Just about everyone who has ever met my mother says she is a ‘sweetie’. She is delightful and no trouble at all. I beg to differ. My mother is not all sweetness and light. She is 92, unable to walk and only able to stand for just a few seconds with support, her arthritic hands have taken away her ability to grip or pick things up, her hearing enables her to pick out only the fewest of words spoken by those fortunate enough to have a voice that resonates at the right frequency, and her sight is poor, very poor. Now all this in itself does not exclude her from being delightful or a ‘sweetie’ but no trouble at all is about the last phrase I would use when describing my dear mother. The deterioration of her health excludes her from all of the activities that keep a person occupied and all she has left is her thoughts and thankfully, her ability to speak and communicate.
I mention this, because I like to see myself as a caring person. It is one of the attributes that I feel able to ascribe to myself and use without difficulty on job applications and forms. A recent exercise in seeking out ideas for my intended change of occupation, puts a number of caring activities firmly on the list. It has been suggested that I might enjoy working with people who have physical and mental difficulties to overcome in order to live their daily lives. Well this last week has provided a reality check on that one. I have been reminded once again of the truth about caring. Caring, like love, is costly. It is relentless, hard work, selfless, all-consuming, challenging and yet mind numbingly tedious. It is not just about the odd cuddle here and there.
Yet millions of people all over the world are doing it day in, day out, for their loved ones – often until they are literally on their knees with exhaustion and despair. Many more are caring as a profession, with low pay, long hours and very difficult circumstances to endure. Almost without exception, each one of the professionals I have met over the years who have had a hand in caring for my mother (and there are many) have displayed impressive amounts of caring, patience, tolerance and respect in their duties.
A few years ago, when I started thinking about my future in the job I was in, I considered taking a career break in order to spend some time helping to care for my mother. At the time, it seemed like the best solution to a difficult situation with my father heading for prolonged cancer treatment and Mum’s needs increasing. I knew it would be a challenge, but I honestly thought that with the help and support of my siblings, I would be able to do it. The plan never came to fruition, and sadly now I know otherwise. I know that it is one thing to feel that you care about something or someone, but it is quite another to show this in your actions, minute by minute, hour by hour, day by day and night by night.
I present to you (with the full intention of maintaining respect for both my parents whom I love dearly) a flavour of the challenges of caring:
On Monday afternoon, I head three hours north for a two-night stay with my parents in order to facilitate my father’s day trip to the hospital for surgery on Tuesday. Before leaving I phone home to enquire whether it will be necessary to buy food for a meal upon arrival. I speak to Mum who shows all signs of having followed and understood the conversation. Dad had taken a half hour break from Mum to run down to the allotment and plant a row of leeks. Having fought the continuing insistence of my body to shut down and sleep, despite the unplanned stop for caffeine, I arrive. I am exhausted, hungry and grumpy. The evening meal has been eaten and there is little food in the house. Truth number one – caring is not about being in control but requires an unflinching ability to ‘go with the flow’. Instead, I am unsettled by the sight of the sink. Undeterred, the washing up is tackled in due accordance with the rules of the household regarding draining and disposal of tea leaves, minimal use of washing up liquid, correct procedures for rinsing and recycling and returning each item to its specifically designated place in the kitchen. And all the time, despite it being probably over a decade since Mum had any influence in the kitchen, my subconscious is telling me – “I want my Mummy back”.
Dad rectifies the food situation by finding fish and chips in the freezer, I feel bad that he has gone to this trouble whilst he in turn feels embarrassed at the situation. I realise that both my parents still have a psychological need to be caring for me even when circumstances suggest that the reverse should take over. I am still their child. Truth number two – role reversal is uncomfortable, awkward and does not happen naturally. This truth is to be illustrated repeatedly over the next couple of days.
