Merlin Syndrome

There is so much to work out and understand.

It became obvious really early that there is no manual for this, and the considerable experience of the eminent consultants and specialists produced only the sadly pronounced advice that every case was different. I rapidly became not just the expert on R's condition but also a conduit for data that were enthusiastically hoovered up.

I began to look more closely at what was actually happening in the hope that this would give some pointers on how to deal with the problem.

It is evident that a lot of the things we take for granted, and were learned with great pains in our childhood, are being steadily forgotten as the disease progresses.

Major among these is the deterioration in spatial awareness. This sometimes manifests as poor balance but the problem goes deeper.  R has no internalised image of where her body is in relation to surrounding furniture, walls, doors and other objects. If something is in her field of view she may be able to recognise it and define her own position relative to it, but the moment anything is out of her sight it ceases to exist or she has no concept of where it is.

So the simple act of sitting in a chair is a major undertaking. If she is looking at it and can see it then she will sometimes start sitting where she is (and where the chair isn't). If she turns so her body is in a position to sit safely she can't see the chair and panics that there is nothing behind her. Reversing her until the backs of her knees touch the chair may work, but that sensation is not necessarily associated with the certainty in her mind that what she is feeling is part of a chair and it is safe to sit. A structure of rails has made sitting on the toilet less of a heart stopping adventure but there are still moments where it all goes wrong.

She also has major problems with holding things. You and I can hold a mug full of tea and carry on a conversation or watch TV and a small part of our brain is monitoring the mug and keeping it level. That is a skill which was learned, and can be forgotten. Even two handled mugs do not help. Similarly with spoons full of food. There is an added complication that a spoon or fork is recognised to some extent for what it is, but the use of it is not information that is immediately available. I have seen R pick up a fork by the prongs and attempt to use the handle to pick up food. She knows something is wrong but gets very distressed trying to work out what.

Other previously reliable tools are disappearing fast. Pointing does not work. I point at something and she will grab my finger. Concepts such as 'over there', 'behind you' or 'here in my hand' mean nothing, and I can hold something directly in front of her face and she cannot see it. I am developing an entire routine for identifying something and guiding her to it. It is like trying to learn a new language in the middle of a battle.

Awareness of self and other is also disappearing. When I am doing up her jacket she will be aware of what is going on and seem to want to help, but she grabs my sleeve or my jacket and starts manipulating it.

I also think one side of the brain is more affected than the other, although the results of the last MRI scan did not identify any differences. Anything in the left hand side of her field of vision is much more difficult to see, sometimes to the extent of being invisible.

Such spaces as are visible seem to be defined by their edges. So, for instance, if she has a mug in her hand and is putting it down on the table where there is a plate, she will inevitable try to put it down on the edge of the plate. If the table is clear she will often try to put it down frighteningly near the edge of the table.

This is all an enormous challenge to handle. Sometimes I am lucky enough to find a form of words that communicates as an offer of help without the implication she can't manage, but this is very rare. She is acutely aware of what is happening and understandably she has a limited threshold of being able to accept someone pointing out when things are going wrong.

The best I can hope for is to be able to think far enough ahead so that my help and support come across as a natural part of the universe rather than an intervention.

There is also the entire topic of language, but that deserves a post on its own and must wait for next time.

Challenging Sunday

Bathtime was becoming a challenge. R had very poor balance and as her spatial awareness deteriorated the risk of slipping made the whole proposition rather frightening. Then the magnificent people at St Thomas turned up with all sorts of toys including an electrically operated chair to lower her into the bath.

Bathtime became fun and exciting for her. It was still difficult getting her to sit in the middle of the seat and at the back, but it was worth the effort. She was keen to have a bath every day if she could and she was all smiles. We had a strange diversion for a while when she was convinced other people were coming into the flat and using her bath chair and she never got to use it but we got past that eventually.

There seems to be a residual feeling of upset though -  maybe it is just the novelty wearing off - but it seems to be being absorbed into the fabric of the problem.

