Dementia: A Rude Awakening

Maureen was up early yesterday morning and decided to make a sandwich for herself. Seeing her struggle to find what she needed, and satisfy her need for a snack, brought tears to my eyes. It made me realise that I have probably deskilled her by becoming the in-house chef as she has now forgotten how to make a sandwich.  This experience has reminded me of Clarice’s haunting words that ‘once someone with dementia stops doing something, they will never be able to do it again’.

For a while I became very distressed about what appeared to be Maureen’s dwindling functional capacity. At first the scene in the kitchen raised major concerns about the speed that Maureen’s dementia was progressing.  Then I realised that I had unwittingly added to her struggle.  The kitchen could not have been littered with options on every work surface unless there was choice over what to put in her sandwich.  Her problem was in choosing which cheese and margarine to use.

Making sure we are well stocked in provisions is not a priority when dementia is an unwanted intruder in your lives.  The most important thing is to have the basics clearly on display so it is easy to help yourself to a snack.  I need to keep focusing on the basics of KISSS if Maureen is going to have any chance of retaining a semblance of independence.

During the afternoon I sat in our lounge for some time watching Maureen trying to remove a tissue from a pocket in her cardigan.  It took her ages to sort out how to find the tissue as she sat with her cardigan on her lap.  She has a similar problem with zips as she can no longer fathom how to find the fastener and pull the thing up.  Unfortunately, I don’t think tiredness is the issue here it seems likely that fasteners are now a problem.

Maureen had several periods when she was ‘resting her eyes’ yesterday.  I have a feeling that sleep is her response to boredom.  If she has something to do she stays awake but housework seems to be her only time filler at the moment.  This is something of major concern as she often says she is fed up with cleaning up or doing the dishes. 

As the evening drew to a close Maureen went to our bedroom for quite some time.  She appeared to be hunting for clothes, so I left her too it.   Frustration appeared to follow and as she looked tired I encouraged her to go to bed.  Once again I had to remind her where she slept, and she made it clear she didn’t want me in bed beside her.

I slept fairly well in the spare room until Maureen yelled out our around 2 am.  She came out of her bedroom in a hurry, apparently afraid of something.  Once she saw me she seemed to calm down but promptly declined my offer of joining her in the marital bed.  She shut the door firmly and I have not heard her since.

I have already been up a couple of hours this morning.  While I have been decluttering a little more, I have also been having a few thoughts on our situation.  I have some ideas that may help Maureen to retain, or even regain, her functional capacity.  It also strikes me that having someone to talk to about her feelings might help.  As problematic as the former is, the latter is even more difficult.  I can try things, and ditch them if they are not working. Suggesting to Maureen to open up to someone about her feelings is something of a different order: old habits die hard!  

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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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6 Responses to Dementia: A Rude Awakening

  1. So much here. Makes my heart hurt for both of you.

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  2. Remember Me says:

    Two years since Maureen’s stroke now, perhaps time to count our blessings!

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  3. ebjz says:

    Oh, I just left a comment, and it somehow didn’t “take.” I’ll try again. I was saying how painful it is to stand by and watch someone struggle the way you’re describing. It is good that you’re able to step back and regain focus on your efforts to do what you can to be an effective source of support for Maureen. I know how incredibly important it has been in the last years for L to be able to confide in her dear friend whom she has now lost. She felt much freer opening up about her feelings, etc., with her friend than with her life partner whom she worries about worrying. Is there someone Maureen is close to who could gently give her the opportunity to talk about what she’s experiencing? Rather than suggesting to Maureen to open up, which could make her retreat, would it maybe work better if a conversation were to develop in what _appears_ to be an “organic” way?

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  4. Remember Me says:

    That’s a good idea an organic approach would clearly be the best. Maureen says she doesn’t know anyone here and that is a real problem at the moment. Carers are the only people she talks to now, apart from me.

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  5. Kathy from CT says:

    The dozing could also be her way of recharging her batteries. The mental, physical, and emotional strain is exhausting to her. I found that limiting the basics and keeping certain ones in sight gave Mom more “independence”. Also, Mom was always “famished” in between the 3 meals, probably because of the effort to just stay semi-aware. We gave her a small snack every 2 hours & left enough out at night to satisfy her during her hours of grazing. Blessings to you & Maureen.

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  6. Remember Me says:

    Thanks Kathy for sharing your experiences. Food for thought indeeed if you’ll pardon the pun.

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