Next up, I have a nice chat with my mother. This inevitably involves shouting which sometimes accelerates to fever pitch in frustration. At best, there is relentless repetition of critical words in a procedure that resembles a rather agitated, high volume game of Chinese whispers. So we switch topics. Mum does the talking…”does my husband have a job?” she asks. Perplexed by this question, I impatiently inform my mother, who has recently scored full marks in the tests for dementia, that indeed he does, but inside my heart has given up on the conversation. Truth number three – dementia or not, the decreasing lack of knowledge and ability in the cared for, to engage in what is happening in the carer’s life can cause isolation. Again, there are to be constant reminders of this over the next two days.
Mum requests a visit to the bathroom. As I hold her steady in the transfer from chair to wheelchair, her bones are literally squeaking, crunching and creaking. I can feel and hear hundreds of tiny movements and her vulnerability is frightening. I remember with longing, the distant days when she would at great cost in energy and effort, walk with me to school. Instead, I am required to help her undress sufficiently to use the toilet and when called back later, we enter into our regular argument about whether she has washed her hands. I know that she hasn’t. She angrily protests that she has. My gentle, caring, loving response fails to emerge as I battle with the knowledge that it is now Mum that is hiding the truth from me and not me hiding the truth from Mum. I am concerned that poor hygiene will result in yet another UTI. Truth number four – constant physical and mental attention is required in the battle for safety and hygiene.
I turn my attention to arrangements for the next day. Dad is too mentally exhausted to have addressed the transport arrangements for getting him to hospital for 8 am. We both acknowledge and confront the obvious fact that Mum cannot be left for the hour it will take me to transport him and return. We establish that Mum’s overnight carer is unable to stay later until I return. It is too early for buses, the assistance of neighbours or the Plus Bus scheme with which both my parents are registered and there is a resistance to booking a taxi that today’s generation would fail to understand. So it is decided that we will leave early so that I can return before the paid night carer departs. We have no energy to address what might happen at the other end of the day. Truth number five – making straightforward arrangements for an isolated event are never simple or straightforward. They often sap the life energy out of the carer. Leaving Mum even for half an hour is probably high risk and unwise. Prior to her latest hospitalisation, she had a panic alarm strung around her neck, but we have realised that she does not have the ability to raise the alarm if needed, and so that potentially life saving service is no longer an option.
Mum is trying to undress in readiness for bed. The carer arrives at 11.30 pm but sometimes Mum likes to be ready for bed before then. She is struggling to undo a button on her blouse and after about 5 mins asks for help. I realise that the button she is struggling with, is in fact a sticky sweet stuck between the layers of her blouse. Sweets are now habitually squirreled away at every opportunity – preferably unwrapped, as Mum can no longer unwrap them for herself. So at the hint of a chance, she will coerce anyone who is willing, into unwrapping a sweet. These go into pockets, her handbag, down side of chair, under pillow, up sleeves and inside tissues. We discover that Werther’s caramels have a particular propensity to soil garments unpleasantly. I am asked to unwrap a bar of chocolate so that it can be stored in Mum’s handbag in case of need. Truth number six – losing independence is accentuated in the small things of life which become just as distressing to deal with as the major issues – for both the carer and the person being cared for.
The paid carer arrives for the night. I wonder if she finds it odd that I am here and not volunteering to take on the overnight care. This makes me feel inadequate. How can it be that a mother’s own daughter is not prepared to get up through the night to assist with getting on and off the commode? I tell myself that it is to do with preserving dignity but I know this not to be the primary reason. I just don’t have the stomach for it. Thankfully, I have not yet been audibly challenged on that account. The night passes to day without event, and the hospital drop off is completed in time to release the paid carer to a day of rest. The 7.00 am rise is, however, a daily event in this household, despite the fact that my father’s natural pattern in retirement would be to get up late morning. He needs more sleep. Schedules are dictated by times of carer visits and astronomical costs mean that late to bed and early to rise have become essential. Truth number seven – schedules and daily routines are taken over and dictated by external authorities. Choices rarely feature.
