CHAPTER 2
Families and friends
At eighty-two, Angela became increasingly frail. She had several falls. She became increasingly deaf, forgetful, and suspicious. She needed her adult children very much, but found it hard to trust them. They had a lot to forgive as her attitude to them was sometimes accusatory and hostile. She felt vulnerable and afraid. She was unwilling to invite strangers into her home or allow neighbours to have a key. After she had a fall inside a locked house, followed by a spell in hospital, her son fitted a key-pad entry system to her home and arranged carers to call each day, but it became apparent that Angela really needed 24-hour supervision. Nobody knew quite what to do.
Then another hospital stay became necessary. In the hospital, disorientated, Angela believed herself to be at home. She was assessed as too vulnerable to return to living in her own home, and, with help from hospital staff, her sons found her a place in a nursing home.
She settled in well, but did not know where she was. When one of her sons visited, she would clutch his hand and beg him to take her home when it was time for him to leave. He found this deeply upsetting, and he felt ashamed that his brother seemed to cope better with the distress than he did. He found it hard to make himself visit and often stayed away, though his brother visited several times a week. He wasn’t sure how much this mattered: Angela’s perception of how long it had been since they visited was an expression of how much she missed them, not how much time had elapsed. They could go for a coffee and she thought a fortnight had passed.
Meanwhile, the two brothers began to tackle the immense task of bringing into good order the family house and garden. Angela had lived there with severe mobility difficulties for many years – there was everything to be done.
For these two men, their mother’s transition into care was very demanding. They felt strongly their duty to her, and, loving her very much, they wanted to do all that they could. Yet her attitude to them, as senility advanced, was unpredictable and often hurtful. Their offers of help were not always appreciated. There was a great deal to accomplish. The renovation of the house; the research and establishment of first the temporary care package, then the residential place; the monitoring of that; the intensive visiting; and the problem of how and when to dispose of the house – these responsibilities were complicated, time-consuming, emotionally draining, and large scale.
Elaine
Elaine was widowed in her seventies and coped well. A reserved, private personality, she did not share or openly display her grief. She managed well alone until she developed cancer at about eighty years old. When this happened, although she was not in need of nursing, she concluded that it would be wise to move into residential care accommodation. Not a driver, she asked her son (her only child) if he would mind taking her to visit two or three care homes she had identified as possibly suiting her needs. Over two weekends he went with her, and she chose the place she liked. Elaine booked herself in, made all the arrangements, disposed of most of her personal possessions, and moved out of her house. Her son, at her request, then put her home on the market (all was neat and tidy and in very good order), had the remaining furniture and utensils removed by a house clearance firm, and that was that. He visited her regularly over the next few months, at the end of which time Elaine died. She had been well cared for, calm, and in control throughout. She needed help in certain areas, but was able to oversee and stay in control of her affairs, which meant a lot to her. Crucially, Elaine recognized, identified, and accepted what would be necessary before problems materialized. It takes courage and the ability to think objectively to achieve that, and not all people are capable of this.
Ruby
Ruby, too, lived in the home where she had raised her son (also an only child) until she reached her late eighties; by then she was a widow. The choice of a residential care home was easy in her case. She was old, but had no specific illnesses, and there was a residential care home connected with the church where her husband had been the organist for decades – an important position in a large church with a considerable musical tradition. So the move incorporated a sense of continuity and belonging; indeed, she moved from a relatively lonely and isolated situation to a context in which she had been known and belonged for many years. Unusually, in Ruby’s case, her sense of identity was probably strengthened rather than diminished by leaving her home and moving into residential care.
She also was emotionally insulated against the wrench of leaving the familiar in that, unlike Elaine, she did not sort through her possessions or make any preparations at all for her move. With the help of her son, she advertised the house for sale successfully, but made no arrangements to move before the purchasers were to take possession of the house. On that day, her son came at her request to help her move. Nothing was packed, nothing finalized – the butter was still in the butter dish and her fridge full of food, while the new occupants of the house sat outside waiting to be given access.
