Broken Hip

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Final Days

Published 12/10/2014 by damselwithadulcimer

Before I visited Mum after our return from holiday I phoned my sister to ask what I should expect. She thought I might notice a deterioration, but I wasn’t prepared when I went to see her on the Monday after we came home. I hadn’t seen her for two and a half weeks, but she had declined rapidly. I had been told that she had become even more demanding and that her carers were remaining with her constantly during her waking hours, which tended to be at night as she was sleeping a lot during the day. I had also been informed that she had a pressure sore at the base of her spine, which was being treated and dressed, but which was causing a lot of discomfort as she was propped, or was lying on her back most of the time. The carers were turning her and trying to move her onto her side, but she wasn’t comfortable in that position.

When I walked in to her room on that Monday her carer was trying to feed her; before I went on holiday she had always fed herself. I was terribly distressed to see her eyes: her beautiful green eyes were heavy, lifeless and sunken and I was struggling to hide my tears. Most of the time I was there I sat next to her and held her hand and she returned the grasp as firmly as she could.

The District Nurse had visited that morning and diagnosed another infection, which I was assured was causing much of the confusion she was exhibiting. I collected her prescription from her GP, took it to the pharmacist, and then back to the GP surgery as the wrong medication had been prescribed. Firstly they tried to fob me off, but I stressed the need for Mum to start on her tablets immediately, whereupon I was told that there should be a prescription for antibiotics at the chemist’s shop, but there wasn’t and the pharmacist had to contact the practice again before he dispensed the correct pills. Once back at her bedside with the medicine she had difficulty swallowing, and the carer had to request dispersible tablets, which arrived before the end of the day.

I visited again on the Thursday and was equally upset to see her. The nurse’s notes implied that she was a little better, but she seemed worse as far as I was concerned. Once more her carer was trying to feed her some soup with bread, but she just didn’t want food. She frequently asked for sips of her drink, interspersed with requests for a cigarette, although she had been unable to inhale for some weeks. Ever the polite, well-brought up lady, demands for anything were always suffixed with the word ‘please’. Frequently she was unable to speak, either from lack of breath and strength, or because the dementia was robbing her of language. She was dreadfully uncomfortable and her carer and I tried our best to settle her. Thanks to the hospital bed we were able to raise her head and shoulders to different degrees, plus to prop her with her pillows, or to turn her on her side to take the pressure off her lower back. She urged us to sit her up and then gestured with her hands if she needed to be higher or to be lowered.

Again I sat at her bedside and held her hand as long as she wanted me to. She seemed to drift from time to time, but never managed to fall into a proper sleep. At one point she appeared to drowse and asked audibly to ‘Take me there, take me there’. A while later she opened her eyes and pleaded with me to ‘Knock me out. Put me to sleep.’ I was unable to hide my emotions and she asked why I was crying, at which point the amazing Emma responded quickly ‘It’s hay fever’ and I rapidly improvised, pointing out that it was early Autumn and something in the seeds or the air was affecting me.

During that last afternoon I believe that her cat was aware what was happening and what was going to happen. She stayed close, at times on the bed (with mum caressing her with one hand and holding mine with her other) or under it or on a chair in the room.

The weather was bright and gentle that day, although I’ve been aware over the last few weeks that the year is starting to draw in and it has provided an apt analogy for Mum’s life moving towards its close. There have been some perfect autumnal days, the sort of time of year Mum would have called ‘Yom Tov weather’ as we often have an Indian summer around the time of the Jewish High Holy Days in September or October.

I must have fallen into a very deep, if apprehensive, sleep that night and missed phone calls on my mobile in the next room. I was suddenly dragged from my slumbers by the sound of the telephone ringing in our bedroom. It was still dark and I fumbled around the room, minus my glasses, groping for the phone. It was 6am and the voice at the other end was my sister’s urging me to come to Mum’s. Obviously she realised that I hadn’t understood and had to break the news that Mum was no longer with us. Nobody had tried to contact me on the landline and my sister had fully expected me to be at the flat, or on my way.

