Dementia:Who Am I?

One of my most difficult tasks as Maureen’s Care Partner is working out who she thinks I am or alternatively who I am not at ceratin times of the day or night.  We had great fun for most of yesterday with an early morning stroll around a local Car Boot Sale to set us off on sound footing.  In the afternoon Maureen sang along beautifully to Anne Murray and many others as I kept the deck well supplied with vinyl.  We managed another walk early evening checking on the activities at nearby Holiday Centres.

On our return I scanned YouTube for an episode of Dinner Ladies and we both enjoyed seeing Victoria Wood and her fellow workers at their best.  I thought we had spent the day together as husband and wife until about 9 pm when Maureen asked me ‘to take her home to her husband’.  I was taken aback by her request and explained in a low key way that she was already at home.  Unfortunately, none of my attempts to help her grasp my reality worked until sleep rescued us both from a tricky situation.

Maureen woke after about half an hour dozing on the sofa and decided to go to bed.  I managed to sleep beside her and we had a relatively peaceful night with a couple of interruptions.  Around 4 am she muttered something about ‘making chips’ and a little later on was pleased with my reassurance that she didn’t need to ‘get ready for school’.

I decided to get up around 5 am and have a shower to try to ease discomfort in my shoulder and hips. As I walked across the landing after showering Maureen appeared looking startled and then saying ‘thank goodness it’s you’.  I quickly slipped into my ‘Tea Boy’ role to help her snuggle back down in the warmth of the bed.

As Paul Martin my counsellor often reminds me my main focus as a Care Partner is to seek to minimise distress.  It’s safe to be Maureen’s DJ or Tea Boy: it’s when I’m trying to be her husband that things become hairy.  However, there is one thing that we can both be today is supporters of the Grimsby Town who are at Wembley today in the play-offs.  We can both forget our respective loyalties to Coventry City and Nottingham Forest and support the ‘Mighty Mariners’ efforts to get back into the Football League.  The outcome of the match is as uncertain as whom Maureen thinks will be sitting beside her as we follow the fortunes of ‘Town’ this afternoon.

 

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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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8 Responses to Dementia:Who Am I?

  1. Gill Butcahrd says:

    Paul. I read your posts every day .. and I so understand the difficulties of living with a partner who does not know who I am. I have hesitated so many times in writing something on your blog.. but maybe now is the time. I know however that works for me may not work for others .. because the mix of personalities is different, and the presentation of the condition varies so much ..

    About 80% of the time I am not, in my husband’s eyes, his wife. I am another friend (someone we know), a friend or former work colleague, male, female, a youngster ‘young lad’, Asian (when I am fair skinned with freckles), his ex wife (we have been married 29 years) or someone he doesn’t know at all whom he thinks may be a carer or someone who ‘works here’ (although ‘here’ is our home, and not the hotel or care home that he thinks he is living in).

    I, like you, can have a wonderful time with Rob, even holding hands, having a cuddle, laughing together, snatching the odd kiss, and then he asks me a question like ‘how are you getting home tonight’, or ‘do you have children?’, ‘do you have any brothers or sisters’, ‘where are you sleeping tonight’ or he talks about Gill his wife (a lot) … Initially these were arrows through my heart, show stopping moments in which I was completely taken aback, and where I felt so hurt that he could be thinking of carrying on like this with another woman.

    There are times when I am someone whom he really wants to be with, loves, and wants to marry .. but he has no recollection of how long we have been together, what our relationship is, or whether we are married.

    I switch several times during a day .. one minute Gill, the next someone else, the next another person … I can leave the room and return as someone else, or we can be on a car journey, he shuts his eyes and opens them again and I am someone else.

    I have had many moments when I have had to leave the room and come back in again, hoping he will see me as Gill. I have also had him phone me from his mobile to my mobile, and even although it rings next to him and I answer, he still does not grasp that the person next to him is in fact the person who answered the phone to him. I will sometimes suggest he calls, and take my phone into another room and have a conversation with him about what he is doing.

    I realise that Rob has many Gills and many unnamed people in his life, and many whom he has named. I know that the other Gill’s are because I have in the past told him that I am Gill… so he thinks that is my name. There are many coincidences in my life with the others which he finds amusing an irritating, but we manage.