Ruby did not find this move particularly stressful, but her son and daughter-in-law did.
In the residential care home to which she moved, the rooms were unfurnished, allowing the residents to keep around them their own familiar possessions and making the new environment feel immediately like home.
Kate
Kate lived with her mentally ill daughter and her son-in-law (a man with a history of mental cruelty). She was blind and, being relatively immobile as a result, she became increasingly frail and subject to respiratory infections as she entered her eighties. Although it became apparent that she would benefit from residential nursing care, her son-in-law was reluctant to allow the release of monies from her estate for the large sums this benefit would incur. Therefore, although Kate was taken into hospital and was not well enough to return home, a nursing home place was not found for her. Kate had two other daughters and a son. In this very traditional family, nursing care was seen as the responsibility of women: although her son loved her and visited her in hospital, he did not perceive himself as able to contribute a solution. The daughter Kate lived with was herself too vulnerable to organize the care provision Kate needed. Of her other two daughters, one was also a fragile and indecisive personality, and the other was hampered by being the temporary sole carer for her two-year-old grandchild.
So Kate lingered on in the hospital. She was on a busy ward where the staff did not expect to provide the full range of services normal in a nursing home. Weak and ill, Kate could not look after herself well. Slightly confused away from her home, and blind, she was not able to feed herself. The nurses in the ward put her meals and drinks in front of her, then later removed them, untouched. She was not helped unless her relatives came in. She was not washed or kept tidy.
Kate’s family never did find it within themselves to challenge the stance of her son-in-law, and in the end they ran out of time. Dehydrated, neglected, lost between incompetent nurses in a badly-run ward and family members unable to meet the task of arranging alternative provision, Kate died an unenviable death, alone.
Sybil
Sybil – a fit, active, intelligent widow in her seventies, interested in life and people, a happy, engaging personality – sold her home and took a room in a residential care home. She benefited from settling in while still in full control of all her faculties. She learned the route from the residential care home to her beloved church and drove there regularly. The staff came to know and love Sybil while she was still fully herself, and it was with a sense of being in her own home that she eventually and gradually made the descent into the frailty of old age.
Sybil had four children – all loving, helpful, and supportive – but apart from sustaining their personal relationships with her and visiting her regularly, her arrangements asked nothing of them at all.
Joyce
Joyce had six articulate and highly educated children: a close-knit family in which she was unquestionably the lynch-pin – a real matriarch. When her health began to deteriorate and a diagnosis of Alzheimer’s disease was obtained, her family was thrown into disarray as they began to make the arrangements for her transition into nursing care. Without Joyce leading from the front, the family dynamics had to be entirely renegotiated. All the children were strong personalities, but different perspectives on gender roles (some were feminists, some more traditional) and, in some cases, a hierarchical understanding of birth order meant that resentments and antagonism flared among the siblings. All of them loved their mother, but all of them were fully involved in career positions of considerable responsibility. Anxiety about the adequacy of their own responses, coupled with insecurity about comparative performance in carrying out their family duties, made the arrangement of Joyce’s care provision lengthy, wordy, and uneasy.
In spite of the uncomfortable emotional journey this family went through, they ensured that the very best quality of care was found for Joyce, and they visited her and put all her affairs in order most conscientiously.
