Frail Parents

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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

Happy pills are here again…

Published 13/08/2014 by damselwithadulcimer

It’s been a long journey since mum broke her hip nearly eighteen months ago, and was then diagnosed with Vascular Dementia earlier this year. At one time I used to visit once a week and we would generally go for a pub lunch or afternoon tea, now I visit twice a week and have trouble finding things to talk about. As time goes on she has less and less interest in the outside world, friends and family and no longer follows her beloved soaps on the telly. Her frailty and disability mean that leaving the flat involves a great deal of effort. An able bodied person would feel tired contemplating the difficulty of getting her ouside and into the car.

Initially Careline, with its accompanying red buttoned bracelet was a safety back up; now it is pressed with increasing regularity and ambulances arrive and paramedics pick mum up from the floor when she has fallen and persuade her to go to hospital when they think it necessary. There are the other occasions when she summons help but can’t hear the responder at the other end, so of course they send in the emergency services as a precaution – what mum refers to as the army and the navy arriving. We’ve given up dashing over when Careline phone telling us that mum has been buzzing: we are aware of our physical and mental weaknesses and the need to try to conserve our strength. As she still refuses to move to residential care, we remain on alert, anxious and worried what each day will bring.

When we were visiting every day after mum’s discharge from hospital with a repaired hip, we soon realised that we couldn’t carry on indefinitely. The almost daily hospital visits, plus more than three weeks of going to her home every day (in my case remaining until she was safely in bed at night) began to take their toll. So we scaled back, in my case to twice a week as I have already mentioned.

I could feel myself becoming tired, ratty, irritable and tearful, but believed I needed to do my best for my mother. Whenever I felt exhausted it somehow never seemed like exhaustion when I moved on to the next level of even greater fatigue. For some months I (who rarely have trouble sleeping) have been suffering from various degrees of insomnia.

I gleefully pounced on the opportunity of taking a course of stress management workshops provided by my local Carers organisation. Believe me it is easy to do the theory, but trying to practise positive thinking, flip the negativity and fit in relaxing meditations is not as easy as you want it to be. We all bonded well and it was therapeutic to discuss our caring roles and their challenges with others in a similar position.

I also attended dementia awareness workshops, which will lead to another regular support group. In addition I have been seeing a counsellor for about a year and trying to work through problems that go back to my childhood and are now compounded with everything else happening in my life.

The final straw was when I needed to visit my GP at the weekend and the waterworks welled up again. She insisted on anti-depressants and I didn’t argue. If they take the edge off the anxiety and the stress I don’t care. This hamster is unable to climb out of her wheel at present, so she keeps whirring round and round and swallows her pills like the good little girl mummy taught her to be.

 

Infections and Hospitals

Published 13/08/2014 by damselwithadulcimer

It’s been a difficult time. When visiting mum a few weeks ago she was having trouble getting out of her chair; I put this down to a mobility problem and helped her up. The following day I had a phone call from Careline (the company that responds to her calls for help when she presses the button on her bracelet) telling me that she was again unable to get out of her chair. Knowing her afternoon carer would be there before me I let it go and hoped for the best. A little later my sister phoned to say that mum had pressed several times (in fact about 12 in total) and that I should go over. When I arrived she was in bed and four attempts at standing up proved futile, so I phoned for an ambulance. She was duly taken to A&E, diagnosed with a UTI and sent home with antibiotics. 72 hours later I had a phone call from a paramedic who was with mum, as she had again pressed for help numerous times. She was persuaded to go into hospital, diagnosed with a chest infection, and remained there for three days.

From our point of view, which was endorsed by her carers and other health care professionals, she really needed to be in a care home. My sister tried to persuade her of the benefits of one we had found not far from where she lives, and that would also allow her to take her cat, her ‘baby’. Still she dug in her heels and insisted she wanted to go home, so back home we went. I organised another assessment with her social worker for the following Monday and in spite of everything he pronounced that she still had capacity and could not be forced to go anywhere she didn’t want to go to. So the two of us continued to operate on high alert with our anxiety and stress levels building, wondering when the next fall or hospital admission would occur.

