All About My Mother

All posts in the All About My Mother category

Infections and Hospitals

Published 13/08/2014 by damselwithadulcimer

It’s been a difficult time. When visiting mum a few weeks ago she was having trouble getting out of her chair; I put this down to a mobility problem and helped her up. The following day I had a phone call from Careline (the company that responds to her calls for help when she presses the button on her bracelet) telling me that she was again unable to get out of her chair. Knowing her afternoon carer would be there before me I let it go and hoped for the best. A little later my sister phoned to say that mum had pressed several times (in fact about 12 in total) and that I should go over. When I arrived she was in bed and four attempts at standing up proved futile, so I phoned for an ambulance. She was duly taken to A&E, diagnosed with a UTI and sent home with antibiotics. 72 hours later I had a phone call from a paramedic who was with mum, as she had again pressed for help numerous times. She was persuaded to go into hospital, diagnosed with a chest infection, and remained there for three days.

From our point of view, which was endorsed by her carers and other health care professionals, she really needed to be in a care home. My sister tried to persuade her of the benefits of one we had found not far from where she lives, and that would also allow her to take her cat, her ‘baby’. Still she dug in her heels and insisted she wanted to go home, so back home we went. I organised another assessment with her social worker for the following Monday and in spite of everything he pronounced that she still had capacity and could not be forced to go anywhere she didn’t want to go to. So the two of us continued to operate on high alert with our anxiety and stress levels building, wondering when the next fall or hospital admission would occur.

We didn’t have long to wait before the buzzer was pressed more and more frequently and she was again admitted and kept in for two nights. Her discharge home was not an easy one. She was delivered by patient transport, which was actually a man driving a minibus, and not a paramedic or somebody with any kind of medical training. She beckoned to me with a face like thunder and screamed that she had been waiting since 9 o’clock that morning – it was now about 2pm. I had to help her down to her waiting Zimmer frame, but she was not strong enough to use it to walk into the block and her own flat, so I had to dash back in again for her wheelchair. When I asked the driver if he could just make sure that she was steady until I got back, I was informed by one of the other passengers that he was ‘only the driver’.

By 4am the following day she was again calling for help; an ambulance was duly summoned but she remained at home. Since then she has been more tired and lethargic and when I visited earlier this week she didn’t even have the energy to get out of bed. On the advice of the Alzheimers Society we have bumped up her care so that somebody is with her throughout the night, and we are trying to arrange for care during the rest of the day. At least the presence of another person will stop the panicky demands on Careline, who are often unable to elicit a response because of her poor hearing, so feel they must send another ambulance. One major problem is that the response time can be up to four hours.

We are still working on the idea of residential care, but not sure how on earth we will manage it, especially if she is too weak to get out of bed and walk to the car. In addition the home will initially only assess her during the day and overnight. It is apparent to everybody but her that she needs to be looked after in a caring environment where there are skilled people, friendly faces and nutritious meals. Where there will be somebody to reassure her when she gets worried and confused and above all where she will be in a place of safety. We haven’t given up hope yet, but we have to contend with her independent stubborn streak that makes her too obstinate for her own good.

Mother Doesn’t Always Know Best

Published 24/07/2014 by damselwithadulcimer

As a post-war baby boomer I was brought up and taught by my mother to speak only when I as spoken to, not to answer back and generally to respect my elders as it was implied that they were wiser and had more experience than me. I now know that wisdom does not necessarily come with old(er) age, especially when the senior person has dementia.

Our concerns and worries for our mother are constantly being raised. Within the last fortnight she has been to hospital twice: the first time she was diagnosed with a UTI and sent home with antibiotics, but within 72 hours she had been readmitted. This time she was found to have a chest infection and remained under the care of the NHS for a further three days. Prior to these diagnoses she had been having problems with balance and had been experiencing light-headedness and dizzy spells, which were a huge cause for concern as she has had countless falls over the past 16 months since breaking her hip. On some days we were told that she had been using her Careline emergency bracelet button to summon help as many as twelve times in a twenty-four hour period. Given that she lives alone and that we are both about 15 miles away, which can translate to a driving time of between 40 minutes and up to two or more hours, we are both on high alert. Especially as an ambulance, when summoned, can take up to four hours to attend to her.