Stella
Not long after the death of one of her two beloved sons in a traffic accident, while the family was still deep in grief, Stella was diagnosed with breast cancer. Married, with her surviving son still living at home, her family undertook to provide her care. In practice, this meant that Stella spent most of her time quietly coping with the aftermath of surgery, chemotherapy, and radiotherapy on her own at home, as her husband was self-employed and compassionate leave was not an option, and her son was out at work. Hospital volunteer drivers took Stella to and from her clinical appointments, and she did what she could to live normally, encouraging herself, in the daily journal she kept, to be less selfish, to focus on the needs of her husband and son, and to keep going. Stella’s home was deep in the English countryside. A gardener and an artist, she loved the trees and birds, all wild creatures, and all green and growing things. Although her situation left her in solitude much of the time, this held no fears for Stella; she was content and at peace in her own cottage. Her health eventually deteriorated to the condition where it was felt appropriate for her to be admitted to the hospice in a nearby town, and so it was only in the last few weeks of her life that Stella left her cottage on the edge of the woods for the nursing care she now needed. Her husband and son visited her faithfully, she died very peacefully, and her belongings remained in the cottage just as she had left them, ever after – as though she might at any moment walk in through the door.
Observing the mothers of these families make the transition from living in their own homes to residential care accommodation, the most striking thing to me is how different from each other, how individual, they all are. Even so, there is one reality which emerges: the happiest outcomes are likely to be reached by preparation, well in advance, and ideally by the person who will need to make the transition into residential care accommodation. Families will be more or less supportive, not necessarily because they care more or less, but according to their backgrounds, temperament, and experience. There are many things to be organized – finance and property, paperwork and research – and not everyone can envisage or manage the tasks involved. Just muddling on, though it may present difficulties increasing in a steep curve, is the line of least resistance.
In negotiating the transition from living independently, there are some hurdles to overcome, encountered not by everyone, but by many families.
Love
One of the big challenges, perhaps surprisingly, is love.
We often think of parental love – a mother’s love particularly – as unconditional: a total, irrational devotion to her child. Although traditionally it is portrayed in this way, the love of a parent for a child is more complex than that. Parents often project on to their children their own aspirations and prejudices, and the child can be a conduit for dreams and hopes unfulfilled in the parents’ own lives. Parents also often regard their children as a resource that will supply them with certain benefits as of right. This comes to light vividly when homosexual children “come out” to their parents – often the response is disappointment and reproach that the parents are now unlikely to be provided with grandchildren. More often than not, parents look to their children to develop in line with their own ambitions – pressuring and bribing them towards academic or sporting success, encouraging by the expression of strong approval or disapproval the adoption of the parents’ preferred mode of dress and adornment. Many a tearful scene has been caused at home by a pierced lip or a prominent tattoo. Parents expect to have a say in (and often control over) how their children dress their hair, whom they choose as friends, what vocations they follow, how they raise their own children. Parental love is, in fact, far from unconditional, and in many families love is a tool for coercion, to be withdrawn as a form of punishment.
But the love of a child for their parent is unconditional, and sometimes remains so despite every setback and discouragement. There are some children who heartily loathe their parents, but usually with good reason. There are some children who simply cannot relate to one or other of their parents, but in that case they are usually disproportionately devoted to the other parent.
The path of any kind of love is never a smooth or easy journey, and all loves have their moments of dismay.
When a person is in need of more care than living in their own home or living with a family member can provide, and the time comes to make the transition to residential care accommodation, one of the difficulties is love.
It is because children love their parents, and because it is seen by everyone as the responsibility of children to manage this transition for their parents, that the transition is so difficult for the children.
Angela’s sons are a good example of this. The somewhat paranoid characteristic of her increasing senility hurt them deeply, in a way that it would not have done had she been someone else’s mother. That she accused them of neglect and ceased to trust them was immensely painful; the more so because they could not protect themselves and allow recovery time by keeping a little distance – she needed them the next day because she’d fallen again.
When she went into hospital, they both felt a strong sense of duty to visit her, as well as putting in their best efforts to sort out her house and financial affairs. When they visited her and she clung to their hands, begging them to take her home with them (even though she was well cared for and perceived herself to be in her own home), it wrung their hearts and made them feel wretched.
These interactions with their mother touched these men at the very roots of their being: they felt inadequate, they felt mean and cruel, they felt ashamed – although, in fact, they were working round the clock to do their very best for her and make life as easy and happy for her as it was in their power to do.
