Interpretation : Coping strategies refer to the many ways staff used a range of strategies to help them when they experienced feelings of loss and grief. Individuals use coping strategies throughout their lives in order to manage many stressful situations. Coping strategies may include hope, denial, humour, music, work and many more. The human condition is very resilient and individuals may employ a range of coping strategies in diverse ways in order to avoid or reduce pain whether physical or psychological.
Participants coped individually and collectively with the challenges of their supporting persons with dementia and advanced dementia up until their death. Although in some services there was no discussion that dementia was a terminal illness, the participants knew that the person was declining both physically and cognitively and they appeared to employ a range of different coping strategies which could be divided under three categories. In the sub-theme coping strategies, there were 3 categories:
7.6.1 Holding on/ Denial/Acceptance
Interpretation : Holding on/denial/acceptance refers to the tension experienced by staff who did not want the client to be taken from their setting. It was closely aligned to the denial of the fact that the person ought to be moved and the acceptance that the person was declining and needed support which could not be provided. Potentially, there may be many reasons why an individual may not wish to let go of a familiar situation. A familiar situation or routine may be comfortable and comforting. One’s holding onto something which is familiar may be easier emotionally and a denial that the situation ought to change is one way of facilitating that holding on.
Holding On Denial/Acceptance Facilitating a good death Rituals & Remembering
The participants did not want to let go of the clients until they absolutely believed that they could not give them the support and care that they required with safety and comfort. Therefore they employed lots of strategies for holding onto the client.
There were many examples of when participants all along the trajectory of the dementia resisted thinking about the need to move a client to another setting even within their own service. They did not actively look to have the client moved. However, coming up to end-stage dementia when the client’s care needs were increasing and human and other resource issues were challenged, participants would begin to consider that, in the best interests of the client, they probably ought to consider a move.
A participant (manager) reported at one site that she knew that when staff said they could no longer cope with caring for a person with dementia in that setting because of a lack of resources and health and safety issues, that it was probably six months or more before that when they found that they could not cope and were at breaking point when they admitted it. This was in a community care context and the following quote demonstrates the point:
.. my experience is that if you said to the nurse would you like us to take M and bring her somewhere else, you know, for the end- stage.. they would probably say no .. even though they are very overworked and over-stretched providing care to everybody else who doesn’t have dementia on the unit.. 1.7.1
Some participants found that the prolonged trajectory of dementia facilitated their using a denial mechanism to cope with the inevitable, (that the client was terminal). They avoided thinking about the person’s death and admitted that it may possibly be a coping mechanism in order to avoid the feelings of sadness and grief. The following quote captures this:
I think because he is dying in such a regular basis (over a long period of time) you don’t think too much about that. Em I think you’re being prepared sort of in terms of grieving sort of .. you know when he eventually will die but you don’t .. well for me personally I don’t tend to think about that. Like I’m aware it will happen..3.5.1
On occasion some participants were looking after the person for so long and coping with the acute episodes where they had repeatedly anticipated their demise, (and instead the person recovered), operated on a denial mechanism to cope and were then taken by surprise when the person died. The following quote demonstrates this:
I think probably with one or two I would have denied .. and one had come back from the brink so many times that you thought she will .. she’ll come back again. And when it did happen it was a shock because we didn’t really expect it. So I think there is an element of denial yeh. There was one in particular a long time beforehand. But the element of denial is definitely there.. 3.6.1
Alternatively, some participants realised that when death was inevitable that they ought to accept that it was better for the suffering of the person to come to an end. The following quote demonstrates this:
I suppose when it (death) happens then .. it’s the element that, that’s it then. That’s death, you are sort of not wanting it to go on any longer so they don’t have any longer suffering but at the same time when it does happen that sort of, I suppose its nice the best possible care has been given and they have remained at home and with their family and remained among friends/peers, I suppose those things 3.11.1
Some participants acknowledged that because the client had been dying over a prolonged time that it was acceptable that they died and that they had had enough. The following quote captures this:
.. people I’ve worked with for a long time, that’s the most.. But it’s almost okay that they died because they had been dying for so long.. Sometimes it’s okay, they’ve had enough, they don’t deserve .. 3.9.1
In summary, coping mechanisms are employed by staff to manage their emotional reactions to loss experienced while supporting persons with dementia. These coping mechanisms mirror those used by bereaved individuals in general.
