Most people have some impressions of what Dementia is, old people, forgetting things, confusion. But there are other things not so well known- changes in taste, smell,sight and hearing, spatial difficulties – for me stair cases can look like ramps, changes in floor coverings can look like steps- but sometimes the things that are most difficult are emotional changes. The Dementia Friends course uses the analogy of two book cases, one sturdy, one wobbly. The wobbly one has books that contain facts, memories, the most recent ones at the top, going right down to childhood memories at the bottom. The sturdy one contains emotions. When Dementia shakes the book case the top books in the wobbly case fall, the recent memories are gone, but the sturdy book case contains the books and the emotions remain. You can see this in a very positive way in the end stages of Dementia. When I used to visit Father Denis in his late stages in hospital he couldn’t put a name to me and would often introduce me as his daughter. his mother, his wife – all caring roles. He would put his head down on my shoulder, something he would not have done before the Dementia but indicative of emotions of trust, comfort and love. But it works the other way too. If someone, hurts, upsets, or even traumatises me, I may forget why, I may remember why but my emotions of fear and hurt remain. I may have ‘talked ‘ the hurt out, forgiven, moved on, but the emotion never goes away. I have never been a frightened person, I have never born grudges. For me it has always been a quick burst of temper, an apology and forget it. But I have become so fearful of people that hurt me, that I withdraw completely as a defence. Mix all that up with terrible memories of the past that are so more real sometimes than anything that is happening now and I find myself, sometimes, so afraid of people. that I can’t function around them.
I can use common sense and factual knowledge and tell myself ‘ it’s only A or B, and they have their issues, and you know their issues, and they would never hurt you, but most of the time the rationality counts for nothing and the fear wins.
It affects me viscerally. One of the people in my faith community who falls into the category of someone I am unreasonably afraid of gave me a lift home alone recently, and I just about held out until the car had gone and I was violently sick in the bushes. I know this person is kind and well meaning. I feel he will hurt me, and the feeling always wins.
In this state of fear recently someone I care very much about but quite normally have a difference of opinion with , asked if we could meet and talk it out. My reaction was as if I had been asked to start being stalked. Why, because someone, well meaning and loving, forced herself on me as a way of putting something right, calling persistently at my home and bringing me presents and it terrified me. She couldn’t have known how that persistence that refusal to accept that I just needed to be left alone, to come round in my own time, linked me to memories of abuse and the inability to get away from someone who was just always there and always threatening. Past and present feelings get so mixed up with Dementia. A dear friend of mine who has Dementia says that therapies to help connect with the past can be very dangerous because some of us have pasts it is better not to remember.
The consequence of all this confusion for me is fear. Fear of people I have no real need to fear but fear that is overwhelming.
Feeling safe with people becomes hugely important to me. A friend I can giggle with because we are both Person Centered Counsellors who couldn’t remember the word empathy, friends who can just accept me as I am on a particular day, even when that is someone who is being horrible. It isn’t me, its Mr Alzheimer and when he visits and gets his feet under the table Shelagh disappears and I am just an unwilling member of his gang.
I can cope with and laugh about not being able to put tights or trousers on, or putting Baby Bio in my tea. I can cope with not being able to read books anymore, or cook, or understand money. What I can’t cope with and makes me want to buy the next ticket to Dignitas – though it is probably too late for that – are these disordered emotions that make me not me.
Because the strap line of this blog is Living with Dementia but loving life, I want to try to put the positives in as well. Last night my Quaker Meeting had what we call a Meeting for Learning. (Quaker speak for a discussion group) It was wonderful, we talked together on a very deep level. It was good to see people I hadn’t seen for ages and people I have just met and get to know them better. Then I came home with someone who had been good enough to come to the village and pick me up and took me home. Buses to the village are few and far between in the evening, and I am not good on buses in the dark, because I can’t see properly where I am and I have been known to get off before my stop and then be stranded. I absolutely rely on people being willing to give me lifts. When I got home Paul had already gone to bed, and on the kitchen table was my evening, medication, my Alzheimer’s skin patch with the top of the envelope that contains it cut off so I could get it out easily. a glass of water for the pills, the icy cold tin of gin and tonic I had not drunk before I went down to the Meeting House, and a glass for that. The TV controller was sitting on the arm of my chair in case I wanted to watch TV. Remember that old song ‘ Little things mean a lot’ they certainly do.