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.
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.
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
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.
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.