Dementia: Good Timing?

A change of plan a post today after all:

When dementia first came into our family my response mirrors what has happened to Maureen and I.  I recall my brother acting rather strangely after my dad died. At that time I had no idea he had dementia. When mum was first diagnosed I made some awful gaffs, and may well have snubbed those who were on the spot day after day.  I try to remember my faltering attempts to come to terms with the condition, as some family members are nowtreading a similar path.   Yes I still get frustrated; even angry with their lack of understanding.  However, I then take a breath and remember that the only way to have any hope of understanding dementia is to have it staring you in the face; day after day.

One of the things I did when mum and John’s condition progressed was to enrol on a Distance Learning Course with Grimsby Institute.  The great thing about this course was that a seasoned professional commented on my answers.  Therefore, I had an ongoing dialogue as I tried to figure out how to be with mum and John.  My motivation to study was heightened by suspicions that Maureen was going the same way.  Only a couple of other family members had any sympathy with my view; others thought my suggestions were way off the mark: unfortunately they were wrong.

I have continued to attempt to grasp what it means to be a Care Partner to someone with dementia by: reading, through Forums, and exchanging with others in the same boat.  Even so when it came to telling Maureen that I would be going to London today I sought guidance from two of my mentors.

On Friday I talked it over with Chloe, our carer; yesterday with Kate our next door neighbour.  Both have extensive experience of the condition: Chloe professionally; Kate through caring for both her mother and father.  They both agreed that Saturday evening was the time to share the information with Maureen: they may well have been right.

I gave Maureen the news about my trip around 9 pm.  For about an hour she was very hostile, and angry.  Divorce was put forward as the solution if we weren’t a team any longer.  Maureen played every card in her hand as she struggled to deal with my wish to go it alone.  At times it was very unpleasant, and I realised she was probably talking to the previous incumbent rather than me: hence the suspicion, and doubting my motives.  I reeled from the attack for a while taking verbal blow after blow on the chin.   Eventually  I mentioned my concerns about my youngest daughter beeing unwell, and refusing any contact. I told Maureen that I wanted to talk to Anna about Esme.  This seemed to ally her concerns somewhat but pushed her into a guilt trip about me leaving my own family for her.

Something like an hour and a half after I had broken the news, things moved in a positive direction.  Maureen emerged from the kitchen in a different mode, and we went to bed.

At 2.30 this morning she sang lullabies for quite some time.  She told me something I already knew from the songs: she was singing to her dad.  After several renditions she asked me what time I had to be at the hospital this morning.  She thought today was my day for a scan on my shoulder.

A couple of hours later she was in floods of tears.  She was frightened that she was going to be by herself for the day.  My reassurance that she will have Sue with her all day  eased her concerns but she still felt desperate. Many of the old chestnuts  surfaced about money or ‘losing her marbles’.  I have never seen her so upset in my life.  I’m hoping that TLC and tea will help her get back to sleep.  It is tempting to call off my trip but that would only delay developing a life of my own alongside being a Care Partner.

 

It seems likely that we got it right over the timing of the news that I’m on an away day this morning.   Perhaps, I could have played it better last night, and pointed out that a carer would be with Maureen during my absence.  My hunch was that would have led to recriminations about ‘independence and being baby sat’.  There seemed little point in giving lots of notice, as that would have added to Maureen’s distress. If I had told her earlier it is likely she would have forgotten, and I would have had to go through it all again.

Maureen’s initial response to my trip was suspicion; that was to be expected: men can’t really be trusted in her experience.   After all even I’m not a good role model on that front, as Anna often reminds me ‘you left us, and ran off to be with Maureen’.

 

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About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
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5 Responses to Dementia: Good Timing?

  1. ebjz says:

    It is all so delicate and difficult in every direction. You’re walking on eggshells at every moment, trying to anticipate and head off everyone’s reaction. The mental and emotional exhaustion must be overwhelming. You manage it all incredibly well.

    Liked by 1 person

  2. Beautiful beautiful masterpeice writing! Hope all is well with you and Maureen. Much love xo!

    Like

  3. Remember Me says:

    Thanks for your supportive comments. Unfortunately my trip to London has unsettled Maureen so it’s all hands on deck at the moment.

    Like

  4. Mary Smith says:

    Dad used to become very unsettled when his routine was changed. He wouldn’t become argumentative or angry about it, though but would withdraw and not communicate. Well, he didn’t communicate verbally, his silence and unhappy expressions were very clear communications of how he felt.

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  5. Remember Me says:

    Thanks mary it’s reaaly helpful that you are sharing your experiences.It’s really hard to work out what is going on at times. Fear of being left alone clearly figured in Maureen’s behaviour. Later anger surfaced at being deserted: again linked to fear.

    Like

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