Dementia: Having A Hard Time


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Unless there is progress on a couple of fronts today I will have to leave the care of Maureen to others for a while.  There is no way that I can sustain the current level of input without some form of additional support.

Maureen has an infection that is fueling additional confusion.  Her questions about the infection are relentless and she doesn’t want to take the antibiotic that has been prescribed.  A capacity assessment is needed to establish if the medication can be given to her covertly.

Her sleep pattern is making our lives chaotic and I am exhausted.  It is fortunate I cancelled my trip to Coventry today as sitting on a coach for 8 hours would have finished me off after the events of last night.  We got caught in a shower during an evening walk and Maureen berated me for not being able to run ahead get the car and save her from a soaking.  She has forgotten that running is difficult and not advised following bilateral hip replacement.  An hour later things got even worse when Maureen decided that she needed to ‘get home to her husband’.

It took me a while to find suitable clothing to track Maureen as she made for ‘home’.  She was walking at a pace I could not match and her image was fading as the distance between us grew.  I couldn’t get my mobile to function and my concern began to grow as she disappeared into the darkness.  I yelled out ‘Maureen’ at the top of my voice and she stopped walking and I managed to catch her up.  As always on these occasions I was immediately her husband and she asked me where I’d been.

On our return home my status changed when I suggested it was time for bed.   Maureen made it clear she didn’t want a man in her bed.  Once again my rest was short lived as Maureen decided to search for something in her bedroom at 2 am.  After half an hour I decided to chance my arm by knocking on her door to be told that ‘they had stolen one of her blankets’.  It took me a while to find the missing bedding but Maureen had forgotten she needed it by then.  Then I joined her on the marital bed for an hour or so  getting up at first light.

At 4.30 am I heard movement upstairs as I tidied up the kitchen.  As I met Maureen on the landing she said ‘can we go home today?’  I dodged her plea with excuses about being too tired to drive very far and used my stock phrase: ‘we’ll have an easy day around here today’:  how lovely it would be if our lives were so simple.

Maureen wants to see the G P this morning to gain an understanding about her infection and why she needs medication.  I need to ask our social worker for a capacity assessment concerning medication as the constant battle over tablets is exhausting.  We also need help from somewhere to try to establish reasonable sleep patterns otherwise some form of temporary separation beckons.

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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4 Responses to Dementia: Having A Hard Time

  1. Amanda says:

    Oh Paul you sound utterly exhausted, the situation is clearly not sustainable. I hope you find support today. How would Maureen feel about convalescence whilst she gets over the infection? What I mean in real terms is at least a week in respite, but convalescence sounds so much more caring especially as she is poorly. I’m aware I’m saying too much here. Apologies up front, I don’t mean to upset either of you.


  2. I hope so much that you’re able to find the additional support you need and that someone comes through to help you during this very difficult time.


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