Category Archives: General

Dementia: A Care Partner’s Resolutions for 2016

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My resolutions for 2016 are extracted from an article by the Alzheimer’s Care Resource Centre.  I have placed one word after each resolution to remind me how to action my resolutions:

‘Here are 10 caregiver resolutions for the New Year:

Caregiver Resolution #1 – I must rest. I must take the time each day to remove myself from the situations that stress me and make me tired, and I must do so safely. meditate
Caregiver Resolution #2 – I must ask for help. I must not feel guilty for this. I know my friends and loved ones would want to assist. And for me to rest, I will have to ask for help. ask
Caregiver Resolution #3 – I must adopt a healthy lifestyle. I will attempt to get physical exercise every day if possible, if even for a few minutes. I will make healthy food choices, and I will not abuse alcohol or drugs. I will schedule and keep regular visits with my healthcare provider. walk
Caregiver Resolution #4 – I will take care of my spiritual health. I will feed my inner self through meditation, prayer, silence, reading, the arts, or in other ways I consider true. I will seek wise and professional council if needed. Buddhism
Caregiver Resolution #5 – I will take care of my emotional health. I will not walk this road alone. I will share my story with others. I will seek their advice. I will continue to enjoy hobbies and explore new ones that interest me. I will seek professional help if needed. counselling
Caregiver Resolution #6 – I will educate myself about the disease that is affecting my loved one. I will investigate accepted caregiver resources and attempt to follow recommendations. study
Caregiver Resolution #7 – I will find humor in living each day. I will not feel guilty about laughing, even when times are bad. I will try and laugh with my loved one. smile
Caregiver Resolution #8 – I will continue to see my loved one as a vital person, and validate him/her daily. I will look past the disease that is affecting my loved one and into their heart and soul. I will love them in the moment, in the now, just as they are. I may grieve at times, but I will honor the person they continue to be and my relationship with them. love
Caregiver Resolution #9 – I will see myself as a hero and value my gift of caregiving. Heroes are human and have faults and weakness. But heroes draw upon a silent strength and overcome. Often, the most heroic thing to say is, “I will wake up tomorrow and try my best.”honesty
Caregiver Resolution #10 – I will clasp the hand of my loved one and the hands of other caregivers, lifting both mine and theirs in triumph over the disease that seeks to steal. I will give back to them, and to myself, our humanity. share

May every day of the New Year glow with good cheer & happiness for you and your family’.

 

Dementia: OMG It’s A Carer From Talk Talk

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The Festive period has disrupted our normal flow of carers.  No ‘sits’ were available on Christmas or New Year’s Day.  This meant two lost opportunities for us, at a time when Maureen’s presentation has been very challenging.  Therefore, I sought some recompemse with a ‘sit’ today: I have made a mistake.

Today’s carer arrived and said she hadn’t been here for two years.  She reminded us that she had sat with Maureen for six hours on a previous occasion, when I went to London.  She has now been here for an hour and has not stopped talking.  I have left them too it.  My dad would have said: ‘she’s been vaccinated with a gramophone needle’: I have to intervene or Maureen will be sleep for a week after she’s gone.

Today’s experience heightens the need to review the role of paid carers.  This will be an important part of the review that I referred to in my post earlier today.  Maureen needs the right sort of stimulation she doesn’t need to be battered with the life history of paid carers.

Postscript: Maureen is on her knees after a verbal battering for an hour and a half.  We’ve given the woman an ‘early bath’ and sent her off shopping.

Dementia: What’s Happened To My Wife?

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I decided that I needed to join Maureen in bed at 9.30 last night as she seemed very frightened. She had taken herself upstairs half an hour previously, without a word’, after waking from dozing on the sofa.  Just to be on the safe side I followed her upstairs shortly afterwards to assist her with night time routines.  Then I went down stairs to settle for a bit of Bruce Willis on the TV.

My plans for a bit of relaxation were interrupted by the need to put the lights back on as the trip had gone on our fuse box.  I mentioned this to Maureen as I joined her in the bedroom, and she said: ‘I wouldn’t know what to do if I was by myself’.  I did my best to reassure her over this recurring theme but her comments caused me to reflect on what has happened to my wife.

