All About My Mother

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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.

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

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.