    IT IS TOUGH.. .there are times when I don’t have a clue who I am (loved your image), and I struggle to remain calm because his head is all over the show (actually its usually when I am tired and stressed and that has a knock on effect on Rob and pushes his dementia to the fore) … and I say to friends ‘I don’t know who I am!!!’..

    BUT … Rob is very calm, he doesn’t get angry or irrational, and I can only put it down to some of the following:
    (1) I have learnt not to challenge him if he asks a question that indicates I am not his wife
    (2) If he asks me a question or says something that indicates I am someone else, I immediately engage in conversation as if I am that other person. I ask him questions that I already know the answers to .. ‘what is your favourite …’, ‘what do you like most about … ‘, ‘how does it make you feel when … ‘, ‘what do you enjoy doing in your spare time’, ‘What do you like most about doing that’, ‘How do you feel when you are doing that’, ‘what do you think about …’. If he asks me questions about ‘do I have children’ I will answer, but turn the questions back on him, and get him to talk. I ask him how he feels about things .. (and take the answer on the chin) .. I try to get to know him .. its a bit like going out on a first date!
    (3) Every night I ask him ‘and how has your day been today’ .. I can gauge how much he remembers, how much is accurate (very little), but it is a calm relaxed conversation in the silence of a darkened room (I say darkened but we have lights on all night now), and it can be quite entertaining
    (4) I take nothing personally. If we are cuddling up and he then says something that indicates I am not me .. I go with the flow (hard though it can be) … and engage in conversation about all sorts of things. I have to let my own hurts and pains from past experiences that trigger a hurt or angry reaction from me in my present go .. just let them go
    (5) I allow myself to cry – to feel lonely – and to empathise with myself that this journey is tough
    (6) If I snap and am irritable with Rob … I do not walk away (walking away can leave all of us, with or without dementia, bewildered and wondering what they have done wrong) .. I pause, and even through tears I will say ‘I am sorry, I am just finding things particularly tough today’ …
    (7) If I am calm, he is calm
    (8) If I contradict, it heightens his dementia
    (9) If he is distressed in the night, I will listen to him, maybe check out the place, and then return to bed to continue to try to sleep .. and with one eye open, let him pace it out .. and eventually he will rest

    MOST IMPORTANTLY .. which I firmly believe has led to Rob’s calmness … is when I know he knows exactly who I am, and he therefore trusts me, I talk to him very calmly and slowly about his condition. I use the word Dementia, and I take those small opportunities to explain to him what is happening. I also explain that he often mistakes me for someone else .. and that it is as if I have one of those rubber masks on .. that I cannot explain it, but behind the mask that is someone else, I am there. I tell him that even if he cannot see me, I am there with him in his heart, that I know what is going on, that I love him and am there for him. Sometimes he asks questions, sometimes he just listens, and usually he shows little sign of understanding what I have just said because he cannot process. HOWEVER somewhere in his subconscious he understands a little .. and that gives him peace in the times when he doesn’t know who I am … I ask him what it is like from his point of view when Gill keeps disappearing and someone else takes her place, how does that make him feel .. above all I try to get him to talk .. talk .. talk about thoughts and feelings, and don’t try to sweep the hurt away, but want him to talk about it and let it go ..

    I do hope this helps … Contact me direct if you wish (assuming you see my email address at your end)

    Liked by 2 people

    • Remember Me says:

      Many thanks Gill that is just what I needed at the moment as you will see from today’s Blog: which I’m about to revise before I post at 7 am.

      Like

      • Gill Butchard says:

        Paul… I hope it helps .. This is a tough journey … trying to be calm and caring at all times, especially when we are deprived of sleep, is perhaps the biggest challenge of all .. but be assured you are not alone .. and I for one am following a very similar path down in Kent!

        Like

  2. Remember Me says:

    Thanks Gill you are a great help as are many others who share their journey. Just drafting today’s blog for 7 am delivery: have decided to take the plunge – as you will see. What a shame you are the other end of the country!

    Like

  3. Remember Me says:

    The wonders of the net and compassion to fellow travellers.

    Like

  4. Through your journey, I am encouraged by your love an deep commitment. Thanks!

    Like

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