If they had not loved their mother, or if she had been someone else’s mother, they would have felt sorry for her, but the interactions would not have had the power to reach into their souls and touch them so deeply. The pain of loving results in much of the avoidance that leads to people struggling on inappropriately long after they needed to be rehoused, nursed, and looked after.
Respect
As well as the unconditional love of a child for their parent, another issue that complicates the management of the transition process is respect.
The culture and morality of a society are formed from that society’s religion, and every religion makes a strong emphasis on an attitude of respect towards older people in general and one’s parents in particular. Even in a secularized, post-religious society, religion will be at the foundations of traditional morality and culture, and respect for parents and elders will be in there somewhere. It is in the foundation of what we expect of ourselves: you can be sure that thugs who attack, rape, and steal from old people are individuals who suffer from profound loss of self-respect, acting outside the boundaries of their culture’s moral foundation.
When a parent becomes confused and forgetful, or is no longer capable of attending to personal hygiene and keeping their home clean and tidy enough to be safe and comfortable, it is the children who are expected to step in. At this point, the whole relationship has to be renegotiated.
Most parents expect obedience and compliance from their children, as part of the culture of respect. When children are little, it is commonplace to hear parents ordering their children about: “Come along – quickly!”; “Get in that car!”; “Look at me when I’m speaking to you!”; “Wipe that grin off your face!”; “Never mind ‘why?’ – you do it because I say so!”; “Get off that phone!”; “Take that skirt off and change into something decent!” Familiar?
The expectation is that with grace, or with tears and sulks, the child will comply with the orders of the parent. In most families, this goes on from day zero until the day the child leaves home. An expectation of duty continues after the child leaves home. I have often heard parents complain bitterly that their daughter does not visit, or their son does nothing to help them with the overgrown garden. I cannot recall hearing an adult child express the same expectation of a parent, though they may feel disappointed to experience indifference or lack of support.
Renegotiating the relationship
The difficulty arises at the crossover point: when the expectation of help and support reaches the level where the expectation of obedience and compliance can no longer be met. In order for the parent to be safe, clean, and adequately fed, their clearly stated preference to live independently can no longer be accommodated. This is devastating for both the parent and the children. Unable to carry out both the needs and wishes of the parent, the children feel that they have let their parent down and disappointed them; they are no longer good people. The parent, seeing their authority no longer able to dominate the unfolding of events, feels humiliated and outraged. This forms an unhappy mixture with the fear and sense of vulnerability engendered by failing physical strength and failing memory.
These uncomfortable emotions belong to the period of renegotiating the relationship that typically happens before the vulnerable individual enters care accommodation. Part of the reason it is so painful is that there is no third party to help mediate: the children and the parents are all interested parties in the emotional transactions belonging to this period of change.
Third parties
It may be helpful for the children who have to manage their parents’ transition from living in their own homes to seek the help of some wise and respected friend, counsellor, or advisor – a minister, nurse, or social worker, perhaps – in talking through strategies and plans for the future. Not only is such a third party outside the web of family relationships, with all its complex emotional history adding the weight of connotations to the challenge of present difficulties, but their presence may also encourage restraint and courtesy in the discussions that cannot always be relied upon in family-only encounters.
Such an experienced friend or advisor can also be helpful in providing the information that will help determine what is and what is not realistic and available for this individual in this local area.
A series of meetings to discuss helpful ways to proceed, instigated before the situation gets desperate, is likely to achieve a better outcome than one meeting arranged at a time when the home is in disarray, the vulnerable individual is in hospital or badly confused, and anxiety is running high.
It is particularly constructive to have meetings specifically and expressly to discuss ways forward, with a third party involved: the designation of the time for the task means that the issue will not be avoided simply because, when it came to it, nobody liked to broach the subject. It’s a good idea to have a series of meetings (perhaps three) rather than just one, because strong feelings modify, develop, and are subject to reconsideration; a series of meetings gives a better chance of the right outcome being mutually recognized rather than forced by one party upon another.
