What the future holds – moving goalposts

I read this short essay by Justine Brooks on social media today, and immediately realised that she and her mother are probably just a few months – maybe a year – ahead of us on the vascular dementia journey.

“Recently, a friend who has been there said to me, “The thing with dementia is, you have to do your grieving when they’re still alive.”

It’s true. You watch helplessly as the woman who brought you into the world – held your hand, wiped away your tears, was your friend and confidante – slips away, slowly, one week at a time. What you’re left with is a person who both is and isn’t your mother.”

The essay is beautifully (and simply) written. It also happens to say things that I either already recognise, or can imaging happening soon, like this notion of shifting goalposts:

“And yet today, when she really doesn’t know who I am, I’m calm, I’m accepting, I’m not upset. That’s what happens with this disease: it moves the goalposts. Or perhaps that’s about human nature’s ability to adjust to any kind of situation.”

Thank you, Justine.

How long does delirium last?

A short post, but rather shocking.

Today I had a talk with the charge nurse at the cottage hospital. I asked her when would a decision be made about whether my elderly Mum’s confused state is delirium (that may resolve) or her new normal. She told me that the ruling used to be that patients would be observed for a month, then it was extended to two months, and now it’s an observation period of 3 months. She also said that if the patient has some other episode, like a UTI or another illness or infection, the clock restarts. She said that she thinks this is just an excuse for not providing any mental health services for inpatients.

Mental capacity contradictions

Can an old lady with a documented history of refusal of treatment with an anti-depressant really consent to treatment when she no longer even remembers who her daughter is?

Over the course of the last year Mum’s mobility has deteriorated so much that she essentially can only go out of the house if it is to get into a car and be driven somewhere. She also has a degree of dysphasia which frustrates her, as she loves to chat.

Unsurprisingly, she has become quite down in the dumps, but she has some old-fashioned views about mental health and doesn’t admit to depression although her GP saw fit to refer her to the Community Mental Health Older Adults Team. Mum got on well with the CPN and enjoyed her visits but did state unequivocally that she would not agree to be treated with antidepressants even if a formal diagnosis of depression was made.

So far, so in line with Mum’s categorical refusal to be agree to having carers at home. On that issue, even though lots of people think Mum would benefit from carers (including the Social Work key worker and her GP as well as family & friends), Mum has been entitled to refuse the carers – or so the social work people tell me.

Mum has been hospitalised for a nearly two weeks now, having been admitted with severe constipation. She is more confused than ever and cannot tell me when I visit what has happened to her that day (even though I know she has had physiotherapy, for example). The doctors have explained to me that this ‘delirium‘ is common when elderly people are hospitalised.

This morning the doctor told me Mum definitely can’t come home without an extensive care package. So how are they going to get her to agree to it?

After the first week, during which Mum was often tearful, she was put onto an anti-depressant without anyone consulting me, even though the doctors had had a full history from me in which I told them Mum’s attitude to anti-depressants.

Now, don’t get me wrong, if they had consulted me or my brother, we would have agreed that Mum should be treated, but they say Mum consented. She wasn’t asked in my presence, so I don’t know how the question was put to her. I don’t think she was fit to consent; she doesn’t even know who I am some days.

I think this is an abuse – albeit for the ‘right’ outome- of the capacity to consent rules, and as a carer it leaves me more frustrated than ever about what my role is. It seems that the medics can do whatever they like with impunity when they think it is the right thing to do, while the family carer cannot insist on anything at all – in this case a care at home package – even if it is obvious to all concerned that the person is making a really bad decision.

Life in limbo: pass the love on

Things are weird in our house this week; it feels like momentous things are going to happen, but just not quite yet.

Mum was admitted to hospital last Tuesday evening, and she’s still there as I type this. The admission was because she complained of abdominal pain and she was very confused.

When I visited her yesterday afternoon, she is still confused,  but no longer in pain. They want to do a CT scan and see if she has had another stroke, but I guess it isn’t urgent and she has been ‘parked’, really, on a ward over the weekend. I know she’s ‘not herself’ because she is submitting fairly meekly to being there.

The day she was admitted was very traumatic for me (as well as for Mum), so when Mum’s local authority key worker suggested I ‘take the day off’ on Wednesday and not visit the hospital, I readily took that as permission to absent myself. It gave the professionals time to assess what was going on with Mum’s physical and mental condition. I’ve visited her each day since, but I’m not planning to go today becasue her church elder is going – but I feel guilty. I keep thinking about the long boring hours in the ward, with nothing to do and nowhere to go…

It’s a school holiday here today, too, and I am assuaging my guilt about my own mother by  at least being a happy mum here for my son.