The two minutes spent brushing my teeth seemed like an eternity when I wanted to be on my way. I hurriedly dressed, no time for contact lenses, which would probably not stand up to the tears I knew would flow, grabbed a box of tissues and left the house. As well as still dark, it was also misty and I couldn’t drive off until my windscreen was clear. After a few minutes I realised I was dreadfully thirsty and blundered into an open shop for a bottle of water, not stopping to wait for my change, and then dropping my purse in the road in my rush to get back into the car.

I hadn’t expected there to be so much traffic on the road at that time of the morning and I have no idea how I managed the fifteen mile drive; it all seems rather hazy now. Arriving at the block of flat there was typically no parking space close to the front so I had to drive to the back, acknowledging the police car parked by the entrance. Rushing inside I was advised to take my time by the police officer in the lobby, and entering the flat I was confronted by the carer who had been with Mum at the end, her boss and another police officer.

Dee, who runs the care agency, was amazing to have left her bed at that time of the morning just to be at Mum’s, and she offered to cancel her appointments and stay with us (we declined as she has done so much and still had a business to run). The carer was visibly shaken to have encountered her first dead body, and the WPC was equally supportive, despite having lost her own father a few months previously. The police were called as Mum hadn’t been seen by a GP for some time and had died at home. An ambulance team had also attended before I arrived and taken a heart trace, confirming that it had been slowing down during the hour prior to death.

I don’t know how we got through the day. In an order I can’t even remember the Community Matron arrived to comfort us; the GP phoned to offer condolences and promised that she was sending the Death Certificate to the Coroner; we telephoned and spoke to the United Synagogue for guidance on what should happen next; a local undertaker arrived and advised us of the order of proceedings, although we were insistent that Mum was having a Jewish funeral so that his involvement would end there. My sister had to be firm with the Registrar’s office as we needed them to issue us with the Death Certificate and the Green Form on that day. It was tight as it was not only Friday, and the eve of the Jewish Sabbath, but it was also erev Yom Kippur, the day before the most solemn festival and fast in the Jewish calendar, and we knew that the relevant offices would close well before sunset.

We divided the hours between phone calls, official as well as to friends and family, and emails to family overseas. We said our goodbyes to Mum. I sat with her for some time, desperately trying to warm her up, and brushing her hair. She looked peaceful, although much older, but the puffiness had gone from under her eyes and her face was relaxed. I stayed with her after my sister had left for the Registrar’s office, massaged her hand through the sheet, convincing myself that it was getting warmer. I didn’t want the Rabbis to come from the Burial Society, although I knew their arrival was imminent. I kissed her forehead several times, refused to leave the room while they wrapped her in a sheet, and insisted that they were gentle with her as she was so tiny and frail. I watched while they carried the stretcher to the waiting ambulance and then she was gone. And then I threw myself onto her bed with my head on the V pillow where she had lain until a few minutes previously, and cried and cried for my mother who has now left this mortal world and is finally enjoying the peace she so desperately needed.

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Dementia isn’t just forgetfulness

Published 05/09/2014 by damselwithadulcimer

My mum’s dementia sometimes means that she forget things, especially in the short term. She can ask me several times an hour what day it is; her memory banks are entirely erased between the questions. She once saw a photograph of my father that was taken on their wedding day and she didn’t know who he was. She has even asked me (on more than one occasion) if dad is still alive, even though she went to his funeral more than 30 years ago. At other times she has asked me what he died of, or if he was killed. (He died of kidney failure after suffering another heart attack.) She insisted that a cousin of my father (who also died some years ago, and whose funeral we attended) brought her home from a family funeral a few months ago. She has repeated this scenario at least twice.

She gets confused about money, sometimes handing over 30p when it should be £30. Before she became bedridden she would have a couple of sleeps a day. Often she would wake up and be surprised to see me sitting on her sofa, although I was there before she took her nap. And yet when I visited this week and reminded me that it would have been her brother’s birthday, she immediately knew it was 4 September.

There are other changes that aren’t related to memory. Last year when she became housebound after breaking her hip she stopped wearing a bra, gave up applying makeup and refused to look in the mirror. She always used to be smartly dressed, insisted on wearing supportive foundation garments (bra and corset), never went out without applying slap to her face, and wore shoes with heels even though she had an arthritic back and legs. Above all she used to have a daily bath before dressing. Although she needed an electric seat to lower herself into the tub and then to lift her up again, she had difficulty using this after hip surgery, but eventually managed to get to grips with it again as long as she had assistance.

