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In last week's Carer Tips, I looked at clothing-related issues in the earlier stages of dementia. At this point, the person you're caring for is still making choices. Even if the choices are unusual, my advice was to learn to go with the flow - to find little ways to make life easier for both of you, certainly, but not to become controlling.

This week, we'll roll forward to the time when choice is no longer ... a choice. Even when you take out two pairs of shoes and ask 'Which ones shall we put on today?', it's all just too confusing for your loved one. Now it really is up to you.

How long will it be before you reach this stage? It might be fairly quickly, as it was for us - 4 years after diagnosis and only a couple of years after Lena started to need help getting dressed. Or it might be 10 years away. It's different for everyone, it seems.

The main themes of this post are comfort, dignity and convenience. We'll take a look at inhibition too. And I'll explain why I believe that matters of personal care like this should stay in the hands of a trusted family carer for as long as possible, rather than being assigned to an outside care agency. 

But most important of all is empathy.
EMPATHY: the capacity to understand or feel what another person is experiencing from within their frame of reference, i.e. the capacity to place oneself in another's position.
Empathy, it seems to me, is the key to good dementia care. Whether we're talking about clothing, or fitness, or safety, if we can put ourselves into the mind of the person we're caring for, to try to feel what they're feeling, then we're more than halfway there. 


Comfort

From the very early days of dementia, Lena seemed to be much more sensitive to temperature change, particularly cold, than she had been before. I remember a time before diagnosis: it was an early autumn evening, warmish it seemed to me, when we'd been visiting friends in London and were walking back to the Tube station. A hundred times on that 10-minute walk, Lena told me she was cold, over and over again. She could certainly express her discomfort.

In last week's post I wrote about Lena's favourite fur jacket. In those early days, she was never knowingly underdressed. She knew how to fix her discomfort.

But as dementia advances, people can lose both abilities: to express their discomfort and to fix it.

Once or twice recently, as summer turns to autumn and the house cools down, I've found Lena sitting on the edge of the bed, shivering. The problem is that she's cold, but she hasn't told me. Perhaps she's forgotten that I'm working in the next room. And it doesn't occur to her that putting on an extra sweater would solve the problem. Even if she did, she wouldn't know where to go looking for it. So it's up to me, the carer, to anticipate. If it seems a little chilly to me in the house today, I have to assume that Lena's cold and dress her accordingly.

Let's look at what's going on here:
  1. Observation: I noticed Lena shivering. Carers need to be constantly on the alert for problems.
  2. Analysis: Why was she shivering? Sometimes the reason isn't the obvious one, as we'll see in my next example.
  3. Action: Fix the problem.
  4. Deduction: What have I learnt? Is this part of a pattern of behaviour? How can I predict when the same problem might crop up again?
  5. Procedure: Put a strategy into place to minimise discomfort, to prevent problems before they arise next time.
  6. Repeat: Has it worked? Keep watching.
It's a simple, obvious example, but this is the science of empathy - almost like those experiments we did in the lab at school when they were trying to teach us the scientific method: observation -> question -> experiment -> results -> hypothesis -> reiterate.

In this second example, you'll see how I sometimes got it wrong.

As we left the house, I noticed Lena was limping. Generally, she's in pretty good shape, physically, but intermittently, she seems to have a hip problem and her balance isn't as good as it used to be.

- Is your leg OK?

- Yes. No.

- Where does it hurt?

She pointed vaguely to her stomach.

- No, your leg. You're limping. Is it here?

She nodded as I pointed to her right hip.

- Are you OK? Shall we go back to the house?

She shrugged.

I decided we'd try a little further. Maybe to the next corner, then I'd make a decision.

As we continued, the limp became more pronounced. And surely it was her left foot she was dragging, not her right. Could it be something in her shoe? We'd had that problem before.

- Shall we have a look in your shoe?

- OK.

I crouched down, and she put her hands on my shoulders, as she's learnt to do, to keep her balance as we change trousers or shoes.

- Lift your foot then.

- OK.

But her brain doesn't send the signal down to the leg, and it stays locked straight, foot planted firmly on the ground.

- Come on then. Lift up.

And I gently try to unlock the leg, taking care not to topple her over with too much force or a sudden movement. Ah, now there's a connection, and the foot comes off the ground a couple of inches. I can slide the shoe off. I turn it upside down to empty it, but there's nothing apparently. Or was that something small that dropped out? Put the shoe back on.