Whilst she was in hospital my sister and I were hoping to persuade her to move to a residential home, if not permanently, at least for a week or two. Our belief was that she might lose track of time and be happy to remain in the home we had found, especially as they were happy to take her precious cat Millie. Our optimism was soon dashed by her intransigence. When my sister visited her the day before her discharge she constantly told everybody within earshot that ‘I want to go home now’. We both arrived at the hospital the following day, hoping beyond hope that we could get her to agree to go directly there by ambulance. No way. My mother always gets her own way, and that meant she was going nowhere but home.

Her Friday afternoon/evening discharge was followed by a weekend when her care package was increased to four visits a day and her two knackered daughters refrained from visiting until the following Monday to liaise with her social worker. Although her dementia seems to have increased and she now confuses timescales, insisting that she had been an inpatient for three or four weeks, plus she also seems to be behaving in a more childlike and naive manner, she was still assessed as having the capacity to decide where she will live. At least in her own home she is at liberty to smoke as much as she likes. On the ward she kept repeating that they allowed her to smoke both by her bed and in the toilet. No matter how many times we and the nurses told her it was not allowed, especially as she had an oxygen cylinder next to her bed, she maintained that she had been smoking with permission during the weeks of her stay.

So from now and until she loses that capacity she remains home alone (with four daily visits from her carers, plus about three weekly visits from us) with her cat. She believes she can summon help from Careline whenever needed, although we have tried to make her understand that all they can do is request an ambulance if one is needed. We have also pointed out that if she persists in demanding the paramedics she will be downgraded to non priority and will have to wait up to four hours before they arrive. How would you feel if your frail, octogenarian parent had to lie on the floor unattended for all that time?

Crisis Calls Again

Published 14/07/2014 by damselwithadulcimer

Whilst out shopping on Saturday afternoon I took a phone call from Careline (the company that my mum buzzes through to when she needs help or has a fall). They told me that she was having difficulty getting out of her chair and had asked for assistance. I explained that it would probably take about an hour to drive across London and by the time I got to her home her carer would be due to make her afternoon visit. Sometime later my sister phoned to tell me that the carer was very concerned as our mum was feeling dizzy. So I packed a small bag and headed out, unprepared for the traffic jam, which did nothing to alleviate my worries.

On arriving at mum’s I found her in bed and it took us four attempts, at intervals of a few minutes between them, for her to be able to stand and keep her balance. Whilst she was resting before the fourth effort I dialled 999 and requested an ambulance. Once she was up and seated in her armchair, which seemed like an extra long walk with the Zimmer frame as far as she was concerned, she seemed fine and we chatted about the past. In the meantime my sister also phoned back to tell me she was leaving her friend’s house (in Hampshire) and wondered whether she should also come over. She decided she would and arrived before the ambulance, which turned up nearly four hours after I had placed the original phone call. I’m not casting aspersions or complaining as I made it clear that it wasn’t an emergency visit, but that I believed mum needed to be seen by professionals. I knew it was fruitless to try to contact a locum via her GP’s surgery. From experience I know that a doctor would be reluctant to make a house call, even for a disabled octogenarian, and would try to persuade us to take her to the hospital. Has said medical person ever met my intransigent, stubborn, single-minded mother?

The paramedics were absolutely fantastic. They tried to calm two stressed not-so-young daughters, explained how we should try to look at things from mum’s point of view and not our own. Pointed out that she probably had mental capability (which they later confirmed was true) and reinforced the stress awareness training, which I am currently undergoing. The upshot is that if she wants to remain at home, whatever the risks, she has every right to stay there. She has no idea how we worry and anticipate the worst (another aspect of my workshop that I am trying to put into practice). Do not project your fears onto events that you cannot control and that may or may not happen.

They eventually turned their attention to a sleeping mother, who reacted by telling the two of us to go home and leave her alone. She even suggested that we be locked away in the ambulance. Finally she agreed to be taken to A&E, with my sister driving behind the paramedics. I was so tired that I was unable to go anywhere, so agreed to remain behind and cat sit for my mum’s beloved Millie. So around 1am I crawled into mum’s bed and tried to sleep. Would you be able to close your eyes for long under the circumstances? The flat is like a sauna, and the temperature must hover around the high 20s, even in the summer. Every time I dozed I was woken by something: the rain, sounds of other people entering the block, the cat jumping in and out of the window. I seemed to be checking the clock every hour until my sister phoned around 7am to tell me that they were coming home.

