In the early stages of Joan’s dementia she continued to respond warmly and with recognition to her many visitors, even if she couldn’t remember their names. As the disease progressed she became hesitant and stumbling, turning her face away even from her two daughters, preferring her own inner world to the external world of conversation. The number of visitors decreased; one daughter said she was too busy with her own family, leaving the other to visit often and to work hard at retaining a relationship with her mother. This was more often via one-sided conversations and attempts to concentrate on photo albums.
Consultations with the charge nurse centred on mother’s needs new clothes, clothing protectors for meal times, comfortable night wear and a doona to replace the weighty blankets. Emotional issues were not broached. Mother was discussed in a tone slightly removed, as if discussing some anonymous patient. But mother was patient, she just sat by her bed most of the time, sometimes singing funny little tunes from a world known only to herself.
Over time, we saw less and less of either daughter, or any other family members.
Grandchildren went on with their lives, Joan went on with hers, quietly but slowly dying. When she spent most days in bed, we were not surprised that she developed pneumonia. It was difficult to contact any of the family: one daughter had moved, the other was overseas. At Christmas, we only knew Joan’s family had visited by the flowers at the bedside, an open tin of sweets and a card, ‘From all the family’. Even though we read it to her as we turned and changed her, it was impossible to know if she heard or understood.
Joan was still alive some months later. Although her needs seemed to have changed little it was time to formally review her care. We felt the review would not take long.
As a formality the family had been notified but no-one expected them to attend; we hadn’t seen them for a long time. Staff responsible for the review felt resentful that in the absence of family members they would have to assume greater responsibility for planning Joan’s care. So it was to our surprise that Joan’s oldest daughter, Beverley, appeared in the foyer on the morning of the review.
She was obviously on edge, never having been asked to a meeting before. Was this meeting going to be difficult? Had staff noticed she hardly ever visited these days?
What if her mother was to be moved out of the nursing home? Had the funding been cut? Beverley felt acutely embarrassed that, although her mother had been in the nursing home for several years, she had never met the ‘new’ director of nursing or any of the other staff present.
Beverley relaxed when the purpose of the review was explained to her. No-one rebuked her for not visiting and each component of her mother’s care was discussed separately to highlight concerns or ways of improving her care. Reassured and becoming more relaxed, Beverley was able to paint a brief verbal picture of the mother she knew before dementia had changed her. Staff were moved by the
passionate description of her mother as an outgoing, proud and assertive women who had been a teacher, a strong advocate for women’s rights and involved in political and community issues. Beverley recounted the profound grief felt by the family as they prayed their mother would not survive the stroke she suffered some years earlier.
‘We couldn’t bear it when she was just a shell of her former self and didn’t recognise us any more. That was four years ago and we still haven’t got over it. Sometimes I drive the 20 kilometres from home to visit her, reach the door of the nursing home, and, without coming in, turn and drive all the way home in tears. I worry that you think I’m uncaring but I care so much I just can’t bear to visit.’
She went on to speak of her son and daughter, both in their twenties. ‘They just don’t know how to visit. Mum used to help them with their schoolwork (maths was her specialty) but now they don’t know what to say to her. They’ll never forget her. I just tell them to remember her the way she was.’
Having listened to Beverley express her sadness and confusion, staff tried gently to draw her into the present by encouraging her participation in planning her mother’s care. Slowly Beverley could perceive a role for herself as the main family carer. Perhaps she could send flowers if unable to visit. Even if her mother could not understand, staff could see her tangible expression of care. Beverley said she did not feel at home in the nursing home and she had never been shown where to make herself a cup of tea, so strategies were suggested to help overcome her feelings of isolation. Perhaps she could be introduced to other families who visited? She was also reminded that families were welcome to celebrate special occasions, such as birthdays, in the nursing home, involving the resident even if that resident was not able to acknowledge the event.
As a result of Beverley’s participation in her mother’s review, nursing home staff learned an important lesson: it is easy to make unfair and inaccurate judgements based on assumptions. The experience of empathic listening provided a reminder that a relative’s absence does not necessarily mean a lack of care.
ON REFLECTION…
When a family stops visiting
There may be many reasons why a previously attentive family stops visiting. Ageing visitors may themselves experience difficulty with mobility. If this is the case we can keep them involved and informed by regular phone contact. Not all families are devoted, or wish to continue regular visiting. In the absence of warm relational bonds it may be enough for family to know their relative is well cared for to feel their duty is done.
Sometimes family members resign themselves to the death of the older person, grieving and separating prematurely. The grief at losing a beloved person to dementia or other related disorders may be such that visiting what they perceive to be ‘the shell of her former self ’ is unbearable, even when the resident is dying. This defence against the pain of loss has the unfortunate effect of leaving the one who is dying alone, cut off from previous emotional supports.
If family visits cease it may be appropriate for a suitably qualified staff member or chaplain to make a phone call or home visit. Appropriate assistance, such as arranging volunteer transport or discussion of grief issues, may prompt a
resumption of visits. Most often we will never know the reason or combination of reasons behind cessation of visiting. All we can do in those circumstances is try to maintain contact on the resident’s behalf, welcome family when they do visit and fill the gap ourselves as nursing home staff often do. Perhaps that is a part of the carer’s role in a culture where the elderly are misunderstood or devalued, sometimes even by their families.
QUALITY ISSUES FOR ENHANCED PRACTICE
The gerontic nurse
• Thorough assessment of family process provides guidance to staff, par ticularly in identifying the implications of past relationships for continued visiting.
• Next of kin details should include whether or not family wish to be contacted immediately if the resident’s condition changes or when death occurs.
Management
• A comprehensive assessment form includes expected visiting patterns by relatives and/or friends; it may also include family’s responses to nursing home admission.
• Visitors’ suppor t groups may include a welcoming committee consisting of families of other residents who are prepared to welcome new families into the nursing home.
• Information books from external sources, for example the Alzheimer’s Association, may be offered to relatives who need assistance in communicating and visiting.
Indirect carers
• Volunteers may play an impor tant role in suppor ting visitors.
• Indirect care staff, such as domestic, cleaning and laundr y staff normalise the nursing home environment. A friendly comment or a moment of conversation with a visitor while cleaning in the bedroom or lounge may be all that is needed to make an uncomfor table or lonely visitor feel welcome.