Over the last few weeks since she became bedridden she can just about get out of bed (again with help) to use the commode in her room; the bathroom is too far for her to manage now, even with her frame. As she doesn’t drink enough fluids, she rarely needs to empty her bladder. Sometimes she tries to get up, sits on the edge of the bed, and then just has to lie back down again.

In addition to these alterations, her personality is changing. She has round the clock care because she gets anxious when left alone. She may say that she doesn’t want somebody just sitting in her room with her, but if I leave her for a few minutes, believing she has nodded off, she soon calls for me and tells me that she needs somebody to be there. If she is left alone for a few minutes after her daytime or night time carer leaves and the next one hasn’t yet arrived, she frequently presses her alarm to call Careline.  Whilst she is awake there is very little to talk about now as she doesn’t have a great deal of interest in what is going on in the world. I often don’t have a lot of family news and wonder if it would be insulting to keep covering the same ground as I’m not sure if she remembers what I’ve already told her.

She also gets very impatient with me. If I need to leave her – perhaps to take a phone call or to send an email – I can hear her shouting and complaining in the other room. In her opinion I have come to visit and it’s rude to leave her to do whatever I need to do, or to make a fuss of her cat (as she often believes I am doing). She has been rather nasty with me on occasion, particularly when her hospital bed was delivered and she didn’t want to get out of her own bed. She told the driver to throw me on his van and get rid of me; likewise she made the same sorts of threats against me and my sister when we called for an ambulance a few weeks ago and the paramedics tried to persuade her to go into hospital as they were concerned about her. Life can be so cruel.

The independent, feisty Phyllis of old is a different person. I manage her financial affairs, make sure her bills are paid, and collect her Attendance Allowance. It wasn’t that long ago that she would take the money from me and put it in her purse, and she always kept her bag with her, whether in the lounge, in the bedroom or on the bed. Now it lies on the floor at the foot of her bed and I put the cash into her wallet. She is removed from the world and obviously has no idea that we are using her savings to fund her care. What the future may bring is anybody’s guess and I am in touch with her social worker to find out how we will be able to manage when the money runs out, or if they will be able to put the same amount of support into place once her money falls to the level at which they would help to finance her care. Life can be so cruel.

Happy pills are here again…

Published 13/08/2014 by damselwithadulcimer

It’s been a long journey since mum broke her hip nearly eighteen months ago, and was then diagnosed with Vascular Dementia earlier this year. At one time I used to visit once a week and we would generally go for a pub lunch or afternoon tea, now I visit twice a week and have trouble finding things to talk about. As time goes on she has less and less interest in the outside world, friends and family and no longer follows her beloved soaps on the telly. Her frailty and disability mean that leaving the flat involves a great deal of effort. An able bodied person would feel tired contemplating the difficulty of getting her ouside and into the car.

Initially Careline, with its accompanying red buttoned bracelet was a safety back up; now it is pressed with increasing regularity and ambulances arrive and paramedics pick mum up from the floor when she has fallen and persuade her to go to hospital when they think it necessary. There are the other occasions when she summons help but can’t hear the responder at the other end, so of course they send in the emergency services as a precaution – what mum refers to as the army and the navy arriving. We’ve given up dashing over when Careline phone telling us that mum has been buzzing: we are aware of our physical and mental weaknesses and the need to try to conserve our strength. As she still refuses to move to residential care, we remain on alert, anxious and worried what each day will bring.

When we were visiting every day after mum’s discharge from hospital with a repaired hip, we soon realised that we couldn’t carry on indefinitely. The almost daily hospital visits, plus more than three weeks of going to her home every day (in my case remaining until she was safely in bed at night) began to take their toll. So we scaled back, in my case to twice a week as I have already mentioned.