We settle in for a day together – just Mum and I. Foremost in my mind is the accurate administration of drugs: seventeen tablets – with adherence to the specification as to whether they require chewing, swallowing, taken with liquid, on an empty stomach, with food, or half an hour before food. There are some optional medications to be taken as needed. Additionally, three eye drops of two different kinds must be administered at appropriate times and to the correct eye. At this day’s first request for pain killers, a single tablet plummets into the recesses of clothing, chair, or surrounding boxes of mail catalogues and is never to be seen again. This is clearly registered to Mum’s subconscious mind….but not her conscious one, for now. It is some hours later she is to be found frantically searching for the dropped medication which has now surfaced as an urgent problem to be solved.
I need to get to the shops otherwise there will be nothing for tea – it would be good to have a lovingly prepared meal to welcome Dad home. Having assessed Mum’s strength and enthusiasm for the day, I realise that my planned adventure by wheelchair to the shops is not realistic. She would have delighted in that a year or so ago. I can just about manage a round trip to the local Co-op in 20 mins, which if timed carefully around toilet visits, will not constitute too much of a safety risk. Today, I need to wait for the district nurse to arrive and administer Mum’s life saving monthly B12 injection. She has a morning visit booked. It is beyond mid day by the time this visit has occurred and all I have done all morning is waited and watched. Mum has been sleeping although she will deny it. I realise that I have developed hospital brain. This is a phenomenon that I am familiar with from long hospital stays with my son over the years. Somehow, when in a caring role over which your control of the situation is minimal, the brain goes into standby and all normal activity is suspended. Truth number eight – whilst caring is not full-time in that if you added all the spare minutes together there would be a sizeable chunk of time in which you could turn your attention to something else, in practice, this does not happen. Caring is all-consuming.
Mum and I battle over the position of the wheelchair required in order for her to transfer with minimum effort. She is insistent that it needs to be closer. The wheels are already jamming into the side of the chair and any closer will result in her legs being squashed. This argument is repeated every time she makes a visit to the bathroom. These are the only visits she does nowadays – apart from hospital visits and the occasional trip to the dentist. Despite her fragility, once she has decided that she is on the move, the move happens quickly. She no longer waits or allows time for the brakes on the chair to be applied. I need to be alert to ensure that the chair does not fly back as Mum thumps down in relief. I need to listen out for her cry that all is finished to ensure that safety procedures are followed at the other end of the trip. Once safely back in her chair, she spots an object that she doesn’t recognise on the bookcase at her side. Can you pass me that dear, she says, I will put it in my pocket for later. I have no idea what the object is but pass it to her as requested so that she can see for herself that it is not the bar of chocolate or sweets that she obviously has in mind. But she doesn’t recognise this and I have to hastily retrieve the object when she reveals that it is, in fact, a sharp cutting knife whose safety catch she has amazingly managed to disengage whilst investigating the object in question. Truth number nine – there is a constant battle for independence going on which has to be weighed up against clear thinking and safety. This battle is emotional, physical and mental for everyone involved.
I call the hospital and realise that despite not knowing when Dad will be able to come home, arrangements will have to be made somehow. I learn that he will be coming home with a catheter. The information had been buried somewhere in the paperwork that the hospital had sent but unsurprisingly dismissed as too complex and unpleasant a possibility to consider. I try not to let the events that followed on from the last post surgery catheter enter my head. I know that they will certainly be in his head. Several phone calls are made including one in which I call the wrong Ann. This results in a bizarre conversation in which I have to backtrack rapidly. The explanation for my mistake is only going to sound ridiculous and cannot be made without digging a big hole for my father to climb out of once I have gone. So I refrain from the explanation. Answerphone messages, husbands and volunteers all come into the mix and I am now awaiting calls back from several people, as well as the hospital. As Mum can no longer take a reliable message on the phone, I can’t go out. Prospects for that home cooked welcome back meal are not good. A befriender in a local volunteer scheme agrees to come to the rescue and free me, at some unknown time, to pick Dad up. The hospital tells me that Dad will need to revisit on Thursday morning. I have not planned to be with my parents on Thursday morning. I have to decide (or so it seems) which is more important….looking after my parents’ needs, or continuing with my own life. Truth number ten – caring comes with a constant guilt trip. However much we engage, the questions will keep coming – could I be doing more? Am I being selfish? I talk myself out of staying, on the grounds that two people would be needed – one to escort Dad back and forth, and another to look after Mum for an unknown length of time. As I am finding that she is needing help with personal care, the volunteers are only good for an hour or so – they are not allowed to help in this respect. And so, I begin the process of looking into respite care for Mum.