My husband and son were away all day yesterday at an event my son was taking part in; so my husband also had a long and boring day doing his parental duty. He brought me home a little box of two chocolates…. for him an unusual and very touching gesture. I’ve decided that the words on the box are an instruction to me on how to cope in this limbo… I’ll just do my best to pass the love on.

 

Thursday is my day off – it’s when I get to go to work

I don’t know how typical this is for carers, but going to work is as good as a holiday for me.

For a few years now, my elderly mother has gone to a ‘lunch club’ on Thursdays. She gets picked up by a volunteer driver at around 10 am, has social time at the club followed by lunch at noon and is taken home again at 2.45. I’ve come to cherish it as my ‘day off’ because it’s the day Mum doesn’t call me in the morning wanting me to go and keep her company or take her out on some errand.

Except that in the last few months Thursdays seem to have acquired a podiatry appointment before lunch club and a hairdresser appointment after lunch club, meaning that my ‘day’ is actually just five hours from 10-3 because both of these activities require me to drive her.

Her vascular dementia is worsening at quite a pace in recent months, and she is now often confused in the mornings, although often by mid-afternoon she is completely lucid. So this morning – a Thursday – she left a message on my answering machine while I was in the shower, sounding befuddled and saying she didn’t know what to do today. There was also a text message from my brother to say she had called him but he was at the dentist. So, I called her back and had an impossible conversation with her like this:

“I don’t know what I’m doing.”

“Your’re going to lunch club today; a driver will pick you up as usual.”

“But I don’t know where I’m going.”

“It’s OK, the driver will take you.”

“But I don’t know where I’m supposed to go.”

“You go to lunch club; it’s Thursday, and someone will take you, as usual.”

After several minutes of this, I said I was going to say goodbye and hang up. Then she said she didn’t feel well enough to go to lunch club. And this is what makes caring for her so hard. I don’t think she does it consciously, as a planned strategy, but she always manages to construct a scenario in which I am supposed to say ‘OK, I’ll come down and spend the day with you.’

But I have a life, too. And on Thursdays I usually do my own free-lance work.

So, I hardened my heart and said, “Well, see how you feel when the driver arrives. I’m working today, so I’ll talk to you tonight. It’s now 1.45 pm and I haven’t heard from either Mum or the lunch club leader, so I guess she must have gone…

 

 

Leave me my name!

“Because it is my name. I can have no other one in my life. Leave me my name!” [John Proctor in The Crucible by Arthur Miller]

My son is studying The Crucible for Higher English so we watched the DVD of the 1976 film last night. The screenplay was written by Miller, so it is reliable as a study aid. As it turned out, John Proctor’s anguish at the end helped me release my own emotion of the day.

While we were away at a university open day Mum had to manage by herself from Friday tea time until Saturday bed time. She was furious (actually she was frightened) at the prospect of her safety net (me) being unavailable, and for a few minutes I seriously considered staying at home, just letting my husband and son go. However, she has her ‘red button’ emergency service and I prompted my brother to call her.

I felt bad about going, but she insists on staying in her own  house, and refuses to have local authority carers, so I hardened my heart and did my parental duty instead of my filial one.

I phoned her on Saturday, early evening, and she said all was well, so we agreed I would go down and see her on Sunday morning. When I arrived I immediately noticed that her large and very heavy coffee table had been moved, but she was not able to tell me how that had happened.

A couple of hours later a local woman I don’t know rang the bell and came in. She said she had just popped in to see if Mum was  all right after her fall last night! It turned out that Mum had fallen on the living room floor and had yelled for help as this woman and her husband passed the window. The door being unlocked (a double-edged sword), they were able to come in and help her up. She was not injured.

Mum didn’t want me to know about this fall. I understand that. But I was gobsmacked to realise she had told me a totally convincing bare-faced lie about not knowing why or how the table had been moved, including that nobody had been in the house (I specifically asked her that).

What happened next, though, has rocked me. Mum was cross that this woman had spilled the beans about her fall, and said to the woman, “I didn’t want her to know; she is vicious.” Who me? What? Where did that come from? The poor good samaritan realised she had caused a problem and beat a hasty retreat.

I was really taken aback by what Mum had said – nothing has ever happened between us to warrant that choice of word. Impatient? Yes. Argumentative? Sometimes. But vicious? I’m actually quite a kind and cooperative person – you know the kind of person who sees the bigger picture and wants the best possible outcome for all (a bit of a utilitarian, perhaps?).