Emotional honesty
It is helpful in the course of these meetings for the people involved to be honest about their feelings. The positive way to do this is to use “I” language rather than “You” language, so that the parent might say, not “You just want to get rid of me because you can’t be bothered to come and visit”, but “I feel unwanted, as though what matters to me isn’t important any more.”
When feelings are owned and expressed like this, it allows them to be heard and acknowledged, and admits the possibility of reassurance and positive regard to be expressed: “I do care about you, Mum, but I can’t manage my job and my kids and look after you as much as I think you need now.”
It is important to recognize that intense feelings of guilt and resentment lie around these interactions like landmines that need to be defused. At the very least, those feelings should not be exacerbated. The nursing home manager I knew who told everyone who would listen that she thought it was shocking anyway to be dumping old people in homes – in her culture that would never happen: the old person would be cared for by their family, there were no old folks’ homes, and so on – was not contributing anything useful or constructive to the situation. We were, after all, in Bexhill-on-Sea, not Kathmandu, and had to work with the cultural parameters we’d inherited.
Now – while these people still have one another to talk to – is the time to explore, honestly but gently, the issues that are a source of hurt, to search out and affirm what is positive and can be built on, to find the ways forward that will bring security, contentment, mutual trust and respect, compassion, and peace. If resentment is unexpressed and hardens into bitterness, if guilt is unexamined, if the whole thing seems awful and wretched and difficult, when the time comes that the parent leaves this world, unresolved issues compound the grief of bereavement. What could have been gentle is made ragged and raw and hard.
Family relationships
Another hurdle to overcome in negotiating this period of transition is that it can be a time when all the players’ emotional histories go live. Family relationships include a power dimension: parents wield power over children; older children wield power over younger siblings; a family member may form an alliance or protectorate with one of the others; power is often managed passive-aggressively.
There is often nothing children can do about this.
As the children of the family grow, the opportunity to distance themselves from each other and their parents is sometimes the salvation of the relationship. Siblings who fought and argued incessantly living under the same roof discover each other’s attractive qualities once there is a little space between them. It is possible to cope with a domineering, critical, over-inquisitive, or implacably miserable parent in small doses: once a month for a day visit, or once a week for a cup of tea. The resentment at unfairness and being misunderstood and the guilt at being unable to make these relationships work begin to die down and matter less. Individuals find their way in the world, involve themselves in projects of their own, and form new alliances, partnerships, and households.
But when the family is reunited to undertake the complicated process of moving into a nursing home an unwilling, resentful, distressed, angry, suspicious parent, clinging desperately to the illusion that they can cope, projecting on to their children the blame for the failing situation – “If you visited me more often, I wouldn’t be so lonely”; “Marjorie’s son always does her garden for her”; “If only I had someone to carry the heavy groceries home from the shops, I would be able to manage”; “That? It’s corned beef. No, leave it alone! That’s still perfectly edible!” – the whole can of worms is opened up again.
The patronizing attitude of an older brother endured throughout childhood; the sister who has a fit of the vapours every time she is asked to make a practical contribution; even the shining example of the sister who brings home-made cakes to the aged parent and weeds their garden, cooks their dinner every day, and cannot ever leave them to go on holiday (and feels this is unfair and “Why aren’t you pulling your weight a bit more?”) – all this feels intolerable now.
Families survive and learn from these interactions and negotiations – most people are good at heart and bring honest concern and a desire to do what they can to help – but very few families find this transition time to be easy.
