Who Cares For Me?

Many reports that discuss families' needs during time of medical crisis include strategies to address the personal needs of the family, and the relatives'

requirements when planning waiting rooms in acute care settings (Coulter, 1 989; Daley, 1 984; Leske, 1 99 1 ). The research participants in the current study

reported that organisational consideration of their needs, such as accommodation, was not apparent at all. While they were appreciative of the specialist care provided, some of the research participants who accompanied their spouses would have welcomed acknowledgement from hospital staff that they were from out of town, and may have had personal needs too:

I never got a cup of tea or coffee or anything while I was in there. They never offered me anything. Never said would you like a cup of tea, or would you like a cup of coffee, or anything like that, no. No, not a thing (Zoe, p.7).

These sentiments are supported by findings in the literature, which report that the nurses make little comment about the patient's spouse, and imply that the wife was unimportant to the plan of care (Strandberg et aI., 2002). Other literature that identifies that nurses fail to recognise the role of the spouse as future care­ giver was discussed in Chapter Tw04. The role of nurses engaging in partnership with research participants or the spouse is discussed in the next chapter.

However, the narratives described by the research participants strengthened their perception that they were 'invisible and unimportant' to the 'others' in the hospital world.

These perceptions emerged from the research participants' underlying sentiments of "who was caring about me?" In contrast to those who visit the hospital in the town of residence, these research participants did not have a person waiting for them at home. The only person who knew what time they left the bedside at night was their spouse, who was frequently too ill to be cognisant of the fact. The research participants who accompanied their spouses were not only sleeping in strange surroundings; their personal safety was also threatened as they walked back to the accommodation late at night.

.. . It is a bit daunting being in a huge, huge hospital like that, and not having any . . . someone concerned about you. And, but mind you, they did have security guards that [would walk back with you. But I wasn't informed they were at hand] . . . The first night that I was there and I didn 't know about that, I didn 't know that you could have somebody walk you across the dark quad to your room. In actual fact it was two nights when I went back to the little room on my own that I actually ended up [going a different route from the one that I walked across earlier. I] didn 't know that there was a shortcut across. I ended going up around the back of the building, by the swimming pools, and I was quite scared, you know. Because you don 't know who 's lurking around there, and I didn 't even know where I was. But I actually came a long way round to the main entrance, until one night I happened to notice there was a security guard walking people across. I said "oh do you walk people across, over there? H He said "yes H. I said "Oh that 's great H. SO, they go backwards and forwards and they take people

backwards and forwards going across late at night, so that was quite good. I felt a bit easier after that (Zoe, p.6).

The research participants were not informed that security guards could escort those who were staying in nearby hostels. Furthermore, having security guard

services to escort relatives staying in the nurse's home was not available in all areas. It was not until one research participant, who had spent some time at the out-of-town centre, was recognised by the security guards and they provided escort:

[I met one of the security guards who] said to me "Are you going over to the house? " And this must have been about halfpast twelve in the morning. And I said, "yeah, I'm going now H. And I had a little torch

with me; I used to carry that. And I would sort of walk in the middle of the street; it was just straight down the hill and straight through like that. And two or three times there used to be someone sitting under the tree or something like that. But I used to take no notice. But anyway, he called one of the girls, one of the girls who was a security guard, she was a big girl, she was lovely. And she said to me "Come and sit in here H she said, "I'll take you down. I'm going out in the car, shortly. "

Twice actually that happened (Carol, p . 1 8).

The responsibilities of providing professional care include caring for the entire

family, not only for the acutely ill individual (Kosco & Warren, 2000; Minicucci,

1 998). Nurses are aware that families' needs are not always met as nursing

interventions focus on patient recovery (Daley, 1 984; Kosco & Warren, 2000;

Leske, 1 99 1 ; Mendonca & Warren, 1 998; Twibell, 1 998). Although the previous

examples illustrate that security services were available, the research participants discovered their availability by accident. The fact that they were uninformed accentuated the research participants' perceptions that other hospital personnel were not concerned about their well-being, and treated the out-of-town

hospitalisation as an everyday occurrence:

Well it was a stress and strain on the rest of the family when he was in and out of hospital as often as he was. . . . At that time I was a bit resentful because it seemed to me that he was being looked after, but nobody was looking after me, if you know what I mean. Handling the three littlies and managing the home . . .It is not only the patient who needs looking after (Winifred, p.l).

As explained previously, in everyday living, individuals dwell in indifferent

modes of being-with-others. In the case of this research, most 'others ' did not

have their spouse hospitalised out-of-town, therefore the phenomenon was something only the research participants were living with on a daily basis. Their world was having their spouse hospitalised, but it was not the world of others. Although people asked about the spouse' s well-being, not asking how they themselves were managing hurt some research participants. The following

extract is an example of how the key issues during the spouse's hospitalisation in the non-tertiary centre became part of the 'unspoken' as the research participants

adjusted to being-in-the-world. It took quite a lot of encouragement from the

researcher before Alice expressed her perceptions:

(So, having to be the strong one for Warren, and the strong one for the kids. Who looks after you?)

Alice No-one, really. No, It 's always been "How 's Warren? " I sort of feel that everybody always asks you know, about him and how he is . . .

( . . . and few ask how you are?)

Alice A few do .. .

(Only a few do . . . )

Alice mm hum. They do. But I mean they are probably thinking about

me, but very few asked (p.5).

Because they were out-of-town on their own, there were periods of time when they were lonely and fearful of what the future held for them. Furthermore, the uncertainty of the future resulted in the couples being unable to predict or grasp the possibility of future health. The more compromised the health status of the spouse who was hospitalised, the less the research participants could make sense of the experience. Da-sein is not disclosed when one is with others, because Da­

sein is part of the world. It is, however, disclosed when one becomes aware of

the differences between self and the surrounding world. In the circumstances of the current study, the social support (and thus ability to flee from the differences) could only come directly from their spouses, or via distance telephone,

exacerbating the participant' s sense of isolation during this time:

I didn 't have, you know, a day-to-day companion . . .!t was, pretty hard, pretty lonely, at the time ... and you have got helicopters flying around all

night. But you didn 't sleep very well. There is no phone in the room. So you only had your cell phone ... (Zoe, p.9).

I said to my daughter one day "Do you know, that that was the loneliest time of my life; that [time] down there. All those people in [that city]

and it was the loneliest time of my life (Carol, p.20).

Despite the challenges associated with accompanying the spouse to the out-of­ town centre, knowing that the spouse was to receive treatment brought a sense of relief for research participants. Some research participants had spent so many years looking after their spouses during episodes of ill-health that it was a bit of a relief to hand that care over to someone else. Treatment in the non-local tertiary