Before I ‘ran off to live with Maureen’ or ‘dumped myself on her’, depending on whose version you take, she had lived by herself for eight years.  In that time she had managed her own affairs with little assistance from others.  She kept a claw hammer under the bed just to be on the safe side.

In the early days we both struggled to adopt top living together: me with a very organised woman; Maureen with a rather chaotic individual.  To some extent positions are now reversed following  stroke but Maureen doesn’t have the luxury of a sound environment in which to learn.

Maureen’s experience following stroke has major shortcomings.  Grimsby hospital missed the boat and failed to diagnose stroke.  Once vascular dementia was diagnosed Maureen has been subjected to Prescribed Disengagement (Swaffer).   She has also been at the mercy of financial austerity: initially ‘supported’ by professionals who did not understand dementia.  (This new set up on WordPress makes it difficult for me to refer back to posts that detail these complications in our lives).

2016 provides an opportunity to move forward.  Professional staff will be returning from their holidays next week.  I intend to work alongside Sue our social worker, and Mel my Admiral Nurse, to devise a strategy for the next stage of our journey.  We all need to be singing from the same hymn sheet so that neuroplasticity rings out from the rafters in this household: then my capable wife will be back.

 

 

Dementia: Lifting Mood With YouTube

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I have extolled the virtues of YouTube in several posts on this blog.  My earlier post reported on Maureen feeling down this morning; so what follows is how I lifted her mood.

Music once again provided a starting point with Bing Crosby singing a song Maureen’s dad used to sing to her.  After a few from Bing we moved onto Willie Nelson:  I have  a confession to make there; this is a Tango not a rumba!  This allowed us to reminisce about our dancing days.

Finally, I moved onto a French lesson. as I had been speaking in ‘pigeon’ earlier in the morning: much to the hilarity of my French Mistress.  Everything is ‘tres bien’ now: could never remember whether that is a grave or an acute.  Please don’t tell Mademoiselle Maureen.

Hold on it’s another false dawn: she in tears in the room next door.  Maureen is distraught that none of her underwear is comfortable.  I have eased her back to bed knowing that further sleep will help.  Once I wake her, in a couple of hours, with lunch to hand we will start again: fish pie will reach the parts other food never gets to.

 

 

 

Dementia: ‘I’m Feeling Down’

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Maureen seems consumed with thoughts over her inadequacies this morning.  There is little doubt that she is reflecting of the visit of her son, and grandson yesterday.  She is on a guilt trip because she was no longer the perfect host, and had no gifts to exchange. Yet again I’m trying to put her negative thoughts into perspective, and steer her in a positive direction: just as she has done for me when I have been depressed.

I never thought those periods of depression, and there have been several, would come in so handy. One of my tasks is to help Maureen think her way out of being down in the dumps.  I was very fortunate that lots of skilled help was on hand to help me realise that ‘chemical imbalance’ wasn’t the issue: it was how I was dealing with my environment.  The same helpers are available to Maureen but unfortunately she has never shared her life with others: so it’s down to me to nudge her along.  I am fortunate that my helpers are there in the background, to coach me whenever I need them.

I know I go on about it but it isn’t surprising that Maureen is down in the dumps:  she has seen two of her children die; experienced a damaging marriage; seen her current husband attempt suicide; watched her daughter, and best friend, waste away; had stroke and lost 50% of her peripheral vision.  It isn’t surprising that she has her moments.  It’s now my turn to return the compliment, and help her find her way out of the dark tunnel of despair.

Dementia: Spooked By Prospect of Family Visiting

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I may have thrown a further spanner in the works this morning by

mentioning that Maureen’ son and grandson are on the way.  Maureen’s initial reaction has been concern that  she :’won’t know what to talk to them about’.

Perhaps I should have stuck to  my original thinking and let it all be a surprise when they turned up.  It may take more than a bit of singing along to YouTube to ease things along until their arrival in a couple of hours

Dementia: Singing For Sanity

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Our early morning thoughts and conversations continue to fascinate me.  I’m lying awake thinking about my days machining cylinder blocks, and Maureen is remembering holidays with her parents in the Isle of Man.  Our conversation drifts in the direction of holidays and we discuss various venues.