I could feel myself becoming tired, ratty, irritable and tearful, but believed I needed to do my best for my mother. Whenever I felt exhausted it somehow never seemed like exhaustion when I moved on to the next level of even greater fatigue. For some months I (who rarely have trouble sleeping) have been suffering from various degrees of insomnia.

I gleefully pounced on the opportunity of taking a course of stress management workshops provided by my local Carers organisation. Believe me it is easy to do the theory, but trying to practise positive thinking, flip the negativity and fit in relaxing meditations is not as easy as you want it to be. We all bonded well and it was therapeutic to discuss our caring roles and their challenges with others in a similar position.

I also attended dementia awareness workshops, which will lead to another regular support group. In addition I have been seeing a counsellor for about a year and trying to work through problems that go back to my childhood and are now compounded with everything else happening in my life.

The final straw was when I needed to visit my GP at the weekend and the waterworks welled up again. She insisted on anti-depressants and I didn’t argue. If they take the edge off the anxiety and the stress I don’t care. This hamster is unable to climb out of her wheel at present, so she keeps whirring round and round and swallows her pills like the good little girl mummy taught her to be.

 

When you have to worry about your mum as well as your children

Published 23/06/2014 by damselwithadulcimer

Somebody once told me that you’re never truly grown up while your parents are still alive. Well my dad died more than 30 years ago, but you’ve probably seen from some of my other posts that my mum is still with us, even if not in the best of health.

When we were children I can recall my grandma worrying about us, and my mum’s response used to be that she couldn’t wrap us in cotton wool. My sister and I grew up and made our own lives and mum continued to live hers in her own way. Sometimes it seems that she’s invincible: a heart attack, a close call with pneumonia, a broken hip and now dementia. A few years ago when she was healthier she used to give me pep talks and remind me that she wouldn’t be around forever but her GP has referred to the indomitable spirit that has kept her going.

However (I bet you heard that word coming) she is becoming weaker and frailer. Her lack of interest in food means that her calorie consumption has dropped with the resultant loss of weight. She probably has no idea what she looks like as she won’t permit herself to use a mirror. The lady that was known for clacking around on her high heels now slops around with back-trodden slippers, using a Zimmer frame for balance. Her pride in her appearance has gone as she has no interest in checking it. Her former insistence on foundation garments (a good bra and a belt) has been transplanted by going bra-less and wearing knickers that are several sizes too large, and sometimes the latter fall off so she goes commando at home. Make up is now never applied, with the exception of a bit of lippy for a funeral a few weeks ago, she hasn’t had her hair done for more than six months and many of her clothes have burn holes from the careless discarding of cigarettes.

This morning my sister phoned to tell me that even mum’s carer was concerned at her lack of energy and interest. All she wants to do is stay in bed and sleep, or go back to bed for another sleep if she has been persuaded to leave her bed. The mother who would never get dressed without having a bath, now has to be coerced into getting in the tub about once a week, and often shows a lack of interest in even having a wash.

I’m sure many others have been in my position and it will continue to happen. But how do you stand by whilst a loved parent neglects themselves to such an extent? She isn’t tempted by food, stating that she’s never enjoyed it anyway. The less she eats the more her stomach shrinks and the less she can cope with. A while ago I scrambled two eggs and put them on two small slices of toast: one for her and one for me. Even her portion was more than she could eat. She used to love my scrambled eggs, and my husband is often critical of ones that are served in restaurants or hotels, preferring my lighter, fluffier home-made versions.

Unfortunately I missed the doctor’s responses to my phone call, so will have to speak to them tomorrow although I don’t know what they can suggest or do. She refuses to drink the Complan that has been prescribed to add to the few calories she consumes, and all the health care professionals state that she maintains capability so her wishes have to be respected.

Tomorrow I will visit again, armed with another 200 cigarettes as she values them more than she does food. I will again phone the doctor and see if somebody can visit her at home while I am there, so that I can countermand her declarations that she is fine. If she isn’t too tired I may be able to encourage her to watch some Wimbledon tennis on the television, or I will deal the cards for a few more hands of kalooki, and I will again try to coax her into eating something, in spite of her protestations that she doesn’t really fancy anything.