- There. Is that any better?

Lena puts her foot down to test it.

- Yes. Better.

Good. That's what it must have been then - a stone. We set off again, but after a couple of steps she's limping again. It's worse than before. So I make the decision to head back home.

I was planning to call the doctor, but the next day, Lena was miraculously healed. It was only the day after that, when we were getting ready to go out again, that I realised there was a little tack in the sole of her shoe, just protruding through the insole.

It can be hard to get it right when the person you're caring for can't tell you how they're feeling and is incapable of sorting out the problem themselves. But next time I'll add a new check to my list. And those shoes ... aren't the soles wearing a little thin now? Time for a new pair - perhaps a bit more robust.

Dignity

The same inability to read and communicate your own body signals in the later stages of dementia raises huge questions of personal dignity. All the evidence I've seen points to the fact that you don't lose your sense of self-pride - you struggle fiercely to hang on to it.

I make the mistake of handing Lena a big cream bun and letting her get on with it. i leave the room for a couple of minutes, but when I come back there's cream smeared all over her hands and her dress. It's no big deal - at least, not for me:

- Look at you. What happened? Did someone come and throw a bun at you?

- No. What are you talking about?

- Look. Here. All this cream. It wasn't you, was it?

- This? No. Of course not.

The Lena that Lena still knows couldn't possibly have made all that mess. She was indignant that I would even laughingly suggest it.


But if a little extra washing was no big deal for me, the prospect of incontinence was. I knew it could happen with dementia. We've always enjoyed a frank open relationship, but every relationship has its limits. There are some areas that are just out of bounds. How would I deal with incontinence if it arose? Not very well, I suspected. And how about Lena? She'd absolutely hate this hammer-blow to her dignity.

Well, sure enough, the time did come. It started around 18 months ago with small night-time accidents. My fears proved correct. It wasn't fun for either of us. Lena was hugely embarrassed, and I didn't enjoy the washing, the cleaning, the bedding changes. So many times, I'd hear myself complaining:

- Why, Lena? Why can't you just tell me?

As if she could!

But it turned around when I started trying to imagine myself in Lena's place. What if it had been me? How would I have felt? Utterly humiliated, that's how. This realisation was the first step in putting empathy to work. How could I fix it? Well, it always happened in the middle of the night. So why not set the alarm to wake Lena in the middle of the night, to use the bathroom. Or, a better plan: I usually did my writing in the evening, after Lena had gone to bed. So why not write till 2, then wake her? And, in case of further accidents, why not get a couple of waterproof mattress covers?

The biggest change though, was in my attitude to Lena herself. It was no more her fault than it was when my kids, when they were babies, soiled their nappies. We didn't blame them, of course we didn't. In fact, changing the nappy could be a precious time, just me and my child, alone, face to face, talking singing, laughing. Carrying that thought with me each time changed the experience for both of us. With no blame, there was no need for defence. Turning it all into a game - pulling faces, saying a rhyme, singing a song - took away the embarrassment we'd both been feeling.

My solutions increased our wellbeing, but they didn't solve the incontinence problem. It began to happen during the daytime too, and the time came when I decided it was time to start using incontinence pants. I took the first pair out of the packet and just knew we were going to have a problem. They looked big and puffy, just like a baby's nappy. For a couple of months longer I held off, dreading Lena's reaction when I showed her what I was proposing. Eventually though, I decided that the time had come; we were planning a long day out, and Lena would surely be grateful for the extra protection. Without saying a word, I just held them out for her legs to climb in, cursing the crinkling sound they made, braced for a barrage of complaint and protest.

- Come on then. One leg ...

I gently tapped the leg, to remind her which one went into the hole I was presenting.

To my great surprise, she just stepped into them without a word as I held them there. It was easy. Why? I can only think that it was because we'd already had several tension-free months in the bathroom and Lena had come to trust me, not as a husband now, but as her personal carer. So this was all part of the normal routine.

I was tempted to joke about how she looked, but thankfully managed to suppress the thought. And I never once used the word 'nappy'. Empathy again. How would you feel if someone laughed at you wearing a big nappy?

By the time I'd got the trousers on, nothing looked different at all. And thankfully, when Lena sat down she didn't crinkle.


Let's talk about inhibition. When carer and cared-for are in a married relationship, there generally won't be too many inhibitions. But it might often be different if the carer is the child of the person with dementia. Apply the empathy test again. If your children were caring for you, how would you feel about being naked while they showered you? One of our newsletter subscribers, Barbara Lewis, has come up with an answer.
 


