AGED CARE and THE EXPERIENCE
When I first started working in Aged Care my work was called “Activities”, later “Life Style”, then “Diversional Therapy” and now with a myriad of different names such as “Leisure” or “Recreation” its boundaries and borders are forever changing, yet maintaining the core value of facilitating quality of life for the client.
I had came from a work background which included administration, publishing, teaching, art & community arts, theatre, social welfare, of working with children and/or adults with disabilities (cognitive and/or physical), adults with schizophrenia, unemployed people and with the general public. So I came into Aged Care from a wide experience of life which brought wonderful skills as overlapping those also needed in my practice as a Diversional Therapist.
Working on projects, programs and processes, whereby the goal was moving further the residents’ lives, opening opportunities, solving impacting problems, overlap with the duties of the Diversional Therapist and the welfare of the Resident in aged care. But no matter how suitable, appreciated and wonderful the programs and interventions are, most people do not leave these facilities to live their life and life’s end elsewhere.
The decision for people to enter Aged Care facilities to become clients may be voluntary, sometimes in response to other people’s decision for “what is best” (family or professional advice) or because their people/family are unable to take responsibility for their daily care. People move into Aged Care Facilities of Respite Care, Hostels, and High Need Care because they are becoming frail, vulnerable, need medical monitoring or basic nursing, are no longer self-sufficient in self-care, or have diminishing abilities that are impacting on them functioning safely. This is generally as part of the ageing process towards death, which also has a wide range of length of time in the stages before death. Individuals reach these turnover points at different ages depending on a lot of factors. They also lose abilities at different rates and in different configurations.
Their responses to this change can vary hugely and sporadically with different time frames, depending on their heath and ableness (past and present), comfort and pain levels, personal history, access to family and friends, stimulation and support situations, temperament and ways of seeing, education and work experiences, abilities to learn and adapt, what they leave behind or bring with them, the abilities to make new contacts and bonding, how they deal with loss, and the structure of the new “home” and others expectations.
As important, of course, is the quality care level of the facility they are in or attending.
This is why an Individual Approach in any Aged Care is very important including Diversional Therapy Activities.
Though I do not believe that these Care facilities are or need to be “Waiting Rooms for Death” or preparation for “a good death”, and I believe that every one of us needs to live to the end as fully as one can even in truncated and changing circumstances, the recognition of death and the acknowledgement of the immanence of one’s own death is a significant part of this experience.
THE MANY DEATHS
In the first 18 months of my work there were 18 deaths, some of them in “clumps”. It’s important to state this was out of a largish “population” over several facilities and people of age 80 plus to102 year, so there is no suggestion of mismanagement.
After the first few deaths, I started to feel that every time i had made real contact and some understanding of this person- and thus hopefully to arrange things of satisfaction for her or him, they died.
And a new face and life would come and I would start again, still recovering from forms of grief.
The ones that died were not always the ones expected to die. Some bordered death then came back to living, some several times. Some had not been sickly beforehand or had been chronically ill with no change.
Some had been sent away to a hospital from a fall or other crisis and had not come back. So sometimes there was shock as well as surprise, when there had been no warning or Palliative Care situation.
I would leave work at late hours, having caught up with people and jobs, and come in the morning to be told “Elsie had died”. I hadn’t had a chance to say “goodbye”. I would then get on with the day and its needs. It was another world to the ones I had lived in. It was one where many deaths were within the norm.
I loved the work and the people, but this reoccurring loss of people aspect started to effect my resilience, no matter how much cognitive preparation i had had or been prepared for.
SEEKING EXPLANATIONS of the PHENOMENA of death and their patterns.
Of course, i asked the staff pertinent questions to get a sense of proportion to this. A nurse and a doctor gave me information that helped this:
The dying which we recognised as happening, was particular end-diagnosis or was an expected death due to extreme age and/or frailty with gradual diminishment, and with signs.
In the places I was working, many of the people dying were mainly of a “generation” that had been there ten years, so the long-term medical interventions were being overtaken by new health issues and accumulation. So that was why some of the “clumps” occured.
Sometimes there is no explanation why and when the death, just perhaps their readiness to go. Some people just go quietly in the night. Some people hold on till a special member of the family arrives: one woman held out till her 4th of her 7th grownup child, away in Qld for 4 years arrived; another the birth of her great-grand child; another a beloved grandchild back from overseas; another her own 90th birthday.
Sometimes there is no explanation for the recovery either.
RECOGNISING AND STRATEGISING AROUND DEATH LOSS
MYSELF: my response
I grieved. I found myself depressed at times. I had lost a lot of hopefulness and sense of pleasure in the future. I had lost some impetus and enjoyment in planning as my sense of time, which what planning is around, was now predicated with the potential that that person may not be here to enjoy the future event. I found myself losing some warmth through holding back from friendliness as my fear of new loss mounted.