A couple of hours later after further sleep Maureen is crying saying: ‘I don’t want to be here’.  She then says she wants to see her mum and dad so I hold her tight and she drifts back into sleep.  A little later I suggest a day out possible visiting Nottingham and Maureen prevaricates.

Now I am on the keyboard and I sneeze alerting Maureen to where I am.  She sees me and says: ‘I wondered where you were I thought you had left town -you don’t come and talk to me any more’.

There’s only one solution to all of this: let the music play.  Very soon YouTube will be blasting out some of Maureen’s favourites, and another day will begin on this ‘interesting journey’.  Singing always seems to have a positive impact on both of us, and this article from the Mayo Clinic  explains why.

Dementia: ‘The Big O’

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I mentioned in a blog earlier this morning how we enjoyed our day yesterday.  We had beautiful weather and managed a walk by the sea.  Our afternoon siesta extended well into the evening for Maureen.  This gave me an opportunity to catch up with friends, and family on the phone.  I was fortunate to reach a good friend who I hadn’t spoken to for a while.  Mr ‘O’ as he was fondly known by pupils promised to: ‘look after me’ when Annette, my first wife, died 40 years ago.  He kept to his word in many ways, and together we ran one of the best Youth Club’s in Coventry.

In the evening Maureen and I caught up with the other ‘Big O’ on the T V: Roy Orbison.  Orbison is one of my heroes from my teenage years, with so many beautiful songs.  During the Black and White Night I glanced at my Tablet as he was belting out : ‘In Dreams’ to see that my great friend Kate Swaffer had  posted her last Blog of the year.  ‘In Dreams’ and ‘Living Beyond Dementia’: it don’t get much than that!

Listen here and you will know just what I mean.

 

Dementia: Staying Positive

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I think Maureen and I have been very sensible over the last week or so.  There is little doubt that there have been changes in her presentation, and our bio social/psycho approach to dementia has paid off.  As a precaution antibiotics have cleared up any suspicion of infection, and we move on.  We had a great day yesterday: staying in bed until she wakes in the morning leads to a positive start to the day.  Consequently, I will not blog before 8 am from now on.

We are far from fans of medication, and only take tablets as a last resort.  Therefore, my hunch was that the environment was impacting on Maureen’s presentation rather than further progression of dementia.  Familiarity with some of the thinking of Irving Kirsch and Peter Kinderman will always be behind my approach to being a Care Partner.  I always try to consider what has been going on, rather than focus blindly on symptoms.

I will always be grateful to my cyber friend Irving Kirsch for his exposition of the shortcomings of antidepressants for mild to moderate depression.  Indeed, had I accepted the ‘chemical imbalance myth’ I would have been swallowing mirtazapine for the rest of my life.  My contact with  Peter Kinderman has been minimal but I will be eternally grateful for his assertion of the need to focus on environment rather than symptoms.  This way of looking at things has great resonance in our current situation.

Maureen has shared much in the last few days: opening up on her anxieties probably more than she ever has done before in her life.  It is not surprising that she is frightened at so many levels: strange men in her room; that I will get fed up of her and put her in a home; that she can’t remember the simplest detail; and much more.  None of this is a mental health issue it is a healthy reaction to dementia.  Maureen didn’t need medication she needed to share her concerns and know that she is loved.

 

Dementia: Never A Dull Moment

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Life is certainly interesting with dementia: something of a Chinese curse.  I just caught site of Maureen on the way to having a shower.  She said she needed one but wouldn’t wash her hair, as she was having it done later in the week.

I can’t remember the last time Maureen chose to have a shower: many have tried to get her into the cubicle and failed.  I am just wondering if this is an early New Years’ resolution.

One of the benefits of blogging is that our support team keep in touch with how things are going.  I have just had an E Mail from Mel, my Admiral Nurse, regarding Maureen’s presentation over the last few days.  I continue to count my blessings on the quality of support we receive as we continue on our journey.