IT'S THE INTIMACY I MISS
My husband died of Alzheimer’s disease in 2007. It seems alternately like just yesterday – but then a lifetime ago. In the end it was a relief that he was spared from the agony of the disease. It is a very cruel disease. His end was peaceful – fortunately – but it was a rocky, rollercoaster ride to get there, from the time of his ‘diagnosis’ less than four years earlier when he was 69.
The symptoms of his disease progressed very rapidly and frighteningly. I felt as if I had been catapulted into a foreign territory where I had no road map and I didn’t know the language. He was clearly lost, frightened and confused. The learning curve upwards for me was as steep as his trajectory downwards. I felt as if decisions were being made in crisis and ‘on the run’. The transitions from one level of service to the next were not seamless and I often felt abandoned, helpless and alone. It was complicated and often unpredictable.
For me . . . the key elements of ‘my story’ are, I think, love, loss and grief; quite a dose of loneliness (I think of it as ‘the loneliness of the long distance carer’) – but with a dash of resilience.
It’s a widow’s story...
Here’s one scenario:
It’s the wee hours of the morning. We’ve got through another day. I’m in bed bedside my husband. He is in the later stages of Alzheimer’s disease. We’ve been sleeping together for over 25 years. But now it’s different. He won’t get into bed unless I’m in there with him. I pat him to sleep like a child. I pen this poem in my head:
I miss the way
used to go
your arms wrapped around me
Now we lie
in our bed
I don’t sleep very well. I’m on alert in case he tries to get up and needs assistance.
During the day, he ‘shadows’ me around the house. If I’m out of sight he continually calls for me. ’Where are you my love?‘ That’s heart wrenching. He wants me near him constantly, clearly fearful of being abandoned. I can’t ever leave him at home alone.
My husband is fraught with frustration and anxiety. In frustration, he beats his head with closed fists, bangs his head against the brick wall, sheer frustration at not knowing how to perform simple tasks any more. While strategies I learnt to use, to alleviate these so called ‘behavioural and psychological symptoms’, worked to some extent, ultimately only antipsychotic medication could calm him.
Should I have felt guilty for failing and resorting to potentially harmful medications? No – I did the best I could under the circumstances. I was a ‘good enough’ carer.
He was also clearly in great emotional pain. ‘Please help me, I’m afraid,’ became his mantra. I felt helpless but to say: ‘I’m here; I’ll help you.’ It was absolute agony watching someone I loved, with whom I had a past, but now no future, struggling to make sense of a world that seemed to be shrinking and becoming a frightening and alienating place, in which he couldn’t work out where he belonged any more. I remember his poignant plea: ‘I don’t know who I am anymore.’ Looking at me and asking: ‘Where is Jane my wife?’ Looking at our children and asking painfully: ‘Is he one of ours?’
And there’s a rather taboo subject I don’t really broach with anyone much either.
It’s all rather awkward when we try to address it in my support group. It’s about what happens to a sexual relationship when one partner has dementia. I think it’s about the loss of reciprocity. It’s lonely and I miss it. Although in one of my visits to my counsellor (a life saver!) she asks me if I miss our sexual relationship. I say, ‘Not really, it’s the intimacy I miss’.
Intimacy is the giving and receiving of love and affection but now it feels like a one way street to me. I read all the stuff about the importance of touch and retaining intimacy - but it isn’t ringing true to me. My feelings are gone. I find it really difficult to retain ‘intimacy’. I’ve transitioned from wife/friend/lover to carer. I wonder whether a carer can also be a lover?
I did a bit of searching on this topic and I found this quote from a wife caring for her husband - which resonated with me:
As dementia progressed, it (their relationship) changed to ‘carer’ and ‘cared for’. I was a wife who cared, then a carer. Towards the end, there was no aspect of wife left. I was married but I was a ‘midow’ – a married widow – a term I saw on Talking Point. I feel selfish saying it, but I lost my freedom. I lost companionship. I lost support. And ultimately I lost his love as it had been – a very caring love.
I too feel selfish and somewhat guilty – these aren’t very noble feelings.
I ask, ‘Who is this person who was my husband?’
I’m reminded of the title of a poster about carers’ experiences at the recent Alzheimer’s Association International Conference (AAIC) I attended in Chicago: ‘Living with a well-known stranger’. One of the participants in her research described her caring experience in those terms. I spent some time talking with the presenter who, it seemed to me, was quite surprised at the findings of her research. I expect she hadn’t ‘been there’ herself.
Jeremy Hughes, CEO Alzheimer’s Society UK, talked in his presentation at the Alzheimer’s Disease International Conference (after AAIC) about their Carers Information and Support Program. He quoted one carer who had said: ‘I found myself hating the person I loved’.