7.6.2 To Facilitate a good death
Interpretation: To facilitate a good death refers to the general views which staff held in relation to maximising good end-of life care and support at the time of death for the person with ID and dementia. The hospice movement brought to public awareness the knowledge that individuals ought to be afforded the experience of dying with dignity. What determines a good death may be determined at a societal, cultural or individual level. As health and social care professionals, there may be expectations to facilitate a ‘good death’ for clients. What this means in practice may put demands on staff to question what they do and what they can do to support the person with a terminal illness and who is dying in their care.
The participants considered that a ‘good death’ was an important aspect of their care for the person with dementia. Senior nursing participants placed emphasis on the fact that they coped with their emotional reactions by their ensuring that they facilitated a ‘good death’ for the client. Aspects in the provision of a good death were identified as the providing of good physical, emotional, medical and spiritual care. Participants aspired to the ideal within the reality of the resources at their disposal. One important aspect of end-of-life care for one participant was that no-one ought to die alone. The following quote demonstrates this:
You don’t want them to be on their own, that’s one thing I fought for and thank god I’ve gotten it, that I will not have anyone die on their own.3.9.1
In one ID service, a participant recalled that when she had realised that her client was possibly dying in an acute hospital setting, she arranged for him to be transferred back to the ID service because she wanted him to die ‘at home’ with staff around him who knew him. This was considered an important aspect of care for this person as demonstrated in this quote:
He was dying .. I said goodbye and we brought him out on a stretcher and got him back. Thank God we brought him back .. and it was when he got into the bed you thought oh my God (said with relief) you know and then he died at two o’clock that night. 3.10.1
All nurse participants and experienced carers said that when the client was dying they believed that they could give the required ‘basic nursing care’ and that dying was the same for any client irrespective of their diagnosis. This was in relation to one’s providing comfort for the person and medical attention and symptom management if or as required. Many nurses considered that they had the knowledge and skills required for caring for the dying. General nurses, and experienced ID nurses particularly, stated this as captured in the following quote:
I think we have the capability of caring for the dying .. 4.2.3
In some sites where there was reasonably good and established medical support provided to the ID service and where they had extensive experience with deaths, the participants clearly did not consider that the end-of -life care of someone with a diagnosis of dementia /Alzheimer’s was any different from end-of-life care for anyone else. This is captured in the following quote:
Well their end of life care at the end of the day is the same as anyone’s end of life care. They are not any different to any other clients, whether they have CA or any other illness. The end of life is the same for every single one of them because at that stage of the game you know everyone is on par. So the end of life issues is an issue for us all.. with them all,.. 3.2.3
In one interview participants described how they had consciously decided to create a ‘family’ situation for a client when they surrounded her with the people (staff and other clients) whom the participants perceived to have mattered to her in her life and they “locked out” anyone else from the service so that the significant chosen people only, would be with her when she died. The following quote captures this:
But at the end I knew she was about to go and I made us all, they were all in, everyone of the girls were in that day and we all sat around the bed and held her until she left and I think about, must have been about half an hour after she had died I informed them in the office. I was in trouble for it but I didn’t want anyone involved in it because I felt that we were her family, any other family could make a decision like that so I told nobody she was that bad and we sat there, they knew(staff), she was passing, she was like.. but staff really appreciate it to this day, they’d say it. Now I explained to her why I did it and she was fine, I was like but I could not, … we needed that half hour, and the rest of them
(clients) knew as well, yet we did not, not one of them stirred they all knew. We sat there. (laughing at the memory of defying the system!) All of the women in the unit as well. It was the only time I’ve ever done that. 3.3.10
Some participants (nurses) felt more control over the facilitating of a good death because they had additional training in end-of-life care and had the confidence to deliver care which managed the persons pain and symptoms. The following quote captures this:
I can manage their pain and their agitation. I can make sure they’re comfortable. I can do something. You see and doing is a great way of alleviating .. or .. I suppose addressing your grief issues ..you know .. I can do something and as long as I can help to make them comfortable and they’re peaceful. That to me is a good outcome .. and that’s how I deal with it.. 3.1.1
In relation to the supporting of clients with dementia who were dying in their care, participants had had time to come to terms with their gradual decline. Furthermore, they also got solace from their being present with the person at the time of death and that the person died in their care. This is captured in the following quote:
… but staff saw the gradual .. and staff were with her right up until the end.. so there wasn’t that major tear at the heart you know when they go somewhere else to die and you’re called you know the last .. 1.3.5
In a service which was now delivering end-of-life care for people in the ID setting, participants were furthermore now very satisfied that they were providing after death care. This is captured in the following quote:
…it’s worked out .. you know . cause at the start we were like ..oh no ..we’ll have nobody laid out here .. but it was actually worse seeing them laid out in the funeral home. .1.5.3
Participants from the services where there was an end-of-life care units and the staff had basic knowledge and skills in palliative care described their experiences of persons dying in very positive terms. In one of these units where there was individual rooms and space and families were usually involved a participant said that the care was so good
that it would be the setting she would wish for her own family members if they were dying.