Once back she informed me that mum had been diagnosed with another UTI and this could possibly be affecting her blood pressure. Although mum’s is always on the low side, it was not adapting when she raised herself to her feet, causing the dizzy spells. They have also recommended that her doctor refers her for a CT scan, just to assess her brain activity.

So two women finally left their mother in bed at around 9.30am yesterday morning and drove to their respective homes, bleary eyed and concerned for their mother’s safety. We will still try to persuade her (very gently, no bullying or cajoling) of the merits of a residential home where there will be somebody to care for her round the clock. Is this for her own benefit and safety or is it so that we can drop our vigilance and stress levels? Who can say? I’m sure I worry far more about her now than I did about my children when they were growing up.

My Demented Mother

Published 15/05/2014 by damselwithadulcimer

Once my mother had a firm diagnosis of vascular dementia, my sister and I decided it was time to tell her remaining friends and family.  Of course the first reaction we generally received was ‘Does she know you?’.  To be honest I didn’t know much about the various types of dementia so I suppose it is only to be expected that other people don’t really understand it either.  There was also the ‘coincidence’ of meeting other people who were suffering, or caring for sufferers.

Obviously the diagnosis has not changed anything;  I suspected dementia even when Mum was just suffering from Mild Cognitive Impairment.  Like a hovercraft daughter I am ever vigilant and looking out for changes and risks, and risk is definitely the most important factor.  She lives alone in a state that I refer to as ‘dependantly independent’, relying on visits from my sister and me, seeing her carers twice a day, and spending the greater part of her days alone.

We have talked about installing a Granny Cam as we often wonder what goes on in her flat when nobody is there.  Examples are the huge amount of bread that seems to disappear between restocking the freezer.  She is not particularly interested in food and usually opts for the quick fix of bread and butter.  Even when her carers offer her something to eat she responds that she is not hungry, so they just make her another sandwich.  She doesn’t eat her crusts, not because she can’t but probably because it is easier not to. Sometimes I make her a light dish of bacon and eggs, baked beans on toast, or suchlike but she rarely manages to finish the smallest portion.  Everything is usually washed down with cups of artificially sweetened black coffee, a throw back to the days when she used to diet, or glasses of warm fizzy drinks.  Nothing is refrigerated.  If she is offered a choice of what to eat, she always leaves it up to the person preparing the food.  She probably now weighs about 6st and is somewhere between a size 6 and a size 8.

Her time is spent sitting in her armchair and popping back to bed for another sleep.  She often wonders why she feels so tired, to which I reply that she is not getting proper nourishment and has no stimulation.  She has been out of the flat twice so far this year and it is now the middle of May.  Since breaking her hip fourteen months ago she has relied on a Zimmer frame for moving around her home and reluctantly uses her wheelchair for visits to the great outdoors.  Recently my sister and I have been encouraging her to play cards as it passes the time and keeps her brain active, although there are often occasions when she seems to forget the rules.

There are phases when she seems to fall frequently and the Paramedics are summoned to get her back on to her feet, but she always refuses to go to hospital to be checked over.  She still smokes heavily and probably doesn’t even realise that she has just finished one cigarette before starting on the next one.  She doesn’t seem to inhale any longer and just puffs away.  Another worry is that she often fails to extinguish her matches.  The arthritis in her wrists presents problems when it comes to using a lighter and also when it comes to waving out the matches, which are frequently tossed into an ashtray when still alight, or worse still thrown into the waste bin.  She burned one waste basket this way and chucked a lighted match into the bin in front of me recently.  My reactions were fast when I saw a flare of orange, but she appeared to be completely nonplussed.  Her clothes, sheets and rug are also punctuated with burn holes.  She has left food under the grill (luckily an electric one) and gone back to bed.  One of her carers found her recently, fast asleep in bed in a smoke-filled apartment.  The only upshot of this is that I have organised a safety check from a local fireman: practically every woman’s fantasy, and a change from the usual Paramedic in green uniform.

Because Mum is so tired she can’t be bothered to keep in touch with friends and family.  She ignores the phone when it rings, doesn’t check her messages, and never phones anybody.  This is all exacerbated by her failing hearing, which she refuses to correct by wearing her hearing aids.  People think she is annoyed with them, but the truth is that she can’t be bothered to talk to anybody, and indeed has nothing to talk about as she goes nowhere and sees nobody.

