The Metamorphosis of Intimacy

This is harder to write than I expected.

Rosemarie and I have always been close, emotionally and physically, and like all close couples we have developed our own vocabulary of intimacy: certain words, gestures and touches acquired deep and significant meaning.

Almost all of that is gone now.

True, when I arrive at the Care Home I am often (but not always) greeted by upraised arms, an attempt to stand, and an open mouthed "Ohhh" - almost an invitation for a hug. I try to fold my arms round her and hold her but she is already losing her balance and starting to sit. There is no strength in her arms and she makes no attempt to lean in to me. She seems to slip through my arms like water.

We used to hold hands a lot. Now she doesn't so much hold my hand as limply allow me to hold hers. There is no strength in her grasp and no movement: no squeezing or stroking.

Her mouth is now a very private and sensitive area it seems. She is very choosy about what she allows to touch her lips and this presents a significant problem when feeding her. It also makes it very difficult to kiss her. She has to be calm and in the right mood.

There are also physical barriers to closeness. You can't really snuggle up to someone who is in a wheelchair, or a high-backed high-armed leather chair. The bed has padded rails to prevent her falling out and they rise like a wall between us.

She seems to actively resist attempts to cuddle her and at best does not co-operate and at worst pulls away. I don't know whether it is about intrusion  into her personal space, or a feeling of confinement, but there is something about it she definitely does not like.

So cuddles, snuggles and hugs have disappeared from the emotional menu, and intimate contact is now reaching over and stroking her forearm gently, or an occasional stolen kiss.

Well almost. She has an endearing habit of sometimes leaning over and gently kissing my forehead, or just leaning her forehead against mine. She also does this to my son and daughter and it is a sunburst of intimacy in an otherwise pretty desolate tactile landscape.

For the most part our physical relationship now is formal and chaste and would not alarm the strictest Victorian chaperone.

This disease is taking everything away from us, one bit at a time.

The Look

Saying goodbye to Rosemarie at the end of a visit is an emotionally complex event. It almost always happens after she has been put to bed and we have spent some time listening to music and eating some chocolate. Sometimes she is chatty in her incomprehensible way, sometimes she writhes around in an agitated fashion talking urgently to someone on the other side of the bed who isn't there, and increasingly she just lies there quiet and uncommunicative.

Sometimes she just lies there crying.

I hate to leave her when she is crying, and I will wait until she stops on her own (it happens occasionally) or she exhausts herself and her eyes droop.

I hate to leave, anyway, even though sometimes I really want to because I feel tense, drained and exhausted. It always seems like a small betrayal. She will be alone for several hours until she falls asleep (often not until after midnight) and I have no idea what emotional roller coaster she will be on. But I can't stay till midnight every day and sometimes it seems my presence is doing more harm than good: if she is trying to communicate something then the longer I fail to get it the more frustrated and angry she gets.

I start to tidy up and push the chairs and table back, and put my jacket on while I tell her that I need to go and I will be back tomorrow. I lower the sit up part of the bed, leave the music on and turn off the light directly over her bed so it is not glaring in her eyes as she lies back. I try to make it a bit of a ritual so she will associate it with me leaving because she usually shows no sign of understanding what I am saying.

I lean over and kiss her (if she will let me) and say something like "Goodnight my love. Enjoy the music. Sleep tight and I will see you tomorrow." She hardly ever responds.

I head for the door, open it and go through, and turn to close it.

Sometimes, particularly if she is agitated, she will be oblivious of me and talking urgently to the space the other side of the bed. Sometimes, if she has been quiet and unresponsive, she will be just lying there staring at the ceiling.

But other times she will have a distressed look on her face and be reaching out to me wordlessly, and I come back in the room, walk back over to the bed, squat down, take her hand and try to comfort her.

But sometimes I look back and she is just looking at me. I blow her a kiss. Nothing.

I cannot interpret or describe the look on her face. It is not hatred or anger or despair (I think), but neither is it peace or contentment. There is no trace of a smile. The nearest I can get is a kind of stony indifference while behind her eyes she is working something out.

Like a robot I set the switch that sets the alarm that will sound at the Nurses Station if someone opens her door, and walk down the passageway, haunted by my last look at her, and her last Look at me.  

A Year

A year since Rosemarie was admitted to hospital
A year of going to bed alone
A year of waking up alone (somehow worse)
A year of watching the woman I love disintegrate in front of my eyes
A year of making a head-shaped dent in the wall of the world
A year of small victories

This time last year I had no idea how my life would change; I thought it had changed dramatically already. Life is less frantic than this time last year, but hopelessness is its own form of stress.

I fear that for Rosemarie it has been a long, lonely and frightening year. It is almost impossible to know what is going on inside her head, but the sobbing and the agitation tell a fairly unambiguous story. Whatever is going on she is not enjoying it, and I am powerless to do anything about it.

When she was discharged from hospital we were told to think in terms of months not years. So far they are proving to be wrong, but a dark empty part deep inside me wonders at the twisted irony of it.

But every day is precious, even the tearful ones.

The main feeling I am left with is that the country is not remotely ready for the huge increase in the need for dementia care that will happen in the next decade or so. The system is already broken in so many places, and the privatisation of the NHS will make matters a lot worse. You will probably be alright if you are rich, but what kind of health insurance is the ordinary person going to be able to get to cover them against a condition that is going to affect pretty much everyone at some stage in their life, till the end of their life?

The other thing that eats at me is that as this realisation bites there will be a huge increase in the effort by the pharmaceutical companies to come up with drugs that prevent the onset, slow the development or - probably one day - reverse the condition. They will make a fortune.

It will all be too late for the woman I love.