Mother

All posts tagged Mother

We never forget our loved ones

Published 16/06/2016 by damselwithadulcimer

If you’ve followed my earlier posts you will be aware of how my sister and I cared for our mother as she gradually declined and succumbed to COPD and vascular dementia. The lady who had insisted for years that she wanted to be cremated, had a change of heart in her final months and decided that she wanted a traditional Jewish burial when her time came to join her ancestors.

As Jews we followed the demands of a funeral as soon as possible after death. We sat Shiva, (the Jewish practice of mourning the passing of a close relative in a family home, whilst friends and family visit to pay their condolences, and a Rabbi attends to lead prayers in the evening), although only for one night and not the customary seven.

We also carried out the practice of erecting a headstone over our mum’s grave, but not until at least nine or ten months had passed. This is so the ground has a chance to settle. We gave the tombstone a great deal of thought, finally deciding on a colour that we thought mum would have liked, and choosing one that was not too high as she herself never grew beyond 4 feet eleven inches. In addition we took a great deal of care over the wording on, and the design of, the memorial monument. Apart from the traditional Hebrew lettering, we chose the epithet, in English, ‘To live in the hearts of those we love is not to die’. This has rung true more and more over the last year or so.

Mum is often in my thoughts and it’s hard to stop myself short when something happens and I would love to pick up the phone and tell her about it. She used to say the same thing to me in respect of her own mother.

My cousin recently reminded me that it was 45 years since her father, my uncle and mum’s brother, died. Returning to the Jewish religion, we mark the annual anniversary of the passing of loved ones, but we commemorate the date according to the Hebrew calendar. This is known in Yiddish as the Yahrzeit, literally the season. When the date comes round we light a memorial candle on the evening before the actual day (Jewish days begin at sunset the previous evening) and this candle burns for 24 hours. My uncle’s candle has now finished burning. I also asked the Rabbi to read out his name during the Shabbat service on Saturday morning, which is done on the closest Saturday to the Yahrzeit.

My awareness has now been brought to the death of my own father 34 years ago, the date of which will be commemorated at the end of this month. Once again his name will be read out before we recite Kaddish, the prayer for the dead that is chanted both at funerals and Saturday morning and festival services, as well as on Yom Kippur (the Day of Atonement), that most sacred of the High Holy Days, a time spent repenting and fasting. Included in the service is a portion known as Yizkor (a Hebrew word meaning ‘remember’). When I was a child my mother used to send me out of the Sanctuary for this section of the prayers as my  parents were still alive. Now that they are no longer with me, I remain, remember them, and grieve for what I have lost.

My own Liberal Jewish congregation also offers an alternative ‘spiritual and meditative experience’ to the Yizkor prayers on Yom Kippur. This is a much more intimate and inclusive occasion, and one which brought back the memories of mum’s death with deep poignancy when I took part last year for the first time since she had left us. Perhaps I should also mention that the Hebrew date of mum’s passing was on Kol Nidrei, the evening that commences before Yom Kippur, but which signals that the Day of Atonement has begun. So not only do I remember my mother at that holiest time of the Jewish calendar, I can never forget that was when she died too.

Therefore Judaism provides reminders of those who have passed, but who remain forever in our hearts.

Memoires du Maman

Published 28/01/2015 by damselwithadulcimer

Shortly after mum became housebound my sister and I decided that we wanted to try to capture her memories, so we both used to take our laptops over to her flat and encourage her to reminisce as we recorded her recollections of a time before we were born. We called our transcriptions Memoires du Maman because they were her experiences; now that it is nearly four months since she left us I find myself remembering her in many different ways, often triggered by the slightest of events and places. It is incredibly hard to resist the impulse to phone her up just to chat about such and such or so and so, and I have to remind myself that she is no longer at the end of the phone although I can hear her answering in her distinctive manner ‘6066’. She never said hello, but always gave the last four digits of the number.

Clearing out her flat wasn’t as painful as it could have been, although I kept recalling snapshot images of her sitting in her armchair in the lounge, or the more poignant memory of her lying in her bed after she passed away. I’ve also found myself remembering her in my armchair, where she sat when she visited, or sitting in our garden. I even see her face sometimes when looking in the mirror, especially as my eyes are like hers, and that reawakens the image of death that was present in her eyes in the few days before she died.

Walking around central London recently brought her back to life in so many places where I had been with her, as well as the streets and areas she introduced me to as a child and as a teenager. Wardour Street was where she worked in the film industry as a young woman in the 1940s, and where I later found employment. Berwick Street was where she shopped for fresh fruit and vegetables. I too used to buy from the same stallholders, although it is much changed now. The stall where she used to buy mushrooms is no longer there, neither is the pub outside where it stood. The fish and chip shop (the Chinese Chippie as we called it) is still in situ, but the food is probably fried by different hands now, and I have no idea if it tastes as delicious as I remember it.