The call from the hospital comes at rush hour. There is stress as we sit in a queue of traffic causing a half hour delay to the half hour journey home. We are indebted to the volunteer and don’t want to take advantage of her or put her in a difficult situation. Dad has had a general anaesthetic and an uncomfortable procedure and yet everything continues to focus around the needs of Mum. I am immensely saddened by this. As soon as we are home, I am off to the Co-op to pick up microwave meals for our dinner. It should have been different. Later on in the evening, Dad complains that he has no energy. He says he has done nothing all day, and can’t understand why he is tired. Compared to what he is having to focus on day in, day out, at home, I reflect that he probably feels like he has had a day off!
We spend the evening discussing options for dealing with Thursday. We spend the following morning putting the plans into place. Mum gets it into her head that she is having to stay in the local cottage hospital for three weeks, rather than the three nights that we have booked. She worries about the cost. She worries about the packing. She worries about having sweets to take. We explain again, that it is actually cheaper than the overnight care which she is now paying for.
Thankfully, Mum appears to have no recollection of the events of the night. I wish the same could be said for myself. Disturbed at 4.00 am by a polite knock on my bedroom door and a request for assistance from the carer, the next hour turns out to be as in a nightmare. I am amazed at the level-headed, calm and respectful manner in which Jo is dealing with the situation unfolding. She inspires me to be the same. As I hold all of Mum’s weight on me for a good 15 minutes she panics. She wants to, but must not, sit down. I tell her I have her weight and will not let her fall but she is in a blind panic. She has been here before. She knows the consequences of a fall – broken neck, broken hip, broken femur are all on her list, along with many long hours spent on the bedroom floor waiting for ambulance services to arrive. I have not been here before, I am strong and grateful for those hours spent at the gym but amazed at the strength required to protect a panicking frail old lady. After the event, the real carer and I sit together for a cup of tea to recover. I now have memories of my mother that I have been trying to avoid for several years. Dad may have feigned sleep through the incident, but it will have had its impact on him too. I know that this event will linger and remain in the air always. It has been a defining hour in understanding the cost of true caring. I fail to sleep and at 7.00 am the new day starts.
There is a letter from a friend of my parents in the kitchen. I am in the habit, with permission, of reading such letters for news of old and dear family friends. This one is poignant. It reads “I hate getting old as I am sure you do, but as I don’t know if I’m going to heaven or hell – I’ll keep going”. This family friend is a saint. She is not perfect and is sure to have made mistakes in her life. But to me, she is a saint. After all, she cares for a husband with advancing Alzheimer’s. Her whole life must resemble the two days I have just described. She, like my Dad, is a true carer. That place in heaven is waiting for them if they did but know it.
At 10.00 am Dad emerges after a rare chance to catch up on some sleep. He apologises for me having to deal with Mum overnight. It is less than 24 hrs since his general anaesthetic, yet his own health problems are brushed aside as he starts to pick up on his duties – this is just life as normal for him.
And so it is that I have learned the truth about caring. There is no such thing as passive caring. Caring is defined by action and longevity. It is no more about a quick cuddle than it is about a tenner on a friend’s sponsorship page. If you think you care about a person, or a situation, then put that care into practice. Take some action and then find out how much you really care. It will be a truly humbling experience.
For me, I recognise that where family members are concerned, a whole set of additional challenges come into play but I think I might just use that word ‘caring’, with a little more care in the future.
Photo credit to Paul Talbot