7.6.3 Rituals and Remembering
Interpretation : Rituals refers to the many aspects of care which staff employed before, during or after the death of persons in their care and which related to the demise of the person. Rituals may be considered important as rights of passage. They can be employed in relation to the coping and the enabling of the expression of grief pre or post the death of the person. Rituals may be culture specific and indeed sub-cultural specific. This may prove important in a multicultural health and social care workforce and within the particular world of ID care. Participants engaged in rituals in all of the services but there were some changes in practices which were causing them concern.
Interpretation: Remembering refers to another coping strategy utilised by staff to manage their grief. Remembering someone who has died is inevitable for the bereaved (unless it is actively suppressed). It is increasingly recognised, in developing theories of grief, that it is important for healthy grieving that the bereaved actively remember the deceased person and learn how to re-integrate them back into their lives within a new understanding.
In regard to rituals, some participants, from the long established services, found that some of the rituals that they had previously found useful to cope at the time of deaths, were now disappearing. This is captured in the following quote:
we used to do, well we don’t do it anymore but we used to all line the avenue you know we would go out and stand in the avenue when the hearse would be going out. But we don’t do it anymore now. There’s not as many ladies or staff now .. 3.9.1
Furthermore participants were disappointed that new staff in the organisation were not following older customs and this bothered them as stated in the following quote:
And I couldn't get over it, she was in 3 different units in this service and because it was at tea time nobody bothered. So and so’s funeral, are you not going to go to it, maybe you should go up, you'd be encouraging them to go. I just felt this
was at tea time so it doesn’t fit into the routine. So nobody bothered pushing them, that personal touch whereas years ago if the team, you know, if there was a funeral to go to, its probably an old thing as well, but I just, I couldn't believe it. I was thinking about it and it bothered me and afterwards when I came out of the church I felt, I felt disgraced to say, we are losing our personal touch here. And it bothered me .. 3.9.1
A number of participants described how they coped by ‘doing’ and described themselves as more logical than emotional. They tidied away the belongings of the person and found this helpful in managing their feelings of loss.
Of course there is and for some people it’s about going to the funeral, for some people it’s not. Some people need to go to the funeral for closure. Actually another thing that puts closure on it for me is em .. putting all their things away (said quietly). Packing their room up. That brings closure. I’m a more practical person as opposed to being an emotional person. Yes. 3.6.1
Perhaps reflective of the theories of Klass et al. (1996), when clients died, staff across all sites endeavoured to continue the bonds with the deceased. On some occasions the service erected a special garden seat in memory of the person and this was used by staff as a place to visit with the peers of the person to remember the person and to hold them close in their memories. However, the most common way staff attempted to keep the bond alive was via the medium of photos of the deceased being displayed in prominent positions in their workplace.
Participants across all sites spoke about their own strategies of remembering the clients. There was a positive energy to remember the relationships which they had with the person. In all of the ID services the participants had photos of the deceased clients in places of prominence. They used these photos to talk about the clients among themselves and with the peers of the client.
Like you still never forget them like .. there’s always little things in your unit that you .. we’ve pictures of them all that we have over the years ..you know