We are told by the ‘experts’ that the person is ‘still there’, still the same at their core, but again this doesn’t ring true to me. I feel guilty treating my husband as someone different from who he was. But then he often says to me: ‘I don’t know who I am anymore’. So he feels different – unknown to himself.
Wendy Mitchell, who has dementia, entitled her autobiography, ‘Somebody I Used to Know’. She too feels detached from her old self.
Along the same lines … Joyce Carol Oates, in her book A Widow’s Story, describes the experience of a friend of hers whose husband has Alzheimer’s Disease as ‘losing a husband by slow excruciating degrees’, of her friend being in the ‘cruel twilit state of being not-yet-a-widow – … Terrible as losing a husband is, there is perhaps a worse predicament in losing the person he was; living with him on a daily basis as he deteriorates; feeling you have no choice finally, but to arrange for him to be hospitalised, (sometimes) in the face of protests from his relatives and friends who have no idea what you are experiencing’.
Overall, I found dementia care-giving really hard. It was heart wrenching, agonising and painful.
And, for many carers of people with dementia, it is hard - if only because many of the ordinary, day-to-day decisions that have to be made by carers are fundamentally ethical. Carers are often asking, as I did, ‘What is the right thing to do?’ – or – ‘Am I doing the wrong thing?’
So . . . what about things that helped me?
I certainly sought out and found literature and other resources that helped. But I was desperate to find anything which truly resonated with my experience.
Things like the book Elegy for Iris and the motion picture Iris based on the true story of Iris Murdoch’s experience with Alzheimer’s disease, as told by her husband John Bayley, helped. Also a very poignant, though gruelling to watch, movie A Song for Martin.
I didn’t want the sanitised version of how things might be. No, I wanted affirmation of my experience - that this was agony for both the carer and person with dementia.
With hindsight there are many things I would have done differently during that time. If only I’d known then what I know now! But my overwhelming sense at the end of it all was that it was incredibly hard – but surely it didn’t need to be so difficult!!
But … I did all the ‘right’ things.
I went to a Living with Memory Loss course run by the then Alzheimer’s Australia (AA), as well as other courses they offered. I read everything I could. I attended a support group that AA set up for ‘younger women caring for a partner with dementia’. It started when our partners had all recently been diagnosed. I’ve been to all their funerals now. And we kept on meeting for some time after the funerals.
I accessed services to give me respite as much as I could and was fortunate that there were some services which served us pretty well, particularly The Cottage run by Carers ACT which offered both day and overnight services. ACT Health also ran an excellent day program, ‘Still Ticking’, for men in the earlier stages of dementia which my husband attended three days a week. It enabled me to keep working part time – advice which I heeded from the counsellor I also saw regularly who strongly advised me to ‘hang on to something that is yours’. I wasn’t then defined by my caring role. I could ‘engage with my alternate self’ – a phrase I found in the literature.
One of the most helpful pieces of advice a friend gave me was: ‘Access all the help you can, you’re going to need it’. Very sage indeed. And it helped me not to feel guilty about asking for help. I often give this advice to others in my situation. The old adage: ‘It takes a village to raise a child,’ rephrased, applies: ‘It takes a village to care for a person with dementia’.
Thinking about the things that I think would have really helped at the time...
A single point of contact -a navigator – a case manager/key worker role
Clinical Practice Guidelines to refer to. Now available along with a companion guide. https://sydney.edu.au/medicine/cdpc/documents/resources/Dementia-Guideline-Guide-2017-WEB.pdf
More formal advice/consultation about advance care planning
More information about end of life care and end of life scenarios
Of course it doesn’t all end when the person dies.
I’m still coming to grips with a different life. But I feel that I did pretty well really. That’s the resilient bit.
I’ve written a couple of book chapters – on carer’s experiences and how to effectively support carers.
Jane Thompson. 2013. Ch.15: The experience of caring, and Ch.16, Supporting carers. In E. Chang and A, Johnson, Living with Dementia: A Practical Guide for Families and Personal Carers. Camberwell, Vic.: Acer Press. See a review at https://www.dementia.org.au/research/news/read/book-review-living-dementia-practical-guide-families-and-personal-carers
I was invited, in 2010, to join a network of people with dementia and carers interested in involvement in dementia research. That has led to all sorts of openings I wouldn’t have imagined. So … I’m finding meaning or ‘purpose in life’ by getting involved in dementia research as a public contributor.
Ultimately though, we’ve a long way to go as a society. I can only hope for a less frightening world for people with dementia than the one my husband experienced and one in which carers are supported to build the skills they need to support those they love.