In fact, this is not the first time she has described me using that word; she has said it twice before to my knowlege, once to her GP and once to her elderly care team key worker. [There is another potential blog post on kicking the cat – avoidance and deflection as coping strategies.] I’m now realising she might have said it more often to other people.

This time she has said it to some random person in our very small town, who doesn’t know us well enough to know that Mum has vascular dementia, but knows us enough for me to be tarred with that epithet. The more I reflect on it, the more serious I think this problem is, but I have no idea what to do about it.

Her words hurt my feelings, and I just have to hope they don’t hurt my good name.

Just who is Living Well with Dementia?

Mum constantly asks for my help, but wants it as from a servant rather than a peer; unquestioning and on call.

A facebook friend recently wrote, “I have tended to the most personal needs of my late elderly father, and doing so only made me love him all the more – if that was possible.”

Here in the UK we have a ‘national government strategy entitled Living Well with Dementia that aims to promote “The practical things people with dementia can do to live well now and make plans for the future.

I’m happy for my facebook friend, and glad that there is official awareness of what can only be a growing issue in our society. But…

My truth – which I can admit in the anonymity of a blog – is that I do NOT love my elderly mother more through caring for her in her infirmity. Her personality is crammed with interesting and admirable quirks – sociability, creativity, vigilence, determination, eccentricity – which, when magnified by physical infirmity and vascular dementia, become an inability to be alone, mad ideas, neurotic anxiety, bossy stubborness, illogical unreasonableness – and make her a total pain in the pants.

She constantly asks for my help, but wants it as from a servant rather than a peer; unquestioning and on call.

This morning she phoned – sounding puzzled – to say that her hall and living room were covered with ‘mess’ and that she had spent ages trying to clear it up but couldn’t manage it, so could I come down as soon as possible to sort it out. She reckoned a dog must have got into her house somehow and had ‘messed’ on the carpet. My heart sank as I feared that maybe she had had a bit of diarrhoea and had trailed it along the floor as she tried to reach the loo. So I rearranged my day, gathered some cleaning materials AND GLOVES! and headed off to do my duty.

What a relief when I discovered that the ‘mess’ was a trail of crumbs from a Choco Leibnitz biscuit that must have been in her lap when she stood up, fallen on the floor and been crushed underfoot.

20922_choc_leibniz_milk_w360_hauto_w360_hauto_w360_hautoWhile I was sweeping up the crumbs and hoovering, her friend from sewing club called to arrange to pick her up this afternoon; after a short conversation we agreed that I would take Mum to the sewing club today and the friend would bring her home. This was a good compromise as the friend was going out for lunch today and they do me a big favour every week by offering this lift.

Then I made a mistake: I should have left after cleaning up and gone back three hours later to give the lift, but (stupid Stupid STUPID) I stayed. By sewing club time I had found her glasses down the back of her bed, cleaned the bathroom floor, picked up all the beads from the string of beads she broke last night, made her a good quality lunch and – here’s where it all went wrong – discovered her folding up sheets of kitchen paper to wear as pads inside her pants.

Well, this is where my patience ran out. NOT because she has a continence problem; but because she won’t use the appropriate products. Does she have access to suitable products? Yes. Does she get them free on the NHS? Yes. Are they delivered to her door? Yes. (There is another potential blog post along these lines on the topic of Mum’s hearing aid.)

tena-comfort-mini-plus-packFour  years ago when she had a major stroke she started getting a supply of pads because although she is continent her extremely poor mobilisation means it takes her a very long time to get from her chair to the toilet, and as a result sometimes the wee comes out too soon. A few months ago she told me she had tried to reorder her pads but that they had told her she wasn’t on the list. She didn’t understand and asked me to find out how she could get her supply of pads. Let me repeat SHE ASKED ME TO FIND OUT.

[As an aside: I discovered that the local NHS Trust had changed its supplier and that, as Mum had not placed an order for more than six months, she had been taken off the list. The new supplier required her to be re-referred by her GP practice. This involved a complete waste of the district nurse’s time in doing a 3-day continence chart for Mum – which Mum was totally incapable of completing, but which needed two visits by the district nurse to deliver and pick up what was essentially a made up form. “Just put down plenty of ‘wets’, ” the nurse told me on the phone.]

The ensuing argument can be summarised as Mum assserting that the pads don’t stop the wet but two folded pieces of kitchen paper do, and that I am basically the worst daughter in the world.

What she really wants is a Lady-in-Waiting who has no identity of her own and whose opinions are never to be heard let alone given any consideration.