For instance, I have noticed that she is actually a lot quieter in how she speaks and this can cause problems. I leave her to enjoy the bath and leave the door slightly open. I check her every few minutes but keep listening anyway in case she calls: I turn the tv down and make sure there is no other noise.

But still I seem to not hear her. I go back into the bathroom and she complains she has been calling for ages and I have ignored her.

There is also the tricky question of how much I leave her to wash herself and how much I (offer to) wash her. A regular rejoinder to all sorts of offers is "I am NOT a baby" (delivered in a clear firm voice as always when she is angry).

I usually offer to do her back for her (which she likes) and can then usually get away with doing under her arms (which she seldom does) but this Sunday my failure to hear her call set an icy tone for subsequent interactions and she kept complaining that she was itchy and that I had put salt in the bath.

I have noticed over the last year that she has grown much more sensitive to pressure on her skin of any kind and often interprets it as itching. On this occasion it may just have been the feeling of the water or the bubbles of the bubble bath (used quite unremarkably on previous occasions).

We then seemed to enter a state of perpetual upset where everything was negative and wrong. This breaks my heart. Whatever I do only seems to make things worse. Speech or silence, going or staying, grovelling apology, jokes or light hearted chat - nothing works. And what is even worse, she rapidly forgets what it was that set off the upset, which she seems to find even more distressing, and she is likely to drag things out from the remote past or even make something up.

To prolong the problem Sunday was also Hair Wash day. We don't have a shower (and she wouldn't be safe in one anyway) so we use the sink. A few months ago we had a disastrous session where she got shampoo in her eyes and now there comes a moment in every hairwash where she remembers this and immediately thinks it has happened again (even if I haven't used any shampoo yet). She gets angry and it becomes a rush to get it over with. I then tried to blow dry her hair for her and she stood up after a couple of minutes and walked off saying that she wanted a proper hairdresser to do it.

I am wondering whether I am the right person to be doing this anymore. Is there too much embedded history now and every attempt will be a replay of all the bad bits of the previous ones? This is distressing for both of us. Other times she tells me how kind I am, but we seem to be filling up our lives with an increasing number of NoGo areas. I can take her to the hairdresser once a week to get her hair washed but if I try to get someone else to wash her..... that is somewhere I really don't want to go yet.

This seems to have become a very negative post. Sometimes it is hard to keep looking on the bright side.

Jumping Ahead

It goes so fast.

I thought I was going to be able to blog regularly and keep everything in sequence but that was always a vain hope. So I will start where we are and do everything in stylish fifties Hollywood style flashbacks.

We are in the Derbyshire Dales in the charming cottage of an old and valued friend. We have been coming here for nearly twenty years now to what is always a warm welcome and a relaxing time. C is a retired Head Teacher and subsequently Foster Carer and she and R have shared much so they can still talk and relive the past.

Less so than previously though. Once they would disappear into the garden or the kitchen or wherever and I would hear laughter and animated conversation and would be left to my book or laptop, but the last few visits have been overshadowed by R's condition and managing her needs. She gets bored and distracted very easily and even though this is like a second home it is not our flat in London and this seems to make her more uneasy.

Today we went shopping and she bought some new towels (Bath Chair blog coming up will refer) and some plants. We ate in the cottage. We used to eat out a lot but it is not practical any more. R has such trouble with cutlery and managing the food that it tends to end up all over the table and down her front. This is just about manageable in a domestic setting but has severely limited the places we can go out to eat and the food she can cope with. 

She got upset around ten o'clock (not sure why) and insisted on going to bed. This means I have to go to bed quite soon because she will be up at six in the morning and wanting tea and stimulation. 

Tomorrow if the weather is halfway decent we will we will be driving over some moors near Sheffield. Some of the time R really enjoys going out for drives and with a bit of luck tomorrow will be one of them. 

I hope this is not another island post surrounded by acres of empty time.