The problem is that the family dynamic grew out of the rootstock of the parents’ attitudes. Now, as a parent enters a level of vulnerability that means they must be cared for, their desires overridden, their decisions vetted by their children for practicality, the whole family dynamic has to be renegotiated. It is uncomfortable, and it is not willingly undertaken for the sake of personal growth, but thrust upon all concerned by the difficult and frightening process of growing old. The aged parent – especially if weary, vulnerable, confused, and subject to consistent low-grade pain, weakness, and disturbed sleep patterns that challenge us as we grow old – is unlikely to contribute much to encourage the other family members or advance the situation.
A third party – a minister, chaplain, nursing home manager, counsellor, or wise friend – can be immensely helpful in offering a listening ear, affirming and appreciating the goodwill shown by all the family members, understanding how much this big transition asks of all concerned and the impact it makes.
Information
It is also often helpful to have the benefit of informed advice.
If full and accurate advice is obtained at the outset (and if the information relating to a range of options is gathered at the beginning), the process of transition will not be protracted by misconceptions or pointless arguments about possibilities that nobody has bothered to check.
It is worth taking time for a person to get used to the idea of leaving their home, and worth exploring and discussing the implications it raises – whether practical or emotional. It is not worth spending time arguing about finance or the merits of particular nursing homes if nobody has investigated what benefits may apply, what financial packages are available, or whether the nursing homes under discussion are expecting to have vacancies within the relevant time frame.
The internet has tremendously improved our possibilities of gathering information. Although many older people now move confidently through cyberspace, many still feel out of their depth online, so here again is an area where it may be helpful to enlist the assistance of a wise and internet-savvy friend. Just a couple of hours one afternoon can return the contact details necessary to make progress with benefits enquiries and to further investigations of recommended nursing homes with good reputations and encouraging inspection reports.
Leaving the comfort zone
Another difficulty friends and family members may experience in facing the task of helping someone come to terms with leaving their home is that the challenges and losses, the vulnerability, and personal difficulties involved may push the helpers right out of their own comfort zone.
Hugh was a retired Anglican priest in his late seventies, married to Margaret. They lived in an English village in the prosperous Home Counties, offering very welcome pastoral assistance to Father Maurice, the rector of the parish. Hugh celebrated midweek eucharists and sometimes took responsibility for the daily commitment of matins and evensong, while Margaret’s cheerful and confident personality contributed much in the area of pastoral visiting. They became an integral part of the village community, loved for themselves, but a little set apart by the respect owed to Hugh’s ordained status.
As they entered their eighties, they continued faithfully with these retirement duties, but by their mid-eighties health problems began to manifest. Although her constitution was in general robust, Margaret needed both hips replacing and a hospital stay became necessary. Hugh, meanwhile, had begun to rely on Margaret more and more. He had become forgetful and rather remote, he could no longer drive and relied entirely on Margaret for transport, and he had begun to suffer from urinary incontinence.
When Margaret went into hospital for her operation, the church parishioners rallied round to care for Hugh, but the incontinence proved to be a serious problem. Hugh dealt with this problem by ignoring it completely and hoping it would go away. Dismayed to find their car seats and sitting-room armchairs saturated with urine, church members felt disinclined to continue offering lifts or inviting Hugh in for supper. Inhibited by social convention and by the sense that it was inappropriate to discuss bodily functions with a clergyman, nobody wanted to raise the matter with Hugh. Somebody went to the village doctor’s surgery to have a quiet word with the nurse, but nothing changed. Soon the community opinion began to form that this problem was the fault and responsibility of the rector.
“Why doesn’t Father Maurice deal with this?” the parishioners muttered indignantly. “He’s the rector – it’s his job to tackle this!”
Why didn’t Father Maurice deal with it? Probably because, like many clergymen, he was an academic, inhibited, dignified man, with a rather rarefied personality, used to dealing with people in the formal contexts of liturgy, business meetings, and short pastoral home and hospital visits – a cup of tea, twenty minutes of genteel conversation, and a brief prayer. Putting two such men together and expecting one of them to broach the subject of the other’s urinary incontinence is the wild end of unrealistic.
