “free” to socialize are usually only the hours when my loved one is sleeping and, even then, I keep watchful eyes and listening ears tuned into what’s going on around me. If you write to me, I can read it when I have time to truly enjoy it.
  4. Be patient with me when we do connect. It may seem like I’m tired, cranky, consumed by everything Alzheimer’s- and dementia-related and almost incapable of summoning the social graces to make “small talk.” Just know that I care about you, I miss you, and I’m very interested in your life. I’m just really wiped out right now. As hard as this is for me, I wouldn’t change it. Love is about being there for the other person, especially when they need you most.
  5. Reminisce with me. I willingly, loving and without hesitation put another person first for most parts of my every day. Sometimes I feel like big parts of me get “lost.” Please remind me of a time before Alzheimer’s and dementia entered our lives. You may be the only one in my life that I get to do this with.
  6. If you think I’m doing a good job, please tell me. Most days I feel like I’m failing, trying to fight an incurable disease and the only witness to my efforts is often unable to let me know if I’m doing anything right.
  7. Please don’t keep telling me about the latest miracle cure, research study or scientific article. I hate this disease as well, but right now, my focus is on the person I love that is currently living with it, not those in the future that may be positively impacted by these efforts decades from now.
  8. You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes, and I’m here every day. We’ll get through this, you and I, together.
  9. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying.

©2014, “When Caring Takes Courage.” by Mara Botonis

 One futher quote from Mara’s book:

‘even those who are are ‘swamped’ can find one thing on this list they can absorb or do’.

Dementia: Blue Sky Thinking

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I think I may have mentioned before my addiction to following Coventry City – The Sky Blues.  Any fan of my age would remember the transformation of the Club under Jimmy Hill, the bearded gentleman in the picture below.  The sad news for all Coventry fans is that the ‘Bearded Wonder’, has Alzheimer’s, and is in a nursing home on the South Coast  as he is too ill to be looked after at home.

As a ‘Coventry Kid’ my loyalties to my team continue.  On most Saturday afternoons I am glued to Sky Blue Player listening  to every move of the match.  It remains very important to me that the Sky Blues do well.  I am optimistic that another Sky Blue revolution is underway and the fortunes of the Club are moving in a positive direction.

I accept that a similar revolution is required in my own approach to life in general: some ‘Blue Sky’  thinking.  If our journey with dementia is to find a good route, I need to reign in my impulsive nature.  Long lists of aspirations just won’t help.  They will only lead to frustration, and disappointment all round.  However, if I can discipline myself to take one day at a time, and one small aspiration, then there can be more blue sky ahead.

So my ‘cunning plan’ on the rumba front, as I mentioned in yesterday’s blog is to vary my routine when I take my wife in hold.  Instead of smooching in the kitchen: just add in the odd move from the rumba.  All I need to do is watch our DVD; rehearse a few moves, and we are on our way.  As Maureen always says: ‘Slowly Slowly Catchee Monkey’.

Dementia: ‘Our Own Peculiar Way’

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We all have our own ways of coping when dementia is impacting upon our lives.  Maureen’s approach to the condition is her choice: it is her life.  If she wants to continue with her belief that she: ‘used to have some problems with her memory’; that is her right.  What would I gain by trying to ram home that she has dementia, and she should listen to the ‘experts’ on how to conduct her life?  Kate Swaffer has some harsh words on that approach and labels it ‘prescribed disengagement’.

I also have my own approach to being a Care Partner.  It has been fashioned by reading and listening to what others have to say about the condition.  I am greatly indebted to the many contributors to Talking Point who share their experiences so openly: they are the experts.

So Maureen and I both have our own approach to our journey with dementia.  That is where Willie Nelson and EmmLou Harris come in because their rendition of ‘My Own Peculiar Way’ opens the door on a good focus for the weekend, and these dark nights.

If my ballroom dancing memory serves me right Willie and EmmyLou are singing to the tempo of a Rumba.  Maureen and I fashioned a good version of Rumba in our ballroom dancing days.  As I have mentioned before we have several ‘dance floors’ in the house.  We also have DVD’s to remind us of our little routines.  Guess what I will be suggesting to shorten these dark nights?

What have we to lose by continuing in our own peculiar way?

Dementia: Not Again

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There are times as a Care Partner, for a loved one with dementia, when you think it couldn’t get any worse.  Then it does, and you think it couldn’t get any worse.  Then it does.

