Ann Kennedy: 'Elder Care' means serving a life sentence for a crime I didn't commit

My wish to move forward in ageing to the end in a comfortable, wholesome fashion is merely an aspiration now I have entered Elder Care

Ann Kennedy and her dog Squirt: 'As a 70-year-old, I am now pitched, with no choice or consultation, into the section run by the HSE community called Elder Care.' Picture: Garry O'Neill

We have all lived reasonably well if we get as far as to be considered "old". Geriatricians refer to people in their 60s and 70s who are relatively healthy as "young old", so therefore I have four years left of youthfulness in older age. 

The writer Gene Cohen refers to people in their 50s to 70s as being in the "liberation period" of their lives, a time often of retirement, of innovation and experimentation.

I don’t feel liberated, though. Believe me, I do not.

I hope I can move forward in ageing to the end in a comfortable, wholesome fashion as most would want. Presently, this is merely an aspiration of my own making. A great inhibiting factor is that I appear to be the only one who believes in my right to move forward in such a fashion.

The TV and radio presenter Brendan Courtney has recently spoken of being served with notice that his mum needs full-time care. As he points out, it will be a battle far too many in Ireland must endure, and the push towards nursing homes from the health authorities is very strong. 

We hear a lot now about our ageing population, about the pensions "time bomb" and about the crises in homecare, nursing homes and in hospitals, where A&Es are consistently dealing with a much higher volume of older people than they were designed for.

Push towards nursing home care

The push towards nursing home care is fear-based, as I fully understand. Recent times point to a national anxiety in the growing ageing population of being put in nursing homes against our wishes. Personally, my anxiety is high.

The TV and radio presenter Brendan Courtney has recently spoken of being served with notice that his mum needs full-time care.

I know nursing homes. I worked in elder care from the time I left school and during and after art college. After that, I taught creative practice in nursing homes. 

I also visited St James Geriatric Unit every Thursday evening as part of the voluntary visiting programme begun by Friends of the Elderly. 

Side by side with me was a contemporary at the time Dr Des O’Neill, a learned scholar in all things ‘geriatric’. Now entering the same zone as myself — and many of his patients — he was a handsome young student I remember well.

Waiting to die

During my time working in nursing homes, I found it hard to shift the mood of the residents. They understood where they were, why they were there and there was a sense of foreboding due to the ultimate realisation that they were merely waiting to die. It was the shock reality of "waiting room syndrome".

Although becoming very unwell with Crohn’s disease, I fought through my discomfort to travel from my home in Wicklow to the Crawford College of Art in Cork for two years, undertaking study on the course ‘Arts and Empowerment’. 

I needed to bring some of that empowerment back to my older fellow citizens and I believe this course gave me that ammunition that creative practice alone could not fulfil at the time.

Nursing homes are distinct environments, they are totally unhealthy and mostly unnecessary. I saw amongst my students, intelligence, feistiness, and engagement second to none. 

The only thing these individuals lacked was the enablement to live well out in the community. Their fragility in the main was mobility, dexterity and medical management that did not require a hospital setting.

Now, however, I am having something of a crisis in my zone designate of "young old". As a 70-year-old, I am now pitched, with no choice or consultation, into the section run by the HSE community called Elder Care.

It is not a continuum of care from the Disability Services, or indeed Chronic Diseases, both of which I have previously been treated under.

Perceived as old

I have been selected to be perceived as old. If you read the terms of reference for this bracket it is clear — this means requiring help in getting in and out of bed, dressing and undressing, personal care such as showering and shaving. 

Although on the website it offers physiotherapy and OT, believe me, these do not really exist — the programme for elder care in the community is purely aspirational rather than a reality.

You cannot ask to be moved out of Elder Care. You are assured of “highly professional staff” offering holistic care in exemplary fashion.

The language and terminology around Elder Care, the misapplication of adjectives, adverbs and emphasis can leave you in a sort of twilight zone where language does not at all mean what it meant when you were young. 

In Elder Care, a very upright very hard, very uncomfortable chair is noted as a “highly sophisticated orthopaedic chair”. I can confirm, even the young and healthy HSE staff squirmed, and could not wait to be released from its “sophisticated” but rock-hard seating.