But the sense of obligation among Christian people to care for this elderly priest morphed into a combination of guilt and resentment when the incontinence shot the obligation right outside the comfort zone, and the guilt and resentment were conveniently projected on to the rector – “This is Father Maurice’s job!”
Sometimes, we are not able to rise to the occasions life imposes upon us, and when that is the case, it is all right to say so.
Not all of us have what it takes to manage our confused and irascible elderly parents who have soiled their underwear and hidden the evidence under the hearthrug. Not all of us have the personality or upbringing that allows us to feel comfortable with undressing and washing our parents. And that is all right. Somebody has to help; we may need to play a prominent part in securing that help, but the job is not necessarily ours.
Guilt, blame, resentment – these are never constructive ingredients to add into the mix; they never improve any situation at all. In order to eliminate them, it is necessary to give both others and ourselves permission to be the people we really are.
When parents are raising their children, there will be consequences to the choices they make. If the children are never on any account allowed to see their parents naked, if the parents do not cuddle their children, if the children are not treated as equals but have a relatively formal relationship with their parents, then is it reasonable to expect that they will be comfortable with wiping Daddy’s bottom when they are sixty and he is eighty-five? They may not even know how to begin the conversations that must happen in order for the parent, who is evidently no longer coping, to make the transition to a context with appropriate provision of care.
I believe that the obligations of common humanity and compassion impose a duty upon us not to ignore our fellow human beings when they are struggling and getting out of their depth, but I do not believe that being somebody’s child implies responsibility for the parent’s well-being. If you want your child to be comfortable talking with you about difficult issues, if you want people to be able to approach you comfortably about personal matters, if you are hoping that others will involve themselves in your life at times of vulnerability, then it is down to you to do the work to make yourself approachable. Not only is it unfair to ignore this important area of self-development and responsibility, but it greatly reduces your chances of managing the big transitions gracefully or at all.
Margaret died of a post-operative pneumonia. Hugh struggled on for a while, increasingly left alone by the church community to which he belonged, everyone (but most especially Hugh) ignoring the incontinence that cause such horror and embarrassment. In the end, he applied the only solution he could think of: he committed suicide.
Social taboos and inhibitions
Talk to your children. Talk to your friends. Talk to your spouse or partner. Learn to explore the intimate and personal spiritual and physical topics that alarm us because of our social taboos and inhibitions.
A while ago a friend underwent several months of gynaecological and bladder disorders, suffering from stubborn infections that proved resistant to medication.
In the course of this, needing to explain something that had happened to her, she described an occasion when she had stepped out of the bath and – it was difficult for her to say this – she said, “Sometimes water drips out from inside of me when I get out of the bath; it’s embarrassing to mention this, but sometimes it does.”
Yes. When I get out of the bath or the swimming pool, water drips out of my vagina too. And we do ourselves just the hugest favour if we can get over the social taboos that inhibit us from saying so.
Now, I am not advocating that we should importune strangers in the street with unwelcome information about the functioning of our private parts, but I do think it is healthy and wise to get comfortable with talking to someone about our emotions, our bodies, our finances, our relationships, our fears, our illnesses. That someone may be our children, our friends, or a professional counsellor, but to be too buttoned-up is a dangerous way to live.
Philippa was a very, very private lady who had suffered from breast cancer. She lived with, and was the carer for, her ninety-year-old mother. When Philippa discovered the lump in her breast, she felt extremely frightened, but, coming from a very reserved family who never saw her naked, Philippa could not bring herself to show or mention her discovery to anyone.
Time went on and the problem progressed. Philippa became very withdrawn and sad, and her adult children wondered if she was depressed – but didn’t like to mention it. Eventually, when one of her sons saw that her ankles were becoming swollen and there seemed to be something wrong with her arm, he insisted on taking her to the doctor. By the time Philippa was examined, her cancer had progressed so far that it had exposed a rib. She had been bandaging it herself, in the privacy of her bedroom with the curtains closed – too afraid even to look.