Not for away in Marshall Street I came across the newsagent where she once worked, owned by Monty, who was also my employer at a gift shop in a Piccadilly hotel. I had to remind myself that I would not be able to pick up the phone and ask her ‘guess where I was today?’ We could have enjoyed some marvellous memories if she had been at the end of the line. Mum loved London and could travel around in her mind, long after her legs refused to carry her on and off the buses that she enjoyed using. She once told me that she enjoyed sitting on the top deck and looking into peoples’ houses, much preferring that mode of transport to the tube, where there was nothing interesting to see.

A recent walk across my local park roused memories of the summer Sunday afternoon when we took her for a picnic whilst we listened to a brass band. Switching on the radio and hearing Bryn Terfel singing reminded me of when I took her to the Royal Festival Hall for a live concert given by the Welsh bass baritone. Mum had always loved classical music and especially opera. As her legs weren’t carrying her very well by then I drove her to the South Bank, where the disabled car park was full. So I dropped her off with strict instructions to wait for me, or to go to the box office to collect our tickets. When I arrived back after parking the car she was nowhere to be found. I hunted high and low through the foyers before deciding to look for her upstairs. As the lift doors were closing I caught a glimpse of her and dashed back down the stairs before again taking the lift up with her. By then the concert had started and I also realised that our seats were in the auditorium, which would have been difficult for her to reach. Luckily a member of staff found us an accessible box, from where we had a marvellous view and she could enjoy the music in comfort. Sadly as her illness progressed she lost interest in music, including her favourite radio station, Classic FM, or Classical FM as she called it.

There are so many memories that can be summoned up with very little prompting. Listening to all sorts of music often takes me back to occasions when she made comments, such as how the Beatles were a flash in the pan and pop music was a load of noise sung by men who could do with a good wash and a haircut. I can still see her getting to grips with The Twist, although she preferred ballroom dancing and loved her Cha Cha Cha.

I will never forget her. There are too many memories to be carried into the future. Even now they are far less painful and I can talk about her and some of her expressions and idiosyncrasies and smile. She was never perfect, but she was my mum and is still a part of me.

How do you reason with somebody who has dementia?

Published 30/08/2014 by damselwithadulcimer

When the Community Matron visited mum she made a few suggestions and recommendations, one of which was to provide a hospital bed. Mum eventually agreed and said bed was delivered this week. I knew I would also have to dispose of the double bed that was already in situ and arranged for it to be collected by a charity shop, with the proviso that the mattress bore a fire safety label. The first problem was to get mum out of bed long enough for somebody to locate the tag, which proved impossible. I assumed that the necessary information was there as the mattress was only a few years old.

Problem number two was to coordinate the collection and delivery so that mum wouldn’t have to spend too long out of bed. This was further complicated when the hospital bed was delivered a day later than it should have been, meaning that the switchover would happen on the same day. Delivery was promised for some time between 10am and 5pm and the collection was to be during the afternoon. I agreed with one of the care agency staff that she would stay with the carer until I arrived, except that I was held up by a few minutes. That gap was when the people turned up to collect mum’s bed, and she flatly refused to vacate it. When I turned up they had been unable to wait so mum was still tucked up cosily.

A few minutes later the man from Medequip appeared with the new hospital bed. How do you convince a tired, frail person that she must get out of her bed so that it can be removed and replaced with another one? More than that, how on earth do you argue with somebody who has dementia? It’s impossible to reason with a person who doesn’t appear to understand what you’re telling her. We played the same loop over and over again: ‘Who decided I should have a hospital bed?’ ‘You agreed to the nurse’s suggestion mum.’ ‘No I didn’t.’ And so we went round and round in circles as if we hadn’t already had the conversation. She told me to go away, to go home, and she told the van driver to throw me in his vehicle and get rid of me. Ever conscious that he had other deliveries to make I kept pleading patiently with the patient. Eventually I persuaded her to leave her bed; the carer and I each took one arm and we eased her across the room and into her armchair.

Her old bed then had to be taken apart and stored in the lounge while he brought in the new one and assembled it so that we could make it up and get her into it. I was so thankful that he was able to stay long enough for me to convince her of what needed to be done, and also that he helped move the old bed into the other room. Unlike Blanche Du Bois I don’t often depend on the kindness of strangers, but I was certainly grateful for it then. More than anything I was determined that she would be transferred to the new bed and that his time wouldn’t be wasted.

Of course there was still the problem of disposing of the old bed, which was now taking up a great chunk of the lounge. The charity I contacted to collect it the following day declined it when they saw the stains on the mattress as mum has managed to upset so many drinks in bed. However I phoned her local council who have charged me an older person’s fee to dispose of it next week when they come to empty the bins. I will just need help to get the two sections of the divan, and the mattress outside and then we will be able to get back to some kind of normality.

More than anything else I cannot believe that I have actually imposed my will on my mother. She has always got her own way and has never done anything she hasn’t wanted to do. I have never before stood up to my mother, argued with her or answered her back. I wonder if I’m finally growing up.

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.

 

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?

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.