I found it didn’t impact on my efficiency of getting tasks done but it “greyed” my world and the connections and interaction with people in it.
Luckily i recognised this and sought strategies to ameliorate the situation.
IN-HOUSE NEEDS AND OF STRATEGIES FOR OTHERS AND SELF
Many Facilities may have some of these already set up, ready. Some of this may be seen as stating the obvious but the overview is necessary.
TELLING the NEWS
*FAMILY or Guardian
The Manager or Coordinator or Supervisor or Head Nurse usually takes this responsibility. Usually it is to one member of the family, who then relays this to others.
If the family is willing, funeral arrangements may be known to staff.
*STAFF
Head nurse/coordinator need to be letting each staff person know as they come on duty by face-to-face contact, message oral or note, or “pleasant” notice in common corridor.
Otherwise it can be an unprepared-for shock when staff go into a resident’s room and find them gone and/or a new person in their place. Now a bare room, where some known aged person was, is a huge contrast.
The efficiency of a Facility can ensure that almost all evidence of a person can vanish within a day, a laudable but blanking experience that can feel cold and unfeeling, leaving the staff or visitor feeling displaced, the connection made null and void.
*RESIDENTS NETWORK
It is surprising and wonderful how some resident’s social “networks”/relationship connections continue or even grow despite distances and difficulties, and may need continued work/input by staff over time.
Friends are often very sad to also having missed the news have missed the funeral.
* OTHER RESIDENTS:
*informing personally the residents who have become close friends, allowing for natural grief and expression.
*Informing the Activity group/s he/she attended and her/his meal/table/room companions as appropriate.
*FRIENDS & VISITORS
*informing general and close friends who come to visit who may not know the family or have contact details or be in the loop.
In shared rooms of where residents are bedbound, the remaining resident is sometimes part of these social visits, and loses this contact upon the death. Occasionally the interest and kindness of the visitor is extended to the other resident beyond the connection and they still come to visit.
*letting irregular friends/visitors know who turn up, outside the network, sometimes weeks down the track. People may visit once or twice a year or as they come by that part of town/country.
*Letting Volunteers visitors know
Because some volunteers over the years become regulars, weekly, monthly they sign in but do not visit the desk and often haven’t been informed. Having built up a relationship over time, this is a sadness for them.
*Writing the last letter to a correspondent.
I was a scribe for a migrant woman who received cards from Scotland but could no longer write. We would spend time reading the card/letter as each came, talking of what she might like to write back, and notes by me of circumstances effecting her need for an intermediary, with her knowledge and permission. Often the crossing correspondence would be full of medical and other details of age-related conditions. Upon her death i wrote to her distant friend, informing her and sent a copy of the obituary. I received a very grateful reply.
*Confidentiality issues
There are delicate lines and complex ones especially if the/a resident was a Ward of the State (State Trustee) or the family is very private in their dealings with the Facility, staff and others. Considering what may be in the Public Domain can be helpful in dealing with sharing information so as to not exclude caring people who are connected and grieving.
FAREWELLING
Staff sometimes get a chance to attend funerals, this can be healing.
It may not be possible as this is time consuming or conflicting with work hours and deadlines. Choices and priorities obviously have to be made.
Sometimes it is possible to take a close friend of the deceased resident so the sense of death is part of life, the facility community, and a celebration of that life. Family sometimes value the presence of staff and show appreciation of their care and their family member’s times and bondings in the last years of her/his life.
MEMORY ACTIVITIES
Sometimes a death is treated by silence, with no talk of the person or the death, which can be “read” as people being forgotten, or unimportant, or one is expected to struggle on in denial of grief.
*CREATING A MEMORY BOOK: A record of each person, with a photo and dates and space for staff and resident to write their own comments or have their thoughts written in, about the “lost” one. Sometimes the family will give a Funeral card with photos of the resident when young as well as older which gives a sense of the person more, their life before the facility.
Some residents like to see the photo of their friend and over months afterwards, also to mention them. Some residents may comment on what they would like at their funeral or around their death or religious thoughts or wishes. This allows the Diversional Therapist to further these with the relevant people or forms.
*Memorial page up on Corridor Wall, with photos, so they are not immediately forgotten. Sometimes the funeral card or the obituary is possible. Some residents may not remember other residents’ names but faces are recognisable.
*Memorial services: some facilities have a shared memorial service once a year with names and other details as wanted, with residents and families. This also allows families one last connection with a place they have, more often than not, spent a lot of time in and with contact with staff and other residents, around the reason of the presence of their family member or friend: a chance to farewell place, staff and thank in other circumstances than when dealing with the recent death of the loved one.