I would identify two things as especially unhelpful for families trying to find their way through the challenges of this transition time: inhibitions and expectations.
Inhibitions that make bodily functions unmentionable and make mental confusion shameful and embarrassing do not serve us well. Expectations that assume we will fill a particular role, even though it fills us with horror and feels unbearable, also do not serve us well.
The way to safeguard against these two pitfalls is to develop open and honest relationships, to allow ourselves to be seen and known – and personally to take responsibility for making ourselves accessible and approachable enough to discuss issues such as incontinence, confusion, personal relationship, fears and hopes, and increasing frailty.
Priorities
As well as the personal communication difficulties that may be encountered when a parent becomes so vulnerable that the relationship between parent and child has to change, family members may face very challenging decisions in prioritizing their commitments.
We live in a very mobile society, and it is normal, and often strongly encouraged, for children when they grow up to move away – explore the world, go and see what’s over the hill. So they do. Then while Dad at one end of the country is losing his sight and no longer very steady on his legs, his daughter has a demanding and all-consuming job as an executive at the other end of the country, already stretched to breaking point by the demands of juggling professional commitments with homemaking and raising a family.
When my husband Bernard was in hospital for surgery and tests in connection with his terminal cancer, he longed to come home, but his stay extended as more problems became apparent. Then, with no warning, his doctors decided they had done all they could. I arrived on the ward to be told I could take him home tomorrow. He was overjoyed, desperate to leave. Unfortunately, the day after “tomorrow” was also my twins’ twenty-first birthday. Already my children had needed to be very understanding that Bernard (not my first husband or their father) took up so much of my time and attention. I had to tell him that though of course, he could come home as soon as possible, he would have to stay where he was until the special birthday had passed. He was devastated, bitterly disappointed. But each of us, even the most vulnerable and needy, must fit in appropriately to a family – a community – as a whole; if the needs of one are allowed to tyrannize the whole community, resentments very quickly will begin to arise.
These divided loyalties and challenging matters of prioritization include a certain duty to oneself. At times, when I was the carer for my dying husband while simultaneously fulfilling a full complement of professional duties, I felt hysterical with tiredness. It was not wise.
When my mother trained as a nurse in the 1940s, her hospital matron impressed upon her, “Your first duty is to yourself, nurse.” This is sound advice.
In caring for others, in facing profound emotional challenge and significant life changes, burnout is the likely consequence of ignoring one’s own human need for leisure, refreshment, and regular breaks. Sometimes it is necessary to be quite insistent about this – especially as the most demanding people often do not recognize themselves as imposing a burden.
Financial arrangements
In addition to the emotional, interpersonal, and relational challenges that may be thrown up by this period of transition, there is also often a considerable amount of daunting work to be done in the area of paperwork, finance, and property.
This will vary from one individual to another, but there is often an accumulation of documents and personal possessions acquired over a lifetime left waiting to be sorted through. Older people may have accumulated not only belongings of their own, but also the effects of deceased friends and relatives whose houses they in their turn helped to clear.
If the financial arrangements with the care home will permit this, it gives the person moving into care, and their family and friends assisting with making the transition, a helpful breathing space if the house sale and disposal of personal effects can be left until some time after the move has been made. Belongings left behind lose their emotional grip and it causes less heartache when they go. It is easier to say goodbye to one’s old house when the new environment has proved comfortable and become familiar enough to feel like home.
Taking time over these tasks without rushing, seeking advice at every stage before deciding, openly admitting when an aspect of the process is emotionally difficult or overwhelming, being gentle with yourself and with each other – all will help this process of transition feel like what it is: natural, positive, and welcome.
Once the transition is made, family relationships can often move into a more comfortable dynamic, as guilt eases, difficult decisions have been faced and overcome, and the vulnerable individual is safely accommodated in a place where they can receive the care appropriate for their present situation.
Points to remember