And all the while I will try to put into practice what my counsellor is trying to instil in me: the fact that I am important and do matter and must take care of myself, and I will also attempt to work on the de-stressing strategies and spare some time for relaxation meditation before my next workshop to counteract the stress of keeping all the balls in the air at the same time.

One rather tired hamster wants to climb out of her wheel until tomorrow and build up the reserves needed to cope with another day. If only I could get a good night’s sleep. The irony is not lost on me: my mother just wants to sleep, and I can’t.

Mothers and Daughters: in Sickness and in Health

Published 16/08/2013 by damselwithadulcimer

Five months ago my mother did what every daughter dreads; she fell and broke her hip (the precise medical term is a fracture of the neck of the femur).  Our experience of the National Health Service was very different from the headline revelations in the newspapers at the time.

She was initially taken by ambulance to her local hospital, and was then transferred a few hours later to St Mary’s in Paddington for surgery.  We made jokes that the hospital transport was in conjunction with DHL, but she arrived safely, was not lost in transit and arrived on time. In spite of tales of doom to the contrary, the operation to pin her hip took place on a Saturday, she survived the weekend and by the following Monday she was being attended by physiotherapists attempting to re-mobilise her.  It was a slow process, but she was eventually discharged from hospital two weeks after her initial admission with a package of three home carers per day. The local council in conjunction with the hospital also supplied a frame around the lavatory, a commode for use in the bedroom (to save walking to the bathroom at night) and fitted a rail to the side of the bed.  The Zimmer frame that came home with her was a godsend.

The hard work began once she was back in her own flat, which is luckily on the ground floor.  The first carer arrived around 7.30am on the day after discharge.  Unfortunately mum was not completely wide awake when the bell rang and she managed to fall on her way to opening the front door.  The paramedics were again summoned but no damage had been done so she wasn’t taken back to hospital.

From then on the daily visits were shared by the three carers: one in the morning to help her up, get washed and dressed (initially it was just to change one nightdress for another one), get her something to eat and prompt her to take her medication.  The lunchtime carer saw to food and medication, and the evening carer took charge of a strip wash and change of night-clothes, as well as reminding her to take her pills.  In addition my sister and I visited every day for more than three weeks, fussing over her like mother hens and attending to every other need, and probably doing far more than we should.  We actually overdid what was necessary and encouraged more dependency than we should have, but that wasn’t apparent until sometime further down the line.

One thing we soon became aware of is of how dedicated the home carers are.  They are paid disgustingly: not much more than the minimum wage and do not receive any payment when travelling between jobs.  The majority rely on public transport and some of them work 12 hours a day just to earn enough to live on.  The media is now drawing attention to the practice by many companies of zero hours contracts; most of these carers, who are employed by agencies, fall into that category.  Our capitalist society values productivity and financial gain over care and compassion.  In a country where the older population is outgrowing the younger members of the community this is a sorry state of affairs that should be addressed at government level.  Most of us will become old or infirm in later life and the value attached to human beings and the care they need is far more important than money made, squandered or gambled by bankers and businesses.  Every housebound elderly person is or was somebody’s mother or father, aunt or uncle, brother or sister and deserves to be treated as a person who matters and should be regarded with dignity and respect.

In addition to the package outlined above, mum was also assigned a care coordinator (as part of the re-enablement service) and received weekly visits from a physiotherapist.  Unfortunately my stubborn, Taurian mother disregarded a lot of what the healthcare professional told her and neglected to do her exercises unless nagged.  The result is that after five months she has still not regained full mobility in her right leg and remains dependent on us.  After five months, journeys outside of the home are a struggle that exhaust her and tire us.  She insists that her legs work, when they obviously don’t, hates using the two sticks that have been provided and insists that she can walk better with one.  Although her GP and her physiotherapist have patiently explained the benefits to her, her mobility and her balance of using the pair, it is an uphill battle.  She flatly refused to use the three-wheeled walker that was supplied and argues against going out in the portable wheelchair that I acquired from a friend.

Thanks to healthier diets and better healthcare we are all living longer.  Older daughters (and sons), such as my sister and myself, will fall into the roles of our parent’s carers as long as we are fit and healthy enough to do so.  Twenty-first century parent/child role reversal seems to be here to stay.