This has been my experience today.  Once again our social worker is ill, and her Line Manager is on holiday.  So yet again no progress on my Carers’ Assessment.  This all makes me anxious about plans to visit family in a couple of weeks.  There has been a disconnect between the social worker and the Care Agency before, and I have had to cancel plans at the last minute.   They both blame each other, and I have been left frustrated and out of pocket.

Anna my middle daughter told me a while ago that she thought she had inherited my tendency for impatience.  I wonder if her nerve will hold, if I have to cancel on her yet again.  No such problems with my mum and brother.  Their dementia means they have probably  forgotten who I am, after not being able to get down to see them for so long.

Dementia: Cold Causes Cancellation of Carers’ Assessment

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I received an E Mail from our social worker last night informing me she has a heavy cold.  Therefore, I have called off the meeting to discuss my Carers’ Assessment.  I can’t risk passing on an infection to Maureen as that would make her dementia worse.  My request for respite, so I can visit family, will now be dealt with via E mail this morning.

This is the third, or fourth, time this meeting has been postponed.  I’d better keep my poor memory on this quiet, or they might refer me to the Memory Clinic.  I wonder if that is why I keep counting back from a 100 in 7’s and looking at the calendar?  Best to be prepared; to  have  answers ready in case I am if I am referred for memory testing.

One of the beauties of blogging is allowing yourself a bit of humour now and again.  What isn’t funny is I haven’t seen my mum, and family in Coventry for a couple of months.  I feel bad about this as I can recall reassuring my dad that I would do my best, along with my sisters and brother, to look after mum.  I remember making this promise as he lay on his hospital bed approaching the end.   The photograph below is the last one taken of mum and dad together.

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I can imagine what dad would say about the delays in my  Carers’ Assessment.   He would wonder why another social worker can’t progress matters.  Dad spent his life working in the motor industry; where illness, and problems with phones, would never have delayed production.

Dad retired well before computers made communication somewhat easier.  In his role as a Senior Foreman, at British Leyland, he never had the luxury of New Technology at his finger tips.  What he had in abundance was compassion for his work force.   I worked on the shop floor of the same factory as dad: I knew his ‘men’; I witnessed their respect for a compassionate manager; they were proud to hit production targets;  I was proud to be known as Jack’s Lad.

It will be interesting to see if new technology and compassion can work in my favour this morning.  Dad will know that I will keep my promise to help to ‘look after mum’.  He knows I won’t put up with this ‘pussy footing’ around for much longer.  He often talked of the shop floor of the car industry as the ‘University of Life’:  a place where you learned how to look after yourself.  The time may well be approaching to dust down those old overalls, and call for assistance in securing my right to a Carers’ Assessment.  I can’t continue to put my health and Maureen’s welfare at risk.  The consequences of carer burnout are well documented, and result in a little more than a cold.

Dementia: ‘Baby Come Back’

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Continuing with my musical theme today I’ve just remembered going to see Pato Banton with Maureen. We went because rumour had it that members of UB40 would join him on stage.  They didn’t but when I think of one of his hits, well you couldn’t make it up: Baby Come Back.  As I have mentioned before one of the wonders of YouTube is you can always catch up on shows you didn’t make, as I have done with the picture below  This time Pato is together with Ali Campbell the real voice of UB 40:

If only it were so simple to do something about dementia.

Dementia: I’m Missing You

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Another early post with Maureen awake at 3 am, needing a drink.  

There is a recent novel: Elizabeth is Missing where the main character has dementia.  The story is about her efforts to  find her friend Elizabeth. Three people in my own family have dementia: Maureen, mum and my brother John are now missing.  Jimbo a frequent contributor to Talking Point, cleverly changed the words of a poem, Antigonish, by W H Mearns to expresses the associated agony like this:

Agony.
Yesterday upon the stair,
I saw my wife tho’ she wasn’t there.
She wasn’t there again today,
I wish she hadn’t gone away…

When I came home last night at three,
My wife was waiting there for me
But when I looked around the hall,
I couldn’t see her there at all!!

Last night I saw upon the stair,
My poor dear wife who wasn’t there,
She won’t be there again today
How I wish she’d not gone away…

Just to extend the my artistic licence this morning I am going to add a special piece of music to this Blog.  The choice is pertinent as it is UB 40 singing: I’m Missing You.  There’s no prizes for guessing the Band on the stage at the first concert Maureen and I ever went to together, at the NEC, in Birmingham.

The poem, and song, couldn’t express my feelings any better.