Ann Kennedy and Squirt: 'Being in partnership and having equal say in how you wish to be treated cuts no ice in real life either because you cannot be removed from Elder Care once you hit the "magic number".  Picture: Garry O'Neill

‘The National Guidelines on Assessable Health and Social care’ were published in 2016 and run the full length of a veritable tome, 174 pages. As always, policy documents produced by the HSE are exemplary, brilliantly thought-out and very well presented.

I am not saying it ends there, but we have yet to grasp a uniformity in delivery. In the introduction are listed relevant legislation and related policy, procedures and guidelines, all designed to keep us informed about how to do things well. 

It is clear this is a healthcare service acting under the pretext that policy directs the way forward. Nine of these policies are here and there are more under different criteria as well.

Communication

Just one example I can point to is Guideline 4, which refers to communication. It clearly, and rightly, points out: “Failure to make appropriate provision for a person’s communication difficulty may result in avoidable serious risks and errors for both the patient and healthcare provider.” 

This most basic policy falls asunder when dealing with older people with severe/profound hearing loss — something you would imagine it is designed for. The minutiae is important because when one aspect of one policy is losing the basics — as in communication — then the nine other policies are redundant. 

Communication is a right to be heard and understand and follow other human beings doing the very same thing. Get this wrong and worlds collapse.

Being old with chronic diseases and deaf too means no matter how youthful you feel inside, your vulnerability in the face of systems and autocracy increases misrepresentations, presentations and delivery of good quality care. Voices go unheard.

Being in partnership and having equal say in how you wish to be treated cuts no ice in real life either because you cannot be removed from Elder Care once you hit the ‘magic number’. 

You are now a ‘lifer’ — bang goes the partnership and equal say. If you say "no", it is not what they want to hear. If you protest and are loud you are "trouble", on top of being a lifer. 

“Watch that one!” you can clearly hear between the gaps, while your file will say you are "uncooperative" for not responding in what is considered the correct way.

In terms of how we could progress services for the ‘young-old’, or those of us aged 55-74, all I need to do is just inch back a bit to pre-old age when I merely had a disability. Under the disability remit, all seemed more wholesome and correct. 

Since the Equal Status Acts 2000-2018 prohibited discrimination in the provision of goods and services, accommodation and education, Ireland has made it equally illegal to discriminate on the grounds of age as it is to do so on grounds of disability. 

Ageism in healthcare

Nevertheless, ageism in healthcare is a growing concern, Dr Robert N Butler defined ageism as the systemic stereotyping and discrimination against people because they are old. (Regis College 2021).

The recent horrifying case of Emily, a victim of repeated rape and sexual assault in a nursing home, clearly proves there is a presumption among healthcare workers that old people do not know what they are talking about. Emily was not the only woman in her nursing home to report assaults by the same predator but not one of those women was believed.

Old people cannot say "no" to Elder Care divisions, nor are we enabled to stay in our homes as any other citizen of the State is. Our laws clearly suggest all citizens are equal, but alas, some are more equal than others.

On a recent visit to hospital I was asked — as a throwaway question, just as I was leaving a consultation room — if I came into the hospital very unwell, did I wish to be treated and, er, made well again.

My answer was clear: “I will be consulting my solicitor.” I want to live.

I may qualify for Elder Care, but I am youthful and full of life and love and want to share, care and be a participant. I don’t want to be a subject for the rest of my life, with no agency, but I am getting a sense of “do unto this old biddy”, who is a bit of trouble for saying "no" all the time.

I am now doing life in Elder Care for a crime I didn't commit, with keys rattling and discussions being had behind closed doors. There is no inclusive dialogue — the conversation is what they/we will “do about Ann”.

A rights-based legislative approach to older people across systems, meaning that we count, is the reality we have to fight for. Actually, making this a reality is far harder. I may be old, I may be disabled — something which never stopped me, until I entered Elder Care — but I have a voice and am determined to use it.

• Ann Kennedy is a published writer and an award-winning artist, currently exhibiting at the Mermaid Arts Centre as part of the 21st celebration of the creative hub in Bray, Co Wicklow. She lives with disability and medical complexity