For months I’ve been acutely aware that I’ve neglected my blog. Why pay for a domain name and not post? Life seems to be so busy with family, volunteering and continuing to work part-time. Not to mention the prevarication brought on by just sitting at your laptop, reading emails and posts, responding to them and then uploading items that you think will interest others. What on earth happened to all the leisure time we were promised for the 21st century? Or perhaps it’s more a case of employing better time management skills.
Six months ago – I can’t believe we’re almost halfway through 2016 – I realised that I’d allowed myself to fall into some kind of semi-hibernation. Mum had been gone for well over eighteen months, and it seemed to be taking a long time to adapt to a life that didn’t involve worrying about, and caring for, her; a period spent constantly on tenterhooks, wondering when the next phone call would alert me of another fall, or an urgent summoning of the paramedics.
So, since the beginning of this year I have made attempts to get out more into the world, or more precisely to go to London, on my doorstep. Of course I’ve kept up with friends (well, to a certain extent) and continued with my volunteering, almost as if I need to care for others as I no longer have mum. But I’ve also made a point of visiting more galleries and exhibitions, especially when I realised that I was paying annually for my Arts Pass card, but never using it and therefore not saving myself the money that I could. I’ve got partially involved with a theatre going group, so am able to see plays about once a month, and now actually have others to chat to during the intervals. But I’ve also managed to get myself back into reading: my first and forever love. If I’d never acquired a passion for reading I would never have improved my own writing skills.
Currently I’m working my way through Elena Ferrante’s Neapolitan Novels. With only about 100 pages to go before I finish the final book, The Story of the Lost Child, I’m in an ambivalent state. I can’t wait to get to the conclusion, but will also feel bereft to have reached the end of a saga, spanning some five decades, that examines the friendship of two young girls as they grow and mature into older women, as well as painting a broad sweep of Neapolitan life with its background of politics and social change.
So the evolving Sandra is now going out to meet one of her daughter’s for a bite to eat, and will then be attending a thank you party for one of her volunteering groups. I promise to come back very, very soon.
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.
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.
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?
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.