We didn’t have long to wait before the buzzer was pressed more and more frequently and she was again admitted and kept in for two nights. Her discharge home was not an easy one. She was delivered by patient transport, which was actually a man driving a minibus, and not a paramedic or somebody with any kind of medical training. She beckoned to me with a face like thunder and screamed that she had been waiting since 9 o’clock that morning – it was now about 2pm. I had to help her down to her waiting Zimmer frame, but she was not strong enough to use it to walk into the block and her own flat, so I had to dash back in again for her wheelchair. When I asked the driver if he could just make sure that she was steady until I got back, I was informed by one of the other passengers that he was ‘only the driver’.

By 4am the following day she was again calling for help; an ambulance was duly summoned but she remained at home. Since then she has been more tired and lethargic and when I visited earlier this week she didn’t even have the energy to get out of bed. On the advice of the Alzheimers Society we have bumped up her care so that somebody is with her throughout the night, and we are trying to arrange for care during the rest of the day. At least the presence of another person will stop the panicky demands on Careline, who are often unable to elicit a response because of her poor hearing, so feel they must send another ambulance. One major problem is that the response time can be up to four hours.

We are still working on the idea of residential care, but not sure how on earth we will manage it, especially if she is too weak to get out of bed and walk to the car. In addition the home will initially only assess her during the day and overnight. It is apparent to everybody but her that she needs to be looked after in a caring environment where there are skilled people, friendly faces and nutritious meals. Where there will be somebody to reassure her when she gets worried and confused and above all where she will be in a place of safety. We haven’t given up hope yet, but we have to contend with her independent stubborn streak that makes her too obstinate for her own good.

Mother Doesn’t Always Know Best

Published 24/07/2014 by damselwithadulcimer

As a post-war baby boomer I was brought up and taught by my mother to speak only when I as spoken to, not to answer back and generally to respect my elders as it was implied that they were wiser and had more experience than me. I now know that wisdom does not necessarily come with old(er) age, especially when the senior person has dementia.

Our concerns and worries for our mother are constantly being raised. Within the last fortnight she has been to hospital twice: the first time she was diagnosed with a UTI and sent home with antibiotics, but within 72 hours she had been readmitted. This time she was found to have a chest infection and remained under the care of the NHS for a further three days. Prior to these diagnoses she had been having problems with balance and had been experiencing light-headedness and dizzy spells, which were a huge cause for concern as she has had countless falls over the past 16 months since breaking her hip. On some days we were told that she had been using her Careline emergency bracelet button to summon help as many as twelve times in a twenty-four hour period. Given that she lives alone and that we are both about 15 miles away, which can translate to a driving time of between 40 minutes and up to two or more hours, we are both on high alert. Especially as an ambulance, when summoned, can take up to four hours to attend to her.

Whilst she was in hospital my sister and I were hoping to persuade her to move to a residential home, if not permanently, at least for a week or two. Our belief was that she might lose track of time and be happy to remain in the home we had found, especially as they were happy to take her precious cat Millie. Our optimism was soon dashed by her intransigence. When my sister visited her the day before her discharge she constantly told everybody within earshot that ‘I want to go home now’. We both arrived at the hospital the following day, hoping beyond hope that we could get her to agree to go directly there by ambulance. No way. My mother always gets her own way, and that meant she was going nowhere but home.

Her Friday afternoon/evening discharge was followed by a weekend when her care package was increased to four visits a day and her two knackered daughters refrained from visiting until the following Monday to liaise with her social worker. Although her dementia seems to have increased and she now confuses timescales, insisting that she had been an inpatient for three or four weeks, plus she also seems to be behaving in a more childlike and naive manner, she was still assessed as having the capacity to decide where she will live. At least in her own home she is at liberty to smoke as much as she likes. On the ward she kept repeating that they allowed her to smoke both by her bed and in the toilet. No matter how many times we and the nurses told her it was not allowed, especially as she had an oxygen cylinder next to her bed, she maintained that she had been smoking with permission during the weeks of her stay.

So from now and until she loses that capacity she remains home alone (with four daily visits from her carers, plus about three weekly visits from us) with her cat. She believes she can summon help from Careline whenever needed, although we have tried to make her understand that all they can do is request an ambulance if one is needed. We have also pointed out that if she persists in demanding the paramedics she will be downgraded to non priority and will have to wait up to four hours before they arrive. How would you feel if your frail, octogenarian parent had to lie on the floor unattended for all that time?