Barbara calls this a Shower Drapron, and describes it like this: 'It simply drapes over the wearer and covers everything that it needs to, whilst the lightweight fabric is light enough to allow water through and is easily lifted to wash underneath. It comes down to the knees at the front and to about waist length at the back for easy, seated showering. Available in a range of attractive printed patterns, it features a simple magnetic fastening at the back.'
There's a Drying version of the Drapron as well, a Dining Drapron ( - could be useful the next time I serve a cream bun), and several everyday garments, all designed with dementia in mind. For more details, go to Barbara's Limon Attire website.
Notably missing from this discussion is any reference to the clothing issues carers may face with men. If you'd like to offer advice from your own experience, please let me know - write to alan@carecombine.org
Convenience

One of the things that impresses me about the Limon range is how well the clothing items appear to have been thought through from the standpoint of dementia. No sleeves to struggle into, a simple metallic clasp at the back, no straps ...

As dementia has progressed, I've found myself trying to simplify Lena's wardrobe, to make the clothing as uncomplicated as possible. I mentioned in Part 1 how (and why) I learnt to avoid shoes with laces, replacing them with simple slip-ons. Elastic is often the answer. On shoes, but on trousers too, so that we can get them down quickly if there's an emergency. I avoid jeans these days, because the narrower cut and the thickness of the material makes it awkward to get them off. Similarly tops with narrow sleeves and delicate material are a no-no because it's easy to rip them as Lena struggles to locate the hole for the arm. I abandoned bras a while ago, because with my poor eyesight I could never find the clips. What works far better is a simple base layer - I'm lucky because that suits Lena's body-shape too.

All these changes help me - but they help Lena too, because if I'm struggling to get clothing on or off, it creates tension, and that transfers from me to her very quickly. Good care is the removal of tension.

But changing the wardrobe doesn't mean throwing out style. Even now at this advanced stage of dementia, perhaps especially now, it's important to keep Lena feeling good about herself. As Barbara put it in a note to me the other day:

'Everyone likes a compliment and to feel good, even in the late stages of dementia. My mum would always smile when greeted with 'You look great today'.

A Final Word

In the UK, dementia carers are often invited to a Carer's Assessment, to see how well they're coping with the pressure of care - there's no doubt that when care becomes a full-time responsibility, there's enormous pressure. After the Assessment, the Carer may be offered support in the form of domiciliary care: a professional care worker may come to the house for 15-30 minutes a couple of times a day, to help give support with the functional needs - including washing and dressing.

In my view, this kind of support is not what carers really need. In the early stages of Lena's dementia, I thought it would be hard to cope with the kinds of activities I've described in this article (just as before I became a father, I had no confidence at all that I'd be able to cope). But now that it's come to it, I'm managing pretty well - particularly now that empathy is in the frame. What's much harder is filling the long spaces between the functional activities, lifting our daily lives beyond the level of the humdrum. 

But for the person with dementia who lives at home with a family carer, I can't see the benefits of domiciliary care at all. I'm not suggesting that the agency care workers are bad at their job. But building empathy and trust takes time - and that's a commodity in short supply for the itinerant care professional, who always has a next client to see and a deadline to meet.  It's the economic model of care, value for money and all that.

The family carer knows far better how their loved one likes to dress, how they like to present themselves. They'll know what kind of humour will go down well when dressing gets tricky. They're better able to pick up on those almost imperceptible changes of mood, the warnings that something's not right. Because they know the person they care for so well, they'll know what dignity means to them. And together over time, they'll have built up little unspoken routines that they both understand - the hands on the shoulders so as not to lose balance as they step into the trousers, the little touch of the leg that means it's time to lift the foot up and into the shoe. 

And that's why the focus of our Bine campaign is about filling the long gaps in the day with meaningful activity, about giving carers the daytime hours to take a break from care or to stay at work and continue to make a living. This will allow those they love to live in a home setting for longer, much longer. And the start- and end-of-day tasks - getting up, washing, getting dressed, eating - will stay in the hands of those who know them intimately, who are best placed to empathise.
In next week's Carer Tips: Exercise
 
Is there a topic you'd like us to cover in Carer Tips?

And would you be interested in a discussion group, where you can have your say too?

Let me know at alan@carecombine.org.
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