Dementia

All posts tagged Dementia

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.

Elizabeth is Missing by Emma Healey

Published 05/02/2015 by damselwithadulcimer

Elizabeth is missing

Throughout my mother’s final illness I was under more stress than I realised and lost my habit of reading. I just felt unable to concentrate, and was definitely too tired to read in bed at night. It’s taken a few months, but I’ve now bought a pile of books and intend to make up for lost time.

I had read reviews of Elizabeth is Missing and decided to buy a copy as it seemed to deal with the subject of dementia, something I still feel very close to.

Emma Healey writes as Maud, an octogenarian who has memory problems; the word dementia is never mentioned although the symptoms are clear. As a former carer for somebody with dementia I have talked with others about trying to imagine the experience and Healey makes a very good job of trying to get into the mind of somebody with the forgetfulness, confusion and anxiety that are part and parcel of this cruel illness. Maud’s obsession with trying to find her friend Elizabeth swoops and swirls around the disappearance of her sister Sukey more than 60 years before the narration of the novel.

Elizabeth is Missing crosses genres: it is part detective story, part reminiscence, and part a sad coming to terms with what can happen to us as we get older. The narrator’s obsessions with planting marrows, buying tins of peaches and looking for Elizabeth are juxtaposed with the shreds of her life as a teenager after the war, a time of austerity and rationing and buying her first lipstick. Above all it is a tale told by an unintentionally unreliable narrator with a Miss Marple like instinct for fathoming out an unsolved mystery.

You will be satisfied and unsatisfied, moved and touched by Maud’s story. And if you have had experience of dementia or Alzheimer’s you will recognise a journey that you have experienced as a co-traveller to a place that you hope you will never visit yourself.

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.

When the Old Man’s Friend Came to Call

Published 10/09/2014 by damselwithadulcimer

The Respiratory Team paid one of their routine visits to mum at the beginning of the week and were concerned enough to feed straight back to the Community Matron. Sarah put in an appearance later in the day, listened to mum’s chest and diagnosed the beginnings of pneumonia. Luckily we had antibiotics and steroids in the flat just in case of such an eventuality, but one of the inhalers had run out over the weekend, so Sarah set off to the GP’s surgery to make sure that the relevant prescriptions were issued and that mum’s doctor knew she was unwell.

Having smugly congratulated myself on producing the standby medication so promptly I was surprised and worried to find the box of Amoxicillin was empty… I made a further frantic phone call to the GP, sharing Sarah’s earlier frustration at having to go through various menus, to ensure that a script was sent direct to the pharmacist and then despatched to mum before the end of the day. Trust me to choose that day to visit without my car.

Whilst I was worrying about the missing antibiotics I decided it was time to move the furniture in the bedroom. We had been advised that the bed (with its rubber mattress) should not be alongside the radiator, so Emma, the carer, and I emulated Pickfords removal men whilst we dragged chairs and chests of drawers out of the room in order to swing the bed around. Initially we placed it facing the wrong way, where the telly would not be visible, so we had to disturb mum again, much to her annoyance. After plugging the mattress and the control pad back into the wall we found that the pad was doing nothing at all and the mattress was flat. Cue more complaints and moans from the patient. The light was on but it was completely unresponsive at 5.10 in the afternoon when Medequip had gone home for the day. The emergency number that was supposed to be on the equipment was not there and googling for it was impossible given that the flat is in a mobile phone black spot. Although I had no car I at least had my mobile WiFi so was able to get online, find a number and make the necessary call. It was all so simple once I was told how to rectify the problem, but why on earth weren’t those instructions delivered with the bed?

The next day was spent trying not to worry about mum and hoping that she would respond to her medication as the alternative was hospitalisation and we were fully aware that she would not want to go there. I know now that she is doing better, so that’s another mini crisis averted.

Sarah was also concerned that mum has generally deteriorated over the 10 days since she last saw her and that her COPD has worsened so she delivered an End of Life Pack, containing the necessary injectable medication for making mum comfortable when the time comes. She also informed me that she is making an application to the local council for continuing funding. Whether we get it will be another matter, but we are keeping everything crossed. We have been using mum’s personal savings to fund her care and the money is disappearing rapidly; it would be a relief not to have to fret about finances too.

So for now we can wave goodbye to the Old Man’s Friend and hope that the funding is approved and that mum remains stable.

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.

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.

When Mary Poppins came to visit

Published 21/08/2014 by damselwithadulcimer

Once mum had been bedridden for more than a week we began to get seriously concerned and made contact with the GP, who acted swiftly and put one of the Community Matrons in touch with me. Two days later she visited mum to assess her needs. We also decided that it was time for mum to have round the clock care and organised a roster of known and trusted people to stay with her overnight, whilst seeking out a new care agency that would be able to provide continuous daytime cover.

This was all in place when Sarah visited to carry out her assessment. She swiftly took charge, insisted mum mobilise to the bathroom and gave a few pointers to the carers. Mum will now be prompted to take in more fluids, as she is obviously dehydrated, and will be encouraged to try to eat a little more. Food will be given to her, rather than her deciding that she only wants bread and butter. She will also be encouraged to get out of bed, with lots of help. I was amazed when I watched Sarah escort her (plus Zimmer frame) along the hall as I was convinced that she was far too weak to manage. The difference between a health care professional is that they can employ the firmness that a daughter, who has been brought up to be obedient, cannot. Just like Mary Poppins, Sarah is firm … but kind.

Sarah demonstrated her skills and training when she told me that she would be in touch with the GP to ask for a home visit, would contact social services on our behalf, would arrange for bloods to be taken and would also contact the domiciliary podiatry service to arrange a visit. She has also ordered a hospital bed to be delivered next week, so I need to arrange for collection of mum’s double bed. Sarah is a far cry from Hattie Jacques’s matron in the Carry On films, but every bit as capable, knowledgeable and caring.

To complement her input there is also the new care agency. They carried out a thorough evaluation of mum’s medical needs and medication, a risk assessment of her home, wrote out a detailed daily care plan (which was also augmented with Sarah’s suggestions) and asked me about mum’s interests and the work she had done before she retired.

I’m feeling far more optimistic and reassured. Some of the weight and anxiety have been lifted off my shoulders thanks to Sarah and the girls from Insta Care