The most recent and upsetting change is to her behaviour.  She has begun to get bitchy and often picks on me, criticising my clothes, my shoes, my tights or anything else.  There are good days when everything is fine, but then there are the occasions when we revert back to the old days of little daughter trying to please Mummy and not managing to get it right.  A friend told me that, before her mother’s dementia was diagnosed, she picked arguments with family members.  I just try to remain my old placid self, but it is upsetting when you try your best and are just rewarded with snarky remarks.

It’s all a learning curve and we just have to adapt and adjust as we go along, finding our own coping and helping mechanisms along the way.

 

More about my Mother

Published 29/08/2013 by damselwithadulcimer

 

So now you have a rough idea of my mother and of her current state of health.  But she wasn’t born at 87 years of age; like all of us she has a life story. And as she gets older she reminisces more and more about the past.  She is the sum of her past life, and as her daughter I am partly composed of her and her memories.

To anybody interested in British social and political history, 4 May 1926 is an auspicious and important date.  The coalminers (in response to a reduction in their wages) had called for a general strike to begin at one minute before midnight on 3 May, so the dispute officially took hold the following day, the day that my grandmother gave birth to my mother.  The Britain in which my Grandma Jenny laboured to deliver her daughter was defined by striking miners, iron and steelworkers, railwaymen, transport workers, printers and dockworkers all withholding their own labour.  Her brother, my uncle Jack, frequently reminded us that, in the absence of buses, he had to cycle to Mother Levy’s home, the East End maternity hospital where my mum first saw the light of day.  Sadly after a strong campaign against demolition, the building was pulled down in 2012.

When mother and daughter returned to the family home at 39 New Road, it was to a very different East End of London than the one that exists now in the early twenty-first century.  They lived in New Road, a street that runs between Whitechapel and Commercial Roads, and they shared the house with her mother’s family. Her memories of those years are of close knit families living in the same neighbourhood, where the shops were geared to selling produce for the Jewish residents, and where friends and relations were in and out of one another’s homes as if they lived there themselves.

Image

Thanks to Google Street View, I was able to locate a picture of the house without needing to visit.  You can see all three storeys, as well as the basement railings enclosing the area, or the ‘airey’ as mum says it was generally referred to.

Thanks to Google Street View I was able to locate a photo of the house without needing to visit.

39 New Road

Immigrant Jews fleeing from persecution and pogroms in Tsarist Russia and anti-Semitic Catholic Poland had been making their homes in the overcrowded slums around Whitechapel and Spitalfields since the second half of the nineteenth century.  My mother is still unsure whether her family originated in Poland or Russia: I suppose it depends on where the borders were drawn at any given time.  My great-grandparents made the journey, on what my mother used to refer to as the ‘onion boat’ during the 1870s and 1880s.  I never knew Harris and Rebecca Angel, Jenny’s parents, but I wish had met them in person, rather than just visiting their graves in Plashet Grove cemetery.  The more my mother recalls those days, the more I can almost feel that I am there with her.  This is possibly also coloured a little by the memories I have of visiting the East End during my own childhood in the 1950s and 1960s.

Nowadays the area is a mixture of other immigrant groups (particularly Bangladeshis in and around Brick Lane) as well as professional classes, who have moved back to some of these streets, especially where the Georgian and Victorian properties have been restored and become gentrified.  A local estate agent is currently offering a renovated 1797 terraced property for £1.5m in New Road and a two-bedroom flat in Myrdle Street (now a conservation area where my mother went to school) is on the market for £450,000.  Myrdle Street School itself, which could be seen from my great grandmother’s house, has reemerged as a school for Muslim girls.  One immigrant group supercedes another.

The more my mum shares her early memories with me, the more I wish I had spent more time getting to know the older members of the family who were still alive when I was younger.  My sister and I are currently encouraging her nostalgia for a world that has passed us all by; there is almost an urgency for soaking up her past and impressing our own stamps on it as a means of preserving it for the future.  So many people have regretted not probing past generations for their recollections that I feel it is imperative to glean as much as I can while I can.  Prompted by our mother’s wishes my sister has also been trying to compile a family tree; we need to know where we have come from to truly appreciate who we are.

Obviously it is difficult to cast your mind back over a period spanning more than 80 years and we all know that our memories are fallible and subjective, but mum was nodding enthusiastically in recognition and smiling to herself when I read to her from Dr Cyril Sherer’s account of his childhood close to where she lived, and of his account of his time spent at Myrdle Street School.  He believes that those days before World War II shaped him, and I’m certain it had the same effect on my mother.

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.