*RITUALS
*Minister or lay person can run a Ritual of Loss, lighting a candle (battery or real) or dropping a stone into a clear bowl of water, or floating a flower.
For bed bound people this can be a quiet and lovely ritual, done on the removable tables.
Planting a flowering bush etc in the garden can be another way. Some families are happy to donate this or a garden seat with a plaque or an idea of their own.
Vases with flowers or greenery can make instant tribute. A special place for a certain amount of time with a photo can be a known focus, near a travelled corridor. It also informs those who come in if they hadn’t known.
SOCIAL AMBIENCE
*Creating Balance: allowing memory conversations, yet one doesn’t want the sense of people dying to be ever-present for staff, residents or visitors.
*“Thank you letters” Book
Families and friends send “thank you”s which are wonderful if shared across the staff shifts, affirming that the relationships, care and work done by staff did give benefit to the resident in the time they were there and it was appreciated. This can help morale.
LIFE AFFIRMING Activities for NEW LIFE in the cycle of life or ephemerality,
Also good for depression, “transferred/witnessed trauma”, losses and partings
I found these helped residents, staff and myself.
*lots of gardening ACTIVITIES: indoors and out with attention to later viewing growth and seeing results of care and often improvement.
Access to Sunlight, “Vitamin D therapy” also raises spirits and motivation.
Greenery, like ferns, any season can be cheering, bringing the outdoors inside in comfort.
*invitations to babies (and parents) visiting: the openness/engaging of babies to the world and the promise of future they carry is a celebration of new life. When held or seen close the tiny beauty of unfurling humanhood, and their cuddliness is cheering. It can bring back memories of the joy of their own babies.
This has to be done with some awareness of individual residents as this may trigger off memories of the earlier years of their lives, now more easily accessible, that are not all happy ones. Most have lived through hard times (war times, depressions, less medical access, worrying parenthood) and some women may have lost babies through miscarriage or death or been unable to have them and still have grief related to this.
*armchair exercises or armchair dancing can get endorphins release.
*Aromatherapy and some Bach remedies can be selected around grief needs, stages and duration.
*water play: washing objects or games e.g. of toy boat races or just playing can be relaxing and releasing (in spaces where there is no worries around spills)
*art therapy either informal with non-product, experimentation time or focussed themes and support around related issues by trained person.
* One has to be careful not to “Jolly” or cajole people to do things when it doesn’t suit them in the name of closure. Feeling sad and missing people is normal. Residents showing signs of Brooding and “mental tape loops” (repeating circling thoughts and worries) may need interventions, encouragement to share the worry and clarify it. Especially if some deaths seem to have troubling circumstances that the resident doesn’t understand or fears may occur again or the death has occurred after being taken away from the facility to hospital, so it is “off-stage” so to speak. This makes it harder to accept the death or feel it is real.
MY STRATEGY of SURVIVAL and ONGOING in my work
ON-SITE: I now have a little collection of A, B, C plans to adjust to changing needs of residents, and re-allocating, where possible, when person dies, or goes to hospital or a dementia ward, so my grief does not slow my response to others’ needs.
OFF-SITE: my aim was to personally strengthen and heal, and become more resilient.
*I visited a Reiki practitioner who found a huge imbalance in my energy levels, and worked on this.
*I became aware of the usual depression strategies: keeping up contact with family and friends, doing exercise, continuing participating in my own interests which included gardening.
*I talked to friends about my feelings and the effects around these losses. They listened supportively and this allowed me to clarify much about the process.
*I “got physical”: swimming, walking, exercises, dancing (like no one’s watching) to bring myself out of internal processes. Releasing energy and relaxing muscles.
*I did my own rituals of grief and celebration for special people: for me it’s scrapbooking, writing poetry, or artmaking, in quiet spaces and uninterrupted.
*Grief makes me want to be busy and work a lot (not hard to do) without closing off from the grief or becoming over extended. Some people find it closes them off or just want quiet calm somewhere quiet. I was lucky I knew what suited me and I could do it.
MY CONCLUSION
Working in this field, the continuous loss of people through death showed me that I had to build up psychological and physical resilience, and needed to be aware of circumstances, impacting factors and idiosyncratic needs, to be flexible knowingly to allow and facilitate true mourning and “picking up the pieces” of my and other’s lives beyond the loss.
Understanding more and accepting one’s own propensity for fondness and fear of potential loss, meant I could plan and engage with people and their needs, knowing that lives have their own shape and lengths, and significance for those left behind.
-fini- April-Kaye IKINCI 2015